Humira and treatment for bowel to bladder fistula

[Tn2288]

Hello I am new to this forum. I really just have a question. The question is has anybody had experience using Humira to treat bowel to bladder fistulas? I was diagnosed with this fistula about two and a half months ago. I also have 35 centimeters active Crohn's disease. The surgeon wants to do surgery but my question is is this something that can be treated relatively successfully with you Humira? I have been on Remicade for 3 years and built up antibodies to the drug so this is why they want to switch if I choose to do it.I don't know how much information I need to put on here but I'm 43 years old and have had Crohn's since I was 13 having a major surgery at 17 removing approximately 3 feet of intestine. Have been on and off prednisone since and like I said started Remicade 3 years ago.any thoughts would be great i just want to see what people's thoughts are of Humira and its success rate. Cheers and blessings

 

[Grumbletum]

Hi there and a very warm welcome to the forum. Sorry to hear that you are having issues with a fistula :-( I had a bowel to bladder fistula too and they tried to treat it with Azathioprine and Infliximab (Remicade). I did start to feel a lot better on the Remicade, but because they thought I had gone in to remission, they stopped in after three infusions. I started getting bladder issues again a few months later and they then recommended that I have a resection.
From what I have read and 'heard' here on the forum, Remicade has more of a track record of being used to try to heal fistulae but I believe some members are on Humira to treat them, particularly perianal ones.
I will be honest with you, my good friend Dusty warned me to be prepared for surgery as these intestinal fistulae rarely heal with meds and that proved to be the case for me.
I have been in remission 2.5 years since the op and it was the surgery that gave me the first real relief from my first flare up.
Do you have a GI consultant as well as the surgeon?

 

[Tn2288]

hi thank you for the reply. Yes I have a GI specialist and surgeon. It's kind of a long story.long story short I went to work in Bolivia and somehow on the way back picked up something. My Crohn's was active so they increased my Remicade and put me on prednisone. Instead of getting better I got much sicker and after months not feeling good finally they sent me to an infectious disease doctor. He did blood work and upon results it turned out that I had the Epstein Barr virus. Which does not go well with Remicade or prednisone. So they cut me cold turkey on both medications the Remicade first and then I had to come from 50 milligrams of prednisone to nothing in 9 weeks. That really hurt. It caused my Crohn's to go crazy and this is what caused that fistula to develop . My concern is because the original intention of surgery was the active disease because there was risk for lymphoma because of the epstein-barr virus and me not having an immune system as well as the medications I was on. So now that my Epstein Barr levels are lower there's potential to go back on medication a new one Humira. They want to do two receptions if I do surgery obviously the terminal ileum and the spot in my colon where this fistula is. There are many potential side effects of the surgery obviously one being I will have a colostomy potentially permanent but temporary to start and with the Colin /fistula the concern is how deep they will have to cut possibly cutting vital nerves for urination among other things. My thought is his if medication will work is that better before surgery questionthanks very much Tom.

 

[Grumbletum]

I am trying to think, Tom, if there is anyone else on the forum who's had this type of fistula and had it heal with meds, but can't think of anyone.
My fistula was in the small bowel. They were going to just remove that section and a small part of my bladder were the fistula was. But when they operated they discovered that my TI was inflamed and damaged so I lost my IC valve and cecum too. This was done laparascopically and I didn't need an ileostomy.
Have they definitely said you will need the colostomy? Is this because of the colon involvement?

 

[Tn2288]

Actually I spoke to the surgeon this morning and the specialist. They both feel the best bet is surgery. I will have a temporary colostomy but it could be permanent depending onhow iI heal. I willhave 2 ssections remove. So jJanuary 16th is the dat. Lol. My ffistula apparently started in the small bowel went through it then the large and into bladder surgeon said. I am praying that when they getin tthere things look much better and maybe no temporary colostomy as I can't keep being held up on surgery etc. Life has to continue. It isjjust very scary for me. Been awhile since I was under the knife. I was 17 when I had my first Crohn's disease surgury.
I appreciate your support and encouragement. Blessings to you and Merry Christmas

 

[DJW]

I've been treated in Hamilton for many years (I was diagnosed at McMaster). You are in very good hands as I'm sure you know. Hope all goes well.

 

[Grumbletum]

Merry Christmas, Tom, and I hope the surgery sees you having a happier and healthier 2015 x

 

[george john]

Best of everything to you Tom hope you are well now.