Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

1 Week After Colon Removal And On My Way

Meet Mike:

Just the typical 43 year old husband and father to 3 that unfortunately just lost my battle to UC but gaining my life back slowly.

Some more about me:

When I was healthy I loved to fish, hunt, attend all of my children’s sporting events, go to Reds games and Buckeye games with the family and of course have 1 date night per week with my wife. I am from a small town in Ohio and ended up settling down there as well..

Current Colitis Symptoms:

I currently have no symptoms of UC but before my surgery they were debilitating. I had all of the typical symptoms plus constant disabling joint paint in my knees, shoulders, elbows, wrists and hands. The joint pain got so bad it overcame the rest of the symptoms and kept me from work for months.

1 Week After Colon Removal

I have been battling this disease for years but it settled down for quite awhile until 2010 when it hit me like brick overnight. I fought the terrible bloody diahhrea, stomach aches, fatigue, fevers, night sweats and weight loss for 2 long years. The joint pain then started and I have never felt this much pain. I was getting worse by the day and once my GI and surgeon agreed that all options had been exhausted I decided it was time to move on and have the colon removed.

The entire surgery experience from prep to getting home was very tiring and stressful. I just had my entire colon removed January 9th and my doctor released me to go home 3 days later due to how good and fast my body was reacting to the surgery. I had my surgery at The Cleveland Clinic and can now see why they are one of the nations top health care providers. I also realized that hospitals are not a place to rest but only a place to heal. I got zero sleep and returned home so tired. Believe me when I say there is no place like home.

I am now 6 days past my surgery and feeling better everyday. Life with the bag is a huge adjustment but all of my UC symptoms are gone and the joint pain has already decreased substantially. I have my first home health nurse visit tomorrow to help me change the bag because I am quite nervous about not doing it right and getting leaks. I have no issue at all emptying it. I have actually put a good system together at home but not yet for the public bathroom visit.

I have received great support from my family, a support group and also this website. I will say that a great supporting cast is needed to go through this ordeal. My advice to the severe UC’ers is to not be afraid of this surgery but embrace it only if all else has failed and you are in declining health as I was. It really has not been that bad of an ordeal and once my J Pouch is installed I will be rockin the toilet again. I will give advice and support to anyone facing this surgery just as I received before I decided to have it. God Bless all UC’ers and I pray that everyone can find their lives again as I am doing. A big thanks out to Blake from this website, his story and advice did help me.

Medications I Tried:

No meds worked for me at all and once the remicade failed it was all down hill from there. I tried diets, exercise, home remedies you name it. Some of us just can’t whip this disease.

written by Mike

submitted in the colitis venting area




11 Responses to 1 Week After Colon Removal And On My Way

  1. Lisa OH
    Lisa February 6, 2013 at 6:30 am #

    Hi Mike. I hear you, believe me. I was dx w/UC Dec 2011, colon became toxic, so by Feb 2012, I had to get it removed. I had my surgeries @ Cleveland Clinic as well and had a great experience. It was a 3-part, so jpouch construction Aug 2012 & takedown Dec 20. It’s been a haul, but definitely worth it in the end (haha no pun intended). Hang in there w/the bag change process. You will get used to it and will be able to do it in your sleep in no time!

    Best of health to you,

    Lisa

    • Mike from Ohio
      Mike H February 8, 2013 at 10:30 pm #

      Hi Lisa,
      Who was your surgeon at the clinic? How is everything going after the takedown? I hope you are getting along better and do not miss your bag. I really do not like this thing. It has been a month now and my skin is starting to get irritated arounf my stoma, I think i need to remeasure and make a tighter fit with the seal. I am bleeding pretty bad around my stoma when I change the bag, I can get it to stop with the powder but you can tell its irritted it does not seem to be improving any. Do you have any suggestions.

      Mike

      • DONELLA POWELL February 18, 2013 at 5:45 pm #

        I recommend making an appointment with the ostomy nurse at the hospital where you had your surgery I was dealing with alot of the same issues and getting so frustrated I would just cry and that really got me no where once I saw her things are so much better she was a huge help, wish you the best with your pouch

    • Mike from Ohio
      Mike H February 28, 2013 at 11:45 pm #

      Hi Lisa,
      I have the process of changing my bag down pretty good now. Life with it really is not all that bad. I know you are having some infection issues but putting that aside is your J Pouch working out well for you. Who was your surgeon at the Clinic? I go back Tuesday to pick the date for my second surgery. How long did it take you to recover from your second surgery and get back to work and feeling normal again.

  2. Lisa OH
    Lisa February 6, 2013 at 6:31 am #

    Oh, and go Buckeyes!!!

  3. Jennifer February 6, 2013 at 2:21 pm #

    I was scheduled for the surgery in Cleveland in August of 2012 and my team decided to try me one one last med-Tysabri-so far it is working, but i feel that I too will be having “the” surgery so keep us posted on your recovery! Jennifer

    • Jennifer February 6, 2013 at 2:22 pm #

      PS-I also live in South East Ohio-Go Buckeyes!

    • Mike from Ohio
      Mike H February 8, 2013 at 10:35 pm #

      Hi jennifer,

      It has been amonth now and I do feel better by the day. If the surgery does become a reality do not not be afraid, the surgical team andstaff at the hospital were great and I really do not remember ever being in any pain. They will take great care of you at The Clinic. Just be prepared to not sleep for three or four days but with te pain meds you will be on it will not matter.

      Mike

  4. bev February 6, 2013 at 3:13 pm #

    What a truly great story.

    I just want all of us with UC to be happy and live our lives feeling like we should, no matter what we have to do to get there.

    Cheers, and all the very best in you new ‘old’ life!! Yeee-ha!!
    :)

    • Mike from Ohio
      Mike H February 8, 2013 at 10:32 pm #

      Thanks Bev,

      I am feeling better by the day but as soon as I get to feel good again I will be in for round two and have another 8 weeks off work. This is going to be a long year but I pray it all works out in the end. I have heard great stories and also bad ones about he J pouch. I just pray for the best.

      Mike

  5. Wendy
    Wendy May 21, 2013 at 8:23 pm #

    Hi, It sounds like you made the best decision for your body and that you are generally happy about it. It sounds like you were very ill before you had your colon out. It is weird how UC works. One day you’re fine and the next you can slam into a horrible attack, something you will never have to worry about again. I’ve had three flares since 2009 and each of them were totally different. The first one I was exhausted, but I was losing a lot of blood and was in a flare for a year before the doctor finally diagnosed me. I was starting to feel crazy going to him over and over again. Prednisone got me out of that flare as soon as I started the pills I was better. The blood stopped immediately, but my blood count was very very low and every time I stood up I was dizzy.

    The second flare I was very ill and within a couple of weeks I had to be hospitalized for a week. I honestly thought I was going to die. I lost 30 pounds. I’m 5’10 and I weighed 122. my normal weight is 155. IV Solu-medrol got me out of that nightmare with a follow-up of six months on prednisone. I really thought I was going to die. I LOVE food and I couldn’t even smell it or my bowls would churn. I think they were thinking they were going to take my colon out. Just a guess.
    This last flare I am in now I was slowly going downhill and was to the point where I could spend all day in bed from physical exhaustion. Whenever I was awake I would wish very badly I could sleep. If I kept totally away from food I would be fine, but eventually I would eat and then spend all night on the toilet and all afternoon if I ate breakfast. I think I am getting out of the flare by adding probiotics and l-glutamine Bev suggested.

    Anyway, the point is, like the second flare, there’s no telling how quickly you can go downhill. I understand what you describe and I believe it can happen at any time to a person with UC. It really does sound like you made the right decision. There’s another guy on here who describes his colon falling apart in the surgeon’s hands as he was removing it it was so messed up and I think he went from diagnoses of UC to removed colon within a month. I think his name is Curtis? I can’t remember. He has a crazy story which I hope doesn’t happen to me. It is so great he is alive and well. All the best to you in your new situation in life.

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