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After months of trying to deal with constant and debilitating anal pain, I am off the see the surgeon next week to discuss next treatment options. I was contemplating 6 mp and sulfasalazine and a short does of prednisone with my GI before throwing in the medical towel after being on Cipro for over a year, rectiv, licodaine, canasa, anucort and ambian.

My pelvic MRI showed no fistula, so I am baffled at what this severe pain could be other than possible fissures or severe cuffitis. My anal canal is pretty much shutting down at this point. It is virtually impossible to evacuate without incredible pain and the burning pain after lasts for hours. My sleep in interrupted constantly and I am not eating much these days,
and warm baths have been my friend, but how long can one continue this?

I am pretty much over this jpouch and I am looking for the best possible option to be free of chronic, debilitating pain that consumes me 24/7. For anyone in the same situation, I can report back as to what my surgeon is suggesting.
I am not even sure I will go for pouch advancement surgery if recommended as I so want to get on with my life and with my history, I just envision more complications after and more wasted time.

I feel I have lost a total of 6 years of my life starting with my LGD diagnosis prior to surgery and all the complications after surgery. That is a HELL of a long time to be miserable almost constantly. I no longer want to fill my day with taking medications, hanging over the toilet bowl in pain and trying every cream ointment etc imaginable for relief as well as being consumed with pain almost constantly and how to alleviate it. My life is passing me by, my family are growing, my husband deserves better, I deserve better and I need to grab hold of things before it is too late.

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T TroyMember
Jeane,

I feel your pain. I have been through much of the same as you and I decided two weeks ago to have my J Pouch removed. I am counting the days down to January 29th. Am I scared. Yes. Not so much with the surgery, but of the complications that could happen. I had a one step with my J Pouch surgery, so I have no experience with an ileostomy. I hope you find an outcome that is successful. Life is passing us by.
T
J JillMMember
I don't know if pouch removal will be the answer for either of you as my situation was different.

However, I can tell you that having my pouch removed was the single best decision of my life. I tried disconnecting first in 2001 but it didn't really help. In 2003 I had the pouch out. Since then I have had no GI issues.

I have had two babies (now almost 8 and 5). I live a drug free life where I eat what I want and am able to do everything I want and need to do.

I was 30 when I got the ileo back and almost 32 when the pouch came out. I have never regretted that decision, not even for a second.

My advice is that if you decide to do it, do everything you can to be mentally and physically ready. I did a mind body program, even wearing headphones through surgery. I had a massage every week the month before my surgery. I had a goal - to see Ramona Falls at Mt Hood in OR - that would prove to me I was healthy. I achieved that goal just 4 months post surgery (7 mile round trip hike).

Feel free to PM me if you have questions or want to chat...I'm now working running my own business as an independent Disney Travel agent with Small World Vacations, have two kids in school, both of whom do karate twice a week and one who does dance once a week, am co-chair of the PTA, and am working on getting my family ready for the holidays...it's a pretty busy, ordinary life and I love it and my ileo for giving it to me!
J
BillVBillVMember
Jeane and Troy, I can relate to the situation that both of you are facing with J pouch problems. Over the years, I had fairly well adapted to the problem of frequent bathroom use and irritation of my bottom. The matter came to a head a year ago when my GI found advanced dysplasia in the anal canal and said that the J pouch had to go. This conclusion was also made by a colorectal surgeon at Mayo Clinic. Before “throwing in the towel” on your J pouch, consider getting an opinion from a surgeon who specializes in problem pouches. Although I did not have a consultation at the Cleveland Clinic, it is my understanding that there are a couple of highly rated doctors at CC who deal with pouch problems. If I were in your situation, I would definitely get a second opinion.

I initially had a 3 step procedure that included a loop ileostomy for 4 months. With the problems I had with it, I could not wait to have the ileostomy taken down. I understand that end ileos are easier to manage and generally have fewer problems than temporary ileostomies. A permanent ileostomy was one of the options for my recent condition, but I personally did not feel that it would provide me with the quality of life I desire. I chose to have the BCIR procedure (a modification of the K pouch) and have no regrets for that decision. I am able to do anything I want, eat most foods and experience intimacy. The operation was not easy and the first couple of months post-op were challenging, but I made it OK.

I would encourage you to do research your options and have a list of questions for your surgeon. Please feel free to send me a PM if you have questions. Best of luck to both of you!

Bill
BillV
J jeaneMember
Thank you Bill. I will discuss this option with my surgeon. I am concerned about snal dysphasia and cancer myself. I doubt you can exist with an irritated, inflamed, bleeding bottom for long before this sets in. I am going on over two years.

I have been to CC to see Dr. Remzi. I am not sure if he does the BCIR operation or not. I will ask my GI as he came from there and consults with him and Bo Shen often.

Thank you very much.
J
T TroyMember
Thanks bill. I did not take my decision lightly. I believe (in my mind) that I have done everything possible medically. I have exhausted all potential remedies (drugs) and have seen Dr Shen at CC. This is sort of the end of my journey. Didn't want this outcome, but I didn't want UC either. Sometimes you have to come to grips with where you are in life. I hope that having an ileostomy will not be as disabling as having pain and excessive trips to restroom due to pouchitis.
T
BillVBillVMember
The BCIR procedure is very similar to the Koch pouch with the main difference being in the construction of the valve (using a small part of the small intestine). BCIR’s are done currently in the USA by two surgeons: Dr. Ernest Rehnke in St. Petersburg, FL and Dr. Schiller in Los Angeles, CA. K pouches are done by a number of surgeons, including those at the Cleveland Clinic. I had my BCIR done in Florida and found Dr. Rehnke to be a very skilled and personable surgeon. I received the best of care from the staff at Palms of Pasadena Hospital.

A large percentage of BCIR’s are done for people with failed J pouches or who have had problems with their ileostomies (bag leakage, skin rashes, quality of life issues, etc). The patient satisfaction rate is very high, but some folks have experienced problems. Even some people with permanent ileostomies need further surgery. You can Google search for the BCIR web site (Palms of Pasadena Hospital) and get additional information on the procedure as well as a phone number to call. They can mail you a packet that contains a DVD explaining the procedure and a list of about 300 people who have BCIR’s and have consented to talk to people about their experiences.
BillV
TE MarieTE MarieMember
I'm sorry to hear this Jeanne. I finally feel like I'm getting the upper hand on my j-pouch problems and had so hoped you were going to finally know what yours were after the MRI. My 3rd take down anniversary is 12/29 and I think yours is 4-5 months after that. You have given it a long time and fought hard. I've lost track of how many specialists you've seen and medications you've tried. Confused
TE Marie
BillVBillVMember
Marie, Dr. Rehnke is not currently training any surgeons to do BCIR's, but it is my understanding that this may change in the near future. Palms of Pasadena Hospital, where Dr. Rehnke practices, was recently purchased by Hospital Corporation of America, a company that has interest in medical training. I had no problem getting Medicare and United Health Care to pay for my BCIR. Prospective patients should verify coverage for this procedure with their health insurance company. If denied, an appeal with medical need substantiation may produce positive results.

Bill
BillV
AllyKatAllyKatMember
Jeanne, don't be afraid of pouch advancement surgery. It still is a lot less evasive than ouch removal. It might work out perfectly well. I don't regret doing this first before any kind of removal. I had mine done 13 years ago and I'm sure surgical techniques have greatly improved. I was like number 14 or so from my highly experienced surgeon. It was all very new back then. Even with all my issues I've had lots of great pain free, drug free times and I'm still learning. I have not been around in 4 years and a lot has changed in ways to manage our pouches. I wish u well in want ever u decide to do.
AllyKat
J JJAMember
Jeanne-have you tried a bidet? I had constant anal pain due to my incontinence, cuffitis, acids, irritation from using a cotton all in my anal canal to control the incontinence...whatever. Always at least a 4/10, sometimes worse-I just resigned myself to it. The bio bidet 3000 changed my life. I got it for $200 on ebay, and recently have seen it for $150, as the "head" on mine recently won't stay on, and is currently duct taped on (and yes, every time I see it I think, "If your bidet is held together with duct tape, you just might be a redneck" which makes me smile Smiler ) That thing has been worth it's weight in gold, and paid for itself many times over in fewer wipes, creams, etc. not to mention I have NO chronic anal pain any more (and I still use a cotton ball up there. The bidet allows me to really empty the pouch, and really keep the anal canal and surrounding tissue clean. It is hard to explain the dramatic improvement in my quality of life. No squirt bottle or portable bidet comes close to this thing, which hooks right onto your toilet. It requires no electricity. It does tap into my hot water supply off the sink (drilled a small hole in my vanity to reach it) but it takes so long for the hot water to reach that bathroom that for a typical bm room temp/pipe temp water if fine.

I'm sorry you are still struggling. I hope you find relief.
J

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