The only thing unique about my case of UC has been the odd remissions that have come and gone. I didn’t get into them much because my story is already a novel. But I’ve had several complete remissions that very brief. Some as a result of acupuncture and others as a result of prescriptions.
Hello, I’m 29 years old and was diagnosed with UC in Jan of 2008. Starting in Jan of 2007 I started seeing quite a bit of blood in the bowl each morning. By the evening there was almost no sign of blood except for a bit on the toilet paper. (I would normally go 2 times a day then). I did not have diarrhea and I was completely pain free. This went on until Feb when I decided to see a GI. He immediately thought I had internal roids but wanted to be sure so he scheduled a Sigmoidoscopy for March. He also gave me a weeks supply of Hydrocortizone suppositories. That night I popped in a suppository and the next morning I had zero blood during my first bowel movement. After my weeks’ supply was up I started seeing a tiny amount of blood streaked on my stool but nothing major.
I had the scope done in March and every thing looked 100% normal. He did a biopsy which was also normal. His diagnosis was internal roids and his prescription was fiber in the diet! Long story short I kept seeing small amounts of blood throughout 2007 and I kept using the Hydrocoritzone suppositories which seemed to be weakening in their effectiveness. By the summer I started seeing globs of mucus in my stool and by the end of summer I couldn’t fart without huge globs of mucus coming out. The mucus was pure white most of the time. I kept on calling the GI doc because I was sure something was wrong. He dismissed all of my calls and kept telling me to eat more fiber and that the mucus was most likely IBS related. By November of 2007 the mucus and blood were real bad. One morning in November I woke up around 3am with an odd sort of urgency/pain in my rectum. I bolted to the bathroom and passed a normal stool with blood and mucus…..but the pain was intense as it passed out. I c alled the GI doc the next morning and he scheduled a full colonoscopy for Jan of 2008. Until that scope my symptoms were resolving and coming back in an odd pattern.
I had the scope in Jan and to the surprise of my GI doc I had UC (Left Sided). He prescribed Asacol and sent me home. I had never heard of UC and was devastated when I got home and researched it. The morning after the scope I started noticing an odd ache in my joints that was VERY fleeting. Like someone hit my knee with a tuning fork….than the opposite knee would do the same. I also developed a very odd symptom of passing clear water right before a stool every morning. At first I thought it was left over from the prep work for the colonoscopy. But it continued for months. As did the blood/mucus. Finally in June of 2008 I told the GI doc that I didn’t feel the Asacol was doing anything. He prescribed me Lialda and Rowasa enemas over the phone. I picked them up and that evening tried to put one in. I held it in for no more then 2 minutes and thought “Well that’s not gonna work”. The next morning I go to the bathroom and have ZERO symptoms. No blood, no mucus and no pain. My s tools up to this time still looked normal in terms of consistency so that was still fine.
I would use the Rowasa on and off all summer and fall with similar results. I also began taking 8 pills of VSL#3 at this time along with a product called TurmericForce by New Chapter. Then in Jan of 2009 I had a follow up appt with the GI doc and told him I didn’t feel the LIalda was doing anything. So he said I could stop taking it and just use the Rowasa as needed. He also prescibed me Canasa suppositories that I could use during the day (I only used Rowasa at night). It wasn’t until March when I decided to use the Canasa because I ran out of Rowasa (which seemed to be losing it’s effectiveness. I was seeing blood more frequently and the urgency/pain was getting worse). And once again the very first night I used it I woke up the next morning to pass a completely normal stool. No blood/mucus/pain. I thought these would really be my answer.
Skip ahead to the summer of 2009 and my symptoms were getting worse. I also started having abnormal (to me) stools. Very soft and thin. My doc wanted to do another sigmoidoscopy and I agreed. Everything looked the same as it did in Jan 2008 ( I must say this scope was very uncomfortable though). He put me on Colozal and sent me home. It wasn’t until October of that year that I started to see some improvement. But by this time I had moved to 3000 miles away and needed to find a new doc. When I did and when I explained my story to him he wanted to do a colonoscopy to see what was going on (he didnt’ trust the previous doc’s diagnosis). So in Dec of 2009 I had another scope. Still left sided only this doc said it looked closer to severe then mild (which was what the previous doc said). Unfortunately the day after this scope my symptoms got much worse. The pain I experience passing stool was tremendous. I was sure I would pass out from the pain each time I went. There was much mo re blood than I was used to seeing as well. My stools were still of normal consistency though. The doc prescribed me 50mg of Prednisone and instructed me to stop taking the Colozal/Rowasa. He said that once the Prednisone kicked in we would talk about 6mp. He liked to use the big guns first with all of his patients. 2 weeks into the steroids and I had no relief. I was on the verge of going to the E.R every day from the pain. After talking with the doc over the phone he said to up the Prednisone to 60mg a day. I complied but still so no improvement.
I had been taking it for about 1 month at this time and only saw modest improvement (at this point is was Jan 2010). I started tapering 10mg per week and by the time I was down to 20mg I started improving dramatically. Once I was down to 10mg I had a follow up with the doc. He was very confused by all of this and did not feel the steroid was really helping. He couldn’t explain fully why I was improving. So he referred me to some of the top GI doc’s in the world down in Boston. After reviewing my case they were equally confused and suggested I try Lialda again. They disagreed with the top down approach of my GI doc at home. Being a bit frustrated with everything and seeing how I was feeling almost completely normal I decided to just ride out this remission and see what happens (dumb I know). I went all the way until May of 2010 with almost no symptoms. No blood, no mucus. I was farting dry farts for the first time in a LONG time. Than in May I slowly started seeing mucus and b lood streaks on my stool. By mid May the pain was back and I immediately made an appt with my GI doc.
Since this is already incredibly long I think I’ll sum it up now……since May of 2010 I’ve had a wild ride. Switched doc’s and I’ve been back on Lialda for 8 months or so with Canasa at night. I’m SLOWLY improving.
My main interest at this point is in smoking. I quit smoking 6 or so years prior to getting UC. The recent posts on this website regarding Dr. Hanauer’s recommendations to try low-dose smoking IF you are an ex-smoker led me on a rampage of reading about this topic over the past few weeks. I’d be surprised at this point if there is a study I havent’ come across. I initially thought it HAD to be B.S. But I was completely wrong.
So my question is to the patients of Dr. Hanauers who posted their stories on this site. Susan 0 Connor was one and UC Man I believe was the other. Did Dr. Hanauer mention anything about possibly developing Crohns as a result of resuming smoking? And since you guy’s haven’t updated your post’s in a few weeks how are you feeling now? Still doing better with the cigs?
The way I understand it is that IF you have a predispostion genetically to Crohns and you smoke – than the smoking may trigger it and make your case worse than a non-smoker. Where as if you have a genetic predispostion to UC and you smoke – than it may never show itself until you quit smoking. And if you resume smoking many times the disease goes back into hiding (remission).
I apologize for the length of this….but that’s my story!
Lialda (4 per day)
Canasa(2 per day)