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Crohns/Fistula/GI/Help!
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kjsimps posted:
Hi! My husband was diagnosed with Crohns last year after a pretty severe flare-up landed him in the hospital. We were shocked by the diagnosis. My father also has Crohns but has a wonderful GI and has made great progress with treatment. My husband was referred to a GI center locally, and the Dr. that he is seeing is not being very helpful. My husband has a pretty bad anal fistula that is pretty nasty and will not clear up, he has had it for a very long time. He started to have a flare-up about a month and a half ago and he has been absolutely miserable since. He has severe pain in his intestines and constant diarrhea. He can't eat, and has lost like 25 pounds. He looks and feels terrible. He saw his GI 2 weeks ago and he told him that his only option was Remicade. My husband did a lot of research on Remicade and decided that it was not a course of action that he was willing to take because of the potential side effects and long-term effects. Because of this decision, his Dr. basically wrote him off and flat-out told him that basically, if he's not willing to do the Remicade then he isn't going to help him. He prescribed him sulfasalizine 3 times a day but it was making him so incredibly sick that he is only taking it once a day right now. He was throwing up every time he took it, couldn't eat, and felt awful all of the time. The fistula he has is in bad shape, he said it feels like poop comes out of it every time he goes to the bathroom and it hurts a lot. My Dad asked his GI about fistulas and she said that it should be surgically dealt with, but my husband's GI said that no GI would be willing to do surgery on him as a Crohns patient b/c he won't heal correctly. He refused to prescribe any form of pain medication because in his words, it "doesn't treat the disease" but my husband is in constant pain. He can't even sleep. He is exhausted and sick and miserable and I feel so bad for him. If he looses any more weight he will disappear. I don't know what to do for him at this point and frankly, I feel that the GI center here is being paid to push Remicade, as it is all over their website, their office, and it is the first thing they throw out as a treatment option. Because of my Dad's Crohns experience over the last 15 years, I know that there are many other treatment options available that are effective with less severe side effects. I'm wondering if this GI Dr. is just being dismissive as I suspect, or if the prognosis of Crohns really is this grim. He's been miserable for over a month now - he's 29 years old, this just seems ridiculous now. Advice?
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LauraLW responded:
Hi, I'm sorry your husband is so sick!

I, too, suffered with anal fistulae, so I understand the immensity of pain he must be feeling. He needs to see a different doctor. Its hard to get into a GI dr and if you call the office, he may have to wait for wks/months. I think the best option to be seen right away is to research GI docs and surgeons and see who you want. Surgeon is very very important. His GI is correct is saying that most general surgeons won't operate on someone with crohns. I ran into this myself with my first anal abcess/fistula. So once you've researched and chosen who you want, got to that hospital's emergency room and demand to either see the gi/surgeon while in the er, or an emergency consult set up within the wk. GI offices and surgeons do have times reserved for emergency cases. What area of the country do you live in?

As for medications, there are more options out there than remicade. That said, with the severity of your husband's disease and the fact that he has fistulizing crohns, which is more aggressive and harder totreat, the fact is that he will never achieve remission if he does not go on one of these serious meds. The possible side effects are serious, but rare. And he faces the certainty now of being sick and disabled the rest of his life or getting on the med and the very small possibility of one of the side effects. I hate to scare you. But fistulae do not heal on their own. He already has an established tract and I'm sure he DOES have stool moving through it. His body will continue to make more of these. I ened up with three at one time. He needs medical intervention.

Please keep us posted. I'll be praying for you!
 
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AntKing responded:
I am a 51 yr old female w/ Crohns since i was 23 DIET...played a big part when i was first diag., but i go on & off I HAVE VAGINAL /RECTAL FISTULAS i leak poop ....I refuse REMMICAID TOO....I do have a good surgeon but of course am scared of surgery you can go from bad to worse in a heartbeat/ educate univ. hosp. are the teaching hosp... known to be the best so go to your nearest BIGGEST UNIV HOSP ....I agree w/ the other reply, er & then while he is getting testing scans etc...NETWORK talk to people there, anyone, even the techs...ask if you had to have surgery here who would you want operating on you? My docs don't like it either that i am VERY opinionated, and in charge of my own health....Diet...get off all milk (Dair) , creamy, rufffage, rich foods....think of binding foods...DEMAND PAIN MEDICATION IT HELP BIND....I am on a spray pure vit D & B12....a nurse at hosp told me about it....i have an UTI now cause i let the hosp put a cathader to see if fistula was attached to bladder, i thought twice now they just shoved pooh & bact. up me....you are in my thoghts & prayers...REMEMBER you hire em, you are in charge....hosp is not prison, you can leave....be smart ask...talk, network...don't be passive....then they won't....GOOD LUCK scared too in K.C. ps no one knows how we suffer i call it the other 'C' word


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