I've seen some mention of bone broth here, but I have no idea how useful it is, other than nutritionally.
Since you failed with Remicade pre-op, that bridge is likely burned. But, there's still Humira, Simponi, and Cimzia. I've been on all of them for a couple of years each. My big bugaboo now is my enteropathic arthritis and I am looking into medical marijuana to help me reduce my systemic pain meds. Some folks here claim it helps with their gut symptoms too.
Jan 
Good luck with the arthritis! I'm trying not to get there but of course it is not in my control. I'm trying to look at the bigger issue of chronically elevated CRP as the biggest risk to my health long term, with all the things that go with it, and work on that with food. It's hard, though--this poor gut prefers junky foods that are low residue still. Green juices have only made me miserable, but broth is usually friendly.
Merry Christmas all! Here's hoping for a healthier New Year! (with continued access to health care for all...)
Athena,
Colectomy should not leave you disabled. Being healthy enough to work in peds is a more than reasonable expectation for yourself.
There are many, many natural healing modalities you can try. This forum is a resource, but frankly there are many others. To start with, I highly recommend considering the Paleo (or auto-immune Paleo protocol) diet to see how that affects you (a big leap, diet wise, but some swear by it). I would consider trying natural antimicrobials to see if they can exert the effect you seek from antibiotics without the toxicity. I would try Rifaxamin. I would make sure I'm using a bowel slower like Lomotil. Frankly, if you can get access, I would try using medical cannabis to help your nighttime symptoms. Biologics are not your only option.
Furthermore, your experience with an ostomy is an uncommonly poor one. This should not necessarily be a reasonable experience. You may have had a temporary diverting loop ostomy which is known to be difficult to manage. That said, when I had mine my quality f life was great (no leaks, changed bag ever 7 days). After two terrible years of jpouch life, I am going to a permanent ostomy.
I am considering medical school myself right now. Im not concerned about my physical situation. Just wondering if I really want to become part of the medical industry or not given how little it has been able to do for my autoimmunity and quality of life.
Hello, Athena.
I'm eight months after reversal. I consumed bone broth as soon as I got home from proctocolectomy and j pouch creation. I believe it helped me recover quickly from the surgery, and helped me get healthy and strong so that my reversal was moved up and done early, less than three months later. I ate a high protein, soft diet: steamed fish; scrambled eggs; roast chicken; rice; sourdough bread with peanut or almond butter; sweet potato microwaved; and bone broth as soon as I got home from reversal. There was frequency and urgency in the first four months, but after that everything settled down. I get pouchitis if I've indulged in something too sugary or carbo-y, such as Sunday morning almond croissant(s).....
The bone broth we make is simmered for a few hours with carrots and mushrooms and also some pork or beef to fortify and add substance. Simmering the bones draws out minerals. The vegetables are softened enough that I can eat them, no problem. Sometimes when I heat the broth I add cooked orzo or cooked rice or spinach to the broth and have a meal-in-bowl. If you don't want to use bones, or prefer a vegan broth, you can try simmering all your favourite vegetables with a clove of garlic, strain, and add very finely chopped herbs and firm tofu at the last minute. Try adding turmeric. Or miso for a lot of flavour. I make broth once a week, fill Mason jars (glass keeps the broth longer) and have one per day. I don't use Immodium or Metamucil. I tried in the beginning but they didn't work for me. I don't use any meds except Cipro for seven days when I feel pouchitis, and that is happening less as time goes on. I average seven times in a 24 hour period. I hope you and your new doctor find a solution in 2017. Best wishes for your good health. Merry Christmas.
I too had a horrible time with my temp ostomy and my skin. I had surgery to divert from using my j-pouch to a permanent ileostomy fall of 2015. My chronic cuffitis and pouchitis continued. I was having strictures too. I had my j-pouch removed in March 2016 and am glad I did so. My ileostomy is much easier to deal with than my sick diseased j-pouch. I understand trying medications to avoid removal or diversion surgery. In my case I just wanted to quit taking them all as nothing was working. I am fortunate to have care from the Mayo Clinic in MN. Having an ileostomy is the right answer for many. I suggest anyone havung chronic problems to try to get into Mayo or the Cleveland Clinic to obtain their experts opinions. My local GI sent me there because in his words, he was a generalist and I needed an IBD specialist.
Sheesh! My doc has no idea what to do with me and I had no idea so many people struggle with this . My life was better before I had this stupid surgery. I'm almost at a year post take down and my life has been completely taken away from me.
If im not better by my birthday in march I'm going back to the bag permenantly this is been such hell and I'm in so much pain all the time. I can't sleep through the night and I can't work and it's affected literally everything. My docs keep holding off of suggestion surgery again but don't you think they'd have a new process for surgery if so many people suffer like this?
clearly this surgery isn't a very successful one. Yeah they can make great pouches but the disease occurs in the pieces they left in there. Why don't they take it all out? Most UC is in the rectum too well I know mine was.
Can you ask your Dr. To refer you to a Specialist? My local GI and surgeon didn't know what else to try when canessa &/ or anucort didn't get rid of my cuffitis.
I think that too Clark. He left part of my rectum, cuff, when I 'd had UC there for 14 years. The hand sewn surgery isn't as successful, leakage wise, as the double staple surgery which is what most of us had done. I thought he was taking it all when I had surgery.
I hope things improve. I was told it took a year for it to heal. After that year I had cuffitis and c.diff. Has your doctor tested you for c.diff? My local GI caught that. It was impossible for me to tell I had that with cuffitis.
Yeah I've been tested for c diff. It's always come back negative. I am under more stress than usual so I know that's not helping. My pouch isn't holding anything right now I have pain and urgency and barely anything comes out when I go to the bathroom.
Usually when this happens I just don't eat but that's not even working.
Clark, I completely agree with TE Marie’s suggestion to be referred to a specialist who might be able to reduce the problems you are having to an acceptable level. If you cannot find one in your area, you could consider going to the Cleveland Clinic or Mayo Clinic. If it finally comes down to pouch removal, you might wish to check out the K pouch and closely related BCIR that do not require having an external bag. Both of these procedures have a high success rate and high patient satisfaction. When recurrent high grade dysplasia in the rectal cuff made J pouch removal necessary, I researched my options and chose to get a BCIR. The surgery went well and I now enjoy a very good quality of life. For me, this was my best choice.
Bill
I will have to research that option too, Clark! I'm on several meds for frequency at baseline w my pouch. Many foods I would prefer to eat either get stuck at the site of my ostomy repair or cause more bms. I have done bone broth now for a month and no better. Made it myself, nice and rich, but it wasn't enough. I had antibiotics for 2 rounds, and I am finally feeling better. Now I want to maintain without having another course. I already take probiotics.
My situation was complicated from the first by a pelvic abscess and chronic peritonitis that went untreated for months as my surgeon blew off my postop symptoms and pain. I finally went to someone else, who drained the abscess, and got my life back for a while. I was really saddened to go backwards after 4 decent years.
The cuff had to be left behind for a continent procedure--2 cm. Can't hook pouch to anus directly when doing this. There is no room to staple--requires bowel that can be mobile, and anus is not. I had dual staple repair and it leaked anyway. My surgeon did tell me the cuff could have UC later. They should have told you that. But it is better to have a smaller inflammatory target than to have the whole diseases colon.
Many do well, but post leak very few do from the studies I have read. I was super terrified in those first posts I left here, but it is getting better at last. A good, persistent GI doc has been my answer. Many people have had good luck with other measures. I tried all kinds of diet mod, including paleo, on my own since this began in May, with no discernible benefit. It was very stressful to think about losing the pouch. I'm not ready to ever try an ostomy again--and if I did I would want pouch removal. Thank goodness something worked. Everyone has to find what it is for them. A higher dose of flagyl and later cortifoam for my cuffitis seem to help. Both at once was not good--led to the worst perianal candidiasis ever! But sequentially they both helped me.
It has been so hard to do the physical parts of my job during all this. I can't call in sick. So now that I have started to turn the corner, and don't need nasty biologics yet, I can keep working for a while yet. Last time I was on biologics I had to miss lots of work bc sick from every kid who walked in w a germ. I almost had to stop doing procedures when I had the ostomy bc the bag would leak at the seal w my super sensitive skin, and the hospital was scared I would cause a patient to have an infection. I never did but they are not willing to take a chance, and I understand that.
Good luck, and I'm hoping things will last. I am pushing to reintroduce the veggies I couldn't tolerate for the last few months, and maybe the inflammation will come down in the blood also.
Sometimes it just takes time--and the right change. Thanks, folks, for your thoughts and ideas. So glad I have a good doc at last who can help. But I echo those who say find someone who can--I stayed w my surgeon too long and suffered much longer as a result.
CLARK,
I hesitate to suggest this as it is what I had to do to empty my pouch out before getting diverted to a permanent ileostomy. I have a bidet seat and was using it to give myself enemas 4+ times daily. When I had to be away from home I gave myself manual enemas. It felt much better than straining. I am not suggesting anyone does this without discussing it with your doctor. My Mayo GI and surgeon both knew I had to do this as they both had dealt with the strictures that prevented me from going without horrible straining. My pouch had run it's useful life by the time I did this and I did it for months. No diet could prevent the pain.
