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How Crohn's Disease Ruined Alaska

Greetings,

I spent the better part of this summer working in a remote field site in Alaska -- specifically, in the Nulato Hills of the Yukon Delta National Wildlife Refuge. Our field crew was helicoptered over thirty miles from the nearest village (another sixty from the nearest hospital) to study one of the planet's rarest shorebird species in one of only two viable populations left in the world.

The night before our departure for the field, I spent a good portion of 9 hours with intense abdominal cramps and vomiting/the "D" word. I had consumed meat from locals prior to this horrific experience and, as I felt better in the morning, assumed I must have had an acute case of food poisioning.

A life-changing six weeks in one of the last great wildernesses went by with no further problems until one night I began experiencing the exact same symptoms as described above. Convinced that food poisioning was not the issue, my project director called for a refuge helicopter to take me to the nearest hospital. After an 8-hour wait to be seen (this was bush Alaska, afterall), I was sent home to Michigan to see a specialist, resulting in my recent diagnosis of a moderate case of Crohn's Disease.

I'm currently in the process of self-researching various treatment options, given my GI's opinion that I start on a combined immunomodulator/biologic therapy immediately to prevent my disease from progressing any further. However, given that my family has a long history of cancer and my higher risk for the development of cancer given my age and sex, I'm hesitant to jump right into this treatment plan.

This forum has been very helpful in getting a sense of the success others have had with drugs like Humira, which is likely in my future.

Can anyone comment on their experiences/knowledge with these combined treatments and the risk to young males?

Best,

-Cody
 
Cody, I'm sorry your research experience was ruined! I have been on both immunosuppresants and biologics. As I'm not young or male, I can't help on your exact question, but I can say that you are monitored while on these medications, and any problems are caught quickly, which is why I am no longer on 6MP.

I hope you can find a treatment that works for you.
 

David

Co-Founder
Location
Naples, Florida
Hi Cody,

Welcome to the forum, I'm glad you found us. I'm of course sad that you needed to seek us out :(

It sounds like your GI is taking the top down approach to treatment. It's not my place to say what's right for you as I surely don't know :)

If you were going to start on the other end of the spectrum, I'd probably point you towards enteral / elemental nutrition which, IF you are able to stick with, has very high remission rates.

Anyway, there's lot of info here as I'm sure you'll find. We're here for you any time :)
 
I don't know what biologics are and I'm not a young male, but I have been on 6mp and remicade for over a year with great success. The remicade is working short term to bring my crohns into remission and the 6mp will eventally give me more stability between remicade treatments until I can ween off the remicade. Some people have dramatic side effects with the immunosupressants but I haven't experienced any side effects for some time. I'm a little scared of the increases risk of cancer.. But I haven't gotten cancer yet, and I understand that the risk is still extremely low. I believe the greatest concern with 6mp is kidney damage and infection.

I haven't heard that the risks are different for men and women?
 
Thanks for your response, David. Hearing about options that don't involve a risk of an assuredly fatal lymphoma really gives me a bit of hope about this all.

Do you know if the elemental or enteral diets are used to actually induce remission or are they used for maintaining it?

Thanks again.

-Cody
 

David

Co-Founder
Location
Naples, Florida
Do you know if the elemental or enteral diets are used to actually induce remission or are they used for maintaining it?
Both. And many people have to engage in an elimination diet as they slowly go off the EN. This way they can determine which foods they need to avoid. There's some great info in the forum I linked you to. And we're working to improve it so if you start researching EN elsewhere, please contribute any good info you find elsewhere in that forum if you have a chance :)
 
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