Upset - maybe misdiagnosed and biologics concerns

Hi, BlueFlame! Like you I have an uncertain diagnosis, though it's been uncertain for longer. I can't change your doctor's mind, but long-term antibiotics work great for many of us. I was on Cipro alone from 2009-2014, and have added Flagyl since then. I would have preferred rotating among several antibiotics, but I couldn't find others that worked for me. I've had no particular side effects. The Cipro did indeed lose efficacy, but adding Flagyl took care of that. Some do get side effects, of course, but I've been very well served by long-term antibiotics. Heck, I just today finished up a week of scuba diving in the Caribbean!

Other folks here have gotten great results from biologics, and the bad side effects really are quite rare. Don't fret, just find something that makes your life work.

Good luck!

Thank you for that, Scott. Yes, really no changing her mind. She keeps throwing out pouch failure looking long term if I decline biologics. 

One thing I know is a no carb, no sugar diet helps me greatly. I haven’t followed it in a long time though and my symptoms seem to follow when I fall off the wagon.

Doc isn’t going to like it, but I think I may need to explore alternative diet more before going down the medication rabbit hole. I’m not good about saying no to doctors but I’m not so sure about this. Clearly the docs aren’t either. 

Rotating antibiotics is a valid and preferred way to manage pouchitis ("inflammation of the pouch") prior to going to biologics. (Like 1 antibiotic for 2 weeks, then another for 2 weeks, then switch back, etc.). If your further testing doesn't show inflammation elsewhere in the bowel, then it sounds like it is indeed "pouchitis" although there are likely different "causes" of pouchitis-it could be inflammation of the pouch somehow triggered by an overgrowth of bacteria (which antibiotics seem to help, as might a major diet change, like low FODMAP) or it could be "crohns of the pouch or crowns-like" or some might refer to it as IBD of the pouch-I have heard that after a couple decades of a pouch, that histologicslly (on a microscope slide) that the tissue of our pouch, technically small bowel, actually begins to look much more like the architecture of a large bowel on the slide.  To be honest, a good work up should be done to rule out other involvement, but if inflammation is al in the pouch, what they call it isn't as important as how they treat it.

when rotating antibiotics wasn't cutting it for my chronic pouchitis, my Dr recommended immuran plus a biological. I was not keen to try a biologic just yet, since I have never tried immuran back in my UC days. Doc gave it a low chance of working, but agreed to let me add immuran to my rotating antibiotics. It took 3 months to build up in my system and has been working great for 2.5 years. I tried to go off the antibiotics, but symptoms crept back, so for me, the combo of rotating antibiotics plus immuran works well-regardless what the exact "cause" of the inflammation was. Plus, I love that I still have the biologics in my back pocket if/when my current regimen stops working.

This article is pre-biologic options, but clearly rotating anitiniotics is a valid treatment, as are other immunosuppressant options. Shouldn't have to go straight to biologics if you don't want to. https://www.researchgate.net/p...28ace5c7ee000000.pdf

Thank you, Jja. I’m told some granulation showed above the pouch last year. She now sees more inflammation and ulcers in and above the pouch. She says it’s not fecal backwash. Perhaps the addition of some granulation and now ulcers that’s suggestive of crohns is why she’s saying it’s not pouchitis. She told me antibiotics might make me feel better but won’t heal the ulcers. 

Last year she sent me for a small Bowel series and no additional ulceration was found higher up. She’s sending me for the same this year and says she suspects there would be more than what she can view with the endoscopy. Last year I turned my diet around for a few weeks before the small bowel series and the test came back clean. I have a few weeks before the small bowel series again, so I’ll work on my diet again. 

The doctor says at this point nothing I do or don’t do will matter. I know that’s not correct. What I don’t know is if I can heal the ulcers without medications. It seems I also need to look at some new diet things first that have been suggested to me. I’m not ruling out biologics but I’m hesitant knowing the doctor so quickly dismissed diet factors. 

Blueflame, if the diet helps, but you only follow it when a test is coming up, then it's doing more harm than good, by masking your usual state. It's reasonable to try if it's a diet you'll be able to follow.

Yes, agreed Scott. I’ve been thinking on that. At the same time, if being consistently responsible in what I eat brings things in line, I owe it to myself to make that effort before resorting to meds that create other problems. I remain open to all treatments. Just feel like this has been a flying leap to biologics. 

My one caution is that it's easy to fall into the trap of assuming that the risks from medication are worse than the risks from untreated (or inadequately treated) disease. As a general rule, the opposite is true. Good luck!

The prior posts by JJA and Scott are right on. I have been rotating antibiotics to treat pouch inflammation since 1995. As long as you rotate there is no decrease in efficacy. While I have kept the pouch inflammation in check, I developed inflammation above the J Pouch in 2007. I changed my diet to include less carbs and sugars in 2012 after a scope showed very bad inflammation and my subsequent scopes were better. In 2015 I began taking Remicade, which has cut my antibiotic dosages in half. The Remicade has essentially eliminated the pouch inflammation but the inflammation above the pouch has proved more resistant to treatment. It is believed that this inflammation may be due in part to fecal stasis above the pouch because my J Pouch inlet was narrowed due to scarring and inflammation. 

Regarding side effects on biologics, I have had none. No weight gain. Nothing. I have been on Remicade for 2 years. I still take antibiotics but in significantly lower dosages. I maintain a modified Paleo diet. Limiting carb and sugar intake is a huge key, in my opinion, and based on my experience which is now 25 years treating a J Pouch for various issues.

Thank you CTBarrister. Agreed on carbs and sugar. I’ve found the same, as have others. Finally an article from Mayo acknowledged it. My experience is doctors do not acknowledge this and, at best, say everyone finds what works best. 

I’m starting to look at organic, too, as there’s much info on that and some fellow IBDers have found benefit. 

Do you have/have you had ulcers and granulation? This is the new thing my endoscopy shows, not just inflammation. And the doctor insists inflammation above my pouch isn’t fecal backwash. 

To answer you yes and yes to ulcers and granulation. All biopsies negative. My doctor said the fecal backwash/fecal stasis from the narrowed J pouch inlet created small intestine bacterial overgrowth. This was back in 2012 and I counteracted it by reducing carbs and sugars. My diet prior to 2013 was horrendous. I am a foodie and 2010-2012 one of my clients roped me into a dinner club that went to very high end restaurants in New York and Connecticut and I got carried away with it and paid the price. I did improve the situation with changing my diet but the inflammation just above the Pouch is what has been most resistant including to Remicade. I suspect if the J Pouch inlet was widened and there was a sphincter preventing backwash stool it wouldn't be an issue, but there is no backwash valve like there is with the colon. 

I have now lived with all of this for a long time (25 years) and hopefully will keep it in check for another 25.

Regarding organic- I do eat some organic foods. Most important is avoiding anything processed. I try to eat mostly whole foods. I have a yogurt for breakfast and salad for lunch every day. My diet is fairly healthy with occasional cheating but I adhere to it for the most part.

Thanks, again, CTBarrister.

Biopsies were negative for what? My biopsies were negative for abnormal cells/cancer. She’s telling me we’re next doing a blood test for Crohns and the small bowel series to look for more ulceration. She seems certain it’s Crohns or indeterminate colitis. 

My biopsies were negative for the same, just have inflammation. I am suspected to have Crohn's but all diagnostic testing was inconclusive and frankly it's a complete waste of your time because whether it's Crohn's, pouchitis or "new IBD variant", it's going to have to be treated and all treatments for these disorders on people like us are exactly the same. Your Doc's diagnosis is probably correct but it doesn't matter because it's likely not going to change anything as far as treatment. My doctors stopped wasting time with diagnostic testing for the same reasons a long time ago.

I had the Prometheus blood test. Total waste of time. It was read by two pathologists - at Mount Sinai and one on the west coast - as inconclusive. Even if it was conclusive it wouldn't matter. So it's a waste of your time IMHO.

I understand what your saying but I’ve lived with the belief I’ve been disease free 27 years with the colitis diagnosis and j pouch surgery. I was always grateful it wasn’t Crohns. 

I also have struggled with medicine side effects a lot. There are some big ones with biologics so I don’t understand why she’s jumping to that first. On the weight gain, middle aged women are most prone, while men are least prone. 

Biologics work well for many people and docs want to find ways to alleviate suffering. I don't see a reason why you couldn't try immunosuppressants and/or antibiotics and/or budesonide (which are all (maybe not antibiotics) treatments for various IBD conditions as a first go (the risk being it maybtake several months to see if they are working and you run the risk of inflammation/ulcers/granulation getting worse, and when things get worse it can be harder to get back under control) before biologics. It's your body, so you should have the final word. I would straight up ask the doc why she is not considering non-biologic options if that is something you would like to try. They are not usually the only option or even necessarily the first go to for treating Crohns or UC either. Treating/not treating and all the treatment options have there own set of risks/potential side effects.

you need a doc you feel is listening to, can answer your questions about treatment Rex's, and that you feel you can trust. It is definitely your perigotove to ask "Why doesn't it make sense to try X?" "Or why don't you recommend trying Y first" - she may have reasons that make sense, given your unique situation, but you need to feel comfortable with the reasons/rationale.

My doctors also pushed biologics first for the same reasons, and because they believed them to be safe. I was put on Entocort before biologics but that was at my request. I can understand your concerns. You don't know about side effects until you try them. Nothing ventured nothing gained, or lost. Ultimately they may be your best option, but I agree with JJA that you might want to try Entocort/Budesonide first.

Thanks again. Yes, I didn’t even know questions to ask about treatment as I’m researching after meeting with her. She’s good but abrupt and not open to suggestion. I’m to have a follow up consult with her PA team to discuss treatment, followed by a treatment plan appointment a week later with her. I’ll be asking about all options now that I know more. 

Blue Flame,

Just remember it's your body and you get to decide the course of treatment.  I would suggest that you be forward with your doctor and tell her what you want to do, after you come to a decision.  Like you, I was very resistant to the idea of biologics when they were first presented to me by my doctors.  I eventually decided it would be wise for me to pursue it., but did not do so until years after they were first urged upon me.  You may not have reached that point yet.  I eventually reached the point where I felt that we needed to try something else.  Good luck with it.

CTBarrister, thank you for your kind replies. Very much appreciated. That all makes a lot of sense. I hope you are well. 

JJA, thank you, too, for your very thoughtful reply. Somehow I missed the last one. So very helpful. I’ll be rereading all this as things proceed. I hope you are well.

I can say I completely changed my diet 5 days ago and added some new recommended things for healing this. My symptoms have backed way off. I can even lie on my stomach, which is something that normally sends me straight to the bathroom. I know the doctor may resist my wanting to take this one step at a time, but when she tells me diet and probiotics won’t help while I know otherwise, I’m a bit resistant to aggressive meds right out of the gate.