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My father's endless battle with ulcerative colitis

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Ulcerative Colitis
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Posted 10/3/2015 3:34 PM (GMT 0)
Hello all
I am hoping for some input or thoughts on the below.

My father has been suffering from UC for almost 5 years now since the diagnosis. Expensive injection medicine did not help and it got to a point when lots of loose bloody stools were being experienced. A colectomy surgery was finally performed and he was doing well after an agnonizing recovery. Soon after he was back in the hospital with pain near the stoma. Doctor says he had a kink and it had to be fixed. After that surgery he still did not feel better so the doctor decided to switch the stoma to the other side of the stomach. Still, my father feels much discomfort and pain. Now the doctor says he might have another kink. He is not allowed to eat anything and is taking TPN as his only form of diet. It seems like an endless battle. Any thoughts or suggestions would be appreciated
Posted 10/3/2015 4:11 PM (GMT 0)
Do you know what the doctor meant that he might have another kink?
Posted 10/3/2015 5:30 PM (GMT 0)
Could be obstruction caused by not eating right
Posted 10/3/2015 7:05 PM (GMT 0)
Was the surgeon a colorectal surgeon or a general surgeon? I think in this case, it sounds like he needs to see someone else, possibly someone very specialized. I had the same surgery and I was up and about within a week. It was a very difficult recovery but the majority of the pain and problems were faced the first few days in the hospital, after that, i've been improving a little each day. After my step 1 (collectomy), I had an end ileo that was really easy to work with too, it was great!! Do research on surgeons, find the best one, ask for referrals, check out our ostomy forum here on HW and get him an appointment. When was his surgery?

I never heard of an obstruction from not eating - and really, I never experienced any type of "wrong" eating wiht my ileo, I ate everything, tacos, spicy, fish, cheeseburgers, popcorn...
Posted 10/3/2015 8:38 PM (GMT 0)
I think what he means by kink is adhesions.
Just touching the small intestine can cause adhesions.
Surgery to remove adhesions can create new adhesions.
They used to use seprafilm to help prevent adhesions, I wonder if the surgeon used that.

My son had early adhesions after colectomy leading to an ileus,this is just a few days after surgery.
Anyway it was bad, what got him on the road to recovery, believe it or not was the surgeon had
my son get down on his knees, the surgeon grabbed his hips and shook side to side pretty hard, a few
times, this must have broken the early adhesions, recovery followed pretty quick after that.
His surgeon was an old timer, had done thousands of j-pouches and had seen everything.

Of course in your fathers case he probably has older adhesions, which would not break by shaking.
Old Mike
Here is something on adhesions.
http://www.webmd.com/a-to-z-guides/adhesion-general-post-surgery?print=true

Posted 10/4/2015 4:17 AM (GMT 0)
thanks all for the support and responses
to give you some background information, my father is in his early 70s could this be related to his old age? He has lost weight dramatically and can only function on morphine pain medication.

will keep this thread posted with updates to help others in the same situation
Posted 10/4/2015 10:22 PM (GMT 0)
Should we see a different Doctor? Any thoughts would be appreciated
Posted 10/4/2015 11:12 PM (GMT 0)
I would get referrals and research online and find the best colorectal surgeon in your area, or in the nearest big city, and get an appointment there. It's always good to have a non-biased person review records and give an opinion on what is going on. 70 isn't a kid but we have had members in their late 60s and 70s who have had surgery for UC and come out with great results. Ileostomy is a tough procedure to get through but it really should give him his life back, meaning, no more worrying about what and when to eat, where the toilet is, no more urgency, cramps, bleeding, pain...
Posted 10/5/2015 3:13 PM (GMT 0)
Thanks for the response. Agreed that Ileostomy should give him his life back but it has been downhill ever since. The next step according to the doctor is to settle the duodenum and then the obstruction symptoms.
Posted 10/5/2015 9:36 PM (GMT 0)
You should ask some questions on the ostomy board here on HW www.healingwell.com/community/default.aspx?f=33. People there are way more knowledgeable about surgery/ostomies compared to here on the UC board (we have a small handful here but most moved over there). Most people here are fighting UC, many are doing well with medicine and don't need surgery and hopefully never will :)

You can also ask for referrals, maybe someone had a great surgeon in your area.

You can also try looking for info here: /www.uoaa.org/forum/viewforum.php?f=2

You definitely need options. He is 70, it would be nice if he were enjoying a happy, healthy retirement.
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