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KIDNEY DISEASE AND CROHNS
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momore posted:
:confused: I am normally on crohn's/colitis boards. Is thre someone who can give me any encouragement. I was DX w/Crohn's in 86, had a colonoptomy in 97(ileostomy bag), and after 12 years of fairly normal life I was DX with stage IV kidney failure last month. My creatinine was @ 3.6, kidneys are shrinking, and i have 20% function. I have multiple stones + a mass on right kidney between the kidney and the surrounding sheath, that may be a blood-filled cyst or a tumor (Dr won't biopsy it at this time due to all of my other issues. I was told by Nephrologist that I was looking at dialysis starting any time now. Any advise or comments are greatly welcome. I don't how much more "good" news I can handle. :sealed: :sad:
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John-SKPT responded:
Not sure what to say. Chron's has other manifestations--eyes, skin, etc--and renal complications may or mat not e related. Amyloidosis is common in Chron's and is a factor in some renal diseases, as are the granulomas frequently seen in Chron's and certain renal conditions. But there might be no link at all. Dialysis is not simle, it is not easy. But it is a lifeline. You might want to discuss the possibility of eventual transplant with your nephrologist. But that's a ways down the road: the preparatory testing and the wait for a matching donor is probably looking a couple of years ahead. But it never hurts to start the process early.
 
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momore responded:
:smile: thanks, john.
 
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John-SKPT responded:
(sorry about the many typos above; i was a bit sleepy and did not catch my errors.)
 
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LilliStone responded:
I was diagnosed at age 15. No one in Dallas had seen anyone with Crohns and the only drug they could give me was ACTH because no other existed. I had 5 surgeries between the ages of 15 and 23. I now have stage 4 kidney disease - my potassium and phosphate levels were very high. A cousin sent me an email that has been wandering the internet about the dangers of drinking water from plastic bottles - especially dangerous if the bottles were put into the freezer. I remembered this as I was being wheeled into the operating room to have part one of a two part procedure to attach a vein to an artery in preparation for dialysis. When I got home, I threw out enough bottled water to fill a bathtub with - and I also threw out everything in the kitchen that was plastic - including all the all the containers that I used to freeze food in - I have two freezers - and I threw out all containers and food. I went to Bed, Bath and Beyond and invested in snap lock containers - went home and cooked up a lot of food and froze the containers. I did some internet research and put myself on a very low potassium and phosphorus diet. Both are now low normal. My doctor is amazed. He doesn't know anyone who has done what I have. I am still in stage 4 severe - but my doctor says that even though my creatine has not changed and my problems are similar to yours - that he sees no dialysis needed - Now of course, no one knows what is up ahead - but my doctor has good hope - I do not know if you are in any pain - I am not - In between having Crohns and kidney disease, I had surgery for breast cancer - so I can not just sympathize with you - I can empathize. I have to go to work now - If you are willing to try out what I have done for myself, I would be very happy to email you what I did and my sources. You could have the information by the end of the weekend. I believe in being proactive - it helps to lesson the fear and panic.

Sincerely - LilliStone
 
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krw64 replied to LilliStone's response:
HI, my 15 year old son is going through Crohn's diagonis process right now and they said that his creatine level is slightly elevated.
I'd like to see what you did and your sources please.


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