# So embarrassed please help



## GilmoreGirl (Feb 26, 2017)

This is very embarrassing for me, and I really would appreciate if people could refrain from any joking or judgement. I really just need help

When I was twelve I developed an eating disorder and I believe this is how all of this got started. I developed a need to stimulate bowel movements with a gloved finger to relieve my feeling of bloatedness. I'm now 25, and recently got a chronic anal fissure (probably from doing this) and other damage to the area including possible perineal descent and hemorrhoids. I have all the will in the world to stop doing this - but it seems impossible. I'm plagued with never ending stomach pain, cramps, bloating, and gas that won't pass unless I do this. I have been able to go naturally using laxatives, and try to use a bulb enema or suppository when I can, but my body is adapting to these things and I'm left in more and more pain - the only thing that relieves the pain and discomfort is using my finger to stimulate a bowel movement.

I'm going to see a colorectal surgeon this week and I would like to talk to him about this, but I'm so scared of being judged. It's all from a silly mistake I made to start doing this when I was young - I couldn't even tell you how or when exactly it started. I can't go anywhere or do anything after eating or in the am until I have a bm, the pain and cramping is so bad.

There is nothing at all related to sexual gratification involved in this - it's simply a way of relieving pain for me, and has sadly become necessary in order for me to live my life. The longer it has been since I've stimulated a bm, the worse the pain and cramping gets.

How can I bring this up with him? I've seen people on other forums with similar issues, but I feel like a horrible freak. I'm suicidal at this point because I feel that I will be stuck with this forever, my life is centered around bowel movements. I just want to be a normal person. I've really been trying not to, hoping the pain will pass and I'll go naturally, but the pain gets worse and worse, I literally cannot work or go to school at all at this point.

I was thinking on writing it down and giving it to him so I don't have to say it. I don't know I'm just so scared and need some advice.

Thanks for your help


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## annie7 (Aug 16, 2002)

oh i am so sorry you feel this way--really--my heart goes out to you. i can understand why you feel embarrassed about it but please don't be. there are a number of people who have to rely on digital bowel stimulation in order to go. it's nothing to be ashamed about. i've read posts from people who do this. also people with spinal cord injuries have to do this in order to have a bm. and it's also recommended in bowel retraining programs. there are digital bowel stimulators for sale online. and yes, of course it would be nice if you could have a bm without doing this but if you have to do it, that's ok. in the world of constipation, we do whatever we have to do in order to go.

as far as talking to your colorectal surgeon about it--please don't worry about being judged. doctors--especially c/r docs--have seen and heard it all. there's nothing they haven't already heard. possibly you could discuss this with his nurse before you see him, and she can put it in your file so he can see it there before he goes in to see you. i understand your anxiety about talking to him--truly i do--but please know that you are definitely not a freak or anything like that--you are just doing what you need to do to go. i'm sure he's had other patients who have also had to do this.

my life was centered around bowel movements, too. and, like you, i just wanted to be normal. but we do what we have to do. and hopefully things will change. there are a number of C drugs in the pipeline so there's always hope...

good luck with everything. pm me if you ever want to talk. take care.


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## GilmoreGirl (Feb 26, 2017)

Thanks so much annie7 for your message and kindness, I'm crying now after reading it. I'm definitely going to tell him all because I can't go on like this, and am in the process of waiting for a gastroenterologist to take me on as a patient, so the CRS is my only hope at least for now.

I feel like doing this for so many years may have caused my gut pain...like if I don't stimulate things to move every few hours then nothing moves at all and I have trapped gas and pain. And I can't stimulate anymore because of the rectal pain that I also probably caused...I just hate that this happened and I'm ashamed beyond belief, but I've tried so hard on my own to live naturally and it's not working.

Are there medications that would keep things moving along all day? I take senna before bed and it helps but my body is adapting to it, and by 3 or 4 pm I'm back in pain and all that relieves it is a bm, which only ever happens in the am with laxatives

Again thanks for your message, you're so kind and it feels wonderful to not be judged for this


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## annie7 (Aug 16, 2002)

oh, thank you so much for your kind words...

yes, do talk to your crs. hopefully he can get to the bottom of why your gut has slowed down so much and what can be done to help your motility. have you ever had a sitz marker test (colonic transit study) ? i think there might be meds that can help keep things moving all day. meds like reglan, which is a gut motility stimulator--although that particular med can have some nasty side effects. still, i know someone here on the board who (quite a long time ago) took it and it helped relieved her constipation. and then of course there are the C meds like linzess, amitiza and trulance.

i was dx'd with colonic inertia and some other problems and like you, i tried to live naturally without taking laxatives etc but i just couldn't do it. my colon wouldn't work on it's own and i needed laxatives to go. i did try the digital stimulation but for some reason i couldn't get that to work for me. i also have pelvic floor dysfunction, so maybe that's why digital stimulation didn't work.

my body started adapting to senna so i used to rotate my laxatives so it couldn't adapt so easily. i rotated senna, dulcolax and cascara sagrada. and i also took milk of magnesia along with the stimulant laxatives which helped me go better. (don't take milk of mag within an hour of taking dulcolax or you'll get cramping.) i didn't like taking all those laxatives but it was the only way i could go.

i can see why the digital stimulation causes you rectal pain because of your fissures--that must be miserable.

good luck with your crs appointment. keep me posted. i do hope things get better for you. wishing you all the best.


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## GilmoreGirl (Feb 26, 2017)

Thanks Annie7.

I have my appointment with the CRS Thursday and with my gp that same day. I'm trying to plan out what to say but I've had such a bad experience with my doctors so far that I'm nervous about how I will come across. My last gastro found nothing during colonoscopy/endoscopy/small bowel MRI or stool tests...but I was taking antibiotics, morphine and strong anti - inflammatories at the time, so I'm not sure about any of his results. I went into my appointment with him with my parents, because I was in extreme pain from my gut and fissure (like 10/10 pain) and was taking pain meds that made me woozy and not so coherent. He I think took that meeting as a sign that I was not mentally stable, and since then was convinced that anxiety was causing my symptoms and that I was exaggerating my pain. It was a very hurtful meeting and he was very rude to me - thank goodness my parents were there. I had a much better follow up appointment with him where he seemed willing to treat me, and gave me a trial of amytriptyline for three months, and scheduled an appointment for after the three months to follow up. Two days before the appointment his office phoned to cancel, saying he could not help me. They would not say that he was refusing to treat me, but he was. It was devastating for me and now I'm nervous to give the wrong impression to any doctor. I have a better gp now, who is trying to find me a new gastro, but she says it is unlikely to happen since I have had so many tests done already.

I want to cover my bases and ask my gp about h pylori, SIBO and constipation meds, and maybe try treating one of these things. I would also like to ask her about the transit tests you describe, but I don't want to make them think badly of me, like I'm overly anxious or whatever.

And to note, I've seen two different psychologists over several months, and even tried hypnotherapy for this - I meditate and exercise daily yet still the pain comes. The psychologists don't think I have undue anxiety - just a normal amount for a person in my situation.

The pain that bothers me the most is worst in the early evening, or right after eating. All of a sudden in the evening I get very bloated through my whole belly and tight in my chest (whether I eat or not. I have pressure in my chest and a feeling like a stitch in both my sides. It feels kind of like I need to have a huge burp, but nothing happens and I don't really get relief when I do burp. A bowel movement used to always relieve my pain and discomfort - but now it doesn't seem to always do that. And the pain is more upper gastro than lower recently. I also burp a lot (and large burps not small ones) despite taking enzymes, peppermint capsules, gas x, reglan, etc. I really suspect I have h pylori along with the transit issues I've caused - I've never had upper gastro symptoms before taking naproxen and morphine for a month, and I was not eating much at the time (because the fissure was so painful and the morphine made me throw up). I know strong anti inflammatories greatly increase the risk of h pylori. I just don't know how to get this across to my doctors without them thinking I'm researching and obsessing and crazy (I'm also a biology/physiology grad student so I know too much to begin with).

I already take reglan and I think (but I'm not sure) it has helped. I think that's a great idea to rotate the laxatives. I don't think I need a stool softner as things are soft still.

I also have pelvic floor dysfunction and see a pelvic physiotherapist about it - probably something I caused with this habit. Everything used to relax and I would be able to go easily, now as soon as I try and stimulate at all everything tightens right up and clams shut.

Anyways, sorry for the rambling post. I just am scared about how to present this to the doctors so they take me seriously. And I also wanted to get all my symptoms across - I've read of other people using digital stimulation but it's not necessarily associated with the pain I have - so I don't know if they are the same issue or different ones.

I can't do anything past 4 pm most days. It's exhausting and I've lost so much from this. I had a boyfriend before all the fissure business happened and I miss him so much - I just want to hang out with him in the evenings when he's done work. But I feel so bloated, painful, and uncomfortable all I can do is sit with a heating pad. Every day. I'm fighting the depression this is causing, and I'm positive when I feel good, but every evening when I feel sick again my mood crashes.

Thanks to anyone who takes the time to read my post - sorry it's so long. I'm just exhausted from living like this and I can't face a future where my every decision is limited by my gut


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## willow_tree (Jun 2, 2017)

I just wanted to chime in and say that I'm thinking of you, and I hope you find answers and ways to help, soon! No judgment here, please don't be ashamed of anything. All you're searching for are ways to make yourself feel better, and what we are all dealing with can be extremely debilitating on different levels.

I'm 27, and my symptoms have been so bad at times, I've felt like my life was over at such a young age. I'm struggling with anxiety and depression, but I'm working with my GI and a therapist to help me along.

Stay strong. You've got a community here. And please keep us posted!


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## annie7 (Aug 16, 2002)

hi gilmore girl

that was really rotten of that gastro doc to drop you like that but perhaps you are better off without him. he doesn't sound like a very proactive or compassionate or knowledgeable doctor. he should have listened to you and done everything he could think of to help you. and he should have taken into consideration all the meds you were on at the time.

i wonder why your GP thinks she won't be able to find you a new gastro because of all the tests you have had. tests are good--they help a doc figure out your problems and diagnosis and treatment plan. i had lots of tests and when i saw a new gastro and also my cr surgeon, they both found them quite helpful.

it's helpful to make out a list of everything you want to talk to your doc about. i've found that doctors--the good ones, at least-- really do appreciate this--it helps them. and it shows them that you are proactive and organized and have thought all this through--not obsessing and crazy. like you, i also researched everything and found that my docs appreciated that.. your gp sounds like an understanding person so i don't think she will think badly of you for asking her about h pylori, sibo, constipation meds and the transit test etc. on my first visit to my gastro doc, i told him (nicely, of course) that i wanted to take a sitz marker test (transit study) because for years docs had been telling me that i "just" had ibs but i really felt that there was more going on than that. he agreed to the test and sure enough, i had a lot more going on than ibs. i also read up on the different C meds and asked if i could try those as well, to which he also agreed. a good doc will listen to you--and will work with you--you are a team and a good doctor realizes that.

i also have pfd. that's good that you are going to a pelvic floor physiotherapist. it can take a while (took me a year--i was a tough case) but biofeedback and physical therapy can really help teach those muscles to relax.

good luck with your upcoming appointments. please do keep us posted.


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## annie7 (Aug 16, 2002)

how did your appointments go today? hopefully they went well....


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## GilmoreGirl (Feb 26, 2017)

Thanks guys for your kind words, I really really appreciate the support as I'm feeling really alone.

Unfortunately things did not go well with the CRS. He read my file before the appointment (with notes from previous GI about how anxiety ridden I apparently am) and didn't even ask me any questions before doing an exam. I had to try and tell him mid exam about the issues I currently have, and didn't even get into detail. I was hoping to have a frank discussion with him but he barely let me get a word in. Said my fissure is healed and to continue to see the pelvic floor therapist. I asked him about weightlifting (which was my passion before all this and essential to my job as a personal trainer) and he flat out said to avoid it completely, without question, and to find another job if I can't do it without lifting. It was a heartbreaking and pointless appointment - he merely told me to take fibre and drink water. I told him I couldn't tolerate fibre with the gut pain and that I have no gastro to help me, and he didn't offer any other suggestions except for to get exercise, which I do already.

My gp was slightly more helpful but not willing to run any tests and no referral to a gastro has been made yet (I doubt it will be made). She did listen to me as I explained the issues I have and agrees it's not good. She prescribed constella for me to try - but I read after the fact that this works by drawing water into the stool. I already have soft stool and when I've taken stool softners before, they've only made it harder to go (the stool is too soft and doesn't come out easily with the pfd).

I'm so frustrated and tired. I've seen two psychologists (just made an appointment with a third - a psychiatrist this time), two osteopaths, a dietician, a functional medicine doctor, two gps, the CRS, my general surgeon, the pelvic physiotherapist, a general physiotherapist, a visceral manipulation therapist and even a hypnotherapist and I still have discomfort at all times and pain at most, along with difficulty going to the bathroom.

I was really hoping one of the doctors would say "don't worry, we're going to get to the bottom of this no matter what" but they all don't think they can help.

I've lost my job, taken leave from grad school, lost my boyfriend and many friends, had to give up my passion of fitness and weightlifting, had to move home with my parents, eat an incredibly restrictive diet, and don't enjoy a moment of my life. When I try and remember the last time I enjoyed myself I can't. I'm sorry for all the complaining, I just need to write it down or it feels like I will burst with the pain of it all. It's exhausting and makes life feel worthless.

Thank you all for your support. Any ideas going forward would be so appreciated. As well, if anyone has had any experience with Constella I would like to hear it.


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## annie7 (Aug 16, 2002)

oh i am so very sorry that your appointments did not go well! how very frustrating and disappointing!

that's really a shame that your c/r surgeon did not spend more time with you and listen to you. i wonder why he doesn't want you to do any lifting? is it because of the fissure? how unfortunate that is, especially with you being a personal trainer. i'm so sorry.

and i'm sorry that your appointment with the gp didn't go so well, either. she really should refer you to another gastroenterologist. as a patient, you have the right to see another gastro doc for a second opinion--that's your right as a patient. you may have had a lot of tests but it sounds like you never had a sitz marker test (colonic transit study), which would be a very helpful test for you to have. also, like you said, it would be helpful to be tested for sibo and h pylori.

even if you think constella won't help you, it would be a good idea to give it a try. that's the only way you'll know if it will help or not. it does help some people. here in the usa, constella is called linzess. there are ways to tweak linzess if it doesn't work for you. my gastro doc did research and ran clinical trials on linzess. he told me that it works on the same receptors that food does. the closer you take it to eating, the faster it will work and the more D you'll get. the way it's prescribed, you take it 30 minutes before eating. if it doesn't work for you that way, try taking it closer to eating--like 15 minutes or even 5 or 10 minutes before. i tried this and found that he was right. or, if you're getting too much D from it, try taking it an hour before eating or even longer. sometimes people have to experiment with it to see what works for them.

have you tried prucalopride (resolor--i think it's called restoran in canada) ? it's not available in the usa and i really wish it were--i really wanted to try it. prucalopride helps with motility--it's not one of those adding-water-to-the-stool meds. it helps with gut motility. it works a lot like zelnorm did, but with a better safety profile. i've read a lot of posts from people who say it really works for them. if constella doesn't help you, ask your gp for a script for prucalopride.

https://en.wikipedia.org/wiki/Prucalopride

again--i'm so sorry. i really hope your gp gives you a referral to another gastro doc soon so you can get the tests you want and some good advice and help. usually gastro docs who work at university hospitals or motility clinics are more knowledgeable, up-to-date and proactive about treating chronic constipation than other gastros.


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## GilmoreGirl (Feb 26, 2017)

Thank you so much for your help and advice.

I have a small perineal descent (prolapse) which may have been the cause of the fissure, and am working with the physio to strengthen my pelvic floor. This likely happened because of all the digital stimulation I had to use for bowel movements - my pelvic floor weakened and the fascia collapsed slightly. He says I'm too young to be having these issues so to stop weightlifting altogether. I've heard different things from my gp, physio, and CRS about weightlifting, but I was really hoping he would say not to worry about it or at least just to ease back in slowly. It's very depressing at the moment - I managed to make an appointment with a new psychologist, but the depression is overwhelming and the only thing that helped was going to the gym and trying to get back to routine. Now I feel that I can't do that, and even if I do i will be worrying the whole time about destroying my pelvic floor.

I will definitely ask my gp about restoran if the constella doesn't help. I really appreciate your tips about the constella and I'll keep them in mind as I try it. How long should I wait AFTER eating to take it? I normally have some dinner around 5 and then a snack before bed at 9 ish - is it ok to take between the two meals (both small)?

I think I will phone and make another appointment with my gp and bring one of my parents with me. I just need them to listen and realize how worthless my life is like this. I also think maybe I should get a referral to a urogynocogist or sports medicine doctor about the pelvic floor issues - I need to know for sure whether I will hurt myself lifting.

Scared and tired, it's really hard to get through the day like this. It's only 9 am here and I can't wait to go sleep tonight, it's a horrible feeling


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## annie7 (Aug 16, 2002)

the prescription instructions say to take constella before eating your first meal of the day. sorry-- i don't know anything about taking it after eating. most people take it in the morning, before breakfast. it works best if you have a warm breakfast with some healthy fat in it. also, be sure and drink a lot of water with it. we have a number of linzess threads here on the board. i've read that some people have tried taking it at night several hours after dinner (but no snack later) and then they have a bm in the morning. if you take it at night between dinner and a snack--well, i don't know. just a guess but you might get a lot of D if you take it that way. you could be up all night..

i can see why your crs said no weightlifting if you have perineal descent. although you're getting conflicting info from your other docs, so that makes it confusing. and of course you don't want to destroy your pelvic floor. what a dilemma. i do wish there was a way that you could still do your job without having to lift heavy weights. that's a good idea to see a sports medicine doc. hopefully he/she will have some ideas and help for you.

and yes, it's a good idea to take one of your parents with you for your next appointment with your gp. i always get copies of my visit notes after i see a doctor--i like to know what they are saying about me! i ask the nurse for the visit notes. the way our health system works, the gp also gets copies of the visit notes from all the specialists too.

i understand what you mean about getting through the day. i have chronic pain from continual migraines and other health issues. i have to claw my way through the day. i just try to take it one minute at a time.... good luck with everything..


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## GilmoreGirl (Feb 26, 2017)

I'm sorry about your chronic pain - I certainly can relate and it's exhausting.

Again, great advice and much appreciated. I ate a small dinner at 4 and normally take senna with it. Instead, I will take a dose of constella around 7, small snack at 9. If it gives me diarrhea I will change it up. Luckily I have absolutely no commitments for the next couple of days so even if it does wake me in the night or I'm in the bathroom frequently it shouldn't be a problem. I really would rather have a bm in the morning and my gp said to take it at night in order to do so.

I never even thought about asking for appointment notes but I should have been doing that earlier! Will see if I can from now on.

I just got an appointment in a couple of weeks from a pelvic floor physio who is a competitive weightlifter - she is sure she can help me out, and is the best pelvic physio in my area.

Thanks again


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## annie7 (Aug 16, 2002)

good luck with linzess. hope it works for you. it does come in three dose strengths--72 mcg, 145 mcg and 290 mcg so you can have the doc adjust the dose if necessary. hope it works the way you want it to. if it doesn't, try adjusting the dose amount or try taking it before breakfast.

that's wonderful that you got an appointment with a pelvic floor physio who is also a weightlifter! abd even better that she thinks she can help you--hooray!

good luck with everything and keep me posted--thanks.


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## GilmoreGirl (Feb 26, 2017)

Thanks! I just actually phoned the pharmacist to ask her about it - and she said the same as you, so I will take it in the am 30 min before eating and hope it works wonders. I did take senna tonight as I usually do, but I suppose if i go too much tomorrow I can back off the senna. I think I was a little worried that the constella would bring liquid into my bowel but not move thins along (like when I last took a colonoscopy prep it didn't work for almost 24 hours).

I'm very happy about the physio. I don't see her until July but I'm looking forward to it.

Thanks again


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## annie7 (Aug 16, 2002)

oh that was a good idea--calling the pharmacist!

hope constella worked for you!

i had the same problem with my last colonoscopy prep--it took hours to work and i was still full of prep gurgling around in there when i went in for the procedure. they had to suction me out before they could do it.


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## GilmoreGirl (Feb 26, 2017)

Well...I took it at 5:30 am, ate at 6:00 am...it's now 9:30 and nothing has happened besides a little stomach rumbling. Frustrating because I was hoping it would work quickly as others have said - I don't feel well in the morning until I have a bm so I'm just sitting around waiting for it to happen as usual. I don't know whether to try before bed tonight or just keep going with the am doses and hope it starts to work.

Those colonoscopy preps are the worst. I've had 2 colonoscopies and neither time was a breeze. Had to do one to clear me out post op as I hadn't gone for over a week. It was awful.


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## annie7 (Aug 16, 2002)

oh dear--so sorry! are you taking the 290 mcg dose? or the 145.

if it were me, i would try taking it tomorrow morning 10 or 15 minutes before eating. or even take it with breakfast. that should get it working. and make sure you drink lots of water with it and eat a warm breakfast with some healthy fat in it...

i understand what you mean about not feeling well until you've had a bm. i was like that, too. i just feel too bloated, gassy, stuffed up and miserable when i couldn't have a bm..


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## GilmoreGirl (Feb 26, 2017)

I'm taking the lower dose. I had to use an enema this morning to go and it's like everything is in slow motion. It's like the constella got everything to move to my lower abdomen, but it has no "propulsion" to come out if you know what I mean. I don't have pain yet, but I'm just extremely bloated and uncomfortable - more than usual for sure. Is there any reason why linzess would actually make the rectal muscles work less? It feels like that's what's happening, it's all just sitting there. It was better with senna where I would actually have an urge to go, have a bm, and be mostly done and feel good for at least a few hours.

I even went for an hour walk hoping I would get the rest out but nothing but gas.

Argh, I was hoping this would work. Perhaps there's a reason my gp said to take at night...or maybe it takes a couple of days to work? I will try again tonight or tomorrow and if it's not helped by tomorrow or Monday night I think I will call it quits rather than fill the expensive prescription (just using the sample now).

Thanks again for all the advice. I've been reading the linzess threads and I'm not super impressed, it didn't seem to really help a lot of people. Maybe the restoran that you mentioned would be a better fit.


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## annie7 (Aug 16, 2002)

so sorry that linzess still hasn't worked and that you had to do an enema.

i don't know why your gp said to take it at night. that kind of advice is generally for people who are having too much D with it. they take it at night, on an empty stomach, a few hours after eating dinner and then (if it works) they have a more solid bm in the morning and not as much D. so maybe she said that thinking that you'd have too much D when taking it as prescribed.

since linzess is not a laxative--it's more of a bowel regulator--it works best if if you're not already backed up when you take it. if you are backed up, it's best to do a clean out first and then try it.

linzess generally works right away but i have read some posts from people who said that their gastro doc said it could take a week or so to kick in.

if i were you, i would take the 290 dose (two of the 145 pills) in the morning 5 or 10 minutes before eating or even WITH breakfast. linzess works on the same receptors that food does, so the closer you take it to eating, the faster it works and the more D you get. when i took 290 mcg with breakfast, i had lots of D. it only worked once for me when i took it 30 minutes before breakfast. i couldn't find a happy medium with it, so i quit taking it.

restoran increases peristalsis --and propulsion--so yes, it should work better for you. i wanted desperately to try it but it's not available in the usa.


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## GilmoreGirl (Feb 26, 2017)

Thanks for the advice. It's a strange med...I just don't think it's working for me. I took it with food at 5:30 am and I still had to use an enema at 10:00 to go. It did soften the stool some, which I think just made things worse (like there's no momentum anymore so it just sits there). And this is in addition to senna last night.

I do think I have less pain, BUT much more 24/7 discomfort - huge amount of bloating, smelly gas, feels like I'm pregnant all the time and I have no desire to eat (I'm getting some nausea too).

I think I'll make another appointment with my doctor Monday. She may tell me to stick it out but maybe she will have something else. I wonder - is there anything that has the desensitizing effects of constella but not the part that brings water into the bowel? I think that part makes things worse for me not better.


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## annie7 (Aug 16, 2002)

oh i'm really sorry that it didn't help. did you take the 290 mcg dose?

your samples aren't expired, are they? and did they come in the original, factory sealed bottle with the little desiccant packs in it. linzess is a very unstable medication--very sensitive to both heat and humidty. as it says on the label, it's intended to be kept in the original bottle and not to be decanted (like some pharmacies or doctors do) into another bottle.

yes do talk to your doc. hopefully she'll give you a script for restoran. good luck.


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## GilmoreGirl (Feb 26, 2017)

Thanks again for the reply.

My doctor decided I should try two things. First, the antibiotic rifaximin 3x daily for 14 days. I'm on my 4th day and I THINK but I'm not sure it's helping. I have less pressure in my chest/upper gastro area. I still get discomfort and pain daily that is only relieved by a bm. I'm continuing to take the laxatives to go in the am, and use a small enema bulb 30 min after eating dinner to help relieve built up gas and I feel better. I wish I didn't have to do this but I'm so uncomfortable if I don't, the gas discomfort starts around 4 pm and comes out slowly, I spend the rest of the night in discomfort if I don't get it out.

When the antibiotic is done, if I'm not feeling 100% I'm to take the larger dose of constella. I will double check the date on the constella but there is a desiccant packet inside the container and I did not remove the pill until just before taking it.

Next step with my gp - will ask again about restoran, as well as maybe increasing amytriptiline or maybe an ssri. I really don't want to take another medication or more amytriptiline but I'm noticing that my anxiety is getting out of control. It's a vicious cycle of being worried I won't have a bm or worried about being sick and I think I exacerbate things. I see a psychiatrist next week and will be asking about a referral for hypnotherapy.

Thanks as always for the support


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## annie7 (Aug 16, 2002)

thanks for the update.

sounds like you and your doc have a good plan going. yes, hopefully rifaximin will help and the bulb enema is a good idea, too.

hope the larger dose of constella will work and yes, good idea to ask your doc about restoran if it doesn't.

good idea to try to get your anxiety under control since that does make everything worse. you're right--it is a vicious cycle. and that's great that you'll be seeing a pysch doc and asking for a referral for hypnotherapy. that can be very helpful, i've heard.

you probably already know this but amitriptyline can be constipating. there are ssri's that have D as a side effect..

sounds like you're being proactive and doing all the right things . good luck with everything--keep me posted.


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## GilmoreGirl (Feb 26, 2017)

I thought the rifaximin was helping but today I had the most horrendous stomach pain. I was not at home, and it sent me into a panic. It hurt so much, burning stabbing cramping pain from my chest to my belly button. When I got home I immediately drank a glass of warm water and had a small snack, lay down with a heating pad, and soon passed some gas and felt much better. I cannot believe that gas causes me so much pain. I don't even have that MUCH gas, I maybe pass gas 7 or 8 times in a day. I also take gas x 3x daily. It just hurts me so much.

So all in all I had an awful day. I start to worry I will be like this forever. I have to go back to school in September and I don't know how I will. I'm in so much pain and so depressed. I just want to be normal and be able to have a boyfriend, work, go out with my friends, travel, even just live without constant pain or discomfort. My life revolves around eating and going to the bathroom. I think about what a relief it would be to have a colostomy and be done with it. I also think about suicide almost every day, if it weren't for my family I think I would go through with it. I have no more friends left who can deal with someone who is sick all the time. I can't be productive so I feel useless and like a waste of space.

I just want a doctor to admit me to the hospital and figure out what is going on, or how to help me. They don't understand that although there isn't anything life threatening, my life is over at 25 because of this.

Sorry for the rant. Just had to get it out because I've been crying and googling for hours and I can't take it anymore


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## annie7 (Aug 16, 2002)

oh, i'm so sorry that you're having such a miserable time of it.

and no need to apologize for the rant. that's one of the reasons the board is here--it's good to rant and get it all out.

you are not useless and a waste of space. every life has value whether you are able to be productive or not. you are someone who has a chronic disease and your are being very brave and proactive in getting help and dealing with it and trying different things to help manage it. yes it is very difficult when one has chronic long standing pain--i know from experience. it takes a lot of courage and energy. and it's wearing. and yes, it can be depressing. i try not to think and worry about the future and just take everything one day at a time, one minute at a time. but i really do think that with everything you are trying you will be able to manage this.

so sorry about all the gas and the pain. yes, gas can be very painful. i know people who went to the ER because of it. you were smart to use a heating pad. they can be very helpful. i used to lie down with a heating pad and do a colon massage, which really helped to get the gas out. there are some good u tube videos on colon massage.

hopefully once you're done with rifaximin things will get better. and yes, i think looking into hypnotherapy is a terrific idea. we have a forum here on the board about it:

http://www.ibsgroup.org/forums/forum/9-cognitive-behavioral-therapy-and-hypnotherapy/

and do give prucalopride a try. i think it might help. i wish it was available in the usa so i could have tried it.

and it's good that you'll be seeing that pelvic floor physical therapist who is a competitive weightlifter.

also--if pain is your major symptom and nothing else works, you might want to consider pain management.

i suffered with chronic constipation since childhood. i'm now 64. i was dx'd with colonic inertia, pfd, megarectum, rectal hyposensitivity and a long twisted colon. long story short, two years ago i had an ileostomy because nothing was working for me anymore and i wanted a better quality of life.

i do hope that today is a better day for you. hugs, annie


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## GilmoreGirl (Feb 26, 2017)

Thanks for replying. You're right, I need to take things day by day. It's just hard not to look at other people and wish I could be like them, go to bathroom and eat without struggle or worry.

I'm sorry you had to have an ileostomy...but are things better now? If it has provided you with relief then good for you for being so brace to have that done.

Im not feeling to great today but will go to the gym and try and get some exercise. Im scared about starting school in the fall. I have one semester to complete and defend my masters thesis and I'm not at all physically or emotionally ready. But if I don't go back they will kick me out. I'm also getting very anxious about my laxative use, that I'm going to make things worse later on...I am noticing the senna is becoming less effective, and I don't want to go over 1 pill daily, so I will go buy the dulcolax that you mentioned and try it for a week.

I'm hoping the antibiotics will help...although since starting them I've noticed that I have VERY smelly gas. Normally when I pass gas it hardly even has a smell. Now it's awful...any ideas if that's normal?

I'm guessing my doctor will want to try and increase my dose of amytriptiline to help with the pain, and give the higher dose of the constella a try, but I don't have high hopes for either.

I suppose pain management is always an option. I had almost no stomach pain or discomfort when I was on morphine, until my body started getting used to the dose, then I had even WORSE stomach pain and I think that's what got me to where I am now. So the thought of painkillers scares me. But at the same time, even when I was severely constipated post op, my ibs pain felt great.


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## annie7 (Aug 16, 2002)

yes, thanks, my ileostomy has given me a better quality of life. i no longer have to struggle in the bathroom for hours to go or take lots of laxatives.

pain management is not just about taking opiods. it can be, if necessary, but PM docs use a lot of different ways to treat pain--cbt, meds other than opiods, procedures such as nerve blocks, PT, etc. whatever it takes.

also--ask your doc if you can try resolor ( restoran--prucalopride). it works different than the other meds available, which just add fluid to the colon. instead, restoran works on serotonin receptors and enhances gut motility.

will your university accept a letter from your doctor explaining that you have health problems and allow you to finish up at your own pace. i know people who've done this and it worked for them. colleges can be very understanding about health problems.

i've posted about laxative use before so maybe you've already read this but my gastro docs told me that it was far better to take laxatives daily to help me go than it was to take nothing and risk developing an impaction.

https://www.ncbi.nlm.nih.gov/pubmed/15654804

https://www.ncbi.nlm.nih.gov/pubmed/8234421

that's good that you're going to the gym today....i do hope that you start to feel better soon.


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## GilmoreGirl (Feb 26, 2017)

I will ask the doctor about restoran again and about maybe going to a pain management clinic. The pain woke me up this morning. It's constant. I have maybe a day of relief once a week, im getting so depressed I don't know what to do. The senna isn't working well anymore and I don't want to increase the dose - I will try dulcolax tonight, I hope it works.

I'm also running out of money so I really need to get back to work and school (I'm paid a small salary for graduate studies). I think I will have to beg them to give me more time (I've already taken the maximum 3 semesters off - I can't believe I've been in agony for so long). I'm starting to get really scared and just want to die every day, it's really scaring me and I'm scared to be alone.

I've been to emergency twice before with this pain and confided in the doctor that I've been feeling suicidal and they did nothing about it. I'm trying so hard but the pain is unrelenting and I'm continually disappointed by the treatments I'm offered, I don't know how to go on with this.

I can't imagine having to work 9-5. I don't want to end up relying on parents, living with them, doing nothing with my life because of this pain. I can't have relationships and friends have abandoned me, I don't have anyone besides my parents and i feel like such a burden.

How to you get through the day when every minute is agonizing or at the best very uncomfortable? I don't know how to go on. And then I just feel stupid and weak - there are other people with much worse issues and they manage.


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## annie7 (Aug 16, 2002)

i'm so sorry for all your pain. and i'm really sorry that you are feeling suicidal and are afraid to be alone. please call a suicide hotline today to talk to someone about this. or you could call your doctor's office and speak to the on-call doctor about it--or call your doctor tomorrow to talk to her or someone there about it or if you have a psychologist, please talk to them. a psychologist's office will have an on-call doc you could talk to today. it's terrible that the ER doc you talked to did nothing to help you.

about laxatives--they won't work if you don't take the amount you need. i took four maximum strength senna tablets. you always want to start out with the lowest dose, of course, but if that doesn't work, try more. laxatives are safe to use when used as directed. if you try dulcolax, be sure to follow the instructions on the box and don't take it within an hour of antacids or milk or dairy products. otherwise you'll get cramping. you could also try taking Dr Schultz Intestinal formula #1. it's all natural and a lot of people here say it really helps. if you can't find it in the drugstore, you can buy from amazon or from the dr schultz website.

http://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/

please don't think you are stupid or weak or a burden to your parents--they love you and want to help. you are dealing with chronic pain and that is very difficult and wearing. i am very sorry that you are feeling so bad and feeling so depressed. i do wish there was something i could do to help. please do take good care of yourself.


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## GilmoreGirl (Feb 26, 2017)

Thanks for replying to me always Annie, you're really a lifeline for me at the moment, so greatly appreciated.

I had a long talk with my mom yesterday and she decided I needed a distraction so we went out and about, shopping and errands and such, and it definitely helped. I'm just trying to push through the discomfort, and today is difficult because my dad is away and my mom is off to work, so I'm on my own. It seems pathetic to me that I'm 25 and feel like I need my parents but I'm so scared to go out and do anything and then be stuck somewhere feeling miserable with no one to take me home or talk to. Not a good feeling.

I have an appointment with a new psychologist next week and I will bring up these awful feelings with him. I hope he works out...I've had two before and I didn't feel comfortable with either of them.

I tried the dulcolax and followed the instructions, and it worked well beyond a little nausea last night. I take it in the afternoon and with senna I normally have the urge to go around 10:30 am, but the dulcolax seemed to work faster - around 8:30 or so which is better - I'm not stuck lying around waiting for things to move. I think I will take the dulcolax for a few more days then switch back to senna - and continue to alternate every few days.

I don't know if you have ever taken rifaximin, but I'm wondering why all of a sudden my gas smells so awful...I hope that will stop when the antibiotic is done, because I don't need yet another symptom to worry about (before my gas was copious, but not smelly).

Wow the things we post on here. It is always helpful to be able to talk openly. I really hope I can get things sorted and start being able to help others on this board as you have done for me Annie.


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## annie7 (Aug 16, 2002)

thanks for your kind words. i'm glad i've been able to help a little bit.

that was such a good idea to go out with your mom yesterday and run errands and things. good for you for being strong and doing that. doing things like that does help a bit to take your mind off the pain. that's what i do to help distract myself from my pain. it does help although the pain is always there in the background like bad muzak but it helps to distract oneself and focus real hard on something else.

i'm sorry that it's hard to go out by yourself--i do understand, it must be a terrible feeling. hopefully this will get easier with time. maybe you could just start out with short trips or going for a short walk or something and see how that goes and then work yourself up to longer trips etc. also, when you are at home, you can try to focus real hard on whatever you are doing--housework or whatever. i've found that even just listening to music helps--it makes my mind soar and distracts me from my physical pain.

please don't be so hard on yourself. you're not pathetic. no way. you have a lot of problems, a lot of pain and are doing the very best you can right now and that's a good thing. in time, things will get better. i know it will.

yes, it can be hard to find a psych doc that you can feel comfortable with. i do hope the new psychologist is a good fit for you and that you can talk all these things over with him.

i am SO relieved that the dulcolax helped! hooray! that's good idea, alternating the laxatives. that's what i used to do. i rotated dulcolax, senna and cascara sagrada.

no, i've never taken rfaximin. i was dx'd with sibo but my insurance refused to pay for rifaximin and i couldn't afford to pay out of pocket so i took augmentin instead. it does sound like the smelly gas could be a side effect of it, though, since it started when you started taking rifaximin. i know that smelly gas is definitely a side effect of sibo. maybe it has something to do with rifaximin fighting off the bad bacteria??

oh yes--you are so right--the things we post here







. but that's what the board is for--to be able to talk openly about our problems. after all--if not here--where? this is a safe place.


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## Akn1965 (Jan 13, 2017)

Thanks Annie.
You are trying to your best with heart and soul to survive and to give guide line and to give consolation to needy members.Though I have not found any solution to my ibs-d yet I am proud of this website.


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## annie7 (Aug 16, 2002)

oh thanks so much, Akn---such a wonderfully kind thing to say. i really appreciate it







.

i'm sorry that you haven't found any solution to your ibs-d. i do hope that somehow you can eventually find some relief.


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## GilmoreGirl (Feb 26, 2017)

Thanks so much Annie - for some reason I just saw your post now so I'm replying late!

I'm down today because I had to miss my brothers graduation. It's one thing to let myself down and not be able to do things I want, but the guilt is overwhelming letting others down. I'm not a good friend or family member right now, and I feel selfish.

The pain is always there - you're right Annie. I think that's why I feel better when I exercise - it distracts my brain and floods with feel good hormones. But most of the day is spent in extreme discomfort or pain like today.

I'm not sure the antibiotic is doing much. I seem to have less gas and bowel movements are firmer. But my pain hasn't changed.

The visit with the psychiatrist helped. He ha sure a different approach to the others I've seen. He is very structured and planned. He does psychoanalysis, which I think may help as it delves a little more into deeper emotions or trauma that aren't necessarily noticeable to us.

Soon will be done the rifaximin and will try constella again.

Hard to even walk down the street and not look at people and feel jealous. They can work and go out and enjoy life and eat and poop without worry stress or pain. It's just awful how jealous of everyone I'm beginning to feel.

Hope you're doing well Annie, thanks for your support


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## Akn1965 (Jan 13, 2017)

I am very sorry for your pain and such types of situations GilmoreGirl.
In many cases of ibs time will settle many things.you have to keep patience. You should keep on exercise .

Take care.


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## annie7 (Aug 16, 2002)

so sorry you had to miss your brother's graduation--having to miss family events because we are too ill and in too much pain is always difficult,. but please please don't be so hard on yourself. you are not selfish. and you are not a bad friend or family member because you are suffering from health problems. you were suffering and you were in too much pain to go. you would have gone if you could have. hopefully your family understands this.

i'm so glad your visit with the psychiatrist helped! that's wonderful. and yes, that's good that he does psychoanalysis. that was such a good idea to see him. he sounds like he'll be quite helpful.

i do hope today is better for you. take care.


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## GilmoreGirl (Feb 26, 2017)

Thanks AKN and Annie.

I'm just so fed up. My abdomen is so tender and sore this morning. It woke me up at 4 and I haven't been able to go back to sleep. I don't have the strength to exercise or do anything right now I just feel so bad. I'm tempted to go to emergency because I'm just so tired of this but I know they will do nothing for me.

I'm so tired I don't want to carry on like this. I've had pain for almost a year now. Every day. Not a day without it.

I don't know how this can be just anxiety. There has to be something wrong. I spent hours googling this morning which is horrible but I need to find something...I don't know if my gall bladder, pancreas, kidneys have been checked. I've even read that people can have a disc prolapse causing nerve impingement in the spine with the only symptom being persistent stomach pain...but i know if I tell these things to my doctor she will brush it off.

How do people live with this level of constant pain?


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## annie7 (Aug 16, 2002)

i'm so sorry about your ongoing pain. yes it is very wearing to have to deal with chronic pain day in and day out. i really hope you can get into pain management. those docs understand about chronic, ongoing pain and can help you manage it and deal with it.

i have interstitial cystitis (among other problems) and have been having a flare for the last month. the pain is agonizing. there is no relief. like you, i wake up in pain if i sleep at all. i just try to take it one day at a time, one minute at a time. and yes , all that is very hard.

googling really just makes it worse and it does feed anxiety. that's one of the reasons why i hope you can get into pain management. you can talk these things over with your PM doc and they can order tests if necessary.

have you discussed your pain with your psychiatrist. hopefully he will have suggestions on how to cope with it. and perhaps he can prescribe something that will help with the pain--maybe an ssri or something...some of them do help with pain.

sorry--i wish i had more things to suggest but i don't.... i really do hope things get better for you.


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## GilmoreGirl (Feb 26, 2017)

Oh no Annie that's awful. I know IC can be absolutely terrible - you must be so strong.

I think I will ask for a referral to a pain clinic from gp because I'm at my wits end, as I'm sure you know.

I read some papers that discussed visceral hypersensitivity and they suggested combining drugs like amytriptiline with an Ssri so that is a good point. I've also been on an ssri before and I know it wasn't that difficult to come off of, which is reassuring.

The psychiatrist that I'm going to really is more of a psychologist - he prescribes as a last resort (and I agree with this, my dad had a bad situation with a psychiatrist overprescribing - even lithium - for ptsd). He did say that it is possible that working through some things - I did have a somewhat traumatic childhood and suffered anorexia for several years in my teens - may help the pain, but that it would be a very slow process.

I really hope your flare ends soon. Thank you for being so supportive...it's hard to help others when you yourself are in so much pain.


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## annie7 (Aug 16, 2002)

thank you for your understanding and support









yes, do get a referral to a pain clinic--i hope you can get in to see someone soon.

and yes, that sounds like good information that you read about visceral hypersensitivity and combining amitriptyline with an ssri. that sounds like a good idea.

at least it would be good to talk everything over with your psychiatrist--especially if he's understanding and supportive. it may not help you specifically with the pain per se but it might help you mentally to cope with it. and it would be good to talk with him about the awful feelings that you have that you mentioned earlier and the guilt you feel for missing family events and everything--your feelings of hopelessness...things like that...


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## GilmoreGirl (Feb 26, 2017)

Thanks Annie I will talk to the psychiatrist about those things.

Had a particularly horrible day with pains at a level of 8/10 for several hours. Almost went to the emergency room but I know they will send me home with no help as usual.

I did try a granola last night that had flax. Once when my ibs was under control I had a horrible pain attack after eating a granola bar with lots of nuts and seeds.

So I'm going to cut out anything with seeds for a few days, then nuts also if there's no improvement. Who knows.

I just can't believe after a day like today that my pain is just "ibs" or nervous system sensitivity. Is there anyone else on here with this extreme level of daily pain just from ibs? I feel like there must be something going on but my gp is sure I am fine so won't order any blood work or tests.

I'm at my wits end. Just called my mom and spoke to her and the whole conversation made me feel worse. I know I shouldn't be ungrateful for her help, but she just says things that set me off. I just don't think she understands the level of pain I'm in. She said if I was in that much pain then I would be passing out, and just always seems to think it's something I've done or haven't done that is causing my pain.

Overall just very tired and wishing this would be over


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## annie7 (Aug 16, 2002)

so sorry for all your ongoing pain.

and i'm sorry you mother wasn't more understanding and supportive.

i would never wish this kind of constant extreme pain on anyone but i've often wished that those of us who suffer with chronic pain had some kind of "socket" sort of thing in us that would let other people--doctors, unsupportive family members, friends etc-- "plug into" us so that they could actually feel the amount and severity of the pain we are in. then they would understand--if they had to feel it themselves and know that we are suffering with this 24/7 with no end and no hope of getting better...


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## GilmoreGirl (Feb 26, 2017)

YOure right Annie, that's exactly how it feels. It would be good if others could understand but I wouldn't wish this pain on anyone.

I finished the rifaximin two days ago and things have gotten worse since stopping. I'm having loose, pale "floating" bowel movements accompanied with painful cramps gas. I have a lot of movement and discomfort in my gut at most times. The usual daily pain is still present. The dulcolax and senna have not been working as well.

I also last night had pain that I don't think was digestive. It felt like I was in labour - I literally had "contractions" every ten minutes for several hours - like realllly strong period cramps accompanied with nausea. My whole lower abdomen and pelvis ached all night. 
Unfortunately things did not work out with the psychiatrist. It was too uncomfortable for me - his approach just didn't suit. Our first visit was good but the second appointment was not. He invited me in and didn't say barely a word the whole time. If I didn't speak then there was silence. I didn't even know what i should be talking about and felt very uncomfortable - there was a lot of silence. It felt like a waste of time.

I'm really trying to take things day by day but I'm feeling worse since stopping the antibiotic and it makes me nervous that this is the new normal.

I have to try the constella (will likely do so on the weekend) at the higher dose, and then I have a follow up with my gp next Friday.

I'm starting to think I will have to accept that my life will be difficult like this and plan accordingly. It isn't an easy thought to face.


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## AIRPLANE (Mar 15, 2004)

Have you ever considered the possibility of endometriosis? A lot of women who are diagnosed as having IBS have found out later that they have endometriosis. But it is difficult to find Drs who are good at diagnosing and treating it effectively which requires surgery because it doesn't show up on imaging tests. A lot of the information and articles about it found online is outdated and inaccurate. Severe pelvic pain can be caused by certain types of ovarian cysts when they burst such as endometrioma or dermoid ones.


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## GilmoreGirl (Feb 26, 2017)

Thanks AIRPLANE. I did mention it to my doctor and she dismissed it - but I think with the recent pains I've been having on top of my normal ibs pain, it might be worth reconsidering.

I do have pelvic floor tension AND a small localized perineal descent since I had surgery for an anal fissure. The doctors didn't know what came first - the pelvic pain and tension or the fissure, so perhaps it is related.

I don't know if it could be related to the other types of pain I feel - mostly feeling like I have a horrible stitch in my side (left mostly, sometimes right) and sometimes chest pain and pain below the ribs.

Any insight is appreciated - thanks for your help


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## AIRPLANE (Mar 15, 2004)

I definitely think that it is worth considering but unfortunately there are not a lot of Drs/Surgeons who have the proper skills for diagnosing and treating it. The average gynecologist who spends most of their time dealing with pregnancies and delivering babies just doesn't have the time, knowledge and experience to properly deal with it. It really needs to be a specialty and only a handful have bothered to make it a priority to become good at diagnosing and treating it.

I messaged you about some good resources. I myself would love to see one of the top endometriosis experts in the world but it hasn't worked out yet because he is a few hours away from where I live and I am the primary caretaker of my elderly father. Like you, my late mother was not very understanding or supportive of my pain and problems. But then, she was brought up with the idea that it was 'normal' for women to have pain and various problems due to just being female. This attitude needs to be done away with. Just because it is common should not mean that it is 'normal'! Things like endometriosis, adenomyosis, PCOS are very real conditions that should be properly addressed in a timely manner. But it isn't happening yet, though there are people who are trying to change this.


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## annie7 (Aug 16, 2002)

so sorry about all the pelvic pain you had the other night. yes, do follow up on that like airplane suggested. i have endometriosis. when i had my hemicolectomy, the path report showed endo on my colon. i also have cysts on my ovaries which can be very painful. there are some good books out on pelvic pain like "a headache in the pelvis" etc . amazon had a good list of them.

sorry your psychologist didn't work out. i don't think i would care for his silent approach either. i do hope you can find someone who will work out for you.

are you taking the full dose of senna and dulcolax or just the one pill. i needed the max dose for those to work for me. i also had good results taking an osmotic lax along with a stimulant.

there's a lot of other laxatives you can try like intestinal formula #1, MagOx, Mag07 , triphala etc etc. never give up. there's lots of things you can try.

if the higher dose of constella doesn't work, try tweaking it like i mentioned earlier. and there's always prucalopride. that should work for you since it increases colonic motility.

Trulance (plecanatide) is a new C med that became available here in the usa early this year. i don't know if it's available in canada or not but ask your doc. if she doesn't know---some GPs aren't up-to-date on the latest C meds--call your pharmacy and ask.

hope you have a better day today. take care.


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## sara1991 (May 13, 2017)

Hello GilmoreGirl! Just realized everything you're saying are my exact same thoughts day in & day out. Im also 25 and have always been so independent until this happened & feel like a big baby calling my mom crying everyday. Its ridiculous that this disease can cause so much emotional trauma itd lead someone to think of suicide but Im trying to pull it together & experiment witj different things as drs have been no help whatsoever. Im also on an SSrI and Resotran which stopped working and currently on a low fodmap diet with magnesium citrate. I hope Id wake up & this would go away noone deserves to be in this much pain 🙏🏻 Feel free to DM me if you need to speak about anything, this group has been the only great thing this past 6 minths.


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## Hartigan (Jun 28, 2017)

GilmoreGirl,

What helped me most with my pain was an antispasmodic - Mebeverine Hydrochloride 135 - trade name Colofac or Duspamen/Duspatalin...it s specific to IBS pain. Dosage I was told was 1 tablet up to 3 times a day - 20 minutes before a meal. I took just one of these and could not feel my guts at all the whole next day....I was amazed & relieved.

You may want to check with your docs about this & get a script to try it out.


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## GilmoreGirl (Feb 26, 2017)

AIRPLANE - I got your message, thank you so much for the detailed info! It was so helpful. I found a specialist in my area but I'm doubtful about my gp giving me a referral to her - she's already made it clear she doesn't think it's endo, but I'm really not sure. I'm also sorry you're suffering also. Pain like this is not something I'd wish on anyone, ever.

Annie - I can't believe you also had endo on top of everything. You've had such a tough time - it's inspiring that you carry on and help others too.

I have been taking just one pill of senna or dulcolax. The dulcolax works perfectly some days and not others. The senna isn't working much anymore. I bought aloe Vera gel capsules and a magnesium supplement - I'm thinking about adding in one of those but I'm nervous about making things worse. Also still have not tried the greater dose of constella - I will try in the am maybe. It made me feel so bad last time I've been putting it off. Thanks for the info on that new med - adding it to my list to ask the doctor about.

Sara - I'm so sorry you're suffering also. It's not fair that anyone should feel this way. For sure let's chat over DM - it sounds like we have lots in common. Not an easy journey, stay strong.

Thank you Hartigan - that sounds fantastic. Definitely will ask the doctor about it! I do find buscopan sometimes takes the "edge" off...so maybe a stronger antispasmodic would help me also.

It has not been easy lately. Not any better at all. I did notice today though that part of the pain I'm feeling is nausea...I didn't even recognize until today it got to the point where I threw up...and I neverrrrr vomit so it surprised me. I was fine one minute then the nausea hit and my whole abdomen, sides and lower back started to kind of burn...and I got all sweaty and sick. Strange. I guess I didn't recognize it before because it's so strange for me to nauseous.

Thanks all for the info. I have an appointment with a new physio on Thursday and with my gp on Friday so I'm hoping next week will be productive.


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## Akn1965 (Jan 13, 2017)

GilmoreGirl,
Have you ever tried Drotin ds(Drotaverine hcl 80 mg) for abdominal pain?
Thanks.


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## GilmoreGirl (Feb 26, 2017)

Akn - I haven't tried that but I will ask my doctor about it.

I have had a pretty good week compared to others, so I'm hoping things are improving. My uncle suggest trying DGL (licorice) in chewable tablet form between meals and it seems to help with the burning. I'm still having waves of pain and some nausea but they seem more scarce.

I tried the larger dose of constella on Monday and it worked ok - I took it at 5:30 ate at 6:00 and went at 9:30. I filled the prescription and used it again yesterday with no problems - but today I'm having cramps and diarrhea. I would like it to work sooner in the morning, so I will try taking the smaller dose before bed tonight instead of the full dose in the am. I have an appointment with my doctor tomorrow so I will ask her about the antispasmodics and tell her about the nausea and "uterine" type pain.

I have pelvic floor physio in an hour and I'm anxious because my stomach is still cramping like I will need to go, and my last bm was only liquid. Hoping there's nothing left.


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## annie7 (Aug 16, 2002)

that's good that you are having a better week compared to the others. hope your appointment with the physio went well. and good luck with your doctor's appointment tomorrow. if you don't feel constella is working well for you, ask her if you can try prucalopride. it works in a different way than constella--it helps with motility. good luck.


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## Akn1965 (Jan 13, 2017)

Thank you Annie.
I have no knowledge about constipation.I am here to encourage you and GilmoreGirl. By your inspiration now she is aheading to a normal stage.it's an honest attempt of you.really I am very glad of your attempt.
Thank you very much again.


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## annie7 (Aug 16, 2002)

thanks so much, Akn, for your kind words--that's really nice of you. and thanks for all the helpful and encouraging answers you have given people.


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## GilmoreGirl (Feb 26, 2017)

Thanks Annie.

My doctor wants to give rifaximin another go - this time for 30 days - because she thinks it did help. I do agree, my stomach has felt much less bloated (visibly also) and I have less gas - but it is painful when I do have gas. She also wants me to keep up with the constella.

The problem I'm having is that no matter what time I take the constella and dulcolax, I don't have a bm until 10 am. That means I'm sitting around uncomfortable every morning until then. I would love to get up at 8 and just go. My doctor suggested taking it at night, which I did - still no bm until 10 am.

I'm so confused about this because it should make sense that the earlier I take it, the earlier it works. I don't understand if taking it with food will make it more or less effective either!!

I'm thinking on taking dulcolax tomorrow around 8 am (rather than 11) and waking up to take the constella at 3 am with a small snack and go back to bed.

Any ideas?

Thanks


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## annie7 (Aug 16, 2002)

glad the rifaximin has helped and hopefully another course will make things even better.

do you take dulcolax at 8am (or 11am) and it works the next day? you do have to take the amount of dulcolax that is effective for you. i needed three pills--otherwise nada. it took about 12 hours for it to work for me.

and yes, one would think that taking these meds earlier would make them work earlier.

like i mentioned before, constella works on the same receptors that food does. taking it with a meal makes it work faster. you also get more D that way. i don't know what taking it at night with just a snack will do but i imagine that would work. good luck.


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## Redmapletree (Feb 19, 2017)

Some of what you are going through is very familiar to me.

In my mid teens I began having chronic constipation and abdominal pain. I am now creeping up on 50 and finally got real relief this year.

You and I have the same abdominal gas, pain on the left side right up under the ribs, lower abdominal pain, etc. like you I tried all different types of medications.

Starting in feb of this year it would take linzess 290, miralax 120-130 mg, 6 dulcolax, and a full bottle of magnesium citrate -- every day to get any relief at all. Along with that it would take on average 9 days between BMs.

So my GI doc sent me to a surgeon to have a subtotal colectomy. What they found was that my colon was enlarged over three times the normal size. He removed 4 feet, most 10 cm in diameter. And they found that the nerves in my bowels do not work properly.

Now I am doing so much better. I still take ducolax every evening and alternate the amount - will take 1 then next night take 2, then1, then 2. If I go 2 days without a movement I will take 3.

Don't give up!! It does get better.


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## annie7 (Aug 16, 2002)

thanks for your story, Redmapletree--you've been through so much. your colon sounds a lot like mine was. no wonder we couldn't go...


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## GilmoreGirl (Feb 26, 2017)

Sorry to hear of your story Redmapletree - it's so tough to deal with these things. It helps to hear that you're doing better now.

Annie - I take the dulcolax about 24 hours before it works. So maybe as you say the dose is not enough. It seems as though the constella isn't working well for me anymore either. I'm scared to take more laxative but I guess I will have to.

The pharmacist just gave me the constella in a normal pill bottle with no desiccant, so I'm wondering if it is just going off.

I'm dying to just be able to wake up and go. I'm being held hostage by this it's nuts.


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## annie7 (Aug 16, 2002)

no way should the pharmacist have sold you linzess (constella) in another bottle other than the original one. it's a very unstable med. it says right on the bottle in bold face type that it is NOT to be decanted. my pharmacist did that to me once and i took it right back and told them to give me some in the original bottle.

that very well might be why it's not working.

you can print this out and take it back to the pharmacy along with the bottle they gave you.

scroll down to the 2nd page --the section that says "how should i store linzess" (constella--linaclotide)

https://www.allergan.com/assets/pdf/linzess_pi#page=20

you should really give it a fair chance and take the bottle you have back to the pharmacy and exchange it for constella in the original, sealed container.


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