Update and advice- help!

I have consulted with 4 different surgeons over the years and everyone told me that it was my call if I wanted the pouch removed. So it surprises me with what all you have been thru, that your surgeon wont do surgery. Lets face it, some of us with a j pouch will never be healthy until it is removed. Time for a new surgeon in my opinion.

I don't understand this allykat . What does pouchitis have to do with not removing your pouch? Are you at a greater risk of perforation or sepsis if they try and remove it? How can your surgeon expect you to continue like this if ill with your pouch? I am very sorry you are going through this.

Is your present surgeon the one who did the original surgery/ j pouch construction? If so, then it is probably their pride keeping them from removal since in their eyes they see that as a failure, and they dont want to admit it. In my case I had to dump my original surgeon before I was ever able to get the help I needed. Just a thought.

Chronic antibiotic refractory pouchitis requires fairly aggressive treatment. Assuming that's what you have, Shen's article suggests some things you might not have tried yet, including culturing the fecal bacteria and combination antibiotic treatment. I hope you get some relief!
--Scott

Maybe a trip to the Cleaveland clinic to see Dr. Shen is in order. He's supposed to be the pouchitis guru. I used to see Dr. Marion in NYC who is a great GI but I honestly don't know how much he knows about j pouches and pouchitis. Hope you get it sorted out soon.

My surgeon in NYC told me the handful of j-pouch removals he has done have all been for chronic pouchitis. Whichever surgeon advised you sounds off the mark. They might have meant that they would want you to do a diversion first before actually removing the pouch, I believe that's standard.

In any case, I'll nth the above and say I would see Bo Shen before doing a pouch removal if you're still interested in medical options.

Hi AllyKat

I had pouchitis off and on for 15 years with my jpouch. Then for 3 years I had chronic, refractory to antibiotics pouchitis and it was misery. Pair that with anal spasms, fissures and incomplete emptying and I knew I could no longer go on like that.

I went to my surgeon, the same one who did my 2 step jpouch 18 years previously, and she was the one treating my for my pouchitis and other issues and we talked about going the route of perm ileo. I actually started crying and said to her "but won't you see this as a failure".

If you saw the look in her eyes, you would have been moved, she looked at me in a very nuturing manner and said "it's not about a failure or a success in surgery. The way you are living is not a success. This is about giving you quality of life."

It was at that point that I realised that it was time to go ahead and go perm ileo. In five months, I have healed up completely and have never ever in my life felt as good and healthy and happy as I do now.

If your surgeon will not remove the pouch then you must be your own voice and advocate and get a second or third opinion. This is your life and you have every right, no matter how scary, to take control.

I agree with all the posters who have posted the suggestion of seeing the guys at the Cleveland Clinic. It could be life changing for you.

I echo the above. It does not matter what the cause of your pouch failure is. If it is reversible, then reasonable attempts to improve function should be considered. If you are a candidate for pouch reconstruction, then that can be an option, if YOU are willing to attempt it.

But, bottom line, it is your life to live, not your surgeon's. Certainly, you cannot force your surgeon to do surgery he is not willing to do. But, that does not mean he gets to hold your body hostage. That is why we seek other opinions. If your surgeon does not see your predicament as intolerable, he is not the surgeon for you.

While you may feel abandoned by your GI, it is entirely possible that you have exhausted medical options. If you can manage to get to Cleveland Clinic, that would be my best recommendation. Perhaps a remote second opinion? But, if you are simply done with it, get other surgical opinions and give up on your current surgeon.

Jan

allycat so sorry my diet suggestions did not help but i was hoping your main cause was bacteria overgrowth which it best lends itself to..my next best thought is go to cleveland armed with all your data and what you have been trying..dr shen and the surgeons there will confer together as to what to suggest they work together there....i seriously think thats your best place..i think its kind of the place we all seem to end up with the most subborn of cases..hopefully they can lead you to your best options ..

AllyKat,

I also wanted to very quickly mention that one thing I had to get over in my own mind, was that I chose the jpouch, and it is a completely elective procedure. Losing my colon was not elective, but I could have gone with an ileo and stopped there. In a way I felt kind of "bad" for going through elective surgery, then kind of "giving up" when the going got tough. I had to change my way of thinking.

Now that I have had my jpouch removed and gone forward (not back!) to the perm ileo, I tell myself everyday that this was my choice, just like having the jpouch constructed was my choice.

You have a voice and it deserves to be heard. You are the one trying to move forward in your life, and regaining your health and happiness is the most important, your number one priority. My Dad always says to do whatever it takes to keep number one, number one.

Hugs and lots of support from me to you.

Thank you all.
Yes, if things get worse again, see my new post, then I might have to bite the bullit and head to Cleveland.

Ps
Poucherin to,
It took 5 months to heal? Oh great! bad timing for me! I need at least 2 years then before I can do another major surgery. I need to hang on. Selling my house and building another right now in the mist of things. Plus, I'd like to make it to my sons med school gradation. After that I'm free, lol, life sometimes gets in the way

AllyKat

My butt incision healed (the sutures dissolved) in about 6 weeks. My abdo incision had to be opened up on day of discharge, and that took a long time to heal - about 3.5 months.

What I should have written was this: now that I am 5 months post op I have never felt better. I felt great 3 months post op, and I get even happier and stronger with each passing month.

I know life gets in the way, but you need to look inwards and ask yourself "if nothing changes for the better in 2 years, if every day is a bad day, then how long can I take this?"

There may never be a good time for major surgery, but you could be leaving 2014 in a much happier and healthier place than how you entered it. Just a thought. A consult from Cleveland Clinic sets nothing in stone, it just gives you information.

Life is too short to do certain things, and much too long to do others

Pluot,
I was reading your blog. I think we use the same surgeon and GI over at Cornel? Dr Scherl and Dr Milsom? If so maybe I should go and talk with her nutritionist? She never mentioned diet to me.

I PMed you

Hey Allykat,

I don't know all of your history, but am trying to gather some info from your recent post. I too know what it feels like to have the antibiotics stop working. I've gone through so many now that have worked wonders and do absolutely nothing for me now. I see that you haven't tried the Augmentin yet? I know, the last thing you want is to try another antibiotic. But, for me, this one was amazing (while it lasted). I was on it for 1 year and a half straight with no stopping. I would have liked to rotate, but I was pregnant and nursing. If you could use it in rotation, seems like you could get at least another couple years of a happy pouch?? Just though it's worth a try (unless you already have). I'm getting scared as I'm running through all the antibiotics and running out of options. I started Flagyl a couple months ago, and it's working great, but once this one stops working, I don't have many options left. Best of luck to you!

AllyKat,
It's your body and when you've had enough you've had enough. Find a new surgeon. I'm going to pursue a pouch advancement or whatever as my quality of life is stuck at zero and I'm in a cycle of symptoms and continuing pain. You know how you feel and the doctor doesn't. Good for you for taking charge! Good Luck!

Ahh, I hate even posting this because it seems way too simple, but I'v had pouchitis about a billion times and have only been treated for it twice.

Once I learned what it was, at the first sign of it, I start to scarf down homemade yogurt. I use it like medicine 3 times a day and within one to two days, it's gone.
Many people hate yogurt, but homemade is so much different than store bought. If you want to try it, PM me and I'll send you the recipe.

In any case, my thoughts and prayers are with you!

-Roni*

Roni, yes I have a yogurt maker, thanks for reminding me. I've actually been drinking kefir which suppose to have more probiotics than yogurt. I make my own.

Ps Roni
How long do you "cook" your yogurt SCD says 24 hours. Do you use a starter powder or from the actual yogurt? The starter powder says 6 hours. Confused!

I used powdered starter for awhile until I saw that it had Dextrose in it. Then I switched to plain, store bought yogurt for the starter. I use 1/2 cup of it to two quarts milk.

I normally use Dannon but not the fat free, because they add pectin to the fat free.

Definitely "cook" the yogurt for 24 hours. The 6 hours isn't long enough for the bacteria to eat up all the sugars. If you don't cook it long enough, it's not going to help.

Praying for the best!

-Roni*

Ally Kat,
I do hope you will go see Dr Shen. This is such an important decision. He has been incredible for me.

My chronic pouchitis was not responding to antibiotics + entocort (well, it would, but as soon as we would try to taper entocort I would be right back to intollerable).

Dr suggested immuran PLUS remicade or Humira. AFter a lot of talking he agreed to let me try Immuran alone first to see how that went so I wasn't locked into being committed to the biologics.

I have been on Immuran for over a year now (I am still also on 2 pills of entocort and rotating antibiotics). I am doing amazing-better than I have felt in years. I suspect at some point he may wish to taper the entocort, but for now I am not rocking the boat asking to get off it as it doesn't seem to cause me any issues, and since it is not really systemic, I am not worried about long term steroid use.

Immuran, 6mp were never around back 30 years ago when I had UC, so I had never tried them. I was thrilled to have found something that saved my pouch, it's more convienient than biologics, I still have biologics in my back pocket if/when these stop working, and I am not facing ostomy at this time.

I know there are some minimal risks with Immuran, but there are risks with many things in life-for now, this is a risk I am glad I took. Best of luck.

I realize you may not be interested in more drug treatments, but just wanted to let you/readers know there are other options for pouchitis beyond antibiotics and ostomy. And i agree that if pouch removal is what you want and you have pouchitis that is not responding to treatments and you don't like the risks of heavy duty meds, by all means, find another doctor. Good luck!

FYI-Probiotics, diet changes, pepto bismal, etc. never did anything for me, to cure pouchitis or keep it in remission. I am glad they work for some, but chronic refractory pouchitis can be touch to treat, especially since there are likely multple different causes of our symptoms.

My new GI doc said that they are seeing a "new" autoimmune disease 20, 30 years post J pouch, where it's like the body is again pulling on its genetic trigger to have IBD, and it's now attacking the pouch. It's one of the scenarios he painted to me as to why I'm feeling like I do, 23 years later.

If that's the case, I, too, will be on a "UC" med again. He also said old pouches when biopsied and sent to pathology are reading as "colon" and the pathologist, if not told it's a J pouch, cannot tell it's small bowel! Makes me imagine the conversion may be the trigger for the autoimmune response.

Not that I'll ever regret having this done to me, but I do sort of feel there's a possibility life with a pouch may become cumbersome eventually. I've had a good (great, even) run with mine, but things keep slipping, the older she gets.

Wow, that's fascinating about the pathology appearance of our pouches after 20+ years. Unfortunate, but fascinating, and makes total sense why I am now back in the "chronic disease" club...

Rachel-looks like we've traveled a similar path with UC as kids and now "old pouches" with csome complications along the way. In 1982, the idea of pouches was in baby steps, so back then I was happy to have been able to hang on with prednisone and relapses/remissions for 9 more years, and I agree, the pouch has served me well. At this point I am going for gratitude for how relatively well I've done, and happy that I am medically well-managed for now and hope to ride that out as long as I can, too. Lot's of new advances have materialized over the last 20-30 years, so hopefully more will over the next as well...

I'm sorry to hear about your daughter's diagnosis.

Yeah, I saw your timeline before, and remarked on the similarities!

Back when I had the surgery, I thought I'd never be plagued with issues again. Hah! But we are the trailblazers in this. I hope that our issues can help teach and prevent others from similar paths. Again, I have no regrets, and I'm often still having "good" days. But where 10 years ago I never even thought twice about my bowels,etc., these days, it's not the case.

Thanks about the daughter. Worst nightmare ever to pass it on to her, but I have hope.