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Crohns for 30 + years

Hello my name is Rich and had surgery (Dec 11, 2015) to remove my rectum. The wound is not healing up and wondered if anyone else has had this procedure and how they recovered. Any help at all would be appreciated. Thank you.
 
Hi Rich,
Sorry to hear that - my husband has Crohn's and he never had this procedure. Can you provide a little about your history? Have you had many complications, are on a special diet or meds?
 
Hello, I have 3 sons and 2 have been diagnosed with crohns. Before myself no one in our family tree had it. At 19 I was 19, in basic training in the Air Force when I started having the same sharp pains and I felt like I had to go to the bathroom but nothing was coming out. Then one night I had to go to the bathroom and just blood came out. I was sent to the hospital and I was diagnosed with crohns. They wanted to give me the ileostomy but I wasn't ready for that. I was discharged and my parents found a doctor that dealt with crohns and he put me on the prednisone and azulfadine. Is your son presently taking either of these? I was good for a couple of years and then started to have the cramping again on my side. I flared up again and was hospitalized for 3 months. Couldnt eat or drink for 55 days. Went from 205 lbs to 125 lbs. I decided to have the ileostomy and was pretty good for 30 years. I had one blockage a few years later that required surgery. This was do to eating too many peanuts and eating to much salad which got blocked up in the narrowing of the small intestine. As far as side affects from prednisone and azulfadine I haven't seen any side affects. I had always had discharge of mucus and blood out of my rectum until I had this most recent surgery in Dec 2015. It was 3 years ago that I started to have the feeling like I had to go to the bathroom but of course I couldn't because my colon was sewn shut 30 years ago. This became painful and because my colon was so inflamed then doctors couldn't get the scope in there to check for colon cancer. They advised a totalproctolectomy I believe they called it removing everything. As far as diet when I had my flare ups I would just stay with liquids. Soups, Popsicles, clear liquids. If he's not in a flare up have him stay away from foods that are hard to breakdown especially nuts. If he does eat anything have him really chew it up good. Sometimes the cramping is due to the food getting backed up in the narrowing of the intestine. This is what happens in crohns. My oldest son really watches what he eats and so far he has been off the meds. My middle son had a brief bout with it and it went away. Let me know if you have any more questions. I hope your son recovers soon. Take care.
 
Hi Rich and :welcome:

I had a total proctocolectomy (some of small intestine, all large intestine, rectum, anus and a very large lump of affected flesh removed) in 2000. After some problems, the surgeon decided to leave the wound open to heal from the inside. It took almost 7 months to fill in, during which time I wasn't able to sit down and spent a lot of time in bed, but I had no infection at all. The wound was washed daily with saline and dressed with Kaltostat wound dressing tape (made from seaweed) and that is what the nurses felt was the critical factor in the healing. Unfortunately, alginate (seaweed) dressings are relatively expensive.

I hope that you find something that will help your healing. :hug:
 
Hi Rich and :welcome:

I had a total proctocolectomy (some of small intestine, all large intestine, rectum, anus and a very large lump of affected flesh removed) in 2000. After some problems, the surgeon decided to leave the wound open to heal from the inside. It took almost 7 months to fill in, during which time I wasn't able to sit down and spent a lot of time in bed, but I had no infection at all. The wound was washed daily with saline and dressed with Kaltostat wound dressing tape (made from seaweed) and that is what the nurses felt was the critical factor in the healing. Unfortunately, alginate (seaweed) dressings are relatively expensive.

I hope that you find something that will help your healing. :hug:
Thank you so much for your reply. I thought I was the only one taking so long to heal. It will be 6 months for me on the 11th of June. I've tried a bunch of ointments for the wound and nothing has worked. I started Epsom salt baths and that seems to keep down the burning sensation I get at the wound. Did you have the same burning sensation? Did you have the wound on your rectum or stomach? I have a 12" scare on my stomach that healed up fine. I had a 4" wound where they took out my rectum and now that's down to two wounds that are 1/2" in length. I've been laying on my side in front of a fan to help dry it up. Did you try that? Any help would be appreciated. Thank you so much!
 
My stomach wound healed up quickly but I had a very large hole, the size of a large man's fist, where the surgeon took out flesh around rectum that had been affected by many years of Crohn's disease. They sewed up the opening of the wound at first, but it collected blood and broke open, so they decided to leave it open to heal from the inside out. My surgeon was adamant that nothing was to be used on the wound but saline solution and alginate dressing, which you can only use with an exuding wound. The alginate dressing lets the moisture/blood ooze out but, once moist, it becomes jelly-like and stops any bacteria/infection from entering, so drying it would defeat the purpose. In fact, I believe that the moisture is important in the healing process and you may be retarding this by drying the wounds out.

I wouldn't use any ointments at all. If you could get some alginate dressing (there are three or four different brands available) you (or someone else) could pack a little of it into each wound. You would need to moisten it with saline solution to remove it easily before washing with the saline and repacking with clean dressing. I would do this once a day - a "squirter" bottle is the easiest way of getting the saline solution where you want it.

I hope that this helps. Don't despair, it will heal. After my gaping hole filled in, the district nurses who came daily to wash and dress the wound told me that they had all been appalled at the size of it and thought that it would never heal. They were amazed that it did not become infected at any time during the process and put that down to the alginate dressing (which is also often used to treat ulcers).
 
My stomach wound healed up quickly but I had a very large hole, the size of a large man's fist, where the surgeon took out flesh around rectum that had been affected by many years of Crohn's disease. They sewed up the opening of the wound at first, but it collected blood and broke open, so they decided to leave it open to heal from the inside out. My surgeon was adamant that nothing was to be used on the wound but saline solution and alginate dressing, which you can only use with an exuding wound. The alginate dressing lets the moisture/blood ooze out but, once moist, it becomes jelly-like and stops any bacteria/infection from entering, so drying it would defeat the purpose. In fact, I believe that the moisture is important in the healing process and you may be retarding this by drying the wounds out.

I wouldn't use any ointments at all. If you could get some alginate dressing (there are three or four different brands available) you (or someone else) could pack a little of it into each wound. You would need to moisten it with saline solution to remove it easily before washing with the saline and repacking with clean dressing. I would do this once a day - a "squirter" bottle is the easiest way of getting the saline solution where you want it.

I hope that this helps. Don't despair, it will heal. After my gaping hole filled in, the district nurses who came daily to wash and dress the wound told me that they had all been appalled at the size of it and thought that it would never heal. They were amazed that it did not become infected at any time during the process and put that down to the alginate dressing (which is also often used to treat ulcers).
Thank you Susan for the info! Take care
 
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