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GVHD of the Gut
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I am Abby, I was diagnosed with AML in January of 2011 and went through induction chemo, Then, I had a Stem Cell Transplant on March 30, 2011. It was a related donor. Since the transplant I have had many problems. I had a hard time with the transplant protocol and then mucositis and ulcers after the transplant. I was released right before Easter, but then had to return to the hospital for the first week of May. I was diagnosed with GVHD of the gut. I had GVHD in my stomach and my intestines. They started me on steroids (prednisone and beclamethasone). They also put me on dilaudin for pain. I was in incredible pain, could not eat anything, was vomiting all the time. They got most of that under control but it was tough, especially regulating the pain meds so that I wasn't in constant pain. Now we are months down the road and I am still in constant pain. They have weaned down the prednisone, which seems to be doing nothing. The pain is the same with higher and lower doses or steroids. I have this intense, gastric sharp ache that starts by my mid chest bone and goes all the way to the bottom of my intestines. It is not even controlled by a fentanol patch and taking dialaudin all day long. It hurts if I eat or don't eat. Has anyone else dealt with GVHD of the gut and had similar things happen to them? Does anyone have any ideas to share, I hate relying on pain meds that aren't really working?
I posted this on the AML site, but didn't get much response, thought I might get more with BMT because we deal with GVHD more. Posted on 07/16/11, 08:14 pm |
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Hi Abby,
I was diagnosed with AML in 2008. I was in remission for a year and it came back. My BMT was March 2010. After tapering off prednisone I got GVHD. They put me back on prednesone. My body went completely bald. My skin dried out an made me look like I had an awesome tan. My eyes felt like I had tobacco covered sand in them. My gums so sore I could hardly brush. I had a lung infection. I couldn't swallow right. I got hiccups every time I ate My nose ran solid for over a year. I got diabetes. I went deaf in one ear. I can't sleep without medication... Sure I've missed somethings... Oh, I lost 85 pounds and display psychotic behavior sometimes and my feet are swollen. Horrific leg and hand cramps and strong body tremors. I've been going through this a very long time. Finally I decided to taper the prednisone, fk506, tacrolamus etc, etc, etc. Myself. It's been a month and I hvent told my doctor. My diabetes is gone! My nose stopped running! The tremors are gone, my eyes don't hurt. Everything is returning to normal. I love my doctor, and verified through several hospitals he's a miracle worker. I just think they are afraid to alter meds. Look at all the lawyers on tv asking you to call them if you've taken...all the meds that just saved your life. I don't recommend taking things into your own hands. I'm just saying they aren't all gods. If you feel this way it could be time to consult a new mechanic. I've lived in hospitals a combined total of 8 months. University of WA, Swedish First Hill, Swedish Ballard, Providanvce, Coupeville General and Skagit Valley. I know my stuff! I can confidently say hands down SCCA is the best. Saudi Princes don't come here for just the food. They can afford the best and they go to SCCA. Anyway, I believe your answer is a second opinion by a top professional. 
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The doctors have been weaning me off prednisone, unfortunately when we stopped completely, my adrenal gland did not kick in and I slept almost 24 hours straight for 3 days and they had to put me back on prednisone before I went into an adrenal coma. So we are weaning still and weaning slower. I am also being weaned off the tacrolimus and some of my other medications have changed. As they change the medications it is more and more apparent that there is something wrong with my stomach (could be ulcers or irritation) and my gull bladder. So we are running yet more tests and getting some advice from GI people. This is a ridiculous disease in which the cure is often worse than the disease itself. Thanks for all your advice. I understand and have had most of your symptoms, although I have another weird one to add to your list. I produce a lot of ear wax now when i sleep, like so much i can't hear in the morning. weird right. it just never stops.
Abby
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