Hey everyone, so I was just told I have crohns yesterday. I do not know what to think as there are literally no symptoms. I had a fistula for the past year that has really healed well and was almost completely fine but before the lift procedure I was to have, the doctor did a crohns test just in case. I had a colonoscopy and the results came back with no abnormalities and it said I was fine. However he did a genetic Prometheus test as well and that came back as "consistent with crohns". I am 17 years old and I have never had any bowel problems. Even the fistula barely drains, and I was told it was really healthy. Another doctor I went to basically told me that crohns is out of the question cause I was healing so fast and well, quickly. I really don't know anyone in my family who has ever had this disease. My father had a fistula about 10 years ago but he has a fistulectomy and hasn't had a problem since. I was told to start using humira but my parents are terrified of the possible side effects, especially since I really don't have any problems. Are there oral medications I can consider? Do you think that it's possible to base my diagnosis solely on the genetic test even though the colonoscopy came back healthy? Also I've been reading a lot and I'm terrified after heating about stomas and such.. I'm finding it hard to deal with what to do next. I don't want to be held back in life being that I'm only a teenager; I also don't have any difficulty right now. What do you suggest? How bad of an idea would it be to just go ahead with the lift procedure? Or how about just leaving my seton in the fistula I have for a while because that's really unnoticeable completely.
Genetic diagnosis but healthy?
- Thread starter Whattodo
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Whattodo:
Another opinion isn't a bad idea. It can't hurt to get as much information as you can to substantiate the genetic test.
My colonoscopy, endoscopy and biopsies all came back normal. I had two bowel resections and they didn't find crohns (or they didn't look for it) until I had the pill cam. The colonoscopy doesn't get a good look into the small bowel and so isn't enough to completely rule out crohns.
I'm afraid I don't have experience with a seton. (They removed my fistula with damaged sections of bowel in my last resection) so I'm not any help in that department.
As far as meds go it might be good to see a GI doc specializing in Crohns. Initially I took Prednisone with a lot of side effects. Then switched to entocort. I tried Humira first with no result. And am now on cimzia. Started another flare then back on entocort and doc added Imuran. Everyone is different as far as what works for them. Its taken a while for me to realize, but I think now I really need to see a specialist and so made an appt at an IBD Program docs office in July.
Hope you get answers to your other questions. I'm sure you probably feel overwhelmed. Good luck. Let me know how you are doing and what you decide. Hugs :ghug:
Another opinion isn't a bad idea. It can't hurt to get as much information as you can to substantiate the genetic test.
My colonoscopy, endoscopy and biopsies all came back normal. I had two bowel resections and they didn't find crohns (or they didn't look for it) until I had the pill cam. The colonoscopy doesn't get a good look into the small bowel and so isn't enough to completely rule out crohns.
I'm afraid I don't have experience with a seton. (They removed my fistula with damaged sections of bowel in my last resection) so I'm not any help in that department.
As far as meds go it might be good to see a GI doc specializing in Crohns. Initially I took Prednisone with a lot of side effects. Then switched to entocort. I tried Humira first with no result. And am now on cimzia. Started another flare then back on entocort and doc added Imuran. Everyone is different as far as what works for them. Its taken a while for me to realize, but I think now I really need to see a specialist and so made an appt at an IBD Program docs office in July.
Hope you get answers to your other questions. I'm sure you probably feel overwhelmed. Good luck. Let me know how you are doing and what you decide. Hugs :ghug:
theOcean
Moderator
I had my seton in for almost a year before I finally got it removed. I went on Humira and it stopped all drainage within a month. Humira isn't really that scary, though! You have to remember that most side-effects are just listed as liability. Humira generally works without side-effects or it just isn't effective. There was also a study done recently that disproved that it increased the risk of cancer, so that's not something you need to worry about anymore either. I've been on it since November without any problems!
I personally wouldn't do a lift procedure for the fistula since artificially closing it never really works, and my GI strongly advises not to do them because then your fistula might just branch elsewhere. Mine is currently just being treated with Humira and is closing on its own. (Biologics like Humira really help with that.)
Even if Crohn's isn't present, it's still possible to have the gene. It doesn't mean it will necessarily become active. Usually fistula is a sign of it, though. I have Crohn's and a fistula but I'm in remission and my colon is perfectly healthy now, too.
I personally wouldn't do a lift procedure for the fistula since artificially closing it never really works, and my GI strongly advises not to do them because then your fistula might just branch elsewhere. Mine is currently just being treated with Humira and is closing on its own. (Biologics like Humira really help with that.)
Even if Crohn's isn't present, it's still possible to have the gene. It doesn't mean it will necessarily become active. Usually fistula is a sign of it, though. I have Crohn's and a fistula but I'm in remission and my colon is perfectly healthy now, too.
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sorry but I have to disagree thoroughly and say that humira is quite scary...I won't touch the stuff and I was diagnosed with crohn's effecting my stomach, small bowel, and colon. Thats just me though. I will say the oral medications for crohn's are usually equally as scary though. I'd say potentially having crohn's but not really showing symptoms (a fistula would be a symtom though) I wouldn't take anything with potentially negative side effects. Just my opinion though, I'm not any kind of expert or medical professional, just a fellow crohny that is also quite weary of these "killer meds" they like to prescribe us. I would try to stay ahead of the curve though know that there is a potential for crohn's like taking probiotics and eating a healthy diet that agrees with your guts...
theOcean
Moderator
Because my illness was so aggressive I was already on Remicade, Imuran, prednisone and then put on Humira which personally is my miracle medication! So I'm a bit desensitized to the idea of any of them being scary, haha. I can understand wanting to steer clear of them, though.
