Ulcerative Colitis Tips


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Being Healthy to Colon Surgery in One Rough Summer

Introduction:

Hello, my name is Trent and I was just a normal 19 year old guy who loved to cycle and play tennis and be out with friends but that all changed when I was hit hard with Ulcerative Colitis.

My Story from Being in School to Having my Colon Removed:

It was the last day of school for the semester, just finished my last final of my first year of college but I wasn’t feeling good at all like I planned on. I went straight home and hit the bathroom where I had been many times in the previous days before. Not sure what was going on I went to the doctor who thought maybe I just had food poisoning and tried to treat me with that, but after a week nothing improved it only seemed to get worse. I went back to the doctor hoping for something that would keep out of the bathroom and the cramping to stop but he wasn’t sure what was wrong and recommended I go to the hospital because I was in such bad shape. I was at this point super dehydrated and losing weight fast and after only being sick 2 weeks. Went to the hospital and would end up spending a week trying to get better, but nothing was helping. They had me on antibiotics and steroids but I still spent much time in bed because of the pain o r the bathroom. Finally I got sent home with the hope that I would get better so they could do a scoping without causing any problems in a week. Well, the week came and went and I was only getting worse, I was down to about 95 pounds from my 130 I normally weigh so things weren’t great. I couldn’t walk or anything without the help of my mom or dad. Went back to the hospital where they took me in and had me set up for a colonoscopy the following morning. It was just another sleepless night for me as I waited for the morning to come and find out what was going on with me. They did the scope and that’s when I got the news that “I have a textbook case of UC” as the doctor put it. I have never heard of the disease and at that time didn’t care what I had, I just wanted to feel better and get back to cycling and playing tennis like I use to everyday. Little did I know I was in for a long rough ride dealing with Ulcerative Colitis. I ended up spending 18 days in the hospital as different doctors came by and offered all the advice and recommendations they had, we tired Asacol, azthioprine, predinsone but nothing made any difference for me. I finally settled with trying remicade, I was getting so depressed and was willing to do anything to feel somewhat normal again even the thought of surgery sounded good to me if it would help, but my parents thought the remicade would be the better choice, like me they were scared to death of everything going on but they did the best they could to stay strong and support me. Well, if there was any good news to all this the first remicade infusion really helped me a lot, in fact it got me out of the hospital because things had improved so much. I was so excited but it was short lived, after about a week things started to roll back downhill, but with the infusion just a week away I did my best to stay away from the hospital and hope the next infusion worked like the first one did. Well, it did help me a lot again this time but this time it lasted about 3 days of goodness, its like they didn’t give me enough of the drugs. So for the third one my GI bumped it up 2 weeks hoping to get me feeling good again but this time nothing changed, it was like they just pumped water into me. I was thinking at this point life was over and I would just feel bad forever. A few weeks went by and I found this website and read peoples stories and it helped me a lot, I found out about the SCD diet and tried that but no change in anything and then I came across CURTIS’s STORY and about his surgeries and started to research more about the procedures and the more I read about it the less scary it sounded to me and I was ready to be feeling good again and figured surgery was the only way for me to get that way. I got sick in May and it was now August my whole summer had came a went and I wanted to get ready for school again but with being so sick I knew I wouldn’t be able to live away from home very well after contacting a few members of ihaveuc.com about their surgeries and how their lives are now I figured I would take the chance and go ahead with the surgery.

And here I am today, I met with a surgeon at the Houston Rectal and Colon Center September 14, 2011, and we set up the surgery the following week on September 20, 2011. It will be two weeks tomorrow since I had my colon removed and the J-pouch created. It will be a two part surgery rather three because I was able to get myself in pretty good shape. They gave the ileostomy which hasn’t been as bad as I thought it would be now that I am getting pretty use to it.

As of today I feel great, almost hundred percent better than I was 2 weeks ago before my surgery when I was always in the bathroom or laying in bed with such bad cramping pain. I am recovery really well, and walking around outside away from my house, which I could never have done weeks ago for fear I wouldn’t have a bathroom to run to when I needed it. I go see my surgeon in clinic this Friday and hope he has some good news on my incision and the drain tubes will come out.

I know this was a long post but I kept putting off my story until now, not sure why but I figured if me reading everyone else stories and it helping me, that maybe my story or journey can help someone else out there who are going through those rough days and sleepless nights not knowing what is going to happen. It sucks being scared to leave the comfort of your bathroom and not being able to get out and be active because the lack of energy and all that accompanies UC flares. I am hoping once I get fully recovered I’ll be able to jump back on my bike and be able to ride a charity event for this disease with a huge sence of pride.

The one thing that I would really like to say is that as much as I have hated getting this disease that it has also been a blessing for me, it put into prospective on whats important in life and how everything that seems so normal can be taken away like that in no time. It has showed me a whole new look on living and enjoying everything you can about life. It has brought me closer to my family as they rallied around me and supported me and continue to do so as I recover from the surgery and helped me realized how much my friends cared for me as they did the best to understand when I just couldn’t hang out. And I wouldn’t want to give that away at all. I am really grateful for all that I have and the support that people have sent my way even if they don’t know me, just them putting me into their thoughts and prayers has really showed me that life is great and to take advantage of it every day that I can from here on out.

My Medicatons:

Prednisone, which I will begin to taper off of for good I hope.
Metronidazole (only a few days more of)
Iron Pill
Flintstone Vitamins
Levaquin (only a few days more of as well)

Submitted by Trent in the Colitis Venting Area




surgery

5 Responses to Being Healthy to Colon Surgery in One Rough Summer

  1. Adam
    Adam October 6, 2011 at 5:04 am #

    Hey Trent,

    I can’t tell you how thankful I am that you posted your story, and i’d love to meet you someday. You’re incredible. The same goes for you’re family!

    It just blows me away how so many people come down with UC out of literally nowhere, and then sometimes they go into horrible severe symptoms like you had right away. The reality is that for some others its much more gradual. But that wasn’t the case for you. And the fact that you made some BIG decisions without months and months of thinking and agonizing over them, and are now seeing the positive life ahead of you again is FRIGGIN AWESOME. So so so so so so proud of you. I’d write 500 “so prouds” but you get the point.

    I can’t wait to message Curtis as well, who I’m so dang happy for too. You two seem like you both got alot in common. Two guys, who love being active and living life to the fullest, and who are going to accomplish whatever it is you want to do with your life. And most importantly, it is so great to see someone like you who is thankful for being alive.

    It’s about 4:50 in the morning for me here in California, and reading and posting your story was such a great way to start the day. Good luck to you Trent, and I can’t wait to hear the follow up on how life goes for you.

    Adam

  2. Curtis October 6, 2011 at 9:21 am #

    Trent!

    Dude so stoked that you were able to find inspiration in my story and experiences! It sounds like you were hit hard and fast just like I was. Life is crazy. I never thought I would be where I’m at today but when life throws you curve balls you just have to find a way to get through. Staying positive is the number one thing and it looks like you’re doing well with that. I had my takedown surgery 2 weeks ago and am already doing SO much better than when i had UC…not even a comparison. If I could do it all over again I would, even if meds were able to calm my UC, I think I still would have opted for having the surgery. I got so used to having my ileostomy that I didn’t even notice it anymore for the last 2 months that I had it (I had mine for about 6 months). I still have about 4 or 5 weeks left to heal enough where I can get back out there and start playing soccer and surfing again but after all of this, I can wait a couple more weeks. I can’t believe these past 10 months have already come and gone, time really flies. I’m so close to being back to normal (my normal will be once I can go play soccer and surf again, so until then, I’m just semi-normal).

    Best of luck to you in the future, if you have any questions you can ask me whenever!

    cmarcikic@gmail.com

    Stay positive

    • Steve October 12, 2011 at 6:34 am #

      Wow Trent’s story is almost identical to mine, I started bleeding out in May this year (2011) spent a month in the hospital and was ready at one point to be done. I live in a small town in
      Alaska and the Internist I first went to before ending up in the hospital, did a partial colonoscopy and put me on prednison. After a week of getting worse I asked him to refer me to the hospital in Anchorage. The start there was a nightmare in itself with the right hand not knowing what the left hand was doing. One of the best pieces of advice I received before going to the hospital was to make sure I was my own advocate. In other words question the doctors and nurses, know about the drugs they are giving you and their interactions. The doctors and nurses are only people they have lots of patients to take care of and they make mistakes. That advice was so very helpful, I can’t count the number of times I had to stop the nurses from hooking up to my IV when they were not sterilizing first. Back to the Internist. The day before the GI doc in Anchorage was to start me on Remicade, one of my test results came back from the Mayo testing positive for CMV colitius which is curable. This had my doctors baffled because CMV is normally not a issue unless you are HIV positive, which I was not. I had to quickly get off the prednisone, which I believe could have been the reason I got the CMV. When I left the hospital in June, I was cured of the CMV but still had colitius. But the docs couldn’t determine whether I had UC or Chrones.
      Had a full blown Colonoscopy the end of June, within days of the colonoscopy I started bleeding out again and went back to the Internist on a Mon. and again he put me on prednison and told me to come back in a week. By saturday I’d had enough and checked into our local hospital (I have now learned not to wait around for the doc appts before taking action for myself). The ER general practitioner had some test done on me. One test was specific for C-diff. I came back positive and again needed to stop the prednison. Got things under control, 6-8 bathroom trips a day. Fast forward to now, Oct 12th. I’m sitting in my hotel room in Rochester Minn. after having gone through the testing gambit at the Mayo Clinic. They were not able to determine if I have UC or Chrones because of my history of hemorroids. I had high hopes coming here that I could get a definitive answer as to having UC or Chrones. Before coming here I had was down to 2-3 bathroom trips a day and gaining weight. I warned the doctor here at the Mayo that after my last two colonoscopies I went into flare ups. So, as I write this, again I am bleeding and at a loss of where to go from here. My whole colon is infected and I am ready for it to be removed.
      I read about a surgery called BCIR and it seems to me to be a good way to go.I don’t believe I’m a candidate for the J-pouch due to my historical hemorroid issues. The previous version of the surgery was called the Koch, but it had problems due to the man made materials they used. BCIR uses the persons own small intestine to make the one way valve. Does anyone have experience with BCIR? I would appreciate any information.
      My personal email is bslayers@yahoo.com

      Stay positive,
      Steve

  3. Johnny Drama
    JohnnyDrama October 6, 2011 at 9:53 pm #

    Hey Trent and Curtis!! Great posts… crazy stories men..
    Just read Trent’s and then read all of Curts http://www.ihaveuc.com/author/curtis/
    Sounds like you both went through hell!!
    You’ve guys been though alot and its hard to imagine the pain at such a young age…
    You dudes must of been some tough mother fuc****
    Keep trooping guys… your going to be good as new once everything is said and done..
    It sounds like you both enjoy the outdoors as much as I… but I haven’t surfed before(curtis) that’s on my bucket list……. although I went buggy boarding in cali when I was 10…haha
    Keep us updated on how everything goes guys….
    Peace out
    JohnnyDrama

  4. Paul Willoughby October 7, 2011 at 3:42 am #

    Great Story, Trent. Really appreciate you sharing. I’ve been living with chronic UC for the last 9 years and had my first flare up 4 years before that before going into remission for 4 years. I’ve been thinking about doing the surgery rather than continue taking all the drugs but I just feel like it’s such a big decision that you cannot reverse. As sick as you were, it probably made the decision a little easier but still that is awesome to make that decision.

    best wishes,
    Paul

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