Hi..new to the forum. My story...Advice?

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Angie10

Joined
Dec 9, 2012
Messages
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I have had crohns for 10 years now. Very uneventful up until about 3 months ago! Found out I had a fistula between my bladder and small intestines! Started Humira was doing well... went to the dermatoligist. Had a mole removed. Came back inconclusive for Melanoma! Now my GI doc wants me to stop the Humira and have surgery all because they can not tell me what is going on with my leg. Cancer or not. I have strange cells and they don't know what they are. the Melanoma thing doesn't freak me out as much as having surgery! Just don't know what to expect! Scared. Do most surgeries end up with stomas? If my second test on my mole comes back negative for melanoma, should I still do the surgery or try another drug to treat my Crohns?
 
Hello and welcome to the forum.

Are the docs suggesting surgery purely down to the strange cells and they don't want to try another med or is there evidence that the Humira is also not keeping the crohn's under control? Have they gone into detail of the surgery- is it that you have a narrowing that needs to be removed or are they wanting to take out bowel that still has active disease? Is the fistula still present and this is what the op would be for? Surgery does not always result in a stoma, I had a resection last year and had 40-50cm removed and this was done via a key hole procedure and no stoma at the end of it, apart from some sickness due to the anaesthetic it went really well and I was back to work 6 weeks later.

AB
xx
 
Hello and welcome. I am sorry that you are dealing with so much right now, especially after being in remission for so long. I agree with AngryBird you should find out more about why the dr is wanting to go straight to surgery and what type of surgery is he recommending. I hope things go well with you and please keep us updated.

I would also like to ask how was the fistula discovered? I believe I have one and they can not find it. I have not had surgery but I have had a couple of benign tumors since starting Remicade which has similar increase risk for cancer as Humira and my dr has not mentioned wanting to take me off the med because if them.
 
They are taking me off the Humira only because of the unknown thing on my leg. They discovered the fistula because I was runnin a temp and had a bladder infection that wasn't clearing up. So they did a CT scan and found it. Followed by a small bowel follow through to confirm it. I was perfectly fine b4 the fistula started to bother me. The surgery is to remove the 20cm of crohns I have. He never said anything about just going in a fixing the fistula. I do have narrowing..not had any blockages. I truely feel fine. Not having any issues. And I don't feel any different after I started the Humira then I did b4. I have only been on the Humira for 4 momths. I really feel like the surgery should be to make u feel better. But if I am not haveing any issues right now, why not just stay on my imuran and see how it goes. And if the fistula does flair up...deal with the flair up?
 
If the narrowing is down to scar tissue this could explain the op as no meds can fix scarring and eventually this would lead to bigger problems. My op last year was to remove a stricture and initally I started off feeling fine with just a few tummyaches, leading up to the op things got worse and worse until I was in agony and had to havw liquie shakes because having food was intolerable. Do you know if a referral has gone to a surgeon yet to discuss this in more detail?
 
Don't know if its scaring down. Haven't had a colonoscapy in years. Never said anything with the small bowel follow through. Sounds like scar tissue is not the issue. More the fistula. Can they just go in and fix the fistula? The refferal did go in to surgery, but I think I will be talking with my doc more. Not convinced surgery is the only option. Why go and start cuttin and sewin if u don't have to :)
 
For what it is worth, I just had resection surgery seven weeks ago and for me it was relatively easy. I have had Crohns for over 17 years with no medicine and minimal symptoms as far as I was concerned, for 15 years. Then, about six months ago I started having all sorts of problems including erethymia nodosum, anal fissure and fistulas and abdominal pain. I realize that it is still very early in the process but I am feeling really good now...I was back in the gym walking with friends after three weeks and back to my regular routine in about four weeks. Surgery is scarey, but IF it is the best decsion for you please know that can make a very positive difference in your life.

Good luck.
Lisa
 
I think it is worth finding out from the docs why they feel surgery is the next step and whether you have scarring or if the problem is down to inflammation.
 
Thanks for your posts everyone! Just met with the doc today. He wants me to have the surgery Jan 7th. He is afraid the fistula will rupture and I would be in lots of danger. He took me off both imuran and humira because of a rare growth that ormed on my leg. They dont know if the imuran might have contributed to it. And the humira because its a furuther immuno suppressive drug. They want my immune system back to help fight what ever appeared on my leg. Guess surgery is the plan. Hopeing all goes well! And I can get this behind me :)
 
I am sorry that you are having troubles with the fistula and the growth on your skin. I have not heard of a fistula rupturing, but I am hardly and expert in that area. But, if this is a risk, it does make sense to have a planned surgery rather than an emergency resection. As I said earlier, for me the surgery was not that bad, and I recovered fairly quickly. I hope the same is true for you.
 
If they are that worried about the fistula then surgery is the best course of action, have they confirmed what the surgery would entail, is it a resection? Have they said anything about meds going forward beings they have taken you off the other two?
 
Yes, it is a resection surgery. He is worried the fistula could rupture and that is the main concern. My crohns is generally pretty quiet. So if it wasn't for the fistula, surgery wouldn't be so much the focus. They will be taking me off the humira and imuran permently. And thats because the thing on my leg is so rare. They can't tell me what it is, or how it got there. They want my immune system working well to fight what could be there. One interesting thing my GI doc told me was: when they cut melanoma off of the skin they don't treat it with any drugs because they rely on the immune system to fight it. If the cancer did spread to the lymth nodes then they treat it with kemo or radiation. And if I stay on the imuran or humira, I don't have a fighting chance. So surgery Jan 7th is the plan.... scared. Hopefully all goes well. Everybody tells me I'm a fighter and will do just fine. Easy for them to say....its not there surgery ;)
 
Got a call from the dermatology office today. The second portion of the tissue they removed was completely negative for Melanoma!!! Yeah..... now I can breath! Now to focus on surgery and getting better :)
 
Best of wishes and prayers Angie. Sounds as tho u r a fighter and will do well. If you approach it with a positive attitude, healing time could me minimized. Welcome aboard!! Great to have you in the community. I will get some links for you on questions for surgery and what to take for women. Stay strong!!! Muah. - hugs-
 

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