Ulcerative Colitis Tips


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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




surgery

12 Responses to Sick and Tired of being Sick and Tired! !!!

  1. Ben G March 21, 2012 at 5:35 pm #

    Best of luck, Joseph. Your story sounds remarkably similar to mine (and so many of ours). Although my surgery did not go exactly as planned, I don’t regret having it. Life with an ileostomy is worlds better than life with UC. If you’re interested in a surgery play-by-play, I blogged about the entire process and all of its twists and turns for me — http://knowguts.wordpress.com — and I’d be happy to chat about it. I completely agree that talking to others with UC is sometimes the best medicine. Good luck!

  2. Trish March 22, 2012 at 1:32 am #

    Good luck Joseph. It does sound in your case like surgery is the way to go. Although I haven’t had this myself, I know there are lots of people on this forum and other SCD forums who’ve had it, and that it has worked wonders. I hope that this procedure gives you your life back. Take care and be well, Trish :)

  3. Blake March 22, 2012 at 8:59 pm #

    I’d say go for it Jo! I had my first surgery last December, I have been living with an ostomy bag since then. I’m so happy I did it, I feel great and living with the bag is no big deal, after you get over the first few weeks. I’m getting a J pouch and two more surgeries, but I’m so pleased with just wearing the ostomy bag, it makes it a lot easier to handle the thought of the J pouch not working out for me, but I’m thinking positive about it. Good luck, I think you’re gonna be really happy with your decision!

  4. Karie March 25, 2012 at 8:36 pm #

    Joseph,
    Did you get surgery yet? Seriously people who get surgery only listen to their doctors(btw are idiots)…. Who seriously don’t have a clue about what is really going on with our bodies. Before you decide to do that I have a few things to try first as it completely changed my life. Email me if you’re interested

    • Blake March 25, 2012 at 9:03 pm #

      Just to clear things up Karie, I didn’t just follow doctors orders on getting the colon removed and I don’t think most people who get their colons removed just simply say “Okay doctor.” Sure, the doctor strongly suggested it. I knew it was gonna have to happen sooner or later, my colon was disintegrating inside of me. Taking bloody shits 15-25 times a day for months and months is not a good time. I tried, like most others, the diets, drugs, advice of others with the disease, nothing worked well enought for me. I would’ve loved to kept the colon, but it was killing me, so I said take the damn thing. I never would’ve thought I would’ve had to lose an organ at the age of 30, but I’m glad I did and I feel great without it. If I could pick having my diseased colon back, or this ostomy bag, I’m picking the poop bag hands down.

      • Joseph
        Joseph March 27, 2012 at 6:38 pm #

        Blake your post is so encouraging! I’m really nervous about the ostomy bag, but like anthinng else i’ll get used to it. Thanks for your input. Btw like u i made the decision on my own to the surgery; dr kept mentioning it finally made decision to do it. Not schedulef yet but hopefully will get to that soon. Right now i’m back up to 40mg of steroids because bloody bm’s started again, so to prevent perforation; which has almost happened on a previous flare. I hate the stetoids but oh well hopefully we can get in really soon.

      • Wendy
        Wendy May 23, 2012 at 2:47 pm #

        I had chunks of colon (I think it was, or tonnes of chunky fleshy poop coming out of me for a year. Then, on supplements, I got better. I’m still not ok, but much better than I was and no blood at all. Nothing comes out but poop and in log formation most of the time. Now that I’m quite healthy, I am thinking of getting my colon removed as my best chances of recovery are when I’m healthy. I feel crazy for making this choice, but it is my choice so far. Some people, even when they have UC don’t understand what it is like as it is very different for everyone. The first time I had an attack, I thought it was horrible, but no big deal. Now that I’ve had a horrible attack which hospitalized me for a week and from which I am still not fully recovered, I am seeing a doctor about removing my colon myself. I am terrified. I was going to the toilet so often that when people asked me how often I would go to the washroom, I would just tell them I spend about three to five hours off the toilet, the rest of the time I’m on the toilet. The past two months I’ve had normal poop and I’ve been on the toilet only about five or seven times a day on average. Which is great and which makes me hesitate about removing the colon.

    • Raji April 15, 2012 at 6:57 am #

      Please let me know what steps you took? I am recommended this surgery and will be meeting my surgeon on wednesday.

      Thanks,
      -Raji
      (mraji27[at]gmail.com)

  5. Blake March 27, 2012 at 7:21 pm #

    Thanks Jo! I was super nervous too when I got my surgery. That’s definately normal. It may take a while for you to feel like you made the right decision, but once the pain of surgery dissapears and you realize how good you feel, you get off all the drugs and you don’t have to live in the bathroom anymore, you’re gonna be very pleased. Let us know how everything goes and if you have any questions… fire away. I can give you my email if you have some personal questions. Good luck bud!

    • Joseph
      Joseph May 7, 2012 at 9:20 pm #

      Blake,
      Did you have problems getting the bag to stick?

  6. John Harmala March 29, 2012 at 3:39 pm #

    Surgery is a very serious decision. I was diagnosed with ulcerative colitis over 11 years and I just had my first surgery on March 12th. It took me about two years to accept that I needed the operation. Presently, I am home recovering after spending seven days in the hospital. While I know that I made the right decision, surgery is the first step in a painful and difficult process. With a positive attitude, you need to believe that you will get better. While I have one more operation in my future, I am on my way. Please feel free to email mail me if I can help.

  7. Catherine May 15, 2012 at 5:58 pm #

    Thank you, Blake, for clearing things up for Karie. My 19 year old daughter has had an ostomty bag since January. Like you, she got used to the bag very quickly. It really is no big deal. She has gotten her life back with surgery. She was more than happy to let her colon go after a year long flare. A combo of the flare, and all the medications (Prednisone, 6MP, Colazal, Remicade) made it extremely difficult for her to get through each day. Now she feels so, so, so good! She finally has no pain, no bloody poops, no nausea, no joint pain, no fatigue. What she does have is plenty of energy, and is HAPPY outlook on life!
    In 2 days (Thursday-yikes) she is having her jpouch surgery. She is very excited. If all goes well, it will be her last surgery.
    She told me if she had to live with her bag the rest of her life, she would be fine with it. Good to know…
    Good Luck to you with your future surgeries, and to everyone facing surgery. It’s a good thing….

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