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Long time no post! I was diagnosed with Crohn's back in November after having severe pain. I was immediately put on Prednisone and Remicade and at first it seemed to be really helping but every time I was taking off Prednisone, I would immediately get sick again, mostly having bad abdominal cramps after eating.
A couple of weeks ago, I basically went back to square one with pains, night sweats, cold chills, and not eating. (lost over 10 pounds) My doctor told me that the best thing for me to do at this point is surgery but gave me the choice of that or trying Azathioprine. I decided on the Azathioprine but did not like the fact it takes so long to start really working.
My doctor wanted me to still meet a surgeon to at least get comfortable with him. I met with him Friday and after a long talk, surgery was scheduled for May 25th. Now I am wondering if this is a good idea or not. I think I should of told him to hold off for now and wait on the Azathioprine. I just figure that if Remicade did not work, why would some pill? I am living on steroids right now and very nervous about the surgery. I just hope I made the right choice in going ahead with this.
Anways, I am hoping to get some opinions on this decision. Was it the right decision? I could still cancel the surgery obviously but it seems it would be hard because I have already told so many people about it and took the time off from work. Thanks for taking the time to read this and look forward to your replys.

 Reply posted for bodman.

I am 21 years old also, thought that was pretty cool. I had my first resection on May 5th, I had been suffering with crohns for 6 years before my Dr. considered surgery. Think of it as a head start in your recovery process. Did you have a good support system? I know I did, they were wonderful (I was in the hsp for 15 days due to complications) I had 1 1/2 feet of small intestines, part of my colon, and my appendix removed. I love hearing about other people's stories bc we understand what its like to have a disease, healthy people just don't understand lol!

 Reply posted for bodman.

Thats great to hear!!  How is food going?  Do you have about a 2 inch incision directly under your belly button?  Thats what i have...  Makes for a pretty attractive belly in a bikini but at least i can eat and know that the bad stuff is no longer in me!!  Hope food is going well.  I am 4 weeks out of my surgery now and feel back to my self almost 100%!!

 Reply posted for kmk15.

Hey! Thanks for the good luck wish. The surgery went pretty well. I thought for sure it was going to be done the laproscopic way but he opened me up. :(. The surgery ended up taking much longer then expected as when they went in, they found the part of my intestine that was infected was so inflammed it was touching my bladder! So if I would of waited on the surgery, I would of definitely ended up with a nasty fistula. So that made me feel much better about this decision. I am now currently in the hospital and started a liquid diet today and everything is going well so far. I hope to be out of here tomorrow or the next day!

 Reply posted for kmk15.

Good luck tomorrow on your surgery !  I hope everything goes well for you (if your still planning to have it).

 Reply posted for kmk15.

Sorry i should really re-read before i post.  Im not nearly as sore though and i just read that you are having the surgery so good luck!!  It will go great and you will go back to feeling wonderful!  I am recovering really fast too (just like the other person who posted)!  It helps that we are young.

I also wanted to say i met someone in the hospital who had crohns and she got 17 years out of her surgery before she needed another or had a flare up!!!  That made me feel good thought it may help you too!!

 Reply posted for bodman.

I know what you mean about your CT scans.  I was just diagnosised in April and already had surgery.  I was just like you with the strictures being so tight.  I was almost at a total obstruction.  They took out the least they could of me as well.  I'm just happy to have it all over with.  I can tell you that i know exactly how you feel, i had to quit my job and been able to hang out with my friends since i went into the hospital on march 20th.  Crohn's seems to have a way of making our lives stop haha.  Anyways, it is exactly 2 weeks today from my surgery and i feel great!!  Yes, i go to the bathroom a lot, but other than that my muscles are nearly as sore.  I am walking around and going shopping and finally eating normal again!  Surgery is very scary, but trusting your doctor is so important and the recovery wont be that bad.  Just get some movies or books you have been wanting to see/read and if you do get the surgey walking around holding a pillow to your stomach REALLY helped me...  It seems to give you some support :)

 Reply posted for dmci.

Glad to hear the surgery went well! It is comforting to read things like that!
I went to my G.I today because I wanted to talk to him about my decision and get his opinion. He had been mentioning surgery the last couple times I had seen him, so I was prepared for him to tell me to go ahead with it. After a nice talk I definitely feel a lot more comfortable with the decision and now am just trying to relax myself as I am pretty nervous!
It really stinks that Chron's will come back and my G.I told me that it usually happens within 4 -5 years, so I hope I will get lucky and go longer but if not I am going to try and enjoy these five years I have ahead of me! I am not sure as to how much intestine they are removing but I am guessing I will know that after the surgery. Wish me luck!!

 Reply posted for bodman.

Hi!  I was diagnosed Dec/09 and started Remicade in January.  The Remicade did help some of my symptoms but I ended up in extreme pain by early April and had surgery on 4/21.  I had my terminal ileum removed (15" total) and it was a mess.  Now, I feel great.  Im still recovering from the surgery but feel so much better overall!  My GI tried everything before we went to surgery and I think that was the right decision for me.  (And, my GI as well as the surgeon and PCP are all surprised at how quickly I felt better after the surgery!)  I'm continuing with the Remicade to hopefully keep the Crohns in remission for as long as possible.  Obviously, everyones situation is different.  I spoke with the GI and surgeon and then went back to my primary care physician to discuss so that I was comfortable with the decision.  Good luck!

 Reply posted for kmk15.

Thanks a lot for the reply! I am 21 years old and I am not sure what type of surgeon my surgeon is. He was recommended to me by my doctor I have been seeing for my Crohn's. I definitely trust this surgeon but I am very stressed about going ahead with the surgery. It seems most people go years before surgery but I have been diagnosed only since November. But my surgeon was showing me my recent CT scan I had taken and was talking about how bad the effected area looks. Told me the piece of intestine that is bad is so thick by now that it is like a piece of wood when they go to remove it and said that is why Remicade is not working. The bad part of my intestine is just beyond repair at this point.
I am sick of living off of steroids and constantly getting sick. I have had to call off from work numerous times and missed out on some good times with friends, so maybe surgery is the best option so I can start to get my life back. Oh and I failed to mention in my first post that I am getting a resection as well. I am not sure how much they are removing but he told me it will be the smallest amount possible, plus they are gonna check for a fistula. I am not sure what I am more nervous about though, the surgery itself or post surgery and the recovery. Just too much on my mind right now.

 Reply posted for bodman.

Hi,  I just had a small bowel resection on May 5th.  They had to cut out 11 inches from my small intestines.  I was soo badly strictured and had a fistula causing a huge abscess inside me.  I had no choice because i was no longer able to eat from crohn's.  I now weigh 76 pounds and am 23 years old.  Before my surgery i spent 3 weeks in the hospital for them trying to figure out what was wrong with me (finally crohns was the diaganosis).  It seems our situations are different because i had no choice, but i just wanted to let you know that if you decide to get the surgery that it is not as bad as some people may say.  Yes, i am sore.  Yes, there were days of laying around.  But the pain is so different than the pain your living with right now.  I am now able to eat again and will hopefully gain back my weight!  If you have any other questions i would love to answer them.  Surgery was the best option for the situation i was having.  Do you know if your surgeon is a colon rectal specialist?  Or just a general surgeon?  I have a colon rectal specialist surgeon who basically only works with crohns and colitis patients.  He did a really good job and my incision is very small.  Hope your surgery goes well if you decide on it.  If you have any other questions please ask!!  I would love to help you out if i can!