I was dx with UC when i was 16 months old, had a full colectomy when i was almost 10 years old, and now they're thinking I was misdiagnosed and have had Chron's this whole time. I started having problems again about 7 years ago, when after my colectomy I had been fine up until then. I have 3 or fisculas which is why the dx is now chron's. I was on remicade for almost 3 years, was up to 10 mg per infusion every 4 weeks, I have been on humira for about 6 months now, and have just started taking the shots every week, 40 mg. I am going to see a surgeon in a couple weeks to talk about having the bad parts of my small intestine removed or just having an illiostomy (sp). I had the option of having this done when i was younger, but my parents opted for the pull through method so i'd have "a normal" life.

I am curious about what all is involved with this surgery, and recovery time, and how day to day life is living with the bag... how well is the bag hidden and how exactly does it "work"? (changing the bag and what not).

I am barely going to be 26 and am definately not looking forward to having this done... so much for the normal life...

so sorry to hear this

I cant coment on the surgery but my son has had remarkable healing of fistula and Crohn's kept under control with diet and anti-inflammatory + healing supplements plus acupuncture

have you read the book The Maker's Diet by Jordan Rubin?

No i haven't. I've been taking so many meds since i was born, and not to mention all the ones for RSD that i've gotten so frustrated with them not working i stopped taking all supplements and non absolutely neccessary meds. i only take the humira and then pottasium citrate.

what does your son take? i'll have to go look for that book.

Hi Andrea

my son has hypersensitivity to many rx meds and altho he tried azocol and other Chron's meds in the beginning they had side effects that were not good especially as related to his Tourette syndrome

after reading the Maker's Diet we adapted his diet to incorporate more anti-inflammatory whole foods and eliminate those that trigger inflammation. altho we didnt follow the recommendations in the book to the letter, we used it as a foundation.
I did some research and we added specific supplements including NOW Boswellia (a blend of boswellin and curcumin extract from turmeric) and White Willow Bark as anti-inflamm and Slippery Elm to provide protective coating to the GIT. Also DGL-liquorice root (must be DGL not plain) to promote healing of the ulcerated areas and fistula. In addition he has a daily multi shake by Jarrow called Multi Easy and extra methylB12. He takes other supplements as well for his TS/OCD so we do feel the combinations help, especially the extra magnesium, vit D and P-5-P form of vit B6

(we get all these at iherb.com as least expensive there)

he used to have excruciating pain from the Crohn's but since starting those supplements it has totally subsided and his fistula healed.
He still has to be very careful on what he eats and has learned by trial and error which foods seem to upset his digestive system

I really recommend that book as Jordan Rubin was at death's door with really severe Crohn's and his story really is a remarkable one of hope for healing.

hope things get better for you

I had Crohn's diagnosed after the removal of my colon in 2002, when I developed fistulas in my j-pouch before my iliostomy was taken down. I underwent three Remicade infusions, which did clear up the fistulas. In 2006 I developed another fistula, and have been on Cipro ever since, which healed the fistula and has kept further fistula formations at bay.

With our severely altered anatomies I would doubt that we will find a cure in a diet. Nothing will return us to full function, as if we still had our colons. Remissions can last years, but there is no cure for a missing organ.

While diet is highly important to those of us with Crohn's/colitis, stories of various diets "curing" Crohn's need to be taken as what they are . . . isolated incidents of individuals' stories of success. You must be highly aware of the signals your body gives you about the foods you eat, or else following someone else's idea of the perfect healing diet could be disaster for you. I know this because I can no longer eat whole grains, fiber, raw fruits and veggies, nuts and seeds, and many foods deemed and proven to be healthy to the majority of folks. If it did not listen to the signs my body gives me when it is having a bad reaction to some foods I eat, I could end up losing my -j-pouch, and I did not do well with an iliostomy.

Before my first surgery to remove my colon I tried all the foods, supplements and other "healthy" ways to "cure" my severely inflamed and diseased colon. I guess you could say I also followed, albeit loosely, the recommendations outlined in Rubin's "The Maker's Diet," and remarkably I took many of the same supplements Chemar described! I watched as my condition grew worse, and if I had been stubborn and stuck to the diet, I may have died. Crohn's does not have a standard course nor does it respond to the same treatment in everyone. If you have parts of your small intestine that are diseased and dying, why would you want to put off treatment? Life with an ostomy, while different, and for some of us, difficult, is better than chronic inflammation, disease, and pain.

Before I ran out and spent $20 on this diet book, or hundreds for the online version of a diet counsellor, I would investigate the pros and cons of changing how you are eating based on someone else's experience. And I am sceptical of anything put forth as a cure that is part of a money-making empire of health food, supplements and diet books anf plans. In 2004 the FDA ordered that Rubin cease making the claims he did about many of his recommended supplements. A little research and you also find that Rubin's degrees quite likely come from unaccredited and possibly non-existent schools, and at least one of his certifications is a meaningless piece of paper that costs anyone who applies for it about $50-60. http://www.quackwatch.com/11Ind/rubin.html

One question to ask oneself about this diet: If it instructs us to eat foods God created to be foods, why are Rubin's supplements even necessary? This kind of contradiction should be a red flag to anyone who investigates this diet or Rubin's claims.

I would, however, recommend another opinion regarding converting your pull-through to an ostomy, as well as the surgery that is being recommended. It is always a good idea to give yourself the benefit of concurring opinions beofre heading back to the O.R.

sorry it didnt work for you lefthanded, but my son is living proof that nutritional methods can keep Crohn's in remission

we dont use any of Jordan Rubin's products, but nomatter where his degrees come from or what some may feel about him, I am very thankful for his book that provided me much info to help my son

re quackwatch...if I had paid attention to them years ago, I would not have seen the dramatic improvement that my son underwent after withdrawal from antipsychotics/SSRIs given for his Tourette Syndrome.
It is one thing to be a good watchdog, but to rip apart anything they dont agree with is often very counter productive

however
to each their own.............

For some people.

And I am not saying nutrition or use of natural foods and substances can't be of great benefit . . . but Remicade works for some and not for others, prednisone works for some and not for others, etc. I am glad your son found his remission this way, believe me. But just like any treatment, and especially with a diesase like Crohn's, it is a case-by-case story . . .

I'm glad you clarified that lefthanded, as your previous post made it seem to me that you were dismissing nutritional treatment for Crohn's as "quackery"

and yes, no one treatment is going to work for every situation. people are unique and their responses to prescription meds, supplements, surgery or any other treatment are very different. That is why being able to share all experiences allows others to make their own informed choices.

Now to answer the question, "what is an ostomy like?"

There are online groups and organizations that do nothing but address these kinds of questions, provide support, and are there to listen when you have quesitons. I am going to give you some links, as the information is too vast for me to repeat here without missing something:

United Ostomy Associations of America: http://www.uoaa.org/ostomy_info/whatis.shtml

NIH: http://www.nlm.nih.gov/medlineplus/ostomy.html

ASCRS: http://www.fascrs.org/patients/treat...enings/ostomy/

Ostomates: http://www.ostomates.org/


My initial experience with my ostomy was one of relief and wonder. It was amazing after having a gut at turmoil for months, then at rest for nearly two weeks, to feel it start up again, and to see the stoma actually move and do its work. In no time I was resuming actiivites, including taking in a Mariner's baseball game less than two weeks from my release from the hospital! I actually attempted my return to work at five weeks post-surgery! (I don't recommend this.)

For about 6 weeks things went pretty well for me. My partner helped me with barrier changes and was very supportive. I even thought about how, once I was stronger, backpacking and mountaineering would be simpler, with an easy to empty bag instead of having to deal with using the "blue bag" system required when climbing in National Parks. I would have to figure out how to secure my backpack so it would not rub on my ostomy area, but I was psyched!

It did not last for me because of rapidly forming scar tissue which changed the contours of my abdomen, and I started experiencing leaking because my barriers were not staying adhered. THIS DOES NOT HAPPEN TO MOST OSTOMY PATIENTS. I just grow scar tissue like it was a hot commodity . . . to this day it causes me huge issues.

I worked with three different groups of ostomy nurses on this issue, but it had begun to interfere with my half-days at work. I would sometimes arrive and have to leave right away because of a leak. My commute was 45 minutes in horrible rush hour traffic into downtown Seattle (notorious bumper to bumper stopped traffic on a daily basis) . . . and there were no facilities available where I could adequately change my barrier and bag. So a leak meant another 45 minutes home, and another 45 minutes back. I did this several times over the course of my three month attempt at returning to work. I would have helped to have an understanding and supportive employer, but they proved to be just the opposite.

That was 7 years ago. I had a j-pouch construction and my ostomy was reversed in the spring of the following year. For several months I had a knuckle ileostomy, which was harder to manage than the end ileostomy I started with, but they are easier to take down when the j-pouch is ready. Like I said, not everyone has the experience I did. I know of scuba divers and mountain climbers who you would never know wear an ostomy appliance . When they work, you feel free from your disease.

I suggest you find a support group or forum, either online or one in your area, you so can have a good knowledgable support system in place. If your insurance lets you choose, try to select a good ET/ostomy nurse by interviewing several, as this will be your best friend when and if issues arise. They are angels!



I am curous, though, if your pull-through is still functional, why not just have selective removal of diseased intestine? And I am also curious. . . does your pull-though have a reservoir? I am curous how a standard pull-though works!

In some respects Chemar, I have to be honest and say I do tend to be dismissive of most nutritional "treatments," as they lack the controlled, scientific studies to show that or how they might work. Most are supported by anecdotal evidence, which is not bad in and of itself, but there is a lot of quackery in the supplement business. But then, I don't give the big pharmaceuticals my undying loyalty and reverence either! But I applaud those who work to find their own cures or maintenance without resorting to the use of drugs . . . but one must follow a responsible path that includes the use of what medical knowledge is available to us at the time.

That said . . . I DID fire my first gastro who laughed when I asked him about pro-biotic use. And this was the same man who suggested I caused my colitis by eating a handful of walnuts!