Just thought I would post an update. The good news is as of Thursday he will be cured of UC. The journey has been extremely rough. He had his 2nd loading dose of remicade on 3/6 on 3/9 I came home from work early because I was worried about
him. Found him barely responsive, called 911 found out he had a staph blood infection and a blood clot in his leg. To make a very long story short, after 7 days in ICU we decided we needed to stop fighting this and have surgery to removed his colon. I am looking forward to him feeling healthy again. In one way we were very lucky, ended up in a top notch facility with great specialist. Would like to thank everyone here for sharing all your knowledge and experiences it is an invaluable source of information. Take care
Hello everyone
Been following along, reading and trying to learn as much as possible since we found out. Its been overwhelming and frustrating to say the least. Alittle background, he is 67 yrs old, in June of 2014 started to have severe stomach pain and refused to call doctor - stubborn - after a couple weeks it got so bad finally got him to er and after cat scan diagnosed with Diverticulitis did a colonoscopy said was severe and close to perforating and wanted to do surgery he put off surgery until Sept. Surgeon removed about
12 inches of Colon. Recovery seemed normal. about
Thanksgiving he noticed alittle blood, didn't say anything until Christmas then it really started to get worse, alot more blood, pain when trying to go and lots of urgency. Of course getting to see a doc during the Holiday is challenging to say the least. Talked to surgeon over phone said he was sure is was internal hemroids saw them when he did the colonoscopy, gave us some stuff to try at home. Continued to get worse got in to see Family Doc she checks him get alittle blood call Cardiologist to get him off coumadin, he is in A fib with pacemaker, called surgeon but couldn't get through. Go home its gets worse, early Jan finally get in to see surgeon examines him said yep very angry hemroids, script
for some very expensive suppositories set us on our way, couple more weeks still no improvement basically screaming when in bathroom and in there alot. Finally talked him into er. Small town er does cat scan and says really need to transfer to bigger hospital. And on Jan 21 they did a Sigmoidoscopy and according to procedure report he has Severe Colitis extending upto the Splenic flexure. There are several ulcers in the rectum & bx, she could not see the anastomosis because of severe inflammation. The mucosa beyond the splenic flexure was normal. He spent 11 days at hospital. Came home was feeling good for about
4 days and started to get bad again, been to the er twice, second trip was in a squad because bleeding was so bad, spent 5 days in hospital came home last friday. He started Remicade Thurs. He is also taking 80mg of prednisone, 1.5 grams of apriso and 100mg Imuran a day. we were doing the cort enemas but stopped in the hospital and haven't started up again. 2 days no bleeding but he sure is grumpy, thinking from the meds and feeling to crappy for so long.
If you made it this far thanks and if anyone has any tips or opinions would love to hear them. He doesn't care for the GI we ended up with and when I called the office to see if we could switch to her partner who we saw and liked when she was out of the country the office said no we have to stay with her. Not sure how easy it will be to switch to another GI especially since in the middle of the Remicade treatment. Plus he is on Medicare. We have an appointment to see her tomorrow so trying to put together a list of questions to ask. I've found that my biggest disadvantage has been not knowing what to ask. No one has been very good at telling us what we should expect or what we need to be doing. Thanks again for listening :)
Post Edited (wifeofjim) : 3/17/2015 6:35:39 PM (GMT-6)