About this Support Group

Whether your IBD manifests with constipation over diarrhea, or you deal with constipation that's chronic or otherwise, I wanted to create a support group for those of us that have to put up with these awful symptoms, and can talk about how we're attempting to deal with them or live with them. Or even just report how we're feeling about it without creating a new thread.

I'll add a list of medications to treat constipation with the next time I revisit this thread!

Members

abramslg, afidz, Ali29, apopolizio, brooklyn23, Carrie, cdnrose, Cenedra, charlottem, Cherry04, Christy50, chuckmya, Civil69, crappy.gene.pool, CrohnsFighter, Cupcake23, Donk4263, Dragonfly72, Farmwife, Fraz, Gail Jothen, Glambie, GlitterAndGlam, gordan, HorseLover!!, John 470, Karen M, kcline1, kellehbeans, Kevin_61, Leed2713, Lizzie, Lolli, Lynda Lynda, Momoftwo, nayabk, ncman, patrick13, Peacelovelace, penny3, ronroush7, Sarahwm, Sophs mom, Tash_919, theOcean, TravelingTrees 73, Turfymantis

I know Afidz wanted me to tag her when I created this, so there she goes.

My own experience with constipation started last August (2013), when I was finally getting out of a lengthy flare. My GI doesn't know why it started, but assumes my motility just isn't as good as it used to be. I would still have 1 - 3 BMs a day, but it would be horrendously painful and hard. Diet impacted absolutely nothing. I'm being referred to a motility specialist, but that's -- unfortunately -- going to take time.

I'm attempting to treat things now with Linzess, and so far it's definitely improved over when I was treating my constipation with Miralax, especially since it's actually intended for more long-term use.

In my case, my constipation stems for poor pelvic floor muscles mostly associated with my hernia but Crohn's probably plays a strong role in it too. But, I think my problem also comes from taking advil because I stopped taking it (thanks Remicade!) and I haven't had too many problems since.
I would go 2-3 days with not being able to go, but feeling the need. No matter how hard I tried, it just wasn't going to happen. When it finally did happen, my stools were so big from building up for 2-3 days that I would clog the toilet every time-even if I flushed before wiping.
Linzess works pretty well, at least for me it did. I would take it once every 2-3 days. That wasn't my doctors instructions, he wanted me to take it every day but I felt that if I woke up and was able to go, then there was no need to take it.

Yeah, I've been taking it every three days or so as well. When I looked up reviews for Linzess it seemed like that was actually pretty common -- adjusting it to whatever our bodies needed, rather than taking it every day.

It's so nice to just be able to take a pill, rather than have to cart around Miralax with me all the time, which didn't really work anymore, anyway.

I've suffered myself with constipation for years! So much pain from that! I found that taking stool softeners and senna would help keep me regular. Without them I prob would only have one BM a week if that!! I feel so much better when I'm able to go on a daily basis!

Ds has been constipayed since he started solid food .
Daily miralax plus probiotics , low fiber all help things move .
We saw a significant improvement once he was placed on biologics .
He is also probably associated with weak pelvic floor /crohns . He has had recurring rectal prolapse for 4 years which makes the constipation worse .
It's a vicious cycle .
He gets hard stool...which makes his prolapse inflamed .... Which activates his crohns
...which slows things down more... Which makes his prolapse even worse and spreads the crohns inflammation up the sigmoid colon .
It took us a long time to figure that relationship out.

I've been having problems with recurrent constipation since April. In the mornings, I'd have to dash to the loo up to 10 times to push out next to nothing. It was horrible.

Early on, the constipation used to clear up on its own after 2 or 3 days, but it started persisting for very long periods of time. So I started using Miralax in June, and that has helped me go more comfortably (though if I don't take it for a day or two, I'm back to square one).

On my last visit to the GI, she suggested I may have IBS in addition to Crohn's and that I should try a low-FODMAP diet for four to six weeks to see if that helps with my symptoms.

I'm convinced one of the reason my daughter had such a long road to being dx was because of her constipation.
Even after dx the docs still would act dumbfounded that she could have IBD. Grrrrrrr
Grace has also had a prolapse and was on 3 adult doses a day of Miralax.
She's also been dx with weak pelvic floor which only adds to her issues.
However her Remicade has help
and hopefully in the future she'll be able to get of Miralax.

Add me to the constipation list. Has been an issue since day one. Tried a handful of things over the years and finally landed on miralax. No where near as effective as it was when I first started, but I think I found the right balance. 2/3 cap daily keeps things soft.

How long have you been taking Miralax, and how often? I find it loses effectiveness distressingly fast for me, and wonder what it's like for others.

Ds has been on miralax for 4 years .
Until biologics it would lose its effectiveness and we had to keep increasing the dose.
Once on humira we still had to play with the dose depending where he was time wise from the shot day.
After he switched to shots every 10 days plus Mtx . I can give Ds basically the same dose and get the same results .
He also takes chelated magnesium plus iron pills ( different times of day ).
So that helps I am sure .
Iron pills without food and he has pure liquid bloody D .

When first started, I remember bringing the packets with me at my contract job to mix in my drink over lunch. I left that job so it has to be at least 4 years for me as well. I initially started at lunch because that is really my only consistant meal of the day and would remember if I took it. The packets were expensive, so I switched to dinner time and use the bulk miralax bottle.

One unknown fact we found out three years in.
One doc accidently sent the miralax prescription to the pharmacy vs saying buy it otc take xyz amount.
Our drug plan actually covers it .
Considering how much Ds takes every single month .
It was an added bonus .

One other thing
For Ds at least if we decrease his peptamen jr below two shakes a day
His constipation gets worse.
It's a real balancing act .

*waves* Hey, I just found this group. I've always been surprised since I rarely have loose stools. Lately I vacillate between barely going at all (maybe a few rabbit pellets for a few days) and then going multiple times a day, sometimes loose or watery, sometimes not, and then right back to the rabbit feeling.

hi

So, long time no see. I figured it's probably a good idea to at least update this thread, especially since I've been doing so much better.

I started taking Linzess at the end of last year, and it's been sooo effective for me. I only need to take it every two weeks lately, and I'm fine that entire time, and don't have any pain going to the washroom anymore. It's so great. I don't need to think about it, or stress about it anymore. I know it's likely not for everyone, but I'd really recommend it to those that are having chronic problems.

so glad to find this group. I have had C most of my life, then IBS about 20 years, which turned into IBD, with constant pain but no diarrhea. It took me 4 years to find a dr who diagnosed me (via pill cam) with IBD but since I don't have diarrhea he just calls it IBD but I think it is Crohns, as I have all the other symptoms except diarrhea. I have had only 2 doses of Remicade, have another next week. I have stools about every 2 days, hard and small. Blueberries help (in season) and so does powdered brown rice protein smoothies. I am also in the support group for those Crohn people who are too skinny as I lost 40 pounds in 2 months I did not need to lose and cannot gain weight although I eat 3 meals a day.

so glad to find this group. I have had C most of my life, then IBS about 20 years, which turned into IBD, with constant pain but no diarrhea. It took me 4 years to find a dr who diagnosed me (via pill cam) with IBD but since I don't have diarrhea he just calls it IBD but I think it is Crohns, as I have all the other symptoms except diarrhea. I have had only 2 doses of Remicade, have another next week. I have stools about every 2 days, hard and small. Blueberries help (in season) and so does powdered brown rice protein smoothies. I am also in the support group for those Crohn people who are too skinny as I lost 40 pounds in 2 months I did not need to lose and cannot gain weight although I eat 3 meals a day.

In the spirit of updates, my C stopped after having a colonoscopy in February. I have a stricture right at the end of my colon that was causing my issues. I got that dilated, and now I suffer occasional bouts of D like a "typical" Crohn's patient, and can deal with life so much better.

See this isn't really an active group, but thought I'd join as I have 'constipated' like stools, but still go quite a few times a day. At the worst of times, I can go without going for a week. I seem to cycle between diarrhoea and constipation, but more the latter.

kellehbeans said:

See this isn't really an active group, but thought I'd join as I have 'constipated' like stools, but still go quite a few times a day. At the worst of times, I can go without going for a week. I seem to cycle between diarrhoea and constipation, but more the latter.

You sound just like me. For me it really made the crohns diagnosis confusing since I didn't relate contstipation to crohns at all. I've had issues with it all my adult life and my daughter does as well.

The only time I don't seem to be constipated is while I'm on vacation in the sunny south. Not sure if it's the diet, the drinks, the relaxation or maybe the humidity but I'm thinking I should be moving to the islands

My constipation confuses the doctors also, that and the fact I don't actually bleed. But I am riddled with fissures etc., but funnily enough, those were caused by diarrhoea, but of course, constipation really doesn't help.

I have no idea what constipates me, but I also don't know how to make myself go any more. Usually a McDonald's burger would be the trigger I needed, but not any more! Nothing happens what so ever! I am currently taking Laxido daily, but may need to put my dose up by another per day. I can deal with the diarrhoea, just not this!

I'm lactose intolerant so I can have a big bowl of ice cream to get the bowels moving. I don't like to because of the pain that comes with it but it does the job.

I'm getting ready to start remicade and I feel a bit like a fraud when the nurses start asking all the questions about how many loose stools I have a day. I'm always saying none unless I eat a trigger food (which I have been avoiding) and I feel they are judging me due to that, it just seems to be very unusual I guess. I still question whether I have crohns or not but I guess the MRI and colonoscopy don't lie, inflammation and ulcers in the small intestine showed on both.

I am meant to have fructose malabsorption (only dx by process of elimination, need breath test to confirm, but hard to get in UK) and that seems to constipate me more! It also makes me crave more sugary things, which of course, makes me worse! So, ice cream pretty much constipates me!

I am still undiagnosed, so I have not had to deal with the medication side effects - just constipation caused by my anti-depressants (Venlafaxine which is Effexor). They seem to think it will probably help my stomach because it is known to help people with IBD and IBS, but my problems started when I was on this before. I have recently been told to take it again.

Don't question what they have told you and seen! I am having my first colonoscopy on the 30th of this month. It is a sigmoidoscope because most of my problems seem to be in my colon and rectum. I've done a lot of research today, and it really is not uncommon to have Crohn's and constipation at the same time, especially if it is in your small bowel!

I'm so glad I found this group. I feel so weird when nurses ask me about the diarrhea and I have to tell them I am always constipated. Laxatives don't even make me go, I sometimes take several doses yet it doesn't work. Glycerin suppositories help but don't always work well. Even I didn't believe I had crohns because I'm fat and constipated all the time. I diet all the time, nothing works I just keep gaining weight.

They told me today at urgent care to take miralax for the constipation.

kellehbeans, have you been on the low FODMAP diet? It helps with fructose issues. Actually helps with digestive issues period although one must taylor it to one's own disease variety. That's what we have, a variety of problems and a common name. My symptoms may be different than yours. That is NORMAL. And my treatment different from yours. That is NORMAL. Nurses and doctors cannot, should not, put us each in the same box. We are too complicated. I have always had constipation problems, and now with Crohn's I never have diarrhea. But my treatments have helped/hindered C. I took tramadol which constipated me worse. I took carafate which constipated me worse. I'm off them, and am pretty normal now, but every medication has a side effect unfortunately. We have to try things and decide it they help or not.

Does the miralax fight what the colestpol does?

what does colestpol do?

I think it is to slow down diarrhea.