Choices

[JWJ]

Hi. I first posted a month or so ago. I was recently diagnosed with Crohn's.

After lot of tests, the final diagnosis is "moderately severe Crohn's in the ileum", "moderately severe anal Crohn's" and mild ulceration around the rest of the colon. Also, I've got a ileo-sigmoid fistula and a peri-anal fistula.

Sounds bad, huh?

The strange thing is that I have very few symptoms. Occasional bleeding which has lead to a pretty bad iron deficiency, soft stools (but generally only 2 movements a day), and occasional intestinal discomfort (but never pain). The peri-anal fistula is occasionally tender, but mostly I don't notice it. I have a great appetite, eat normally, and basically find that my Crohn's symptoms are just a nuisance rather than a major problem.

I've been seeing a colorectal surgeon and a gastroenterologist, and they both agree that there is no clear cut course of action. They've basically outlined three choices, each with their own advantages and disadvantages, and I have to pick one.

1) Start Remicade straight away and see if it works.
2) Have minor surgery (most likely day surgery) to clean up the anal Crohn's and then jump into Remicade.
3) Have a bowel resection, remove the diseased part of the ileum and the internal fistula, clean up the anal Crohn's, and when that has all healed (maybe 2 months), start on the Remicade.

Adding to this issue is the fact that I have been living and working overseas, but have taken leave until January, so now is a perfect time for surgery and recuperation.

I'm reluctant to commit to surgery when I have very few symptoms, but the surgeon seems to think that a surgery first approach would greatly increase the chances of Remicade keeping me in long remission. However, the GE thinks that there is a reasonable chance Remicade will work by itself, possibly healing the fistulas along the way.

How am I supposed to choose between 3 choice that seem to have equal merits and demerits?

 

[StarGirrrrl]

Personally I would choose surgery as the last resort and try the meds in the first instance.

It's about what you feel comfortable with, would you rather have the surgery to clean things up right off or wait and see with the pills?

 

[Lisa]

I too would choose surgery as a last resort....since being on the forum, I have heard a lot about surgery not being very effective, and people having problems after....

My own (short) story - dealt with fistulas for over 2 years - finally was able to go on remicade, fistulas cleared up within a couple of months!

ps - Remicade is an infusion...no pills to take.....

plus - if the remicade doesn't work, you still have the surgery to fall back on....but hopefully it will work!

 

[Dallies]

I too would choose surgery as a last resort....since being on the forum, I have heard a lot about surgery not being very effective, and people having problems after....

I like to think that Crohn's patients who have had successful surgery with no complications don't join a forum -

Of course there may be tons of of people post-surgery doing really well after many years who do join a forum and offer excellent advice and support, some people have no problems some do. If surgery is a must one day try not to worry. Try the meds first.

For our daughter medication was the first option and then surgery was the only option as she wasn't able to eat until after the operation to remove the diseased part of bowel. She is doing great now.

 

[Jennifer]

I like to think that Crohn's patients who have had successful surgery with no complications don't join a forum -

I joined this forum 10 years after my surgery and have been in remission ever since my surgery.

As for the thread though, as mentioned, some people aren't as lucky as I where they don't have complications for years. Some people flare up right away. It depends on how bad your bowels have been affected which will decide if you should be treated with medication or have surgery done. If its minor then I don't see why a doctor would choose surgery over medication. Any surgery can be life threatening and should always be used as a last resort.

 

[Dallies]

Crabby that's fantastic news it's always great to hear about long remissions after surgery on this forum. (It makes me so hopeful for Meg) Absolutely surgery should be a last resort. Good luck JWJ xxx

 

[Lisa]

Clarifying my post.....I'm talking more of the minor surgery to try to clear up the fistula(s).....taking out the diseased portion of bowel completely - well, that is more drastic, and permanent....(in my opinion) than trying medications....hence my choice of meds first.....

 

[ameslouise]

I disagree that surgery should always be looked at as a last resort. Every case is different.

But in this case, if your symptoms aren't too bad, then I would go for the meds first, cut later.

As the doctor what s/he would recommend if it was his/her daughter in your position. I always find that to be an interesting way to get a response....

Good luck -keep us posted! - Amy

 

[tpd320]

I would definitely try the meds first. I had to have surgery a month after I was diagnosed because of an abcess that would not drain. They also took out the diseased portion of my small and large intestines. My GI doc told me I could expect about 7-10 years in remission. My surgeon told me I could expect about 5 years. Both were wrong. My crohns flared up again three months after my surgery. It had even spread, effecting a larger area now. So surgery has no guarntees with crohns... Try the meds first...