Terminal illium resection survey

My cousin will have a TI resection of about 7 inches including valve. She is currently in the hospital with a drain and taking antibiotics to combat a large internal abscess in her lower pelvic area probably  caused by a fistula.  To help her get a better grasp on what to expect after the resection , I have the following questions.  I am looking for only after first resection. 

1) how much of terminal illium was removed?

2)Was your crohns the fistulizing type or the regular inflammation type.

3) What were your symptoms that led to the resection?

4)Did you ever have a internal abscess or fistula prior to resection?

5)After the surgery,  how long were you sympton free before CD returned and did it return to the same site or a different site?

6)Were you taking any maintenace drugs after surgery to help stay in remission.

7) How long did it take for normal BMs to return, if they ever did?

8) was your surgery open or lathroscopic?

9) did you have a lot of pain and how long before you felt good again 

Post Edited (NY-Sooner) : 6/28/2012 5:33:34 PM (GMT-6)

Warning---my care may be outdated as I had my resection in 1990---but wanted to give you any help I could.

1) how much of terminal illium was removed? - 18" 

2)Was your crohns the fistulizing type or the regular inflammation type. inflammation at time of resection--fistulas did not show up until 13years later 

3) What were your symptoms that led to the resection? - I ruptured and was going septic---yup ignored the cramping and pain for days (and in reality years before that) 

4)Did you ever have a internal abscess or fistula prior to resection? Nope

5)After the surgery,  how long were you sympton free before CD returned and did it return to the same site or a different site?  I can't say I was symptom free and this really depends on each person so one answer doesn't seem to fit.  I have been lucky and only had a few bouts of prednisone in the 22 years.  But...I still have extra intestinal issues that are annoying to sometimes painful.  My scopes show little to no intestinal issues though. 

6)Were you taking any maintenace drugs after surgery to help stay in remission.  I have been on a maintenace med since pretty much right after my surgery. 

7) How long did it take for normal BMs to return, if they ever did?  I later had my gallbladder removed so my BMs are a mess of liquid and acid....thank goodness for my finding a med that fixes it for me with little issues. 

8) was your surgery open or lathroscopic?  Mine was open because they thought I had a ruptured appy only to find a mess of twisted ileum.....I was close to septic issues so they really went around inside and it was so long ago I am not sure if lap was even an option if I wasn't in emergent care.

9) did you have a lot of pain and how long before you felt good again Pain----considering I stayed home for 3 days with ruptured intestines before going to the ER, I may not be a good barometer for pain.  I generally am pain free in my guts with some cramping and occasional big ouch.  My pain is mostly due to tags and the extra-intestinal issues.  I am very lucky to have mostly a "normal" life.<!-- Edit -->

I've had three bowel resections: 1989, 1998, 2005.

1) how much of terminal illium was removed?

ANS: All of it.

2)Was your crohns the fistulizing type or the regular inflammation type.

ANS: In the first operation (1989), the surgeon found substantial internal fistulas, which was causing me continuous low-grade fever. In the subsequent two bowel resections, there were no fistulas present. Lots of scar tissue in all three cases, caused by inflammation, which was what necessitated the surgery.

3) What were your symptoms that led to the resection?

ANS: Obstruction. Usually occurring once or twice weekly, with extreme pain, vomiting, inability to eat (due to fear of causing another obstruction), weight loss. Sometimes I was able to get through these episodes at home by self-treating with Buscopan injections (for pain), sometimes I had to go to the ER for morphine and IV fluid treatment. A nightmare.

4)Did you ever have a internal abscess or fistula prior to resection?

ANS: See answer to No. 2 above.

5)After the surgery, how long were you symptom free before CD returned and did it return to the same site or a different site?

ANS: After recovering from the surgery (about two months the first two times, four months the last time) I was basically symptom-free for several years.

6)Were you taking any maintenace drugs after surgery to help stay in remission.

ANS: Yes, but mostly light stuff like Mesalamine, and I don't think it was a major help. After my last surgery, I decided to do something different and went with a Chinese herbal medicine called "lingzhi." It has been very successful. I made a post about it, but outside of a wave of initial enthusiasm, nobody else here seems to have followed through:

www.healingwell.com/community/default.aspx?f=17&m=1385214

I did briefly try steroids (predinisone). It was a bad experience with severe reactions (ie glaucoma - I nearly went blind). I wouldn't touch steroids now, and can't recommend them to anybody.

7) How long did it take for normal BMs to return, if they ever did?

ANS: about 3 months on average. But I still get occasional diarrhea. It's not too severe and I can control it with Imodium and bismuтh.

8) was your surgery open or lathroscopic?

ANS: open, all three times.

9) did you have a lot of pain and how long before you felt good again

ANS: open surgery is painful for the first few days, but generous supplies of morphine made it tolerable. I was off the morphine by day 5, but even by the second day I was reducing the dose. It's good to use one of those devices that lets the patient control the dose. If not, lobby your doctor for a slow-drip morphine rather than a pain shot every four hours or so.

You didn't ask this question, but I'll answer it anyway. Sit up in bed, move around, try to get out of bed and walk as soon as possible. Lying in bed for days right after surgery delays the recovery. The sooner you walk, the sooner your intestines start functioning again, and that reduces the chance of adhesions forming.

Post Edited (ozonehole) : 7/1/2012 10:18:09 PM (GMT-6)