Surgery or Humira ?

[amwolf2]

Hello all,

I have been waiting for awhile now to start on Humira, but my white blood count has been high AND I have a drain tube in my stomach due to a fistula/abscess.

My gastro doc thinks that if I could ever start the Humira, that it could possibly heal me, but I think the surgeon thinks we have waited long enough and I should just have surgery and get it over with.

Just wondering if anyone else can share their similar story?? I don't know what to do. I am tired of waiting and kind of want to have surgery, but they can't do it laparoscopic so being opened up scares me.

Can Humira heal me without surgery??

Thanks
Amy

 

[PsychoJane]

Hi Amy,

I'll just give you my opinion here. Keep in mind that I am not the greatest adept of the use of medication in general. I do believe they can be appropriate in specific occasions and allow to improve quality of life for many, though, even considering the risks that are involved from surgery, I think more highly of it.

As far as I am concerned, with humira, the first thing my doctor did prior to get me on that treatment was to send me to get a CT-Scan to rule out the possibility of internal abscess (along with the radiography and Tuberculosis test). My GI is very cautious when it comes to this. I don't think it is directly contraindicated as abscess are related to the disease and might not be considered like other type of infections, he just would rather avoid it. When it comes to fistula healing, they can close with medication, but they can never disappear per say. The tracts remain there and they can reopen later on(once the medication is discontinues, if you build tolerance to the treatment, if you flare again, etc.). It is not said that the tract won't remain closed but that, you can't know.

All this question regarding humira or the surgery depend a lot on the area that are affected by the disease. Is your disease mostly localized? Would they be taking out the whole part that is sick or just the fistula/abscess. Etc. I'm asking since if your disease is spread, then you will need something to get that under control no matter what. If it is very localized, then surgery should bring you chances of remission afterwards.

The two surgeries I had were open surgery. According to my surgeon, it is safer for him to proceed that way, better view, better chances to get all that needs to get out, out. Was it only to make me feel better from the fact there was no other option for me, that, I don'T know. I did not check statistics regarding this either. I can understand why you are scared. I don't know many that were not. It is an important surgery but recovery can be quite speedy. Let say it is a hard two weeks and then it gets gradually better.

I hope this helps you a bit.
Good luck with your decision!

~J~

 

[amwolf2]

Thanks Jane,

I had laparoscopic surgery 9 years ago and removed 1.5 ft of small intestine at the terminal ileum. I believe that it is the same area affected again, and possibly also a small part of the large colon.

At first I was leaning towards surgery because I did go so long in remission after the first surgery, but now with it being open surgery, I am more scared of it.

Just wish I had a crystal ball and could know/see the outcome.
thanks!!
Amy

 

[PsychoJane]

I hear you,
I had 10 years out of my first surgery.Then, roughly 2 years of battling fistulas with the Humira, 6 months of peace(regardless of the side effects) and then the medication failed progressively. Some get relief for a long time but it is not rare to see people building antibodies and the medication not being much effective after two years or so. Depends if you do build antibodies or not. I don't know if there is a way to forsee if you are prone to this or not except if it happened for another anti-tnf. I ended up having surgery again (would have been my first option but it was not a possibility from my medical team) and I've been in remission again since. 15 months so far and counting.

 

[AK47]

I was put on Humira as a last resort. If this doesn't work well then I will be referred to the surgeon to discuss surgery. Really hoping this works.

Humira doesn't work straight away, for me its taken 3 months to feel OKish, around 60% better.

Hope everything works out for you

 

[jlm]

In the last 17 years ive had 4 open resections and spent 10 years on remicade. My last resection was dec 2010 because remicade stopped working and I was too sick for humira to really do anything. After surgery it was a rough go. I developed a fistula abour a month later and spent loads of time in the hospital. I was started on humira again with a combo of flagyl and cipro and after about 7 months the fistula/abscess finally healef.

After everything ive done, trie, and been through. I would say do the surgery, give yourself a bit of a fresh start and then start humira as a maintenance drug if yo need it.

The open surgery isnt as bad as you think. Youre kept very comfortable. I only used pain killers for two days afterwards. My only advice would be to research your surgeon. Mine was great.

 

[MikeinBklyn]

I was threatened with surgery a few times but my GI doc fought the surgeons and started Humira. A year later he declared me in remission with no evidence of Crohns seen during a C scope.

Humira cleared up my perianal fistula very quickly as well.

I say try the Humira.

Best of Luck to all.

 

[MikeinBklyn]

I was threatened with surgery a few times but my GI doc fought the surgeons and started Humira. A year later he declared me in remission with no evidence of Crohns seen during a C scope.

Humira cleared up my perianal fistula very quickly as well.

I say try the Humira.

Best of Luck to all.