Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Hi , Thanks for the early morning chuckles. There is nothing more comforting than inconclusive reports from doctors, is there? Keep us updated as your saga continues to unfold. Good luck! Ricky Video Capsule Update Hi everyoneSince I know many of your were rivited by my pill-cam experience, I thought I would give you an update. Of course, the sequel is never as good as the original so here goes... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Lee, I’ll certainly keep you, your son and your family in my thoughts and prayers. Sam -----Original Message----- From: Lee Bria Sent: Friday, April 08, 2005 11:22 AM To: Subject: Re: Video Capsule Update To all, Some of you know that we are having a really rough time here with my son. We just got home from the hospital with bad news. His colon is severely ulcerated and needs to come out. Right now we have all retreated to our separate corners to come to terms with this. My son is angry at fate and so disappointed about not being able to go back to school, my husband is frantically searching for medical information as to the complexity of his situation and just which Dr.s need to be involved and finding who is the best surgeon in our hospital for this surgery. I'm on here. Then I need to come to terms with all the details that need to get taken care of. Big details about how to deal with his belongings and medicine at school 700 miles away and little things like what to feed him for lunch and supper. This nightmare is still not over. I'm also worried about the distinct possibility that I might miss the conference depending on the timing of his surgery. Of course my son is a first priority. Thanks for all your support. Lee mother of Bill 22 UC/PSC 06/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Thanks . I thought of you right away but got scared because of her need for a liver right away. Was her PSC very involved before the surgery? Lee > > > Lee, > > You may recall that my wife had a colectomy in February. You might > want to visit www.j-pouch.org . Initially, You might want to visit all > the information and avoid the message boards. Lori had step 1 of the > three step j pouch procedure. She has had exactly zero problems > related to the removal of her colon. No real diet restrictions at > this point, no real discomfort. > > I'll direct some prayers your way. > > > Naperville, IL > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Lee, Sorry Bill's condition got so bad. Know, that we are thinking about you and sending our support. Tim L Re: Video Capsule Update Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Lee, I am at such a loss of words after reading your post with the update of Bill’s health. My heart aches for you as a mother experiencing this and it aches for Bill as a young man with such a complicated life. The human body is so complex and our lives are so unpredictable yet precious. I can only offer my prayers … LINDA (Mom of Suzanne, 15; UC, 1/04; PSC 3/04) -----Original Message----- Thanks for all your support. Lee mother of Bill 22 UC/PSC 06/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 Lee, I'm so sorry to hear the bad news about Bill. I want you to know that I am more than happy to help you out with his things at school. I don't mind making the trip and I just don't want you to have to worry about this; you have enough on your mind. Please let me know what you want me to do. Perhaps I could get together with your relatives here so that you won't even have to think about any of these insignificant details. Take care. Joan Re: Video Capsule Update To all,Some of you know that we are having a really rough time here with my son. We just got home from the hospital with bad news. His colon is severely ulcerated and needs to come out. Right now we have all retreated to our separate corners to come to terms with this.My son is angry at fate and so disappointed about not being able to go back to school, my husband is frantically searching for medical information as to the complexity of his situation and just which Dr.s need to be involved and finding who is the best surgeon in our hospital for this surgery. I'm on here. Then I need to come to terms with all the details that need to get taken care of. Big details about how to deal with his belongings and medicine at school 700 miles away and little things like what to feed him for lunch and supper. This nightmare is still not over. I'm also worried about the distinct possibility that I might miss the conference depending on the timing of his surgery. Of course my son is a first priority.Thanks for all your support.Lee mother of Bill 22 UC/PSC 06/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 Two throughts. I think I'd be inclined to be in conclusive when it came time to pay his copayment, and two, yes I have used digestive advantage. Found it helpful, much to my suprise. I get a lot of the stuff as free samples from my gastro. I find on OTC just as effective and would never have such a script filled for this reason, but hey if it is free...... Best jd, 44 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 ston City, IL krmpotich@... Video Capsule Update > > > > He called my Hep and they decided to do an MRCP (I have not had an > ERCP). So now I inconclusively have PSC and Crohn's disease - isn't > modern science great! > > Unfortunately, I never saw the pill exit my body but the test showed > the camera made it to the colon so it is probably gone. I had an X-Ray > to make sure and will have the results soon. > > He also suggested I try a product called Digestive Advantage IBD which > contains that yogurt culture we talked about earlier as a way to > control some of the symptoms like bloating and diarrhea. Anyone else > taking this? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 Joan, thank you so very very much. I am not doing anything until after we see the surgeon on Tuesday. That will give us a better sense of what the timing is for this. In the meantime at least his pneumonia is resolving. He is feeling better with less coughing and no fever. Lee > Lee, > I'm so sorry to hear the bad news about Bill. I want you to know that > I am more than happy to help you out with his things at school. I > don't mind making the trip and I just don't want you to have to worry > about this; you have enough on your mind. Please let me know what you > want me to do. Perhaps I could get together with your relatives here > so that you won't even have to think about any of these insignificant > details. Take care. > Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 The PSC was advancing at a fast rate prior to the surgery. Lori went from diagnosis in October '03, confirmed in Hanuary '04, to obvious signs of jaundice in July and ascites in December. All pointed to need for transplant within a year. Actually, the first time we met with the transplant surgeon he told us Lori would need a transplant within 12 months. It all seems scary, it moves fast, and it's hard to be prepared. But right now, we feel really good about what has happened and are very optimistic about the future. Naperville, IL Quote Link to comment Share on other sites More sharing options...
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