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Sick and Tired of being Sick and Tired! !!!

joseph before surgery

Joseph with his wife:)

Introduction:

My name is Joseph and I’m a personal banker @ a large nation wide bank. I am happily married for almost 3 years in June. I have the best wife. She had stood beside every single time I’ve gone through one of these flare ups. Let me rephrase that; she has stood by me through it all. Sorry for the brief sappy moment ;-)

Symptoms:

I have frequent stomach cramps. Was on 40mg of prednisone, which still had loose stools until i started IV steroids this previous time in hospital, now I’m down to @ 20mg orally from 40mg and my stools are already starting to get loose. My stools while on 40 mg were hard tootsie roll shaped bms. Still getting weak/worn out really quickly. The steroids make my mind think I can do more than I really can so for me I end up over doing it. Abdominal pain has been one of worst symptoms. We are meeting with a surgeon soon to get this thing out.

I’ve actually been diagnosed since December 2007.

I’ve been on my fair share of prednisone and asacol. I’ve also been hospitalized 3-6 times since then because of the Ulcerative Colitis. Finally in 2010 I had a really bad flare up with the runs and around 30 bms a day. The bowel movements were mostly bloody mucus substance. The Dr who did my colonosopy said my colon was the worst that he had ever seen. They were afraid might start to perferate. So they had surgeons on stand by ready to remove the colon. The same day we tried Remicade to prevent the emergency surgery. Well the Remicade worked @ that time. By October of that year we were back in the hospital. We tried switching to Humira which again only worked temporarily. Present day I’ve been back in the hospital 2 more times, one for 2pints of blood and second one for severe abdominal cramps. Dr put me on high doses of IV steroids (solumedrol). 40mg of iv steroids every 8 hours. Not sure if you know, but the I V steroids are extremely more potent than oral prednisone. Now I’m on 20mg (started orally @ 40mg, but currently tapering) of prednisone at home, pain meds for ab cramps/pain and Asacol. The poop is solid for right now, but from experience that changes right after I’m done with the steroids. Needless to say Dr is referring me surgeon at MUSC in Charelston, sc. Its the closest specialty Dr (only 2 hrs away). Surgery will be the cure and even though its hard to think about going through it, long term it will worth it. I’m tired of the meds, never knowing what foods will send my stomach into pains. The worst feeling is needing a bathroom and can’t seem to get to one or find it. I’m ready to have this surgery so I can have a normal life. It has been so reassuring hearing all the surgical success stories people put up. To those out there that are tired of fighting don’t let the fear of surgery stop you from having it. I’m not telling you to have it, that’s your decision, but don’t turn off the option without serious research and better understanding from your Dr.

I wish I had known what I know now 4 years ago. I’ll be glad to talk to anyone who is new to UC and trying to cope or comprehend what’s going on. Your Doctor is first, but sometimes it helps to hear from someone who lives with it.

Colitis Medications:

Asacol
Prednisone
Xanax
Pain med (prescribed but felt wise not share specifics about this one)

written by Joseph

submitted in the Colitis Venting Area



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