New to this Forum & feeling totally blindsided by what I'm learning...HELP!?

You've really been through the wringer. I'm sorry.

The word "normal" is often unhelpful, since each of us has a different set of circumstances to start out with, and a different response to the various medical and surgical treatments. Certainly most J-pouches have a better time than you have had. I think one of the key questions you're asking is "have I just had untreated pouchitis this whole time?" (Please let me know if I've misunderstood). I think the short answer is that you've plainly had much more than pouchitis going on, even if pouchitis may have contributed to your trouble. The Cipro and Flagyl that you took might have been a good trial to figure out which of your problems (if any) are pouchitis-related, but you didn't tolerate the combination. One of them might have worked fine, but it sounds like they weren't tried separately. It may still be worth exploring whether a single, well-tolerated antibiotic makes you feel better. Given your rheumatologist's observations, you have probably graduated to a biologic drug, though, perhaps Remicade or one of its cousins. Many of your problems may also be adhesion-related, and each surgery may have made that a bit worse. You need a decent gastroenterologist, for sure. If you're near enough to an academic medical center, I'd suggest starting there. I hope this is helpful.

Yes, that's definitely one of my questions! I'm a few hours from Portland, OR. How would I even find a facility? I have a great surgeon who's affiliated with the Mayo clinic  but now I realize I've thought so much of what I've had was "normal" I haven't brought it up to him. I see him Wednesday and am wondering what I should be asking him... Suggestions?

OHSU likely has gastroenterologists who could be helpful- others here may have specific names, or as a last resort you could call the gastroenterology department to ask for a doc with expertise in J-pouches. It might take some investigation and persistence. By the way, "friable" just means fragile, as in easily torn or injured.

Perhaps your surgeon could help you start to tease apart the *multiple* things you have going on. The first step is identifying each of the issues, or at least developing a list of possibilities. The second step is developing an approach to managing each one. Occasionally the treatments may overlap, which is handy. The third step is working out which of the issues may have been misidentified, and which of the treatments are ineffective or intolerable, and revising the plan.

Here's a list in a form terse enough for a surgeon that might be a start:

1) 22 surgeries (probably many adhesions, leading to pain and obstructions)

2) 2 prior fistulas

3) Cancer? (Perhaps all gone). Maybe this was dysplasia?

4) Prior C. Diff (it can easily recur) and MRSA

5) Frequent BMs and nightly incontinence (may need Lomotil/Imodium and/or soluble fiber, or pouchitis treatment)

6) Swollen joints and borderline rheumatology lab tests (and fibromyalgia)

7) Anxiety/panic attacks

This list surely would need refinement, but there are ways to address each item (and begin to assume some sort of control over it), even though some items will likely cause more ongoing trouble than others.

I echo Scott's sentiments. Sorry that you have suffered so much. Most of us were far from being "experts" in IBD, GI surgery, and related autoimmune diseases when we started on our journeys. When you are blindsided by serious illness, you really just have to trust your providers to advocate for you the best they can. You may have even been fully informed about everything, but the stress of all this makes us forget much of what we are told, or providers may have simplified things so much as to to be meaningless. So, please do not feel foolish for assuming what you are dealing with is "normal." I went for years thinking my pouchitis symptoms were "normal" and I am an RN!

As Scott said, normal is different for all of us. The more complications you have, the more likely you are to have chronic issues. But, that does not mean there are no treatments. I also have both GI and arthritic complications. However, my rheumatolagist is easier to communicate with, so she has been ordering my biologic treatment. My GI just recently communicated with her to change to Remicade and add Imuran for better treatment of my pouchitis. So, it is best if you can get providers who work together. OSHU is probably a good choice for that, as you can get specialists in the same system.

With a history of C. diff, treating pouchitis with antibiotics can be a problem, but not impossible. With your fistulas, you are more likely to have continence issues, so you cannot compare yourself to others here without those complications.

I also recommend Scott's approach of condensing your concerns into a concise list. Also, do not be shy about writing down the doctor's responses, or asking him to write them for you. Post visit amnesia is way too common, no matter how smart you are. It also helps to bring someone with you to your appointments.

Finally, we are here to support you and offer advice through our own experiences. Apologies in advance if we sometimes seem blunt or uncaring. That is never the intent here.

Jan

THANK YOU both! I'm incredibly impressed with the knowledge and help offered! Wish I would have found this forum earlier... We will see what my surgeon says Wednesday! I'm really hoping for some help in getting a GI doc! I'll do some investigating and see about OHSU. Thanks so much again...the list is a great start for me!

 I am very confident you're not going to get rude or mean comments on this board, so you've come to a good place.  I can't hold a candle to what Jan and Scott have offered  -- they're very knowledgeable, along with others here too!

I'll keep it at "Welcome!"  Best wishes.  I am very sorry for your issues, but better days ahead!

Hello faithhopelove

My first time posting. I read your story and feel for you my dear. I have had the j pouch for 21 yrs. I have had numerous problems, ( nothing like yours). I had my j pouch built at OHSU in Portland Or. My Dr. Name was Karen Deveney. She was wonderful for me. Hope this helps.

mp

I am so glad you found us and so, so sorry you have been through the wringer...and then some.  I think Scott and Jan did an excellent job of summing up a starting point for you.  I have had my j pouch for 30 years - and I did not start in this forum until about a year ago - I have found it the most wonderful thing I have done for myself in ...ages and ages. You will find kind, wonderful people who will just give you support - and who may think of something you have not regarding what you are experiencing.  Again, so sorry for your experience - I sure have had some ups and downs - but my dear, you have been through far too many  - it's hard to advocate for yourself when you are so sick... as Jan said - you were blindsided - how would you know what is "normal" and "not normal" - and, as Scott said so well, there is no "normal" - all of us experience this j pouch world differently.  But, this is a wonderful place to come to feel a)heard, b) understood, c) get answers and finally, d) if no answers, people can often point you toward a person or place that may have better answers.  May your life improve- slowly but surely - one little step at a time.  Sending a hug through cyberspace.