My Biggest Concern…Being Forced to Remove My Entire Colon

Introduction:

My name is IonuČ› (in English has an equal of Johnny, so call me Johnny), I’m 30 years old, work as an ATC and I have been diagnosed with UC since may-june this year even though I had The symptoms since December 2012 and it took me 5 months to convince the doctors.

Some more about me:

I from Europe, Romania, I’ve played basketball in primary school so I also do that now when I have the time, also tenis and football, i like reading, sleeping :)) ( one of the best parts of this illness, the lazy and sluggish part ), go out on walks, movies.

I am a very stubborn person so I refuse to think that I won’t be able to control my UC even though ta same point I really won’t be able :). I will still think and feel that is in my power to feel better

Symptoms:

Currently no real symptoms, just a few nidle pinches like I’ve swallowed some fish bones and they’ve reached the colon :)) and something like a rash on my skin from time to time.
Almost daily 1 stool in the morning and the weakness that follows me everywhere.

Pilot Episode

UC changed with 180 degrees my view over life itself as in what I eat, from where I eat, what do I buy and all that stuff regarding anything I put in my mouth, drive it to an obsession maybe.

Started with Elaine Gotschall SCD about 2 months ago and ended up now eating rice and bread but I will try to keep it as much as i can, it is pretty rough and you have to be careful and make up for the things you lost by keeping this diet as in vitamins and energy for your body and not get to the point where you have lost weight and energy because of the tight diet.

I really miss the feeling of not having to plan anything if i don’t have the time or if I am not in the mood and i hate the scary feeling of going out and maybe have a bite of something my girlfriend is having or some other friend or maybe drink something else than water and after that just enter a phase of blind waiting to see what happens next. In that phase your attention is oriented only upon yourself and you lose the talk between the people we went out with.

The family reacted ok after my mother cried her eyes out even though she is strong woman ( she had breast cancer 12 years ago and beat it at least until now ). And worst thing is that they live in another city about 600 km from the city i live in and also work.

My biggest concern is about having to struggle with life if i will be forced to remove my entire colon. Not afraid of anything else, like dying or getting cancer, just that and how will that affect even more my life.

Medications:

I’m on Pentasa 3/dayof 1 gr oral and 1/day of 1 gr suppositories.
Supplements: Ginsavit or Centrum as minerals and vitamins, some probiotics Redigest, Lynex, Zirfos and prebiotics Enterolactics, Vitamin C Cetebe with last longer action, Himalaya Liv 52 for liver and sea-buckthorn capsules.

written by Ionut C

submitted in the colitis venting area




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8 Responses to My Biggest Concern…Being Forced to Remove My Entire Colon

  1. Adam
    Adam September 24, 2013 at 6:41 am #

    Hey Ionut,

    Hang in there. If you are having success with figuring out what types of food agree with you and what types of foods do not, well, that’s a huge first step for alot of people with UC.

    Also, you’ve been diagnosed for less than a year, and I think most people with UC would agree that the first year is often the hardest for so many reasons. But believe it or not, your life can be just as great as you want it to be. (Even if you did opt for surgery someday). But no matter what decisions you make, I wish you and your family the best and thank you for sharing your story.

    -Adam

  2. Per September 24, 2013 at 8:23 am #

    Hi Ionut

    I know what you are talking about, i had UC for 15 years, before i finally decided to do the surgery and i tried pretty much all the diets there are for people with UC and for me it did absolute nothing, my UC was always the same, i even tried alot of herbal treatments that was suppose to be good against UC aswell, but again did absolute nothing for me, the only way Doctors could control my UC was with Prednisone and it was a very high dosis, 80mg daily was what it took for my UC to go in remission, and if i just went down 5mg, boom there it was again. Today im so happy my wife convinced me to do the surgery even though it was a hard recovery afterwards, but now im 100% cured of UC, no pain, no meds, no urgencies, and the best part is, i only have 2-3 BMs a day and i eat anything i want. Now i just wish i would have done it much much sooner.

  3. Richele
    Richele September 24, 2013 at 6:39 pm #

    Hello Ionut
    I’m sorry to hear you are struggling with this horrible disease.
    Please do not lose sight of the things you enjoy doing, and if you can, get out there and do them! I think staying active is important, as well as rest. It’s all a balance.
    I’ve also turned to diet and have found some relief…at least I’m hoping!!
    I think Adam is right, the first year is the most difficult, it’s all so much information to process. It gets better.
    Hang in there!
    Richele

  4. Wendy
    Wendy September 24, 2013 at 9:24 pm #

    Hi,

    I always live with the possibility of having to have my colon removed as well. I’ve had UC since 2008, but diagnosed in 2009. It is draining, but I’ve been able to get myself into remission just by watching what I eat and taking supplements and vitamins. I am currently back in a flare though and have been for almost a year. I hope you are able to learn a way to deal with this. Best wishes.

  5. AJF
    AJF September 25, 2013 at 5:33 am #

    Hi Ionut,
    Like everyone said to me recently, “welcome to the club you wish you never had to join”. I am also newly diagnosed with UC and have had my ups and downs this past year. I, too, have the rash on my both of my legs and found that Tazorac helped a lot. It’s a prescription cream used for Psoriasis and has controlled the rash to almost completely gone. It’s very expensive but insurance may cover it.
    Wishing you all the best of health!
    AJ

  6. Ionut September 26, 2013 at 5:40 am #

    Hey all u,

    Can’t really believe that I’ve already got 5 comments, u guys are great and u r right AJF with the club joining, but it made me smile :)))
    I really am starting to get along with my life , still worry what to eat and weigh like 5 times a day :))). I gotta get rid of that habit pretty fast.
    @Per: I will comment on your story and hope to find more about the surgery because I am taking that into consideration in the near future. Unfortunately I don’t know if that can be done in my country so I would have to come to US for that. I am in love with USA so it will be easy for me, I’ve done some school in Miami and it was a blast.
    @Wendy: so sorry to hear that u r in a flare for about a year if a understood that right ( it sounds like hell ) , until now I had 2 flares that held for 1-4 days and I’ve stopped them with really strict diet, maybe u should try that.
    Thank u all guys and I will be more active and answer any questions u have or try to help anyone with an advice or any hints that I might have
    All the best in the world to each and everyone of you

  7. k September 26, 2013 at 4:47 pm #

    Hello Ionut,
    I hope your bout with uc turns out to be a mild one that goes into remission or is controllable without too many harsh drugs.
    But, if someday in the future it comes to surgery, please don’t fear it. I had an ileostomy 38 years ago (the j pouch hadn’t been “invented “yet). There have been a few problems/challenges over the years, but mainly my life has just gone on without pain, urgency, medicines, etc. I can’t imagine what life would have been like to try to live the last 38 years with uc.

  8. Ionut September 28, 2013 at 7:38 am #

    Hey K,

    Actually my UC has been diagnosed as a mild to moderate one as far as the activity is concerned from they biopsy results, but OMG to u, now that’s a very brave person to live with the surgery for the last 38 years.
    If I think back, I had moments when I wasn’t sure that I’m gonna live to catch my 30 years birthday ( on 2nd of September ) so all the credits to you for the lesson.
    I don’t know if there are people here who will enjoy this but I have 2 recommendations for you outside the UC: reading – Eckhart Tolle ” The power of now. A guide to Spiritual Enlightenment” and movies – a trilogy from Krzysztof Kieslowski ” Three colors trilogy – Blu, White and Red” from 1993-1994, oldies but exceptional in my opinion.

    Have a nice weekend.

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