Exhausting/painful bathroom trip every 2-3 days

Hey all,

I'll give a quick recap of my background. Diagnosed with Proctitis originally about 8 years ago. Since has turned into left sided colitis and ended up in the ER back in June due to a bad flare (after stopping remicade, which I've since gone back on). Came out of the hospital on 60mg prednisone and started feeling a lot better over time. Was on a good trend to weaning off and am down to 15mg.

Past few weeks, I've been having symptoms I haven't had before with UC. Basically, every 2-3 days I get a really painful bowel movement. I get my usual urgency, but when I go I feel aching pain along the area below my belly button. I end up having to basically poop everything out of me. It feels like constipation combined with pain. The whole thing ends up being a 10 minutes painful episode, with me feeling nauseous and fatigued afterward, but i end up feeling a bit better, until the next episode comes up in a few days.

Not sure if I'm backed up, I do end up going between these episodes, just not as much. So then it's maybe something hitting my colon quickly. The stool ends up smelling like bile, so I'm pretty sure it's a fast transit time. No blood, stools are thin (due to hemorrhoids, at least thinking it's due to that). Also not sure if it's just the remicade only lasting 4 weeks now versus the 8 (already double dosing). Or if it's the prednisone weaning.

Tried switching up probiotics. Have been taking fiber daily as well (first metamucil then citrucel). Can't seem to find something that's giving me relief. I know the doc wants to get me off of the prednisone because if I can't, I'm looking at surgery. He had me bump back up to 20 thinking maybe it was the result of weaning too fast, but I don't think it was.

tiesto81

Your post, like so many others on here describe what I am going through so well.  After my 7th month on Remicade, I started with similar symptoms - thought I was constipated, but then would have one heck of a bm - pencil thin, then, mush, d, more mush, some formed - all within a half hour or so.   All very, very painful and nauseous.  Sometimes the pain feels as if there is something very hard and sharp pressing on something very tender.   I too have thought it was hemmroids, but now I am not too sure - I think it is rectal swelling. 

Have been taking the polyglycol stuff.  Got the impression from the Dr.'s nurse that there could be a big blockage anywhere along the colon and the d and mush just kind of pushes past it occassionally. They had me take two bottle of mag citrate to try to clean out, followed by enema (which didn't work).  Then I did the same thing a few days later.  While it helps for a day, the same symptoms seem to return. 

You are lucky he still lets you have the prednisone - my doc will not. 

Remicade worked for me only a few times (started in May).  It worked after the July infusion well for about two -three weeks.  It worked after after the Sept infusion for about a week.  Hasn't worked at all after the November infusion.  Doc doesn't want to hear it. 

Will you ask your doc about trying any of the other biologics such as simponi or humira  or cimzia before trying the surgery?

me too, me too! Pretty much same exact pattern, day to day is ok- I go, maybe 4-5x in the AM's, urgent, soft but formed stools. Seems to be "enough"... but once a week or so, I'm in the bathroom on & off for hours, seriously. Painful, passing lots of stool, I have no idea where it comes from! Fiber will help, I swear. I know it sounds counterproductive- try Metamucil wafers daily, soluble fiber like applesauce or apples, oatmeal..... it seems to really regulate things, & the action of the fiber keeps a good amount passing daily, so that it's not some weird "back-up". It still happens to me, but not as much & it's not as wrecking... I HATED this particular UC symptom, it takes a lot out of a person, leaves me tired, sore & a little dehydrated all day.

imagardener2


I would love to have an 8 footer right now and get really cleaned out. I am in such misery and just can't bear to try another enema or mag citrate -- just too sore.

I read somewhere that the colon can hold from 5 to 40 lbs. Wouldn't it be nice to lose 40 lbs in one day.

Post Edited (happyday) : 11/17/2013 9:58:30 PM (GMT-7)

OP,

Your post does not tell everything, I will try to answer to the best I understood.

- I don't know what you are taking along with Remicade, any supplements, meds etc. That info could be useful.
- Do you have constipation tendency?
- Do you know if you are taking any meds, that have constipation as a side effect.
- Are you supplementing Magnesium (I prefer, citrate form).

I went though all you mentioned here.
You pain around naval point is a referred pain from inflammation in intestine, no surprise there. Have you tried Tylenol to control the pain?
With BM, I honestly think, magnesium supplement would help, start slowly, like 200mg/day, then ramp it up to 400mg/day and if you can tolerate, i.e. if it does not lead to diarrhea, go to 600mg/day. It will NOT be quick to see the effect. It took me about 2 weeks or so to see any change with BM.

Do not supplement fiber at this moment. This is pretty bad time. You are already in flare and you want broom to scrub your colon? It will irritate the heck out of your colon and it will be even more painful. Slow down with fiber. Introduce it only once you are out of the flare and use psyllium seed powder. Husk or husk powder is harsh.

Consider taking charcoal capsules if you like. Charcoal is pretty powerful detox agent so take it away from any oral meds or food.. The idea is, whatever toxic substance there in your intestine will be pulled out. I personally do it, but it does not mean, it will work with you. Try it, Continue if you both can dance together.

Consider Slippery elm bark powder or turmeric as Imagardener2 suggested. Also include N-AcetylCysteine. There is scientific evidence that it helps UC (even there is a clinical trial in progress on how it works with mesalamine).
What are your Vit D levels? Should be between 50-65ng/ml. The range that 'experts' suggests is very low. Mine was 32 when I was going through this crap. Now its 68, haven't felt this good for at least 3 years now.

Be warned, if defecation is difficult, do NOT push. Take stool softner instead. Pushing can complicate the situation.

Which probiotics have you tried? I use Nexabiotic, Probiotic-3 and VSL#3, adjust the dosage as per the needs. In your case, I would take one capsule of each daily.

Let me know if something doesn't make sense or if you have any question.