Dilation Stricture Blood Pouchitis

where and why did you have a pouch redo? this might be something I have to consider at some point, so pardon while I collect info.

incomplete evacuations I think are a hallmark of strictures. but maybe that's just my experience. I have a midpouch and above pouch entrance stricture so I almost get the sense that I evacuate everything below the stricture and then as I walk away the above stricture stool refills the void and bam I get to go again. good thing drought restrictions here in Cali didn't extend to toilet flushing.

I am, however, not convinced that an anal stricture would do the same, so maybe you have one higher up and its hasn't been spotted? ie above the pouch entrance?

and jeane is absolutely correct it is the unremitted inflammation that causes strictures so yeah stay atop the inflammation via testing etc. I will say that I was reluctant to start biologics as I was happily whistling along for 19 years with only occasional need for medication but it was the best thing to help tamp down inflammation and it has largely help alleviate the inflammation making the strictures less severe. I get dilated under pouchoscopy about every 4 months.

the blood on the wipe is probably from a fissure that is developing from straining and frequency. I believe that is what sparks fissures.

Is it *poosible* that you have pouchitis in addition to the stricture? Once the stricture opening is adequate continuing symptoms make it important to consider the possibility of a second problem. Pouchitis isn't the only possibility, it's just easy to treat, and easy to tell if the treatment is working.

JEANE, thanks for the advice. I haven't been staying on top of the stricture this past week. So, I'll start self-dilating again to maintain the opening. Yes, getting a good night's rest is next to impossible. Huge deal too, IMO.

Just started taking fish oil and a chewable probiotic. Not confident those will be of any help, but I'll provide an update on their effects in a week or 2.

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DEWEYJ, with my 1st pouch, I had chronic pouchitis from the start. Received some relief while taking antibiotics, but the effects wore off as soon as I stopped taking them and sometimes near the end of the rotation. Chron's continued to come back negative. After a year and a half of my first pouch causing all kinds of problems, I changed to a more specialized doctor. Test after test didn't show anything, until one showed some trouble above my pouch. Maybe afferent limb or some kind of prolapse; they weren't sure. We decided to do an exploratory surgery with loop ileostomy. It showed among other things, that my pouch was twisted and all messed up. For whatever reason, doctor's couldn't see the mechanical issues during scopes. I'd be happy to answer more questions about the process.

I am also reluctant to go back to a biologic with all of the unknowns. Remicade kept my UC at bay for 4-5 years. At the ripe old age of 25, I started getting bad arthritis. I quit using Remicade and the arthritis immediately went away followed by the onset of UC after a few months.

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SCOTT F, nice pun. Definitely *poosible*! I am convinced that I have some level of pouchitis along with the stricture, in spite of the mild inflammation from my most recent scope. It sounds like the two make for a vicious cycle. Part of me is hoping for another round of antibiotics, because I think the original 30 days of Tindamax weren't able to do their job with the stricture not being maintained. And like you said, it's easy to know if antibiotics are working.

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I also think it's poosible that my symptoms are due to adhesions at the stoma site. Especially since the pouch was fine before scar tissue started forming there. As soon as the open-would closed (about 4-5 weeks out), I was straining, having thinner stools, and making repeated trips to the bathroom. As time went on, things got worse and worse. I was barely emptying anything and couldn't keep track of my BMs.

Is softening adhesions a thing? Is there a way to do that...like massage the scar/knot in my stomach?

interesting. where did you have surgery on second go round?

a Small Bowel Obstruction in 2004 led them to refilled me and at the time, my surgeon said my jpouch has slipped to a bad position and thought that was the cause of my SBO. I don't know I was too stunned post surgically to really flesh it out with him and he has since retired. I do know that when I had a cholesystectomy (gallbladder) that that surgeon spent 3x as long ie 1.5 hours lapro taking down adhesions to complete surgery, normal chole are about 30 mins.

myofascial massage, I hear it can be quite painful but the idea is to loosen up the adhesions. I don't know how you do a search on here, but its been briefly discussed or pose the question again. my friend jilly has had it done and she believes it helped. it almost sounds like the stoma site has adhesions. It would be a natural place for it.

Thanks for the tip. Myofascial massage...definitely worth researching.

Wow! SBO's are zero fun and that's a lot of adhesions.

I had my pouch redo done at the Cleveland Clinic. I wasn't sure what to expect. I read great things about the CC pouch clinic and surgeons. It's probably not worth traveling there for everyone, but it was for me. They put me through more tests in 2 days than my local doctors had in the past year. Now, I'm seeing another local doctor that has ties to the CC. Hopefully, they can work together and get this business figured out.

isnt blood a hallmark of cuffitis? wondering if thats been ruled out yet? My story is pretty much just like yours KP except that i dont have a ton of urgency and no blood. I had a scope 1 week ago and they said i did indeed have a pretty bad stricture, they dilated yet im still having exact same symptoms as before. what worries me is they did tell me there is mild inflammation in the pouch, but no pouchitis that she could see, no crohns, nothing to biopsy. 

What can be taken to clear up general inflammation we have in the pouch is my question, Biologics? i do have a standing order of Cimzia for my arthritis i have yet to start because tumeric capsuls were keeping the pain at bay but now its back so may just go for it. 

psoriatic arthritis or rheumatoid arthritis?

heres an interesting thought, or maybe not. but Inflammatory Bowel Disease, manifests itself (it being arguably an autoimmune response) via inflammation, so whilst we technically have vanquished ulcerative colitis by definition if we've removed the colon, whats to say the body doesn't just decide to exhibit that automimmune ie inflammatory response elsewhere.

I think unfortunately the answer to your question is yes Cimzia, but as it might address the arthritis perhaps you get a double benefit.

ah CC, I was afraid of that. I live in SF so was hoping it was just becoming more commonplace. I may though one day have to make that trek. thanks.

dgtracy,

Yeah, blood is a symptom of cuffitis. I think it can also be a symptom of pouchitis, strictures, fissures, and a lot of other diagnoses. I wouldn't be surprised if cuffitis is an issue I'm having. I had it on and off with my 1st pouch. In a weird way I'm happy you're dealing with the same issues. I'm sorry, but it makes me feel less crazy. Hopefully, we'll find some relief soon.

Things to control inflammation: antibiotics, cortico-steroids, possibly fish oil, eating less sugar/overall a healthy diet, n-saids, I've heard turmeric is good too. From what I remember, biologics block receptors of certain proteins that cause inflammation. So, biologics too.

Eating 100% healthy while sick is the hardest thing to do, IMO. I'd do some crazy stuff to have a personal chef. Even crazier stuff to just be healthy.

Thanks for the response!

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deweyj, I've thought that same thing. I think you're definitely on to something.

edit: response to deweyj

for what its worth I would strongly discourage using NSAIDs. I believe that while others on here have used them occasionally, I would share an experience that a friend who has a 31 year old jpouch has. After her colon removal she was told and felt that she had no longer to worry about NSAID use as the UC was gone. She now has 5 strictures up along her upper GI tract that have to undergo a complex dilaton from a CC trained GI, otherwise she obstructs. she has seen Bo Shen for the initial dilations and consult. Shen feels that it is likely the NSAID use led to the strictures. An unusual finding for sure, but a real one that if one skips regular NSAID use might be worthwhile.

thanks KP we shall see. for the first time ever a side question to a Stanford surgeon adjacent to a CCFA symposium led me to believe she wasn't as afraid/against revising my jpouch. she had a thoughtful response to a possible stricture fix. it did involve a temp ileo so until I am pushed to the edge I suspect I will continue to muddle along. but at least there is hope. true and valid hope is important. lol.

Spoke with the doctor on Friday. Biopies showed pouchitis. Taking antibiotics right now and it's definitely making me feel better and have less diarrhea.

I am currently self-dilating with my index finger for about 5 minutes a day. Trying to stay on top of it like I promised. It feels like I'm wearing a tight ring on my finger, but it is becoming less restrictive. With that said, there are still times every day when wiping causes more stool to evacuate, which leads me to believe the stricture is still going strong. Should I push for another actual dilation under anesthesia? Should I push for hegar dilators? What's my best move to get this under control?

I'm sorry! I hate that you've been battling for 5 years. I remember the physical and emotional toll that 1.5 years of a malfunctioning pouch had on me. I cannot imagine 5 years. You are strong! 

I hope this dilation helps! How often are you getting dilated? Is it possible to increase the frequency of your dilations? I'm not sure whether that's a good idea medically with your fissures and such, but it seems like it could help.

I agree with you, self-dilating is not the long term answer for me. 

I'm closing in on 5 months post-takedown. Currently, I'm taking Cipro and am overall doing better. Going about 8 times a day. Last weekend, I stopped taking it and my diarrhea doubled to around 15 a day. Went back on it and noticed an immediate change. I'm planning to stop taking it again this week or weekend. I have one more refill that I'm praying I don't need. If you're wondering, I was on Tindamax for 30 days after my first dilation at the Cleveland Clinic in early-February. It was helping some, but I was still very much struggling with a stricture. After going off that, things got really bad, started self-dilating daily. Had a second scope in late-March by a different surgeon in Dallas, no major dilation was performed. Biopsies showed pouchitis and I was put on 2 weeks of Cipro with 2 refills.

I've moved to self-dilating on a weekly basis because it seems like my stricture is staying open. There's an area that still feels like a ring on my finger, but it's not hard to pass. With that said, I am still having issues with loose stool coming out while wiping. Maybe once every 2-3 days that happens. And half the time I go, stool shoots to the front-left of the toilet bowl. I'm only seeing blood on the TP when certain BMs require lots of wiping.

At this point, I'm not sure what to do other than wait. I'm expecting bad results post-antibiotics due to the experiences I had with my first pouch and the times I've been off antibiotics with this pouch.

Side-note: Saw a picture of myself from this weekend and I look emaciated. I want to break things in frustration. I haven't acted on it yet, but it seems like it would make me feel better. Anybody else?

Is softening adhesions a thing? Is there a way to do that...like massage the scar/knot in my stomach?

 

I have posted on others qs before but i have seen an internal soft tissue physical therapist (basically does massage on my belly) and she changed like 15years of scar tissue for me. Totally softened up my belly. I was doing IVF for infertility, and I swear she made room for a baby to grow in a way that I did not think possible before. I also thought it was "normal" for me to have extremely painful areas on my abdomin (like if pressed), and she changed that too. Mostly she does massage but she was very expensive, so she taught me to do it myself with Castor oil Packs. Very easy to do at home. Castor oil soaked cloth, plastic (seran wrap or plastic bag over that, as its very messy, a thin towel over that and then a heater pad or hot water bottle for 30 mins, then massage. I still do it once a week. Scar tissue apparently shrinks like 1% a year , so after 15years, thats a lot of shrinkage for me. She really helped loosen up adhesions, and sooth belly. I think a lot of people might not think this works, but if you are interested you can do some more research, or just try it. massage in towards your bellybutton from the outer edges of your belly, and work your way around , like a clock (12, 3, 6, 9 and then any harder places). I mean, worth a try!