Nervous Wreck about Ulcerative Proctosigmoiditis

Cramps, a few daily trips to the bathroom (or not going at all. Depends on the day, I suppose), foul smelling bowel movements, kidney stones. I also have severe chronic fatigue.

I’ve been in denial for a while about having this disease. You should know that I am a very nervous, anxious person and I suffer from extreme panic attacks. When I found blood in my stool, which led to my getting a colonoscopy, it was on a Friday night and obviously none of the doctors were available during the weekend, it was so debilitating that I didn’t leave the house all weekend and I was shaking in my bed like a leaf, not to mention I vomited about 4 times. Even now, my hands are trembling over the keyboard. Some background:I first started noticing mucus in my stools in 2007. I thought it was normal for a while, but the smell was so foul and when I wiped (sorry about the graphics), it looked like I had just blew my nose. So I went for a sigmoidoscopy, which was a pain in the ass (no pun intended), but I’d rather do that than a colonoscopy anyway. I don’t like starving and I don’t like drinking that foul stuff and defacating my guts out so I welcome a sigmoidoscopy over a colonoscopy, even though the actual procedure is much less comfortable. The doctor found lymphoid follicles. He took biopsies, which said that there was normal colonic mucosa with benign lymphoid aggregates. Colitis was NOT identified.

And that was that. I also had a stool culture. The doctor said don’t worry, no big deal, just continue what you’re doing.

Alright. The symptoms of mucus came and went transiently and I thought no big deal, I had a doctor check it out and he seemed fine with it.

In 2009, I found a bit of blood and again, I was alarmed. This time, the stools were more orangey and still had that same foul odor. The doctor gave me another sigmoidoscopy. Biopsy said the same thing as it said two years ago: Colonic mucosa with prominent lymphoid aggregate in the rectum. In the colon: same thing as above, except it said I had “focal cryptitis.” More notably, the doctor found two small apthous ulcers. No diagnosis of Colitis either so I continued on my merry way.

Then came late 2011. I had my annual checkup and I spoke to the doctor. Now, at this point, I continued having mucus stools, but I thought nothing of it, having been checked out two times. However, I had developed a new symptom: my anus was continuously itchy and had creamy, white discharge. I would be walking on the street and all of a sudden, I would have such an itchy anus that it made me squirm. I figured that the smell, the itch and the creamy discharge were as a result of my underpants and the heat. However, I figured I would bring it up: this was a nuisance so I brought it up to my GP, hoping he could prescribe some anal itch cream or something. He said that it could be nothing, but I should get it checked out and he referred me to a gastroenterology (a different one than before).

At this point, I thought “screw it.” I already had two sigmoidoscopies and the previous doctor found nothing. Why go through this ordeal again? Then on Friday night, I found a little blood in my stool and on my wipe. I immediately went into panic mode because it was the first time I found blood in my stools. Oh man, it was the longest weekend of my life. I was so scared that I had colon cancer or something like that. I heard of UC and Crohn’s Disease, but knew little about it.

So Monday came and I showed the new gastro. the previous reports. He said that those don’t help him because the previous doctor didn’t go so deep and didn’t solve and rectify this persistent problem. He suggested a colonoscopy the next day. As you may have concluded, I’m a nervous nelly and that was one of the worst days of my life. That, coupled with not eating, drinking this disgusting drink and crapping my guts out led to more panic (I didn’t get a wink of sleep as I was shaking like a leaf all night) and puked twice (adios formula). Longest night of my life. My butt was sore from crapping so much, my stomach was upset and I was a broken person. All I could think about was colon cancer and chemo and dying. Here I am, a 21 year old kid worried about these things. Then again, I had previously been diagnosed with kidney stones after seeing blood in my urine and I thought kidney stones were for the elderly. Luckily, I haven’t had any effects from the kidney stones (haven’t passed them. They’re just chilling in my kidneys).

Anyway, they did the colonoscopy, I woke up and was informed I had a mild form of Ulcerative Colitis. I puked (again) right after I left the doctor’s office I was so nervous. He showed me pictures of my colon and I saw these white things that resembled lightning bolts in my sigmoid colon and my rectum. Whoopee! However, the doctor assured me that it was mild, he was optimistic about the prognosis and that I would be taking medication so the UC would go into remission for MAYBE, HOPEFULLY, the next 80 years or so. Fingers crossed, right? Haha. My parents and brother (to my knowledge) do not have colitis, but my cousin appears to have either UC or Crohn’s.

Well, I came home and started the medication the next day. I was prescribed Mesalamine rectal suspensions for a week or two and 3 daily Asacol pills of 800 mgs each. I was having these extreme anxiety attacks of course and only researching and looking up the disease made it worse. I would hear of things like “removing your colon,” “there is no cure” and “people with UC have a heightened risk of colon cancer” and I would go into frantic mode. No school for a few days as I just couldn’t go outside. I couldn’t focus; I couldn’t act normal.

And I still can’t. I’m worried about it, every single day of my life. I’m in denial about it also. Wikipedia states that UC affects 35-100 people for every 100,000 Americans and I HAVE IT? What are the odds? I was in denial. I couldn’t nor did I want to do any research. I just wanted to take my Asacol every morning and worry about things other than health: girls, school, sports and what I’m gonna do after I graduate from college. But here I am. The symptoms have improved. I still have these anal itches with the white discharge, but not as often as I used to, nor do I have outwardly visible mucous in my stools. They’re brown, instead of being orangey or snot-colored (sorry for the graphics). I still have cramps (probably even more-so now than before I was diagnosed). The strong smell of mucous remains, but what can ya do?

So please guys, help me. Tell me lies if you have to. Tell me that this is nothing to worry about. It’s not a colon disease, it’s just a condition like being bald or having heartburn. I’m nervous by nature and the worst thing is going through anxiety. I am on meds for anxiety and depression (Prozac), but health problems seem to overrule the meds. I also dread my next appointment with my gastro. and I dread having to hear him say I need another colonoscopy.

Like I said, I’m in denial. I have this rare disease, but I can’t admit to it because it seems so unbelievable. Hell, with those odds, there’s a better chance of an asteroid hitting Earth than me having UC, or Ulcerative Proctosigmoiditis (not 100% sure what the distinction is.) Yet I have it. I HAVE IT and it’s so hard to accept and not worry about what’s going to happen down the road (colonoscopies, colon cancer, removal of my colon, etc.) I can handle the trips to the bathroom and the anal itches if it meant believing that I don’t have a disease. Help me, guys! I really need you.

Sorry for the novel, guys. Anxiety has taken over.

submitted in the Colitis Venting Area