# 24 years old, IBS-C sufferer, Tried low Fodmap/ medication, Here is my story: please help advise



## katie_d (Jun 9, 2014)

Hi there,

I am a 24 year old female who has always had some minor constipation but the last two years have gotten progressively worse. I finially went to the GI doc who diagnosed me with IBS and gave me a prescription of Linzness 290 mg to be taken in the morning. I didnt have luck on the fodmap diet and the medication cause me severe diarrhea for months. At first I thought it was great since I was finally going again. But then it got to the point where I realized I couldnt live on the other extreme so I asked for something else. She prescribed amitza 24 mcg. That needed to be taken twice a day and not only didnt work, but also caused me severe nausea. It finally got to the point where I went 13 days with only 1 bowel movement. I told her this and she said try eating 2 tbsp. of chia seeds a day and if that doesnt work, she didnt have anything else for me.

So I went to a different doctor, who saw I was young and so presumed I must be healthy. He told me that when I get pregnant (which I informed him wont be until years from now) all of my hormones will fix this. Because hormones are tied to the brain-gut reaction for mobility. That is why it is easier to go when we have our period. That is why women get morning sickness. He prescribed me linzness 145 mg to be taken at night. But that is also not working.

I got blood work done: no celiacs, no thyroid issues and everything was normal and within range. On paper, I am perfectly healthy.

I drink about a gallon of water a day and only eat natural, organic, earth grown nutrients. Nothing from a bag or box. Nothing processed and have recently cut out all alcohol. I found out I absolutely cannot tolerate dairy so I avoid that completely. I also have been eating in tiny snack size portions, some meals I am making completely liquid. But I am still having trouble. I like to exercise at least 5 times a week but when I am backed up, it makes it harder to do so.

Some of my symptoms include:

Constipation (obviously)

bloating

Feeling like my insides are being squeezed

Feeling like my insides are hot/burning and inflamed

I feel like everything is being held up high in my stomach (like it hasnt dropped so I can go to the bathroom)

Even when I go, I dont feel like I evacuated my bowels

When I do feel like I have evacuated my bowels, I feel simultaneously hot/cold and get chills. Its a painful experience but it gets the job done.

I have now begun my own self medicating regime where I will mix different medications like linzness, miralax, magnesium citrate, suppositories, Magnesium pills and sennakot. I dont like doing this because I have already had an accident from taking too many medications at once. This isnt a solution. Its a temporary band aid.

It is shocking to me how little we understand about something so basic, like going to the bathroom.

I am tired of people assuming that I dont have a problem that affects me every single day of my life. I am tired of doctors who dont understand or think because I dont have a diarrhea based issue, that its not that important. I just want some answers. Anything. Has anyone felt the same way? Or can shed light on an experience. Anything would be greatly appreciated. I am out of ideas.


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## garza5266 (Jun 15, 2014)

Hi, sorry to hear about your troubles. I started having trouble "going" december of 2013. My mother got sick and I had to go back to be with her. I was back home for about a month and came back to where I currently live. I felt like I was slightly constipated and I had pain on my left side. I was getting full with just an activia yogurt and feeling uncomfortable. The GP I had at the time did a abdominal xray w/o contrast and found nothing wrong but advised maybe I was constipated and informed me to take 1 senna tab at night, do an enema and then take linzess 145 the next morning. I was instructed to do this for 3 days and continue the Linzess for another week. O and do suppositories if I still felt I wasn't done going. So I started that on a Friday night. By sunday I had mucous coming out and nothing else, but still felt I had to "go". The linzess gave me non stop watery d for 4 hours. At one point I kept straining and felt something come out and thought Finally that turd left. Only it wasn't a turd. It was...mmm... something else. I freaked and called the emergency number to my GP's office and his response was. "it's probably your rectal prolapse coming out a little. Stop straining and you should get better". WTF. So I insisted on being referred to a colorectal doc. He found hemmies, both in and out. Prescribed analpram or something like that. Said to take Miralax and Metamucil. At this time I had to go back home due to my mother getting worse. By this time I couldn't even get a fart out. Fast forward to January and got referred to a GI. He did an abdominal scan with contrast. Found inflamation in my jejenum and gave me samples of Xifaxan. Be for warned, if you suffer from "c" taking Xifaxan will make it worse. Still have the same symptoms. Went back to my colorectal doc and he did a defacogram. I was diagnosed with pelvic floor dysfuntion and non relaxing sphincter. Something like that. Waiting on the biofeedback people to call me to set up my first appointment. Haven't heard much good news about this therapy but hope it will help. I also read online about the Pudendal nerve and how if that becomes compressed it affects alot of things like bowels. I drove from Ohio to South Texas about 4 times in 2 months. And maybe that is what happened. I weighed about 190 pounds in November and am down to 155. I've tried high fiber, cutting gluten, sugar. Tried FODMAP and am planning on trying SCD. I have tried Phillips Colon Health, ULtimate flora probiotics, am now trying Align, but don't feel or see a difference. The miralax makes my insides burn and doesn't really give me bigger or better BM's. Tried Mag pills, again just made my insides hurt. Tried Natural calm mag powder. Made me feel like I had a knot in my throat. Prunes and prune juice don't help. I eat chicken, salads, fruits, veg, brown rice. Healthy. I'm so tempted to just eat whatever I want and see if it makes a difference!! Sorry I wasn't much help. Just venting I guess. My whole family including my husband are sick and tired of hearing me moan or constatnly talk about things I find online and others that have the same probs. Try going for a deracogram. Maybe you suffer from PFD. Wishing you better health. Erika


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## Dreamcatcher32 (Nov 12, 2013)

Your distress over your situation is entirely justified! I'm sorry you have to go through this. I've had a somewhat similar experience to yours. Most GI docs are quite incompetent and can not help you with the symptoms you mentioned. You need to either go to Mayo Clinic, Cleveland Clinic, Stanford Motility Clinic and perhaps others I haven't heard of. These are the 'big names' in gastroenterology. With symptoms as complex as yours, I think a visit is extremely warranted.

It's a good sign that you're getting diarrhea from the Linzess. Have you thought of getting your own gel capsules and separating the lowest dose, so you only take a small amount? Diarrhea is definitely not something you should have non-stop. It causes it's own set of problems. I would NOT go overboard on the laxatives. Mayo Clinic told me to only take these 3x per week at most. If you take a laxative one morning and do not get an urge the next, I would use a Dulcolax suppository or an enema every 3rd day as well. Enema's can be difficult IF you have Pelvic Floor Dysfunction, as the water can stay 'stuck' inside of you. Do not use these more than 1x per week.

I would stay away from Amitiza - too dangerous. Even Linzess is a little scary to me. Magnesium Citrate (Bluebonnet - liquid or pill kind) should help things along just fine. Please remember the goal is not to have explosive diarrhea all day to clean yourself out. The goal is to soften the stool enough to get an urge to go yourself. Also try some Aloe Vera Inner Filler (not whole leaf) and this could help you. Be sure to take plenty of healthy oils and eat proteins and fats, which stimulate peristalsis. After eating a large meal, stand up and try to 'relax' your pelvic floor. (like you're peeing - you may feel a drop) and see if this helps to bring about an urge or a bowel movement. Pooping should be all about a 100% relaxed and enjoyable state. It should never be rushed or forced.

It sounds like you might have motility problems of the stomach if you feel like things are not 'dropping.' These CAN be caused by pelvic floor problems or by something else, tough to say. It's important you see a professional who will do a GI Transit Study and also test your pelvic floor. The 'typical' tests missed my pelvic floor dysfunction. Mayo Clinic had their biofeedback nurses diagnose me.

Good luck to you!


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## katie_d (Jun 9, 2014)

Thank you so much for your advice!

I am seeing my doctor again in two weeks. He finally got back to me and said "The issues you describe and the response to different diets and meds is all consistent with Irritable Bowel Syndrome and disordered motility and perception of bowel activity. At this point I think it would be helpful to evaluate the colon function. There are alternative medications that can increase motility, alter sensory discomfort, or decrease the anxiety related to the bowel issues. Colonoscopy will help map out the system and motility testing might identify an area of dysfunction."

So it sounds as though he is really willing to help me which I am very grateful for.


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## Dreamcatcher32 (Nov 12, 2013)

Great news! Glad to hear he is willing to help you. He definitely need to do the motility testing. Often times the pelvic floor causes 'motility' problems. It can slow the colon down. Once you 'resolve' the pelvic floor issue or at least help it, the colon goes back to normal. At least this is what Mayo Cinic relayed to me.

Let us know what you find out and how you're doing as time goes on!  I am sure you will find relief soon.


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## Devolution (Jun 29, 2014)

lol at "Pregnancy will fix it".

I'm 23 years old. I have also had some minor constipation issues throughout my life. When I was 22 and after the birth of my second child, my symptoms took a turn for the worse. A drastic turn. I'd say pregnancy made things so, so, much worse if anything.

Amitiza also made me nausious and rarely did anything for the constipation.

Have you tried Lactulose solution? Hurts like hell but gets the job done when it's an emergency.

I take nexium 40 MG and Linzess 290MCG.

I have all of your symptoms, minus the Linzess giving me too much of the runs. I wish. Lately it

's the gastritis that's really been getting to me though.


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## katie_d (Jun 9, 2014)

Oh wow. That is interesting that pregnancy made it worse. I haven't tried the laculose solution. Is that an oral supplement that you can buy over the counter?

One thing that has helped some of my pain symptoms is eating very small meals. Like only having a few bites of something at a time. But thats no way to live lol. Hopefully we can all figure this out together!


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## Ouchie81 (Nov 26, 2013)

Hello, I've recently been told by my GP I have a mild mucosal prolapse and haemorrhoids. My GP told me this. I have a referral to a physiotherapist for pelvic floor exercises, referral to gastroenterologist and referral to colorectal surgeon. I also purchased a DVD on how to do exercises for prolapse and have researched how to poop properly. I also found a helpful site called whole woman. I'm am so scared and feel so alone in this. I'm only 33, and female. I thought this was a rare condition for the elderly. I too have noticed that of I eat less and only small amounts it's better. I've had constipation my whole life which I'm sure is slow transit. I also have awful bowel habits which I'm fixing and trying to squat on the loo (using books). I don't have any great advice, I just wanted to talk to someone and let you know you're not alone.


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## katie_d (Jun 9, 2014)

Thank you for sharing this. I have done some more research and I think that I might have gastroparesis since I get nauseous about 2-4 times a day after I eat anything. But I am not a doctor so I will definitely have to see when I have my appointment tomorrow.

Ill have to check out that whole woman website. If anyone has any information on how they have altered their diet to decrease their symptoms, please let me know!


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## ice cream (Dec 30, 2013)

Omg, I was reading op's post and that's exactly my story  I'm at a point of despiration  
How could low motility be treated?


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## katie_d (Jun 9, 2014)

Hey guys, so here is an update from meeting with my doctor today:

He, once again, said that I was young so I must be healthy. (Like yeah dude, this is totally in my head and my idea of fun, not insulting at all).

But I digress, here is the summary: He wants to give me what is called the SmartPill. It is an ingestible capsule that measures pressure, pH, etc as it goes through your digestive system to access gut mobility. It will let him know exactly where the "broken" area is and then if need be, remove it. If it's the whole digestive system is broken, then I'm basically screwed and we are back to square 1. He wants to do this rather than a colonoscopy because that is just a visual way of looking at your system instead of a targeted more precise way. The problem is I have to go to a new doctor for this. They don't have an opening until mid September. Also, it's considered experimental by my insurance company so I have to get pre approved for it. Basically I am in a holding pattern right now. He also suggested that I can try going off my birth control and then of course, getting pregnant. But id rather not do either of those things.

http://www.givenimaging.com/en-int/Innovative-Solutions/Motility/SmartPill/Pages/default.aspx

Ill keep you all updated as I know more!


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## Pinskers (May 16, 2013)

What is with your doctor trying to get you pregnant? Are you sure you're based in the United States? Not to go off topic, but that just seems all kinds of wrong to me. Relieving constipation doesn't seem like a responsible reason to have a child. I can't even imagine what is going on through your doctor's head right now.


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## katie_d (Jun 9, 2014)

Yeah I am in the Washington, D.C. area. I would switch doctors but he is the second GI that I have seen and all appointments (for any GI doc in this area) take about 1.5-2 months to get. Which is an excruciating long time to wait, especially when nothing comes from it.

But he honest to god thinks that we are just biding our time until I get pregnant. Which is ridiculous.

My money is on this SmartPill test. I am really hoping that I can get it and that it sheds some insight into what is going on.

I also told him that it feels like my stomach is asleep. Like it just feels like a useless organ that inst doing anything. He listened with his stethoscope and said that he didn't hear any movement. I'm like, yeah, that's what I've been telling you.

Has anyone had the SmartPill test?


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## Pinskers (May 16, 2013)

You're the same age as me and in the same area, DC. Do you mind PM'ing the name of your doctor?


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## katie_d (Jun 9, 2014)

Of course!


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## supersox22 (Jul 20, 2014)

Hello Katie-D, I am so sorry to hear about your troubles! I'm more sorry you can't get these Dr's to take you seriously, but I think it has more to do with the fact that they know there's not much they can do about it..it has been my experience that the general medical community is useless when it comes to chronic conditions.

There are some things you said that concerned me a little bit, "gallon of water a day..only natural foods, earth grown...tiny portions". I have IBS-C as well and find the typical advice you find for fixing constipation to be the exact opposite of what I need.

1. Stay away from stuff high in insoluble fiber, which is exactly what most medical professionals tell you to eat. Instead stick to things that have lots of soluble fiber in them (a lot of these things also have insoluble, but the soluble seems to help balance it out) like zucchini, oatmeal, chia seeds. I've also found carrots sit well in my stomach, but that's about it as far as vegetables go. I have also almost completely given up fruit and other refined sugar. This also means stay away from brown rice, try white instead. I used to be afraid to eat white rice because I thought it would be binding and make my constipation worse..it doesn't. I have no idea, but I don't care (I don't know if it makes a difference but I make my rice with ghee and salt, tho the ghee might be a trigger for some people so play that by ear). Stay away from whole wheat bread and eat fresh baked sourdough or french bread instead. (my personal triggers seem to include wheat, but the effects of sourdough and french bread are no where near as bad as whole wheat or the bagged white stuff).

2. All that stuff like metamucil only ever worked for like 2 days for me and then started making things worse so I dropped those.

3. Like you, I tried drinking tons of water, which I now think was making things worse. When left to my own devices, I drink about 3-4 c. of water a day. I notice if I drink too much at a time I blow up like I'm preggers. I listen to what my body tells me, and swelling up like a balloon tells me something is not right, so I don't drink large quantities of water anymore. I've also read else where that, counter-intuitively, drinking large amounts of water can have adverse effects on people with constipation...I'll try and find that website later.

4. I used to eat small portions. But then I realized after a big meal one night that I don't think my body recognizes that my digestive system should be switched "on" when there's barely anything in there to digest. So now I have a small breakfast, a small lunch, and a large dinner...not so large that I'm in pain from stretching my stomach, but large enough that there is no doubt in my mind that I'm full. You may want to try this the day after a BM..I know how nauseating the thought of eating large meals is when you're backed up. I do this large meal with foods I know don't bother my stomach (for me--something like chicken tacos made with corn tortillas, fried zucchini and carrots, and fermented sauerkraut for a natural source of probiotics) This seems to have helped quite a bit.

5. If you're not already, try adding fish to your diet. Most people with IBS-C find fish fairly easy to digest. I eat shrimp once a week, and salmon once a week. (Fish isn't my favorite so I'm working up to it). I went out to dinner at a seafood place once and had alfredo pasta with salmon thinking, knowing, that I was going to have problems later (dairy and pasta, yikes!) but I didn't care b/c I wanted enjoy my dinner and deal with it later. I was extremely surprised to find I didn't get bloated or flatulent. I later read that fish can have a soothing effect on the gut, so now I'm sold on it 

6. Last bit of (hopefully helpful) advice. If there's anything you can find that you can do which you really enjoy that can take your mind off of things for a couple hours..do that! I've noticed that while stress isn't the sole cause of my IBS symptom flare-ups, it is definitely a contributing factor, so I do what I can to take my mind off my troubles with things that I enjoy. For me personally, it's been the beach..I enjoy the water and it's something I can do alone so I don't have to worry about what kind of impression I'm making if I need to make long-ish bathroom trips or that kind of thing. I get to the beach as often as I can, it doesn't fix everything, but it does help.

Over this past month or so I've decided to really tackle this problem to try and figure out exactly what I can and cant' eat. I started keeping a diet journal. It's been really difficult and at times has made me sick in other ways because my diet/nutrient intake has been so limited, but very slowly I'm increasing my list of foods I know are safe. I'll check back to see how things are working out for you, I wish you the best!


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## katie_d (Jun 9, 2014)

Thanks for this awesome reply!

I actually got my doctor to schedule me an upper endoscopy and a colonoscopy on Thursday so hopefully that will provide more information.

I agree about the eating one big meal. Sometimes I will get so sad and hungry and binge eat something and then next morning I will have a bowl movement. Almost like it "shocked" my digestive system into action.

I have been eating A LOT of sushi. I find that very easy to digest and always get extra pickled ginger.

I do MMA and when I go in my stomach hurts but usually after all that exercise really took my focus off of my stomach so I do enjoy that.

Thank you for your response though. I will definitely start implementing the water idea. I do also feel really full and bloated when I drink too much water rather than eating.


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## Ouchie81 (Nov 26, 2013)

Hello,

Just wanted to share the things that have helped constipation for me
Natural
- aloe Vera juice with prune juice
- bran
- magnesium and vit c tablets
- licorice 
- to much chocolate
- water and exercise 
- Reflexology
Most of these might give you a tummy ache first

Medicines
- microlax enema
- suppository
- stool softners
- senna

Hope that's helps.

I'm having a colonoscopy soon too. Just waiting for the call. Good luck with yours. Are you seeing a colorectal surgeon or gastroenterologist? Have you had other testing? Some of your symptoms match several possible conditions


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## katie_d (Jun 9, 2014)

Thanks!

Im seeing a gastroenterologist.

They found a hiatial hernia in my esophagus and said that my sigmoid colon is redundant (basically meaning it is extra long). They took some biopsies along the way so we shall see if that sheds any light as well.

Still waiting to get into an appointment for the smart pill testing. I have had a blood test before but that was the extent of the diagnostics.


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## Nojokeibs (Apr 14, 2014)

Devolution said:


> lol at "Pregnancy will fix it".
> 
> I'm 23 years old. I have also had some minor constipation issues throughout my life. When I was 22 and after the birth of my second child, my symptoms took a turn for the worse. A drastic turn. I'd say pregnancy made things so, so, much worse if anything.
> 
> ...


^^^ This has my vote.

Whoever that doctor was, run, far fast away from them. Pregnancy is the time when some women become the most constipated. And the low hormone period is when I am the most constipated every month (during my period I mean). Any perusal of a "new baby" type forum will make that obvious. I think that doctor was trying to get rid of you if they lied so blatantly to your face. Some women have never experienced constipation until pregnancy. The "pregnancy is a magic cure for everything" theory is bunk.

I think we're dealing with the general lack of knowledge of medicine about the human microbiome. That is emerging scientific research that won't make it into the "clinical practice" of doctors anytime soon, but you can read about it on NIH's website (Human Microbiome Project). It's the reason why we're seeing more and more and different types of probiotics on the shelves of Whole Foods and such places. I found some sauerkraut recently and tried it. I wrote a blog entry about it too. It's here, maybe it will help. I am not well yet, but I intend to be and nothing will stop me, not even stupid doctors.


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