post op proctocolectomy with ileostomy

I had a proctocolectomy with ileostomy placed on Oct 13 due to crohns proctitis. I was in hospital for 15 days after due to UTI and high white blood cell counts, plus incision infection. I am now home and feeling very very weak. I know that my HGB was in the 7s post op. My question is what is normal as far as pain. I am having a few different areas of pain that concern me. The incisional pain is much improved while the pain I feel is very uncomfortable is deep in my pelvis almost as if its in front of my tailbone inside my abdomen. The other pain I have is my right upper rib cage area, hurts badly with deep breaths, etc. otherwise no fever, no cough no chills. I also am wondering what is normal for my anus, I know that the surgeon would be closing it from the inside, I now have multiple skin folds that are on the outside almost like hemmorroids??? Can anyone help

I'd say you describe the pain I had from the same surgery. I felt like I still had to have a bowel movement sometimes too. Still happens 11 weeks post now.

I had that rib cage pain and one nurse had me do breathing deep exercises a few times a day, until I didn't hurt to breath any more. It helped a lot.

I took sitz baths twice a day for the first 6 weeks and now once a day. I had those skin folds and Dr. said it was from the swelling. I still have some swelling down there so I will see what Dr. plans to do if anything. Don't know if you can get hemmorroids down there after that surgery.

Hope you feel better soon.

---

This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying

You did just have MAJOR surgery, and all your insides have to find their "new" home...so things will feel weird for a while...I think my discomfort finally let up around month 4...so be patient. Don't skimp on pain meds, they do help your body heal, you should be able to cut back as you find yourself getting stronger. Keep food by your side so you can nibble all day...peanut butter crackers, cookies, pudding are good and alway remember protein helps the healing process.

Did they sew up your bottom or going to sew it up? Mine was sewn shut and I do not have any skin folds, so I am not sure there. Sitz baths are the way to go with healing there:)

Do you still have your staples in? Incision pain usually subsides once they are out and might bother you on occasion until completely healed.

Make sure you call your doc immediately if you start a fever/cough or anything that is concerning. Complications are unfortunately something that can happen with major surgery....but I am glad that you are home recovering, there is no place like home to get better!!

Reading through here, I fell like one of the lucky few. I just had the complete procto-colectomy with ileostomy on 10/16/09. I just had the staples in my backside removed last Thursday. I also have some folds and lumpiness back there, they seem to be shrinking every so slowly. Being in the hospital was rough because I have panic attacks, and they wouldn't give me anything for it. At one point my heart rate shot up to 180 while I was just laying there! (I'm only 34 btw). That's when the ileostomy started functioning according to them, but I think it was becuase I was dreaming about chasing someone with a cigarette. I used to smoke a pack a day, but quit the day I went in for surgery and haven't had one since. Taking several 10 minute walks a day has helped stretch out where the incisions feel tight. If I stay in one position too long, the incision in my stomach tightens back up and I need to walk around to make it flexible again. The pain your pelvis and tailbone is something experience as well, and taking the staples out actually made it a bit worse. My doctor said to soak in a warm bacth to ease that a bit and that it should go away after a bit. Hang in there!

Frank R.

---

10 years of Indeterminate Colitis, and total procto-colectomy with ileostomy on 10/16/09! SO far so good!

thanks everyone for the responses. Makes me feel alot better to talk to people that have actually been through the same thing! The pelvic pain is strange and I do think its just my body getting used to the movement of the parts and the changes inside. Incisional pain is not too bad although I have two areas of infection that are open and have to pack them twice a day. My rectum was sewn from the inside and I am going to start sitz baths today Thanks

---

JenG