I know how u feel. I have had this uc for 25yrs. I hate it
I saw this forum some time back and kept the link intending to join, but didn't. I came across the link again today and started reading the post from "therearemiracles". I laughed until I cried it hit so close to home, but then the tears turned from "funny" laughing to sorrow from understanding how dreadful this miserable disease is. I continued to read everyone else's responses to her humble, "tell-it-like-it-is" post. I can relate to every single one of your experiences. I have been there and done that at least once and probably more than that on other counts.
I started noticing blood in my bm's at about age 18. I went to military docs who couldn't find what the problem was. Usually it would last a couple of days and would leave. I have always had a nervous bowel. Anything new or unusual I had/have to do would cause me to have to sit in the bathroom before the event. Even going into a new store could set it off. I remember having extreme stomach ahces every first day of school and sitting in the bathroom until the last possible minute before I had to leave. I have had several procedures over the years...sigmoidoscopy, barium enema/xrays; I even tried colonics once. Then after the difficult birth of my first child, I had to undergo surgery (anal sphincterotomy) to fix a tear/fissure in my rectum which would break open and bleed with each bm. I was sort of hoping that would fix whatever other problem I was having. Yeah, right.
about 7 years ago, it turned ugly on me after the birth of my 5th child. I was in the bathroom on and off all day. After a colonoscopy, the doc said I had UC and presribed some meds I couldn't take due to me nursing a baby. So I weaned the baby, but wouldn't you know the bleeding stopped as soon as the little one was weaned. I was so glad, though, and hoped it was gone for good. But no.
I have several children, and after the most recent birth in 07, this stuff was so bad I asked my OB for a referral to a new booty doctor. It was a daily battle, every morning, in and out of the bathroom with gas, goo, blood and poo, along with nasty cramping. I saw a regular looking gal on a morning news show about this time talking about having colitis, and she described it just the way I had it. I knew it was time to do soemthing. After the colonoscopy confirming my condition anew, I went on Rowasa and Lialda. The meds immediately took effect and the symptoms completely stopped. I was elated. I was taking 2 Lialda tabs a day and got the Rowasa enema down to only every 3rd day for maintenance. I was not happy about meds for life, but at least I was living outside the bathroom again. So for about 10 months, I was doing great. The doc said the meds should keep it from recurring, so I was really glad it was "gone."
Then my family moved to a new state. I guess the stress of it, although I was not feeling extremely stressed by it, got my condition active again. The move was a year ago, and I have had flares off and on while on my meds during this time. Lately, I have been flaring for about a month. The new doc here upped my tabs to 4 a day and the enema to nightly for 10 days. It subsided some but has not settled down. That's where I am at now.
How many of you think UC is tied in to your head? I know when I am anxious, it kicks up. When I am peaceful, it stays quiet. I just need to find a way to turn off my head. And you are all right in that this stuff has a mind of its own. When it says it's time to go, you must OBEY!!! A 10-foot trek to the bathroom is like a mile no matter how fast your feet fly. Okay, and I HATE the noise my body makes! I have teens now, and they are sort of aware of my condition. But you know how they can embarass you over bodily noises!!!!!!!!!! Fortunately no one has said anything, but I just know the faces they must make outside the bathroom door.
My teen daughter was so sweet the day before I had that last colonoscopy. I told her about what was going on with my body, so she knew. She and I had gone in to Walmart to get something quickly (quickly because I could not trust my bowels). We had gone deep into the store when "it" hit me. I stopped and kneeled down to try and stop what was inevitable. Even Chuck Norris couldn't fight this one off. (hope that made someone grin) No amount of squeezing was going to help. It won, I lossed. It was the noisiest thing, and there was nothing I could do about it. She was so sweet about it and was sorry for me. I was so proud of her compassion and understanding. She walked behind me to the front of the store to make sure I was covered. What a gal! Thankfully no one else was around when it happened.
On another note, I'm annoyed with my Walgreen's pharmacy lately. Everytime I need a refill they don't have enough. They will give me one box of enemas (a week's supply) when I am supposed to get 3 boxes. Just this Friday, my hubby went to pick up my refill of 60 Lialda tabs and they only gave him 10. They told him to come back the next day and when he did they said he'd have to wait til Monday. What's up with that? Then they try to charge me full price when I go get the balance due. UGH! I will not go back there again.
Anyway, I'm glad to be in your company, even though that sounds pretty lame. It helps to know I'm not alone. Thanks for letting me vent. It's been in me for years. Guess I'll go hit the bathroom now, LOL.