Contemplating Surgery

[Greg]

First off I must say this is a great forum, I wish I'd bothered to look for it earlier. I'm contemplating finally biting the bullet and getting surgery and was wondering what has been the tipping point when people decide to finally get surgery? (assuming it was their choice and not an emergency procedure).

Here's my story. I was diagnosed at 14 after a trip to the ER severe pain. After several consults and tests I final got a diagnoses of Crohn's disease. For years I was on Pentasa followed by Asacol. For a while, being a stupid teenager, I convinced myself didn't need medication and went off everything. This lasted until about halfway through college when I started having problems again and went back on Asacol. Eventually, at around 23, Asacol didn't seem to be doing working. My doctor tried 6mp which I did not tolerate well, so I went back to a Asacol with Prednisone when needed. This was usually in the summer when I would also get swelling in one of my feet or hands. This went on until I was 25 when I started losing weight dramaticly. I should weight about 160 at 5'10". I got down to 120 at my lightest. Meanwhile my doctor was running tests, sending me for consults, and dealing with my insurance company regarding pre-approval issues. She told me I would most likely need surgery, but wanted to try Remicade first.
Lucky for me Remicade worked. I got back up to a normal weight and had no flare ups. After about a year the dose stopped working and I switched to Humira instead of having my Remicade dose adjusted. Sitting in the infusion center with Chemo patients bummed me out and I liked that Remicade could be self-administered. I've been on Humira for about 2 and half years now and starting to have more minor flare ups and trouble maintaining weight. I've tried supplementing my diet with ensure, but can barely stay at 140 pounds. So I'm thinking I either need a new dose of Humira (is anyone on anything other than 40mg bi-weekly?), a new drug (I'd love to hear if anyone has switched from Humira with success), or surgery because I've built up too much scar tissue (this I would like to put off if possible because of the less than stellar student-insurance plan I am on. If anyone knows of a good surgeon in Southern Indiana let me know). I don't see my doctor for a month because I have law school finals to deal with and a trip planned. Any advice would be appreciated.
Thanks
Greg

 

[mwb3779]

I haven't had any surgeries... but my cousin who is a fellow Crohnie, has had 3 and she say to do a lot of research before making the decision to cut. That's my info for you. Sorry I wish I had more help. I hope to never need a surgery but I understand if I need to, I will.

 

[Crohn's 35]

HI Greg, welcome to the forum. I have had a similiar road on the biologics, but shorter on the Remicade, had Humira shots weekly and still not working. I was going to be put on Cimzia and if that didnt work, we were contiplating a 3rd resection, which I really didnt want... I was told about VSL#3 from my Gi, and have been on it since, an odd antiobitic to help and I have avoided surgery. My first surgery gave me almost 10 years relief, but like you I didnt take care of my self and thought Crohns didnt exist anymore....huge mistake.

Not sure if Cimzia will work for you, depends on your stage of crohns, but to gain weight and feel better quick Prednisone will do the trick but it shouldnt be for long term. I hope you feel welcome here and let us know what you decide.

 

[Peaches]

Hey Greg, and welcome. I had to have emergent surgery a few weeks after being diagnosed as I had a microperf in my colon and it needed to come OUT. That was 13 years ago and I haven't needed another surgery since. I have come close several times though - with recurrent inflammation that would just get out of hand. I have been on Remicade for 5 years, but it is not working as well as it used to, so I'm starting a Pred taper today for the first time since being on Remi. I would LOVE to think that switching to Humira would really help me, but I am a little leery to try since it hasn't worked for some people on here and once off the Remicade, I won't go back because of the higher possibility of infusion reactions after you come off and go back.

Usually when discussing surgery with my surgeon - it is always a question of can we get the inflammation back under control for you and will there be so much scar tissue and narrowing afterward that you are going to have functional trouble. Usually it is about function when they start discussing surgery with me, unless it gets emergent.

Sorry - probably not too helpful info for you! Good luck with your decision.

 

[Jennjenn]

I needed surgery. There seemed to be no other alternative for the pain. The scar tissue made the passage way too narrow in my ileum. I was so sick at that point and weak when I had my surgery that I had a few complications. That does not happen with everyone though. Not trying to deter you away from deciding to get surgery. For me it seemed like no other option because there was no reversing the scar tissue. I was on Remicade after my surgeries and then stopped it when I had an abcess at the surgery site (ileum) 5 weeks after my 3rd surgery. The reason I stopped it was I felt that I wanted my body to take time to heal with no harsh meds in me. Then I had a flare up and a week after I got out of that hospital stay I had a partial blockage. I eventually had no choice but to go back on some form of maintenance meds. I tried Humira and it was not for me. My doctor told me we can try Remicade again to see if it works and hopefully my body did not build up an antibody against it. I went back on Remicade no bad reactions. I had to recently get an increase in the dosage because it started not to work as well. Having a lot of complications still but I feel that the Remicade is saving me somewhat from more hospital stays. I still have pain where the surgery site was. Not like before the surgery but sometimes it does bring tears to my eyes.

 

[imisspopcorn]

Greg, surgery will greatly improve your quality of life, but it is not a cure. The disease can come back and go on on to attack more healthy bowel. When I had surgery, I was done. Nothing was working. I had been on every treatment that you have mentioned, and nothing was working. After three hospitalizations for obstructions, I finally had the surgery....There is a drug named Cimizia now, have you discussed this with your doc yet?? Good luck to you. And keep us posted.

 

[Pirate]

Hi Greg, this is Greg from Michigan and I'd like to welcome you to the forum. I have yet to have surgery, but the way things are going lately it may become an option. I will be starting Remicade in a month or so and we're hoping it puts me back into remission which I had enjoyed for years.
I hope things work out no matter which way you go.

Good luck

 

[katiesue1506]

Hey Greg,

I don't know the surgeon I was going to see, but I do have one of the leading Crohn's Disease specialists in Indiana. He works at the IU Med Center in Indy... name is Dr. Chiorean, I really like him a lot (I switched from Dr. Gross in Danville, IN). Let me know if you need his number, I will give it to you.

 

[olumay]

Hey Greg, i was in the same boat as you, i think i have had Crohn's for a while but i guess no one knew what was wrong so by the time they were convinced that it was Crohn's i had built up so more scare tissue that i was on a lot of medication. i went from a healthy weight of 140 at 5'8 to 109, so i decided to take the surgery. After Surgery i was not on any medication for about 8 months but now i am on Remicade and Vitamins which was better than the 24 pills i was swallowing everyday. Well Surgery is not something you should take likely but definately weigh out all the options with your doctor and family. I wish you well.

 

[Greg]

Thanks for all the quick responses everyone. It makes me feel better just knowing there are others going through the same stuff. I'm definitely going to talk to my doctor about maybe trying a new medication like Cizmia or maybe a higher dose of Humira. The good stories about surgery are heartening. A decade a of relief would be nice. In the meantime I think I'm leaning towards a course of prednisone to put on some weight and trying to put surgery off to at least the summer so I don't have to take time of school.
Katiesue, thanks for the surgeon recommendation. I'll check him out, though I'm starting to think I might end up getting my surgery (if I get one) in California so I can recover at my parents house.

 

[Mazen]

Hi Greg. I'm now in the same boat as you. But I don't have scar tissue, but a fistula that is darining into abscesses in my abdominal wall. I had to have them drained in the hospital and now am on antibiotics, and a drain sticking out of my abdomin. The GI and surgeon want to try Remicade first to see if it closes the fistula, if this doesn't work then surgery will be the only way to go....