Hi everyone, I'm new here. Just to give a little background about myself I'm 29 and was pouched at age 12. Over the last 17 years things gradually healed very well and with a very low fiber diet I got down to 3-5 movements a day.

Around August of last year I started experiencing some new symptoms. I started having "incomplete bowel movements", feeling almost constipated when I tried to move my bowels. I'd produce some semi-formed stools but have no feeling of emptiness, until about an hour or so later when my stomach was finally ready to finish what it started. This is COMPLETELY foreign to me as I had always struggled with diarhea when my stomach gave me trouble, never anything like this. Also, I was having stomach cramping/discomfort all throughout the day and when I would try to work out it would get so bad that I would have to stop within the first 5 minutes.

I called my GI and after a 5 month wait I got scoped which revealed pouchitis, though he said it was not severe. I took cipro for a couple weeks and things improved, but not nearly enough. I was then switched to augmentin because cipro was making me very fatigued. A couple weeks later, with all the above mentioned symptoms still present, I was scoped again and was told that the pouchitis is gone and there was only slight inflamation in my pouch, which he said was not enough to cause concern. I stopped all anti-biotics thinking maybe that was causing this, no improvement or decline. The doc then put me on xiafaxan in case there was a tiny bit of pouchitis left, again no improvement or decline. I had an upper and lower GI done to make sure nothing else was going on, both tests said everything looked good. He then started me on a new anti-biotic treatment, taking cipro and tindamax at the same time. With no improvement after 2 weeks I switched back to xiafaxan to get rid of those cipro side effects that were bugging me.

So, as far as we can tell I no longer have pouchitis, but the cramping and incomplete bowel movements remain. Has anyone experienced anything like this or have any ideas what could be causing this? Diet or exercise maybe? I do keep a very narrow diet because I have a wheat allergy and like I said I've alwas avoided fiber, and I haven't been able to exercise because of the cramping. Any help at all would be appreciated cause I'm out of ideas at this point. Thanks in advance.

...and sorry this post was so wordy

This may be a silly question, but did your GI do a digital exam before the scope? If not, could you have an anal stricture?

Jan

Not silly at all, thanks for the reply. Digital exam? Not that I recall, just an upper and lower endoscopy. After the second scoping that I mentioned he told me that narrowing of the bowel was a possibility but those barium x-ray tests ruled that out. He never mentioned anal stricture and I never even heard that term before now. Could an anal stricture be undected by a lower GI?

I actually have the same kind of problems....I got my pouch when I was 13 and I am 24 now. My abdomen will suddenly bloat and my skin on my stomach is stretched as far as it will go....I get so uncomfortable that nothing works...even antispasmatic meds..And I cant go to the bathroom as much even though I want to sit on the toilet....I recently had a scope and was found to have severe pouchitis with acute pouchitis on top...and I reallly think I have a stricture that traps food sometimes...

Thanks for the reply LiverRN, sounds like we're in the same boat. I was prescibed anti-spasmatic meds too, which aren't making any difference. My symptoms have improved somewhat (but not nearly enough) since my anti-biotic treatments, but prior to that my symptoms were identical to that which you described.

A few questions:
Have you started treatment for pouchitis? If so, what results have you had? And have you ever had these kinds of symptoms before?

I've just been doing some research on pouchitis and am learning that people with UC many times don't have enough good bacteria in their intestines. Studies have been done that show probotics (VSL #3)are very helpful in most cases of pouchitis.The best time to start is either before you have pouchitis or right after you go into remission with antibiotics.There is quite abit of info. on the web. Hope this helps.

All of a sudden I am having the same problem. I have had the pouch for a little over a year. In the last week or so I feel like I have to go to the bathroom all the time but can't go. I think mine might be anitibiotics. I have had a staff infection on my skin and have been on heavy antibiotics for almost 2 weeks. I have also been taking some Tylenol 3 for the throbbing pain. I quit taking the lomotil. anyone have any thoughts? I usually can not stay out of the bathroom and go around 8 times a day. should I contact my doc?

Kitty,

I am not aware of the research you say you have seen. Ulcerative colitis is an autoimmune disorder, meaning that there is a problem with the immune system's response to bacteria in your GI tract. That response may cause there to be different levels of bacteria than what is normal, but that response also leads to the inflammation that eventually causes deterioration of the the colon and its removal. If you know of some legitimate research that refutes this well established theory, please post a link to it.

It should be noted that the same defect in the immune system that causes UC also causes other systemic problems - in my case, rosacea.

Regarding your statement that probiotics works for pouchitis in "most cases", I am aware of it working in "some cases." If you are aware of legitimate independent research/studies as opposed to shilling by the manufacturers of VSL#3 or their agents, please post a link to such research.

I note your scepticism but the effectiveness of VSL#3 does seem to be well backed-up by independent research. At least as far as maintaining remission goes, one study demonstrated (over a period of about 3 months) around an 80% effectiveness rate in patients with chronic pouchitis.

There are so many studies, that there are too many to list, but there appears to be much interest in probiotics and their potential role in IBD. Here is one link that describes a review of literature, but if you to go to PubMed and search for "probiotics IBD" you will find many reviews and clinical studies. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

As of now, there has not been enough clinical studies to know which probiotics may be most beneficial, and it appears that it is more beneficial for UC than Crohns. This link is regarding lactobacillus gg (Culturelle) in prolonging the remission time in UC http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

As far as shilling by manufacturers goes, as long as their research is done by scientific method and published in medical journals, I see no reason to disregard it and it does spur further studies:
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...ubmed_RVAbstractPlus

So, I think that Kitty was just throwing her thoughts out there, based on her readings. The bottom line is that there needs to be more research on the topic. I, for one have turned from skeptic to convert, and understand there is a complex interaction between the microflora of our gut, and our genetic tendencies. But, I also think it would be too simplistic to think that probiotics will be a panacea. IBD is too complex and varied to be handled by a one type of treatment.

Jan