New here - thank you - Ulcerative Colitis and Chronic, Severe Constipation

Hi, I'm new. I've read this forum off and on for several years and it's time I start posting and contributing and giving back in any way I can. I've received much comfort and "home" advice and in general "misery loves company" kind of relief here. If in some small way, I can help others, I will.

But my first post is seeking advice. I have been diagnosed with UC for 14 years, I'm 57 now. For at least 6 months I have had chronic severe constipation. My mother has suffered from severe chronic constipation for at least 30 years and she eats the perfect diet, drinks plenty of water, still exercises at 87 (senior water aerobics although she mostly does the arm movements, and senior yoga and senior chair exercises all offered at her retirement community), and now has a VitaMix so she can juice. Has seen every possible specialist. None recommend the Rx drugs for her idipathic constipation. She takes cod liver oil, Miralax and gets by.

I am now understanding my mother's misery. Honestly, I had no idea constipation could be this bad. It is 4 to 5 days, I've gone 7 without a BM. I look pregnant. I feel awful. When I do have a BM, it is not hard but it also not loose. I have a BM because I finally get desperate and take 3 Dulcolax, drink Smooth Move Tea by the bucket with Miralax added.

I have to go to see my Gastro. I don't know about you but I just hit a wall sometimes with going to the doctor and all the subsequent tests.

I notice many have IBS along with UC or Crohns. How do you differentiate that you have IBS-C or IBS-D in addition to your UC?

Or have any of you started with a diagnosis of UC and then progressed to Crohns. I will be going to my doctor but it is comforting to hear from real people with real experience and perspective.

Does anyone have UC and idiopathic constipation? This sounds crazy to me. My last colonoscopy was in July 2014 and all was good, no polyps, UC was at same stage and in same areas. No change from previous colonoscopy.

Thanks.
Lulu

Hey Lulu, Welcome!

I never have constipation so I can't really relate to that but I have had UC for quite some time and the diagnosis hasn't changed. I haven't had a endoscopy so I suppose you never know. There are members here who suffer with constipation and have UC - it definitely goes both ways, constipation doesn't mean crohn's. Have your biopsies always been consistent with UC?

I have crohn's colitis (CD affecting the colon) and IBS-C sometimes alternating with D. I've been sick with crohn's for 24 years and my GI thinks I developed my IBS around 13 years ago, he had me do a stool weight test, I had to poop in a paint can provided by my lab for 72 hours for collection. I also had severe lower back pain and rather than constant diarrhea like I had when I first got sick with CD, my stools were mostly formed but often pencil skinny which is also common with IBS and a very emotionally stressed life (another major aggrivator for IBS more so than IBD).

Last year my IBD finally went into remission from Humira, but I was still have major constipation and frequency, so I still "go" many times in a day but they are very difficult to pass and sometimes I would still get skinny stools that were equally hard to pass and some lower back pain as well so these symptoms all pointed clearly at IBS and confirmed to my GI what he suspected so many years ago (he's one of the top lead researchers in Canada and he clearly knows his stuff).

He referred me to a dietitian to aid me with my diet, she put me on FODMAP-no fructose, I just started the diet on Monday of this week and already noticed by the 4th day that my stools were becoming easier to pass, and they are much softer (nothing at all like constipated looking poops like the little round balls of poops or the formed poops that are distinct with having round small pieces all clumped together as shown on the Bristol stool chart--my stools varied from 1-3 on the chart which are all indicative of having constipation).

I also just started seeing a therapist to help me with my emotional stress, so we'll see how that goes along with figuring out how to get a handle on it if at all possible.

I was diagnosed with UC, even suspected Crohns, but never have had diarrhea and was always constipation so I never felt dx was correct. Recently had a sitzmarker study and was confirmed with colonic inertia. My surgeon explained to much stool hanging in the bowl too long and hard stuff sticking can actually cause an ulcer, and can cause overall inflammation, edema, erythema like my colonoscopies would show. Maybe started when I was very young. Made a whole bunch of sense to me. I felt like I finally had the correct diagnosis.

I personally would rather have diarrhea than constipation. I had constipation for many years before I got UC (although I think it was due to my poor diet back then). I got severe constipation when I first got UC before all heck broke loose and it turned to bloody diarrhea. I also sometimes get constipated at the beginning of a flare. I get constipated when I take Zofran for nausea too and it's almost not even worth it and I'd rather be nauseous. I take Miralax for those times and it helps. I'm sorry that I don't have any advice.

Oh, oops. Lol.