# Where do I start?



## J.D. (Jan 15, 2015)

Hi,

I'm new to the forums. I've been diagnosed with ibs/constipation and would like to know how to get started here. Do I post my history / symptoms?

Thank you so much for any assistance!

J.D.


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## annie7 (Aug 16, 2002)

Hi JD and welcome to the board . sorry you've been dx'd with ibs-c. there are a lot of us here, so at least you're not alone.

there are lots of good tips and advice here...good diet advice, info on medications, supplements etc. so you might want to take a look around when you get the chance.

really--it's pretty informal here. just get started any way you want . history and symptoms are fine...ask questions..whatever works ...


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## J.D. (Jan 15, 2015)

I have severe constipation and I have to take an enema every day. Sometimes I have to take two or three enemas to make everything come out (one time it was five). I do this in the morning. It keeps me from being able to go camping or having a girl over and things like that. I have taken to eating a mostly-gluten-free diet on the advice of Sophie :Lee in her book 'Sophie's Story'. I drink fiber supplement three times a day. I take Senna at nite, and Linzess upon waking in the morning. I eat a serving of Fiber One cereal for breakfast even though it has gluten in it ''cause it's the only high-enough fiber cereal I know. Then I eat a couple servings of a gluten-free cereal that has 5 grams of fiber in it, 20%. Then I wait fifteen minutes to take my enema. I have tried an awful lot--prune juice, these injections whose name I can't recall, suppositories--and only the enemas seem to work. But they really interfere with my life. I take a lot of psych meds, including Suboxone, that affect my already irritable bowel and make me so constipated. Does anyone know how I can get out of this so I can have some romance in my life? Thank you.

'


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## annie7 (Aug 16, 2002)

...just some thoughts...

have you had any tests to see why you are so constipated? do you have a good gastroenterologist?

the sitz marker test (colonic transit study) will dx slow transit constipation (colonic inertia) I have that.

a defecography (defecatory proctogram) will dx outlet problems such as pelvic floor dysfunction, a rectal prolapse etc. an anal manometry is usually needed to further dx pelvic floor problems. I have both those fun tests too. and pfd. biofeedback can help with pfd.

would you say all that fiber is helping you? quite a few of us here have--especially those of us with slow colonic transit--have found that fiber is not our friend. years ago, before I had all my tests, I was first (incorrectly) dx'd with ibs-c and my doctor at the time told me to load up on fiber--40 grams a day. omg that made me so much worse---dumping all that fiber into my slow, barely working colon. I found I do better on a low fiber diet.


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## Sean (Feb 8, 1999)

I agree with Annie about having a good gastroenterologist and having the battery of tests to determine the true nature of the problem with your colon. That said, you are probably taking way too many enemas. What kind are you using? If you are doing the over-the-counter disposable phosphate-type (Fleet), you are probably seriously overdosing on them. Have you ever just tried stopping the enemas and waiting three or four days to see if the senna and Linzess will do the trick and produce a bowel movement? That would seem to solve a lot of issues that the enemas seem to be creating for your personal life.

I struggle with unrelenting chronic constipation that has gone on for years. I no longer have any kind of bowel movement without some kind of intervention - usually Dulcolax. Despite all of my issues, I have figured out how to live a relatively normal life. It just takes a little planning.


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## J.D. (Jan 15, 2015)

I have a gastroenterologist but probably not a very good one. He's given me a colonoscopy and said that my colon is lazy because of the medications I take (I was on Methadone for ten years). He claims it's not reversible. Without the fiber one cereal I can't have a bowel movement with the enema. Without the other fiber it's not as "clean" of a bowel movement. Maybe I could try to not take Fleet's in the morning for a couple days--or even one day--but in the past that causes the excrement for come part-way out without being completely released and that's even more uncomfortable. I thank you both for your suggestions though, Annie and Sean!

Going gluten free seems to have made a difference because before that I'd have little bowel movements all day but never where it would all come out.

I'm afraid of starting a relationship with this kind of problem where I have to take a noisy dump every morning--complete with groaning--and it bums me out that I can never go camping with a significant other. If only I had the courage to try not to take an enema some morning. But the last time that didn't work out so well.


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## J.D. (Jan 15, 2015)

Annie--I'm sorry, what does dx and pfd mean? Thank you.


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## annie7 (Aug 16, 2002)

oh no--you don't have to apologize--i'm sorry I didn't make it clear. dx is short for diagnosis. pfd -- pelvic floor dysfunction.

often you can find a good gastro doc working at a university hospital. these gastros tend to be more knowledgeable, up-to-date and proactive about treating constipation. one of my gastros is a univ gastro. he's terrific--all of the above plus he also is caring and actually listens to me.. totally love him.

I understand what you mean about needed to go daily to feel comfortable etc. i'm like that too. plus I get impacted rather easily. enemas no longer work for me so I take dulcolax and milk of magnesia every night (not at the same time--that causes cramping). my gastros and surgeons have all told me to take what I need to go and that's the only thing that works at this point.

oh yes--stool only coming out part way is very uncomfortable. I used to have that problem when I was on a lot of fiber and before I started putting my feet on a shoebox while using the toilet. have you tried that? elevating the feet while on the toilet straightens out the anorectal angle to allow a more complete evacuation. it can take some experimentation to find the height that's right for you. some people can actually squat on the toilet (not me--bad knees lol) .or you can use a footstool, waste basket turned on it's side on buy a squatty potty, which is what I use now. it does help.

as far as noise in the bathroom is concerned....well, everyone makes noise--it's normal. but i do understand what you mean, especially when starting a new relationship. you could try running water while you're going to cover up the noise. run it in the sink, turn on the shower or bathtub faucet.. we've had threads about this before. some people play a radio. etc whatever works.


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## J.D. (Jan 15, 2015)

Thank you Annie, I'll try that. And running water is a good idea, I did it when I was a guest at some relatives' house.


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## annie7 (Aug 16, 2002)

yes, I do the running water thing, too.


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## J.D. (Jan 15, 2015)

Elevating my feet on the toilet did not work out for me. It was a few days before I remembered to try it. It caused the stool to come part-way out but not completely and was real loose and messy. Maybe this means I'm taking too much fiber. Maybe a few days of this nightmare and it will all balance out and I'll just have a normal bowel movement. But this first time I had to take five enemas to get it all out and the fifth enema I didn't elevate my feet so I know it's not all out. I thank you for the suggestion Annie but it worked really miserable for me.

Also I suffer from insomnia and I got up at two-forty-five am and when I'm tired my bowels are weaker, so that could've had something to do with it.


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## marleyma (Aug 13, 2014)

I've attempted the stool thing as long as i can remember. After having rectopexy surgery it seems the stool makes things worse like they are getting stopped when i put my feet up. Anyone know why!? I often feel like my insides are all out of sorts ever since that surgery lol.


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## annie7 (Aug 16, 2002)

hi JD. i'm so sorry elevating your feet didn't help and turned out to be such a miserable experience.

i really think it would be a good idea if you were to discuss all this with your gastro doc and ask to get tested for pelvic floor dysfunction, like i mentioned earlier. pelvic floor dysfunction (pfd) is not just a woman's problem like some people think--men can develop it too. with pfd, the pelvic floor muscles don't coordinate and/or relax properly to allow easy passage of stool. ineffective pelvic floor muscle coordination results in inadequate relaxation of the pelvic floor while attempting to have a BM. the puborectalis muscle tightens and contracts when it is supposed to relax to allow passage of stool. so you can't get it all out (incomplete BM).

biofeedback is very helpful in training those muscles to relax and coordinate properly. i helped me.

i don't know if this will be any help either but i found it very helpful. it's a video on how to have a bowel movement without straining. it's done by a pelvic floor physical therapist. a lot of the things she mentions are things my biofeedback PT told me about--such as pushing from your belly ("making your waist wide") instead of pushing with your rectum, which is counterproductive.






and yes, like you said--maybe too much insoluble fiber is causing the problem of stool getting stuck while it's coming out...

oh yes--i have chronic insomnia too and i agree with you....when i'm very tired like that, it sure doesn't help me go.


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## annie7 (Aug 16, 2002)

marleyma---hmmm that is mystifying--to say the least--as to why your surgery made using the stool worse and resulted in things getting stopped up. that certainly is frustrating to say the least. maybe your surgeon would have some explanation? or your gastro doc?

or maybe try putting your feet on something that's a different height than your stool like a shoe box--or two, one for each foot--or an overturned waste basket etc. i had to experiment quite a bit to find the height--and width-- that was most effective for me.

or hopefully someone else here who has had that surgery can explain...


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## J.D. (Jan 15, 2015)

Annie--thank you for the video and the suggestions. I see my gastroenterologist next Thursday so I will ask about pfd. And if he can't help me I'll get another one. Just one question--what's biofeedback? It sounds like a solution to the problems of pfd,

I didn't quite understand the video so I'll watch it some more.

Again, thanks.


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## annie7 (Aug 16, 2002)

oh good--glad you're seeing your gastro doc soon. if he/she isn't helpful, yes, do find another doc. often gastro docs who work at a university hospital are more up-do-date, knowledgeable and proactive about treating constipation as associated problems like pelvic floor dysfunction. and many university hospitals offer biofeedback and physical therapy programs for pfd. i have a univ hospital gastro. he referred me to the biofeedback program offered at that hospital. it was superb. and so is my gastro, who is co director of the program.. can't say enough good things about either of them--totally wonderful.









this link is pretty good at explaining pfd as well as biofeedback for pfd. scroll down to the section "how is pelvic floor dysfunction treated"

http://my.clevelandclinic.org/health/diseases_conditions/hic_pelvic_floor_dysfunction


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## J.D. (Jan 15, 2015)

I hope I have more success with biofeedback than I did with kagles (spelling?). Thanks.


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## annie7 (Aug 16, 2002)

oh yes, i think you will.

the biofeedback PT's are so helpful in explaining everything and the program is tailored to your specific needs. among other things, the PT has you doing the relaxation kegels (not the strengthening ones) while you are using the biofeedback machine. the machine shows you your progress and your PT gives you a lot of tips, suggestions and encouragement during the whole process. these PT's are quite highly trained and knowledgeable. i asked mine tons of questions and really learned a lot.


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## J.D. (Jan 15, 2015)

The problem is the physical therapist used a machine to measure my progress with kegels and I couldn't do it at all, get any results. I'll try again, though, if the gastroenterologist thinks I need to go down that path. I might have to get a new one first, though.


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## annie7 (Aug 16, 2002)

yes, you might want to give biofeedback another try with a different physical therapist--a "new pair of eyes", so to speak. one of my gastros as well as my biofeedback P

T did mention that that can be very productive.

I bought a home biofeedback machine--the U Control-recommended by the mayo clinic to their patients. it was expensive but worth it . I've had such long standing problems with pfd and a tight muscle memory to unlearn. daily practice on my home machine has been very helpful in teaching me to relax and improve my score. my biofeedback PT and my gastros were so happy that I bought it. plus I found it much easier to relax in the comfort and privacy of my bedroom.

some other things that can help relax tight pelvic floor muscles:

sitting in a warm sitz bath or bathtub with water at hip height relaxes those muscles.

ask your doc about baclofen or valium, etc rectal suppositories. they also help relax tight pelvic floor muscles.

botox injections can also help. ask a gastro doc or a colorectal surgeon.


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## J.D. (Jan 15, 2015)

Thank you. I'm seeing my gastroenterologist today and will bring forth your suggestions.


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## annie7 (Aug 16, 2002)

good luck! hope your appointment goes well. keep us posted if you get the chance--thanks.


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## J.D. (Jan 15, 2015)

Annie--My gastroenterologist says that biofeedback doesn't work for constipation, only incontinence and diarrhea. He also says that the tests you told me about are only for people who have had surgeries or been pregnant (I'm a male). Is this true? Or should I get a second opinion? I have to tread carefully because this doctor is my Linzess connection and he wants to prescribe something that will cure my hepatitis C, and I don't know if the insurance company will pay for two gastroenterologists. At the same time, I find having to take two enemas in the morning unacceptable, and he doesn't. Any thoughts on how much weight I should put on his feedback? Thanks.


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## annie7 (Aug 16, 2002)

no no no that is not true and i am so sorry your gastro is so misinformed. (sorry i just get very upset when i hear about docs like this--they really tick me off)

biofeedback does work for constipation IF the constipation is caused by a tight rectum/anus that won't let stool out and or tight pelvic floor muscles.

also he is wrong --it is not just something mothers get. i have it and i have never children. it is also not something that only women can get. men can get it too. here are a few links that say that and also a link to another forum here on this board where men have been discussing this problem--pfd, etc. several of them are doing biofeedback and it's helping them. there was a post just last night about that.

http://www.ibsgroup.org/forums/topic/170586-male-25-suffering-from-wet-anus-obstructed-defecation/page-4

this link talks about where the pelvic floor muscles are in men and constantly refers to "people" having pfd not just women:

http://my.clevelandclinic.org/health/diseases_conditions/hic_pelvic_floor_dysfunction

this link say right at the beginning "it's not just a women's disorder."

http://www.mccc.edu/~behrensb/documents/pelvicfloordisorderpresentation.pdf

...i could google on and on for links that say the same thing...and rant on and on, too..

on another board i read i've read posts from men who've been diagnosed with pfd.

. and oh yes, i totally understand why you have to tread carefully with this doctor. definitely do that if he can help you with other issues. you don't want to step on toes..

but yes, if you can, please get a second opinion. see a gastro at a university hospital--they are often more proactive and well informed. or go to a men's urology clinic. or you could try seeing a colo rectal surgeon. they are experts in the field of rectal problems. after looking at my tests (my defecography indicated pfd--so did the sitz marker) and after doing a digital rectal exam , my c/r surgeon also dx'd me with pfd and referred me to biofeedback, like my gastro, who had already seen these tests, had suggested.

i do think most insurances will pay for second opinions. it's quite a common thing. my insurance even pays for me having two gastro docs simultaneously. which really surprised me, since i have a tight fisted hmo and often it's a battle to get them to pay for stuff. when i asked them about if i had coverage for two gastros, the woman told me they'll pay for as many docs-gastro or otherwise--as my primary care doc thinks necessary. i do have to get referrals from the pcp for everything. but as long as i have that all important referral, i'm golden.

or you could go to someplace like the mayo clinic--which has probably the best pelvic floor "boot camp" in the country. or the cleveland clinic. try places like that.

and omg--two enemas in the morning is unacceptable. how would he like to have to go through all that every day??? i think NOT!

keep me posted! fingers crossed you can get the help you need.


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## J.D. (Jan 15, 2015)

Thank you Annie. I got a couple University hospitals in town I can choose from. I'll keep you postedl


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## annie7 (Aug 16, 2002)

oh good! yes, please do keep me posted. good luck and fingers crossed!!


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## J.D. (Jan 15, 2015)

I couldn't get an appointment with a doctor until June 2.


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## annie7 (Aug 16, 2002)

sorry you have to wait so long. that's always frustrating. but at least it's good you're getting in to see someone.

you could call the office to see if they keep a cancellation list and get on that. or else just call them periodically to see if there's been a cancellation.


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## J.D. (Jan 15, 2015)

Yeah, actually I forgot to ask if they have biofeedback and they don't. I was able to make an appointment with a hospital that does have biofeedback but not until June 26. I don't have a car so my mobility is really limited. The first place mentioned a cancellation list but the second place didn't. I'll call back and ask.


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## annie7 (Aug 16, 2002)

good luck!


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## J.D. (Jan 15, 2015)

Thanks, I need it. I can't afford the two enemas a day my body's been making me have.


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## J.D. (Jan 15, 2015)

Grrr... I didn't mean to make a post...


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