The story of the dreaded "ITIS"

[bbcopper]

Hey Everyone,

I am sorry I have not been around the boards much and I hope everyone had a great holiday.

I am writing about my trials and tribulations with the j-pouch over the last 10 months. I hope that my information may be helpful to those of you who have a jpouch, might get a jpouch or any input from current pouchers out there would be greatly appreciated.

Background: I had my reversal Jan 25 2007.

Current issue: I finally decided to face reality and admit that things with my pouch were not quite right. I came to the conclusion that I either had cuffitis or pouchitis...although I was leaning towards the cuffitis. I did not speak to my doctor and I on my own just started taking flagyl (that I had left over from before my surgeries). Almost immediately I started to feel better and within the first 3 days things had improved GREATLY! At that point I called my doctors nurse to talk about what was happening and to try to formulate a game plan.

What was going on: I would say that probably within the first month after my reversal I could tell that I might be going to the bathroom more than I should. As I went back to work I was taking 10-12 imodium, 8 to 10 lomotil a day and for 3 months I added opium 3 times a day. Regardless of how much I took or what I did with my diet, how much I ate or if I did not eat all I was going about 10 times a day. I had lots of cramping, gas, more urgency than I thought I should have and I often went multiple times in short periods of time.

In the back of my head I kept thinking "everybody said to be patient, its normal to go a lot early on, it takes a year or more, if you make it through the first year without the dreaded "ITIS" you should be ok, etc.. etc.. etc..." But, as time went on things didn't slow down, I was going more like 10-12 or more times a day and the urgency and cramps really sucked. I also had major issues with sleeping. I was usually up every couple of hours and could never get good sleep.

Symptoms: there are a few reasons why I believe I have cuffitis and not pouchitis. Since day one I have used wet wipes and creams after each time I go to the bathroom. But, I seemed to always get pretty severe butt-burn. Sometimes it would get so bad that it was very painful to go to the bathroom, wipe, walk, sit down, lay down, etc.. It seemed like my rectal/anal area was on fire and often there would be minimal bleeding when I wiped (small amount of blood on wipe) Then there would be other times that it seemed to heal up and I would be ok. I also seemed to have greater urgency than I thought I should (although I never had a problem holding it) and the cramps and gas were continuous throughout the day.

Treatment: I wouldnt recommend doing what I did and just start taking meds without calling my doctor, but I was a bit desperate and I had known enough that flagy is usually the first thing most doctors give you to treat pouchitis. Luckily it worked, worked well and worked fast. I seriously felt like a new person. All of the sudden the amount of cramps I had was reduced by about 95%, I didn't have the urgency like I did before, within the first few days I was probably going 7-9 times a day compared to 12+ before I started taking it. One of the biggest things that happened was that the first night I took the flagyl I slept for 5 straight hours of deep sleep, 5 hours the second day and 7 the third.

The butt-burn: the week before I started the flagyl I was having what I thought was severe butt-burn. My tush was on fire and it hurt to do anything. I was also noticing blood when I wiped (with severe pain). After I started the flagyl the butt-burn just basicaly went away! So, what I found out was that the majority of the burning and pain that I was feeling was due to the inflammation of the rectal tissue that was left to create the rectal cuff to attach to the pouch...hence the cuffitis! Just to clarify, butt-burn is very real and just because your butt burns it doesnt necessarily mean that you have pouchitis or cuffitis, but in my case many of my symptoms were directly related to just that.

The doctor: I have not spoken to my doctor yet as she is out of town still, but I have been in contact with her nurse. When I first called to tell her that I was taking flagyl and about the pouch or cuffitis, the nurse had told me that my surgeon was going to tell me to take Cypro. But since the flagyl seemed to be working for me there was no reason to stop and try another drug. But, it goes to show that different doctors prescribe different drugs. I am sure that if I had started with Cypro and it didnt work I would have been told to try another drug.

Conclusion: I think most of us have learned time and time again that if you sense something isnt right, even if others tell you otherwise, there is more than likely a good chance that something is going on in your body. Don't hesitate to take action on things that do not seem right and are affecting your quality of life. If I would have started the flagyl 8 months ago, I would have nipped the problem in the bud.

My personal opinion is that I need to take a more progressive, aggressive and offensive approach to my situation. I am emailing my surgeon a detaled account of everything related to my reversal and jpouch from day 1 till now. This way she has everything she needs to know right in front of her and can review the material when necessary. It is so hard to get 10 months of details out in a phone conversation or even a face to face appointment. I am going to use this "timeline" of events to build a game plan with my doctor to combat the "ITIS" before my body tells me that its time to fight it.

I so wanted to get through the first year without any problems, but what I realize now is that just because you have problems within the first year it doesn't mean that it can't be treated, treated quickly and that you can't move on without complication. In fact, ignoring the problem can only cause more damage that might prevent treatment later on.

Those with pouches have to realize that the "rectal cuff" that is left behind is either diseased tissue or tissue in remission, but prone to UC. That 1-3 inches of tissue when diseased can make your whole pouch make you feel like you have UC all over again. But, it can be treated easily and quickly if necessary. I know now that I will probably have more bouts with the "ITIS", but when the time comes I will not hesitate to take action.

I hope that this info was helpful!

Take care
_________________
Brian Berkowitz
Total Colectomy w/Ileo May '06
J-Pouch Jan '07

[DianaT]

Hi. I think we last spoke before my reversal surgery in June 2007.
I am 5-6 weeks post-op from the final reversal surgery - December 5th 2007. I had a total colectomy in March 2006 with an ileostomy and decided to have the reversal surgery (2 surgeries). I am pretty much going through the same things you are describing. I think it is pretty much normal for this early on after surgery, but I will look into what you are describing. I have a lot of gas and sensations of frequent bowel movements. I do have good control and try not to go everytime I feel the urge, but this last week I have had a few accidents where the gas was not gas and had to go quickly to the restroom. I also am not sleeping much during the evening. I am up every 2 hours or so to have small bowel movements and sometimes runny diahrea. I also have hemroids which are very painfull and swollen. I try to have sitz baths 2 times per day and also use a cortisone hemoroid cream. But the cream also causes irritation if used to frequently. I just use vaseline after every bathroom trip. I also have that burning feeling all the time and have pain to sit to long. I have not yet contacted my surgeon with these complaints, but after reading your post, maybe I should see what he thinks. I am not taking anything right now as far as medication goes. However, I did try the immodium last night to see if I could get some sleep - it is really catching up to me and I have 2 small school aged children to look after as well. The immodium worked I think because last night I did not wake up to go to the bathroom. I went to bed at 11:30pm and woke up at 6am to go to the bathroom. It felt great to get a good night's sleep.
I am a bit worried, but I hope I don't have anything seriously wrong. I am glad I had the surgery, but lately, with the way I feel so tired and living in the bathroom and watching what I eat, I feel a bit discouraged. I am not eating any fresh fruits or vegetables yet, I was told to wait until about 6 - 8 weeks after surgery to introduce these back into my diet. I try not to eat anything after 7pm but it doesn't really seem to make a big difference. In a 24 hour period, I could say I have anywhere from 10-12 small bowel movements with lots of gas and stomach pains. Thanks for sharing your symptoms.... if it wasn't for this website, I don't know what I would do. It is very helpful to talk to others who are experiencing the same things and offering support of one another. Take care and if you have any other advice, please e-mail me. Thanks again and good luck!

[bbcopper]

Hey Diana,

I am sorry to hear you are having these issues I think most people would say that 5-6 weeks out you need to be patient and give things time, BUT like I said in my previous post I am not so sure. I have heard from many folks who right off the bat are maintaining 4-6 BM's a day with little cramping, burning, etc...

Its been almost two months since I made my orginal post and a lot has happened since. On Dec. 10th I went to my surgeon and she did a scope on my pouch. Everything from the outside-in looked great she said. My pouch looked great and the biopsy's came back normal. She did see some irritation around the rectal mucousa (sp) that was left to connect the pouch too. My surgeon now agrees with me that my issues are most likely being caused by the rectal cuff being irritated (she does want me to see a GI that specializes in UC/jpouchs for a second opinion)

Right now I am on Cypro. The flagyl that I orginally took seemed to work better, but my surgeon said long term use can cause neuro-centric damage. Cypro is exceptable for long term use. My surgeon also started me on a medication called amitriptyline that is being use to treat irritable pouch. After about the 3rd day on it, I finally looked it up on the computer and found out that its primary use is as an anti-depressent. The first week I was on it (just one pill before bed), it would knock me out and I would be out for a good 6-7 hours and then if I didnt force myself out of bed I would stay in bed until 2-3 in the afternoon (I will admit, I enjoyed the sleep). Apparently, the medication can take up to 4-6 weeks before it starts taking affect and after that first week the sleepiness did fade away. I asked my surgeon "why an anti-depressent", she said "they are not sure why it works, but they have seen success with it calming down the pouch". I will keep ya updated if it works well.

Bottom line....the last couple of months I have had some ups and downs and we (me and my surgeon) are still trying to fine tune things, but I have been 1000 times better than I was the entire 10 months prior to all this happening (I have under 10 BM's a day, control is fine, cramping and urgency is minimal and I get sleep).

For you Diana, even though its only been 5-6 weeks since your reversal, I dont think it would hurt to talk to your doctor and to try a round of antibiotics and see what happens. If one doesnt work, try the other. If you see improvement (if it works you will see imporovement in the first 24-48hrs) then you know that you have tissue that is irritated and now you can do something to treat it and live a more normal day to day life. If they dont work, then you havn't lost anything by trying and you focus on other areas. For the butt burn have you tried calmospetine ointment? It does work well.

If there is anything you would like to ask or talk about feel free to PM me or send me an email.

Good luck and take care!

[susan f]

Brian,

A word of caution. I was on Cipro for long term treatment of chronic pouchitis. As the years rolled on, it became less and less effective, and we had to add Flagyl back into the mix. Long term use of Flagyl is not recommended, it may have some significant side effects (it has caused cancer in laboratory rats for example).

I think I was on Cipro for 10 years (using Flagyl for the flare ups), and Cipro and Flagyl for 5 years. That's a long time to be on antibiotics. So if this other drug works and has minimal side effects its certainly worth using, and saving the antibiotics for the flare ups.

If this sounds depressingly like UC, with remission and flare, you are correct, it was. My story ends with my getting the j-pouch excised and going to a permanent ileostomy. I don't seem to have any effects from all the antibiotic use, and going back to the ileostomy hasn't impacted my life in any negative way, quite the opposite in fact.

Good luck to you, and I hope the cuffitis turns out to be a rare, treatable occurrence for you.