Possibly got an answer

Saw the NP at my surgeons office today that didnt really have an answer for the new symptoms. She did give me some gel to put in that open wound and it just so happened my surgeon was there so he came to see me and said that it just hit him what it probably is. He asked about my pred taper adter surgery, and i told him when my wound opened up i stopped it just three days early and he said the body can go into "adrenal crisis" and cause all the symptoms im sescribing. He said its very weird what pred can do to the body when your body doesnt catch back up. He said it usually starts 3days after you stop too early and thats exactly what happens. Said all my symptoms are classic for it. Said it often is hard to diagnose especially after major surgery. But i really hope this is it. He even said the vague unexplained severe abdominal pain is a symptom. Ill be on another 20mg pred taper that he said should fix it. Keep me in your prayers and ill keep you informed!!!

God Bless!!!

Hmmm . . . I was worried about adrenal crisis too post surgery. What was your pred taper? It took me two months to wean down from 60 when I left the hospital and I thought that was too fast . . .

Makes sense, glad you got an answer; fingers crossed that going back on pred for a bit relieves your symptoms. I too am curious how fast you tapered.

Wow, I'm sorry that happened to you, but at the same time I'm glad you finally found what will hopefully be the answer to what's been going on (I've been reading your other posts about your symptoms.) I hope you begin to feel better soon!

Also... be sure to keep the opening on you incision clean, even if it is small. I don't know what your surgeon would advise you, but mine always had me clean the opening twice a day with hydrogen peroxide, and allow soap and water to run over the area when I showerd.

My husband's experience with prednisone was horrible and each time no matter how slow the Dr thought the taper was it was not slow enough. After reading and listening to so many on the UC forum in Healing Well I insisted that the taper be very long and very slow and once he got to 20 we went to 17 1/2, 15, 12 1/2, 10 etc all the way down to 2 1/2...we were cutting those babies into miniscule sizes...lol. And the tapers were probably 2-3 weeks at each 2 1/2 gram increments and he finally tapered successfully. He was off them for 3 years at the time of his surgery. Since he was steroid dependant and it didn't help anyway that long slow taper was the only way his body allowed him to get off it with no bad effects.

As good as his local Dr was she respected the request and my info from all the people on Healing Well and their experiences and recommendations and by golly it worked that way!

All of his doctors were very receptive to listening to not only our questions but some of our suggestions when things were not working and when I would relate certain info other UC sufferers had tried or were trying etc.

I am so happy your Dr realized what in all likelihood is the culprit here and there is nothing going wrong from the surgery end of things....YAY. Getting off various meds isn't easy on the body and it lets you know it too!