Need some advice on surgery...

[Jamie Lynn]

Hey y'all.....I'm Jamie Lynn and I was diagnosed with Crohn's disease ten years ago when I was 16 years old. I'm orginally from Washington State and have recently moved down to Southern California. I have been through every medication possible, Pentasa, Prednisone, Remicade, 6-MP, Asacol, etc. The remicade was working but ended up becoming allergic to it and having convulsions,throat closure, and vomiting as reactions. 6-mp also worked for a little while until I found out it was hurting my liver. I have been having flair ups off and on and I feel it's getting worse. I went to see a surgeon and he said that it is usually best to do surgery (removing a piece of my intestine at the end of my small intestine and the beginning of my large intestine) when your are still relatively healthy to lower the risk of complications. I have been active all my life, I played volleyball in college, ran track and still continue to play sports now. I am scared to go through with the surgery, but really want to get rid of the pain and symptoms of Crohn's. I would love any advice about having the surgery, how big the scar will be, the pain of the surgery and recovery period, anything would help me out. I am stressed to the max right now, and am also thousands of miles away from my family, as they still all reside in Washington State. I wish everyone with this disease luck in their battle and if I can help in any way with anyone's situation just hit me up!
Thanks!

 

[Ron]

Hi. I just had my surgery a little over 6 weeks ago (May 11) and so far so good. I was daignosed a little over 25 years ago with crohn's in my ilium. I was so afraid of surgery, but after all the years of painful attacks, I knew it was time. Because I waited so long, the doctor ruled out orthoscopic surgery the day of the operation after checking all my tests again. I was ready for the operation either way, so after a 5+ hour surgery, I ended up with an 11" incision that starts about 4" down from my breast bone and extends down and slightly around the left side of my belly button and ends down between my hip bones. My doctor said surgery would have been much longer and he would have had to end up opening me up anyway to take out all the diseased areas. Ended up taking out about 1/3 of my colon on the right side (right hemicolectomy) and some small bowel. About 18" in all (colon plus small bowel). They gave me an epidural and I highly recommend it. I had it in for 5 of the 6 days I was in the hospital and it really helped. It got me through the tough part. After it was taken out, I was put on oral Norco and it took the edge off. After about a week I was able to just take Tylenol for pain. I know everyone is different, but the past 6 weeks flew by and I'm functioning again. I actually was pretty good 2 weeks ago, but learned the hard way not to overdo it, go got to catch up on he price is right while I recovered at home.
I know there is a chance to have a reoccurrence at some time, but I really wish I had this done years ago. The extreme pain and cramping during my attacks, laying on the cold bathroom floor hoping that the pain would stop are behind me for a while and I look forward to being normal again, even if it's for a short period of time.
I'm not an active person, plus I'm older than you, but the main thing is stay positive. It really helped me accept my disease and the surgery.

 

[Gue33]

I am sorry you have to be so far from your family while you go through your surgery. When I had mine they had to open me up as well. I had been living with Crohn's for 26 years and my bowel had stuck to the wall of my abdomen. My incision starts just above my belly button, curls around it and ends just above my pelvic bone. I had an epidural as well, I do recommend it as well for pain relief. The pain medications after it came out didn't dull the pain as well. I was out of the hospital after a week. The nurses warned me not to lift anything over 10 lbs and DO NOT vacuum, the twisting motion will give you a hernia. They were very adamant, all of them, so I listened. It was hard not being able to do very much after I got out, but it gets better. I was able to return to work after 6 weeks, my job is both office and field work. More office type work though. Expect 6 months before you are feeling completely healed. I am not as active as I use to be, mostly because of my work. There shouldn't be anything holding you back from being as active as you want be be, just be careful while you are healing. Here's to a speedy recovery.

 

[tiloah]

Hi Jamie Lynn. I posted a summary of my surgery experience in another thread in this forum. I tried to detail as much as possible for people looking for information. You should check it out.

I spent five days in the hospital. My first day home I had some help with things, but I probably could have managed on my own. After that I was pretty independent. With the exception of I was driven everywhere. I'm not sure if I could have driven, but you aren't supposed to drive if you're going to be taking pain medication.

The pain really wasn't bad after I got out... I ended up taking one half of a Dilaudid four times (twice at night and twice in the morning), which came out to two Dilaudid total, but I probably didn't need to. I'm off of all pain meds now. Honestly the pain I was in before surgery was so much worse. Luckily I'm not one of those who says "I wish I had done this years ago," but I have heard it from others. I do wish I could have convinced my doc to do the surgery before trying all the meds. This forum was a big influence on me wanting to have the surgery done, the quality of life seemed so much higher in the post-op population than in those trying to treat with meds. I can vouch for that myself, but I am only two weeks post-op so it's possible I haven't had enough time to develop complications. Right now I am complication free (knock on wood).

My scar right now extends two inches or less from each side of my belly button. I will get a pic of it later. It's really pretty small. I have two tiny incisions from the laparoscopic equipment on either side, but I am hoping that won't scar.

Let me know if you have any other questions or feel free to PM me if you want any info that's not in my thread. I won't tell you to have surgery, but I will tell you that if it's deemed necessary or your doc thinks you should do it, it doesn't have to be a negative thing. In any case, I hope you find the right treatment for your disease.

 

[Sunny Gal]

HI, I was diagnosed almost 40 years ago. I lived as a vegan and my eating and lifestyle kept the pain very minimal. However about 5 years ago I began having severe flare ups. Long story short I ended up having 7" of intestine removed on Feb 14th. It was the best thing ever. I too had the intestine stuck to the abdominal wall. I had to be opened up and I do have a 13" scar. Looked like a zipper until the stitches were removed. I was in the hospital for 7 days and had a pain pump. so I was pretty comfortable after the first few days. It took many weeks to feel normal. But I had to stop all exercise after surgery and I have never gotten back into it. so that has been really hard. I just cannot seem to motivate myself. But the surgery went well. And I feel better than ever. I can eat anything and it is a blessing to feel so great. contact me anytime.