Cuffitis or pouchitis or just need dilating??

Between the antiobiotics and the imodium, I think your bowel has slowed too much. Perhaps back off the imodium and in order to make things pass without straining, drink grape juice.

Sue

I agree, you should not have to be straining. Bear down a little, but not serious straining. You can prolapse your pouch that way.

I presume you were diagnosed with some serious pouchitis to be on two antibiotics for so long, along with proctofoam. How much longer are you supposed to be on the antibiotics? If you have cuffitis, hydrocortisone suppositories are probably better than the enemas (or mesalamine suppositories.

The fact that you seem to empty better when you are very full tends to make me think it is not a stricture, as this would not change with the fullness of your pouch. Sounds more like an inflamed cuff. If you can fit a finger up there, you are OK and do not have a stricture. Of course, it depends on how far up your anastomosis is. If you have a long rectal cuff, you may not be able to easily feel the anastomosis with your finger.

Jan

I'm on antibiotics for a month, so in another week im off of them. I have some Canasa suppositories at home that i used before proctofoam but i told my surgeon they were hard to hold in probably due to so much irritation/inflammation? thats when they gave me the foam,

Sue if i want to try and empty my pouch more before bed, typically about 10:30, when should i drink grape juice?

dgtracy,

That's a good question; I don't have an answer as I have never tried it. Hopefully someone else can chime in and give you a response.

Sue

It depends on what your transit time is. I would guess 4-6 hours at least, if you are saying your stools are thick. Could be as high as 12-24 hours. But, grape juice should move through faster, as that is the point of drinking it.

Jan

I suffer from chronic pouchitis, cuffitis and have a stricture at my anastomosis that acts up on occasion. I can NEVER take immodium as it always presents an issue with me when trying to empty my pouch. In addition, cipro slows things down and thickens the stool up for me, so at times this can present an issue with incomplete emptying. This could be part of the issue you are having. With cipro alone you probably do not need the immodium and the combination of both may be causing your issues.

I can always differentiate my inflamed cuff from pouchitis as when my cuff is inflamed I have burning when releasing pouch contents, as well as discomfort and itchiness at the very end of the rectal canal. I never experience these issues with pouchitis alone.

sometimes i feel the itchiness you referenced jeane but not always..no burning upon expelling though..i think i will lay off immodium and all to see how i do..

Jan i will do trial an error and see this transit time..i have an appt on July 17 so ill be able to see what she says then as well..just would like to find out whats going on.

Many of us have foods that we can recognize on the way out. Spinach is a classic. Any of these will help you estimate your transit time, since you know when you ate them.

so last night i did not take immodium before going to bed, i got up right around the same number of times, maybe 1 or 2 more at most..when i went to the bathroom things were easy coming out but there was definitely some kind of pain as it was coming out, I'm tempted to say its the spasmodic issue...
I have dicyclomine at home, (idk if i spelled that right) but i believe peppermint tea has some good benefits in that area as well? if its cold would i still get the same benefit?

I wanted to come back in here and update on something and see if you guys can provide insight on this...

I just finished my round of antibiotics, Cipro and flagyl..was on it for a month..i have been off for maybe 1.5 or 2 weeks now..3 days things started to hurt everytime i go to the bathroom, I will lean as far foward as i can to help, sometimes lean more left etc..but it really hurts, when things start flowing the pain will lessen a little bit, i started taking "Pearl" probiotics around the same time this started so im not sure if thats causing it? cuffitis ?..cant be a stricture requiring dialation because when i am on antibiotics its not as bad..am i right in assuming that?

I should also note that I believe I started probiotics because it became harder to go and painful..

probiotics oftentimes cause problems - excess gas, slower motility, for some people. Why don't you eliminate them and see what happens?

would i have started experiencing this almost immediately? as in the next day after taking them? i believe that i started the probiotics because this was already going on.

Yes, easily you could have. just start the experiment over. Discontinue them and see what happens.

Okay, I will try stop the probiotics. Unfortunately I already took it for today so I expect another day like this tomorrow

I can't tell if you were better while on antibiotics, but it's worth keeping in mind that the way antibiotic-dependent pouchitis is identified is if antibiotics clear up the pouchitis, but your symptoms return after you stop them. I'm now on Cipro all the time, which isn't ideal, but I feel great, which is.

while i was on Cipro and flagyl things were better than they are now but there were times when it was hard to go and painful.

I am jumping in on this thread as I am wondering if anyone knows of anything else to help a chronic stricture? I know mine is bad as I have tried the finger test with gloves and can barely get the tip of my index finger in and GI has indicated the same on last scope. I also have an ulcer at the anastomosis that probably will never heal with all my issues.

I struggle with many of the same issues on this original thread along with chronic ulcers in the ATZ (probably from all the constant straining and possibly lack of blood flow with a closed off anastomosis). Does pure grape juice help as I will try this also?

Finally, my pouch seems to be just fine at this time and has been for awhile (no cramping, pain, urgency, increased frequency, incontinence etc). I have been off cipro for quite some time, but never without dealing with anal issues and discomfort. My ATZ cannot heal as I always have to make numerous trips to the bathroom within a short period of time to completely empty my pouch and often with struggle, pain and some bleeding on and off. The cipro really eases the rectal pain and discomfort considerably, but again bulks the stool and complicates emptying. I like to exercise and do weight bearing exercises and when on Cipro I cannot do that for fear of tendon issues and I also suffer from severe muscle pain when on it.

I feel as though this is a viscous cycle with no answer to solve the issues other than remove the cuff or ostomy. I cannot tolerate any more suppositories (almost two years constant) as they really do nothing but further aggravate my ATZ and cuff.

I am sorry for the rant on this thread. I am thinking of seeing a counselor who can assist me in making the decision to move forward with more surgery to help my situation as well as starting anti-depressants as I have been in a very dark place for way too long and I am becoming a very angry, desperate, unhappy, bitter person to be around due to chronic pain. Aside from biologics, I feel I have tried every medical option available for my angry cuff and ATZ other than cortisone injections into the cuff and my surgeon has indicated this is not a good long term solution.

Any suggestions or insight would be really appreciated.
I am praying for the courage to go for more surgery to either get the ostomy or drop the pouch down. I am feeling like such a coward not knowing the outcome and worried with my luck based on the past two surgeries. I am worried I will fall in the jpouch failure category even after more corrective surgery, but really I am already there now aren't I?

Whats does ATZ stand for?

I'm so confused...I was on the two common antibiotics for what my surgeon thought was pouchitis..symptoms at the time were:
Painful when expelling stool
Feels inflamed at my rectum or opening
UNCONTROLLABLE PUSHING (ouch...)

I was on those AB for a whole month, during that month sometimes it hurt to go to the bathroom, sometimes not, well i stopped them July 4th..July 12 things started to become more painful, the uncontrollable pushing while on the toilet came back and was absolutely horrible, i got through the weekend but last night i couldnt stand it anymore, the uncontrollable push was just too much, it came to the point where i was literally scared to go back to the bathroom, so i took one cipro and one flagyl..took 1 1/2 tramadol (50mg) and then smoked a good bit (MJ) a couple of hours went by and thats when i noticed i didnt feel much, no pain or pressure etc...i hadnt been to the bathroom since taking meds and smoking..first time going in after all that was a few hours later and the sudden change was astounding, hardly anything came out but still there was no pain, maybe a little bit if any..No bleeding through any of this btw...

Does this sound like Pouchitis or cuffitis? I am leaning towards cuffitis and forming my own treatment in my head...(tramadol, smoke, canasa) I tried the canasa before but only for a couple of days, was way to hard to retain with the inflammation, then was put on proctofoam and had that for two weeks,..did not notice a difference.

It sometimes helps to keep separate issues separate, so here's some food for thought:

1) You really do have dietary control over your stool consistency, using water, fruit juices, psyllium, veggies, lomotil, immodium, whatever. If a med is making your stool too thick, I suggest adjusting other things to get it to the right consistency. Many of us get the best results with a texture akin to thick pudding. Don't blame your meds: this one really is almost always controllable with experimentation, patience, and practice. If you're making bricks you are likely to get in trouble, and watery diarrhea is generally uncomfortable.

2) If you are getting unacceptable side effects from a med I encourage you to discuss trying a different one. I don't think there's any reason to shy away from weight training while on Cipro (I don't). The tendon issues are an unusual complication, and I'd advise against living in fear of them. The muscle issues, though, sound like an "unacceptable side effect" to me, and a different med might be a huge improvement. IMO most of us can find an antibiotic with few or no side effects, especially if supplemented with a probiotic.

3) If you've got a stricture you need to get it opened up and keep it open. This need not be a nightmare, and relatively gentle solutions with sedation as necessary are available. Avoiding it won't make your life better. If the exit is closed, nothing good will come of it.

4) If you've got active disease (e.g. in the "Anal Transition Zone"), don't give up the search for effective treatment. There are lots of meds available, and you'll be better able to assess their effectiveness if you're managing stool consistency, hydration, and strictures.

5) Stay hydrated. Drink more water than you think you need. If you're not peeing light colored urine, I'd suggest drinking more water until you do.

6) If you're miserable enough that you're thinking about antidepressants, it is nearly certain that they are worth trying. Most of us wait too long before staring these. They can affect your fluid balance, so pay attention to changes in stool consistency and peeing.

Good luck!

Jeane - have you considered a temporary ileo to see if it will give things enough of a rest to start healing? Maybe they the surgeon could do some hefty dilation while you're under. It seems you've suffered for way too long.

kathy

ATZ refers to the anal transitional zone. It is the very small area of anal canal below the anastomoses connection ( prob 2 centimeters) where much of my inflammation is hence giving me troublesome symptoms as mentioned in earlier post.

Detracey, you seem to be struggling with many of the issues I am. You may have cuffitis as I do and it is a struggle to find the right combination of meds etc as Scott has mentioned. Patience is really needed during this time and my GI has indicated some level of inflammation will always be present in my cuff, hence some level of discomfort may always be my norm.

Kathy, Dr. Milsom suggested a temp ostomy but I was not convinced that would solve my issues as this has been pretty constant and I would bet after hooking me up again my symptoms would just return. He also suggested pouch advancement which scared me. I think the crux if my issues is my narrowed anastomoses however I am not sure if it is just a surgical complication or if the chronic inflammation is to blame for the narrowing.

I have had several dilationse under anesthesia. The stricture akways presents itself sgain.
Also, I am baffled how cipro always helps with my anal issues more than Canasa, anucort or cortifoam does. Ill never get it as I never took it with UC or had anal issues with UC.

Thank you for the response to my post. I will try the suggestions and hopefully dg you can benefit from these also. As a side not I have read mj helps with bleeding and inflammation in GI tract but I gave that up in college days.

Jeane i feel like we have the same thing going on...you have just been suffering longer..i have an appt this friday to confirm whatever this is.

Jeane,

Anal strictures that continue to reform after repeated dilations are often of the fibrotic type, since non-fibrotic strictures will usually eventually respond to repeated dilations.

In the case of persistent fibrotic stricture, the solution is stricturoplasty and pouch advancement. Basically, that means surgical removal of the stricture. At some point you need to accept that conservative treatment is not working. Only you can determine what your breaking point is.

http://www.ncbi.nlm.nih.gov/pubmed/12544517

Jan

I have to have sever strictures dilated on a regular basis. It isn't a silver bullet, but it does help with emptying the pouch more fully and lessening cramping and irritation due to bacteria sitting in the lower pouch for long periods of time and causing irritation.

I can't tolerate the pain involved, so I have to have it done under general anesthesia every few months.

Thanks Jan for the much needed reality check. I reached the breaking point and crossed over it. I am going to meet with a counselor in the next week and then surgeon again to help me get my feet moving on a mode of action as my spiritual, emotional, physical and personal life has been deteriorating due to my chronic pain and issues. It is unfair to continue to subject my loved ones to my pain and suffering when there is something that can be done to help me. All this time I kept thinking and hoping it was the inflammation at the anastomoses causing all my issues and in sone way, or with some miracle medication, my problems would resolve.

Jeane, I agree that you have given it your best shot for conservative treatment to be effective. I hope you get a plan set in place when you meet with the surgeon. Seeing a counselor is good too, because it is not over yet. Be sure to ask the surgeon if there is a plan for a diverting stoma with this surgery. I have heard of it being done both with and without a diverting ileostomy, but it is a painful recovery without it. I think your butt could use a rest at this point.

Best wishes,

Jan

Jan
Thank you for the article. I have never come across this one during my searches. I am confused though as I have never been diagnosed with a fistula or abscess and would they know if you had a retracted pouch via pouchescopy and what the symptoms may be? Also, is it possible to have a fistula or abscess that is not identifiable until they advance the pouch assuming they csn. Finally do you know if they would be able to differentiate a fibrous stricture from a non fibrous one during an exam under anesthesia. I have had several pouchoscopies and cat scans and an MRI with no findings of abscess or fistula to date. All I can think of is it was difficult to reach when creating my pouch and something to do with my healing or stapling has created an issue where my connection just stays at the size of a straw consistently. I also am suspicious of that damn omentum that was wrapped around my pouch prior to stapling that may be strangulating my opening due to the extra layer of skin stapled. I should have been skeptical of my surgeon's mad scientist out of box thinking for this to avoid fistulas through the vaginal wall. Need to move forward from here...no sense looking back.

Jan
Just saw your last post. Dr.
Renzi will not do advancement without diverting ostomy for reasons you just mentioned. (High level of pain). Current surgeon felt very comfortable could do it all transanally with no diverting stoma and response was we would worry about that later. I don't think I need to say much more regarding which surgeon I will go with for the advancement surgery. My GI trained at Cleveland under Dr Shen and has told me repeatedly Remzi has the most experience with problem pouches and redos. I have to trust him as I did not trust my original Gi recommendation for jpouch surgeon and in retrospect maybe I should have. I posdibly may not be sitting where I am today.

If you look at the percentages quoted in the article, only a small percentage were associated with the various intraoperative and post operative complications (all together they don't add up to half), so do not assume you have any of them, just because you have this problematic stricture. All your exams and imaging should have shown these problems. And yes, your docs should be able to tell if this was fibrotic in nature during the dilations under anesthesia. It takes a lot more force to dilate a fibrotic stricture. But still, according to the article, nearly half will respond to dilations even if they are fibrotic.

I would not think that the omental wrap would be the source of your issues. But, even if it was, you can't obsess about it now. I suppose you could ask Dr. Remzi about it and if the plan was to remove it. Nothing works great 100% of the time.

Jan

jeane I pm'ed you yesterday. very glad to hear you are going to see a counselor. I think it may help you in getting over this roadblock you are at and making some decisions to get your life back where you want it to be.
best wishes.

So sorry for imposing on the thread dgtracey. I have had such an emotional few days and I thank everyone on this post who has given wonderful advice. Liz I will check my pm. Thank you all again. I am so not accustomed to this feeling of helplessness and I totally empathize with others on this post as to the trials they are currently experiencing or have experuenced. I wish I could bring some great advice to others who are struggling and hope to one day be able to.