Been a long time since I've posted here but recently I've been able to improve things significantly. DXed with UC in 1986, been on varying dose of Prednisone (10mg-60mg) along with cortenemas. Until...
Not familiar with Frankincense Oil but thanks for the suggestion. PG is really sensitive about disturbing the wound and typical treatments like debriding are a huge no-no. When my wound was open I'd...
I used NAC and Cineraria Martima afterwards to improve my night vision and they definitely helped. The only problem left is a fungal infection in both eyes due to antibiotics/immune issues. Working...
Personal history - diag'ed severe UC in 1986. Always steroid dependent. Had colectomy in April 2017 and quickly developed Peristomal Pyoderma Gangrenosum. My eye pressure has been an issue since 2001...
Six month update - while the ulcer is currently less than 13mm across it hasn't properly healed. Often the ulcer almost fully skins over and then the smooth fragile skin tears open. This has happened...
Recent ostomy recipient (4/27/17) due to Ulcerative Colitis and by July I noticed a tiny dot of irritation 2.5" from my stoma. When I returned from my eclipse roadtrip on August 22nd it had blistered...
Off-label Buproprion SR reduces TNF-Alpha which can relieve inflammation. Found a few articles about various treatments for Pyoderma G including TNF-A antibody biologics. Right now I'd be thrilled if...
Sometime in June I noticed a tiny red bump near my illeostomy stoma. Its was tiny and didn't bleed significantly so I ignored it. On August 22nd it blew open and has grown into nearly a 2" by 2"...
Was on 20mg at time of surgery but currently at 12.5mg. Once I hit 10 I'll drop in 1mg. The docs think I could go faster but I have major doubts about my adrenals. My docs had suggested surgery back...
Just a warning about UTIs and UC. I'm a male and for the last few months I had a weird morning cramp around my groin/bladder every day. In the middle of April I developed a bad UTI including pus...
Title says it all. I had a wicked UTI and air in my urine. One CT scan later and they found a diverticuli had connected with my bladder and that was game over for my colon. Had the bladder fixed and...
Thanks for chiming in platinumpixie. When I was trying to figure out the cause for the sleep position issue I wondered if it could be stomach acid but I always take a PPI before bed. Now I'm pretty...
Current symptoms are 1-3 small choppy BM/day, usually some trace blood (or more), significant mucus with mild urgency. Prescribed meds are 15mg Pred and 6x Asacol HD. Also taking 50mg DHEA. Calcium,...
The colonoscopy didn't reveal any cancer or diverticulitis but lots of inflammation and some stricturing. Started taking DMSO daily and it helped. Was having nearly normal BMs for a while but things...
Since before 1998 I remember knowing that if I slept on my right side my UC would act up and the next morning's stool would be bloody and mucusy. OTOH if I slept on my left side my gut would pass gas...
According to the doc who did the procedure he didn't see anything obviously cancerous but there's even more scar tissue. What was thought to be diverticulitis was actually a sigmoid stricture. That...
Over the past three months that I have been taking DHEA very good things have happened. Believe it or not I'm off my pain meds and feel fine. If it is cancer chances are it was there when I started...
Earlier this week I went to the ER because I was experiencing the symptoms of an intestinal blockage again. They CTed me and saw an area of inflammation - possibly cancerous - in my sigmoid colon....
Six months ago I had a scary episode where over the course of a month my bowels slowed to a crawl and stopped due to what they thought was diverticulitis in the left side of my colon. They never told...
Thanks again to Old Mike! All the studies I've seen are focused on DHEA and a single disease. I had Asthma and allergies a full decade before UC reared its ugly head. Other issues like juvenile...
Yet more interesting side effects! While I love animals I have to limit my exposure to most critters thanks to allergies. Strike that - I USED to have to limit my exposure. A week ago I visited my...
I use Garden Life 25mg DHEA http://www.amazon.com/Country-Life-DHEA-Vegetarian/dp/B001185X66 Started off with 25mg/day but just doubled it to 50mg in hopes improvements will accelerate. I think one...
Looking back at all the health problems I've had in my life I can safely say that my Ulcerative Colitis should be viewed as just another result of hormonal imbalance. I was always overweight,...
Still more improvements! I was working at the arcade last Saturday and spotted an iPhone 6 on the floor. I pounced on it and a coworker said they had just left and were probably in the parking lot. I...
Big thanks to Old Mike for the link. Very interesting stuff that seems to support my suspicion that incredible stuff falls through the cracks for disturbing reasons....
I know this all too well since I thought my fecal transplant was going to cure me but this just feels like I hit the bullseye. With the fecal transplant it was just my gut improving. With DHEA...
EDIT: Until further notice do not take DHEA. Jump down to the end of the thread for more detail. Yes - CURED. I've posted before about my attempts to cure myself including a DIY fecal transplant and...
I finally had my GI appointment Monday. From our exchange of emails it was clear he was not going to admit fault. Additionally his office sometimes took a week to fill my Pred/Asacol ignoring...
I reported this to Patient Relations and I'm pretty sure they've been sniffing around since Monday. My GI doc now claims the low Asacol dose was "maintenance". That could be believable except I'm...
A "CHROMA" colonoscopy is where they apply a blue dye to the colon tissue and then use some image processing to help highlight any tissue abnormalities. Its from a specific manufacturer and hasn't...
I have been moderating my coffee intake to less than 8oz/day except for today since I was in need of something to calm my frazzled nerves and I do not consume *any* alcohol. In a hard drinking...
Thanks kiptyn! I am going to call my insurance provider tomorrow to make sure they contest any billing for this aborted procedure. Friends and family work in the insurance industry and I am quite...
There are rare moments in one's life when time freezes and you question reality. Today it happened while I was standing in a hospital room wearing nothing but ECG pasties questioning the competence...
The new doc was willing to restart my Cortenemas but I wanted to try a 5ASA suppository instead. It seems to be just as effective as the enemas. He also wants to start me on biologics after a...
Appointment is Monday. Will report back....
The new doc wants a colonoscopy asap to check for cancer/precancer. I also have lots of pseudopolyps to make detection hard. They are going to use a new method called CHROMA but I didn't get any...
Scott Z I have tried tricyclics and gabapentin for my PHN/Trigeminal Neuralgia and the first did little to help and Gabapentin did nothing and caused me to become extremely forgetful and...
This is a long story but I'll try to keep it from dragging out. I haven't checked in here for a while. Thought I was doing OK a year ago and because of changing providers I had to switch from Asacol...
Still at 25mg of Pred but lots more energy. Busy working but I'd rather be working than unfocused and tired. Need to schedule another colonoscopy since its been over a year since my last one. Trying...
Dr McCann apparently patented his treatment. Not sure what this would mean for "end users" (pun intended) but at least it documents the treatment. http://www.google.it/patents/US5599795 I wonder if...
From Alternative Medicine Review. Lots of stuff I've never heard of before. http://www.thorne.com/altmedrev/.fulltext/8/3/247.pdf...
Just to clarify the pseudopolyp/cancer issue - the information above is essentially true #1: Pseudopolyps are NOT cancer. According to Wikipedia they have no significant potential for malignancy....
The surgery is definite but the wheels haven't started turning so this is just for my brain to chew on. I've been on Prednisone (as high as 60mg after diagnosis but usually between 40-15mg) with...
I haven't seen the surgeon to set up a timetable yet but I'm going to mention the high contrast CT scan as you suggested. Now *that* would one of my colectomy nightmares. They do pill-cam GI exams at...
I have a few issues that may delay surgery. My dad had Crohns (as did his mom) so I want the doc to be 100% sure my small intestine isn't harboring any nasty surprises. Secondly, I'm barely eating...
Found this helpful PDF on how to avoid problems (with LOTS of NSFW pics) http://woundostomycontinence.com/mike/peristomaldermatites.pdf...
Diaged with UC in 1986. Wasn't until 1995 that they suggested surgery and I resisted STRONGLY. I was going once a day with decent consistency but was steroid dependent. This year's colonoscopy showed...
Shingles pain as in post-herpetic neuralgia - not active Shingles. Had a nasty case in 2009 and multiple relapses since. Tried the usual tricyclics and gabapentin to no avail. Lived with the pain...
Thanks to everyone who chimed in. I'm still bouncing between surgery and meds. This is the closest I've ever been to surgery and I'm pretty sure it will come to pass sooner rather than later. The...
In the past month I've bounced between fighting to keep my colon and giving up. While I haven't been around here long, it seems people often change their minds. Earlier this month I discovered my DIY...