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When Does a Person Say “The Doctor is Right, Take Out My Colon”

Introduction:

Hello! Daniel here in South Florida. I’m a registered nurse, 30 years in operating rooms from nyc,santa fe,d.c.; big hospital,little hospital,big childrens’ hospital and now small community hospital. relatively healthy sixty year old. wife has IC in remission(interstitial cystitis,long story).two children 21yr old daughter(cellist) and 26yr old son(early music musician). music a big part of family life.(i need lessons!).

My “son-in-law” is 24 years old and was afflicted at age 15 with a condition (UC) from the side affects of acutane,acne medication. He has had flare ups before but recently has had one which has landed him in a hospital. Weight loss,bloody stools,terrible abdominal pain et al. my son,his partner of 4 years is with him trying to deal with being his lover’s advocate.

My concern is the treatment, plan of therapy and/or possible alternatives. Many insights here from UCers; difficult to advise long distance in the midst of 5 days prednisone therapy,morphine for pain; colonoscopy on the 30th sigmoidoscopy yesterday,”your whole colon is inflamed, need to remove it before it is too late.” “Prednisone hasn’t worked,doubtful remicade will improve situation.” He refused surgery, infusion of remicade today. Next infusion would be in ten days; stopped prednisone. Tylenol and morphine only meds. no UC diet.

My son speaks fluent Dutch,is wary of “big pharma’, but unsure of ways to proceed.

When is the doctor right?

Colon needs to be removed? It just seems a bit premature. No elevated temp at this point. My instinct is to get the hec out of that facility,but then what?

So I guess I’m venting here. Frustrated don’t know enough.

When does a person say “the doctor is right,take out my colon”.

Is this a socialized medicine modality of treatment? Cheaper in the long run? Don’t know the game, the rules; medical guide lines not clear long distance. What can you tell someone who is watching his partner suffer, waste away? “Don’t listen to those doctors,they don’t know what they are talking about.”

“Colon not acute, now is time to operate before it get’s worse”.

Individual decision. Hang in there, yet the guilt of possible peritonitis and further complications under pressure of the moment…. ah
…that’s my freak out scene…not enough facts here, maybe someone else has some feedback on how to cope/support…
thanks

“may your BMs be smooth,regular and formed” old vulcan saying.

written by Daniel




11 Responses to When Does a Person Say “The Doctor is Right, Take Out My Colon”

  1. Adam
    Adam June 15, 2013 at 6:38 am #

    Hi Daniel,

    First off, I think you need to do a serious job of patting yourself on the back for being so concerned with your son in law’s well-being. AND, big pat on the back for your family being so open and honest with what is going on in these tuff times. One thing that is for sure is you ALL will get through this, and the tuffie times that you’re in the middle of right now will soon pass, and life will get back to a much more clear state. That is a promise.

    You asked some very common questions, specifically about when you decide to get surgery. And, several months ago, I created a survey specifically for people with UC who have ALREADY had their colon’s removed. You can find this survey by clicking on the “surveys” link above, or you can simply read the details on the actual page which is right here:

    http://www.ihaveuc.com/26-colitis-surgery-patients-survey-results/

    (if you go to question four from the link above, it has answers from the 26 participants who all answered the question: “Why Did You Decide to have Surgery?”

    I think you should get some very good information there straight from the source, not from doctors but rather actual UC patients which it appears is what you are looking for.

    I wish you the very best and your son in law as well:)

    -Adam

  2. Joanie June 15, 2013 at 2:07 pm #

    At 52, I’m just starting my journey of living with ulcerative proctitis/colitis. I want to say thank you to Adam and all those here who provide such deep support. I am grateful as it is easy to feel alone when you reside in the restroom!
    Thank God for my I-Phne!
    Daniel, may God bless and heal your family.

  3. j June 15, 2013 at 2:17 pm #

    Has he considered fecal transplant therapy? I was part of university study and it worked for me for a few months. After a short flare I began transplants at home and remain asymptomatic. Have him ask his doctor about this.

    Wishing him better health.

  4. bev June 15, 2013 at 7:03 pm #

    Hi Daniel,

    I agree with J up above. I think that colon removal is extreme, and only needs be done if one has mega colon. Has the young man tried probiotics or L-glutamine?

    I had (or had) pancolitis for 15 years and all of the drugs stopped working, which is typical. I decided to give a GOOD probiotic and L-glutamine a whirl. I never believed in anything natural…thought it was B.S. mostly because the doctors say that it is. Anyway, more than a year later, on these two things and NO MEDS AT ALL, I am finally what I like to call ‘cured’. Fecal transplants will achieve the same thing…only better. The probiotic replenishes the lost good bacteria (I took Accutane four times back in my twenties and that along with the odd antibiotic that I took, destroyed my colon too) and the L-glutamine is the thing that HEALS the colon.

    What if the young man can heal his colon and does not try before having his colon removed?

    Something to think about…

    Bev

    • Mary H
      mary June 16, 2013 at 4:36 am #

      Hi Bev,
      I’m taking the Glutamine right now but now sure if I’m taking enough at 12 grams twice a day. Just wondering how much you have been taking.

      • bev June 16, 2013 at 6:38 am #

        Hi Mary,

        I’m taking 5 grams once per day at the moment, but I was taking up to 40 grams per day before I attained total remission. You can play around with the dosage until you get where you want to be.

        Hope that helps.

        Cheers
        :)

  5. gary June 15, 2013 at 9:50 pm #

    My gp recommended colon removal when I was really bad. Spent a couple months in bed with no energy. 20-30 bms a day, aching everywhere, no appetite, and I felt like I had a knife in my stomach. sometimes when I went to the bathroom it hurt so bad I would throw up. Started feeling way better with fecal transplants from my wife. Now I just have frequent bowel movements that are mostly diarrhea which I can live with. I would be very angry if I had removed my colon with knowing how much better I feel now. I just do a fecal transplant when I feel like I’m going downhill. When I do regular transplants like once a week I feel fine and get to the point of one to two bowel movements a day. But I get busy and neglectful. But if you are asking me, keep your gut. They may come up with a cure tomorrow. cheers

  6. bev June 15, 2013 at 10:00 pm #

    Kudos Gary…great post. I feel that way as well…if you are dying, then yeah, take out the colon. If you aren’t, try EVERYTHING available NATURALLY, like FTs. When are they going to be mainstream treatment?

    • bev June 16, 2013 at 6:44 am #

      Sorry…I’m just saying that you cannot go back…once your colon is out, it’s final. I think the CURE lies in repopulation of good bacterium and healing the ulcers. That simple. All of these drugs the docs try and treat UC with do not solve the problem! Then they say…your colon has to come out…I just don’t buy it.

      I apologize to anyone that I offend here, because that is NOT my intent. I don’t think that removing one’s colon has to be the final outcome. We aren’t trying to repopulate the good stuff and we aren’t trying to HEAL the colon before we feel like we have to do that last very drastic step of actually taking the colon out of the body…

  7. Blake June 18, 2013 at 7:02 pm #

    Hey Daniel,
    When I was told by the doctor that I will most likely need to get my colon removed, I was devastated. I refused at first. I then tried the last step for most of us UCers, Remicade. I was really hoping that would turn things around, but it didn’t do squat except give me a crazy drug rash all over my body. At that point, I was realizing I had no choice. It was either surgery, or colon falling apart in my body. I now consider myself lucky because I don’t have to deal with these decisions anymore. I don’t have UC anymore and my colon isn’t trying to kill me anymore cause I don’t have one. If I could go back, I would have definitely tried the fecal transplant thing people are always talking about on here to give it one last shot at saving my colon, but I have no regrets. My life is so much better now without my colon. I have the J Pouch and it will be a full year in August since I’ve had it. I would do it again. Good luck!

  8. Giovanna June 21, 2013 at 10:38 am #

    Hi Daniel,
    I wanted to give tell you the story about my husband and his UC. He was diagnosed in Feb 2011. He was hospitalized 6 times in 2 years. He was told this past January 2013 that he needed to have surgery to save his life. His dr had written him a 1 page letter how he was choosing his own mortality if he did not have surgery to remove his colon. At this point he weighed 126 lbs, was on 60 mg of IV steroids for 7 months straight, and tried 3 doses of remicade infusion that were unsuccessful. He had a sigmoidscopy done at this time and showed his colon was worse after 3 treatments of remicade. He was told by numerous gastro drs and colorectal surgeons this was the worst flare of UC they have every seen. But my husband said “NO” to surgery and was released the next day. We were at a loss of words. I am my husband’s biggest cheerleader and told him that I would do and research everything I had to do to get him better without having surgery done if this was his choice. We weaned down his steroids, decided no more remicade, continued taking Apriso daily (UC meds to help get back to remission), and try different homeopathic regimen. He starting taking extra virgin coconut oil- 3 tablespoons daily. He also was very deficient in vitamin D, calcium, magnesium and started taking vitamins for this too. So with this regimen he started on the long journey to help heal his colon. He also started to watch what he ate. Even though he was told by numerous gastro drs that diet has nothing to do with UC flares, wow were they all wrong! Food has a substainal role in healing from the inside out. It now has been 6 months since this change and he is now gaining weight, less bowel movements, no blood and enjoying life again. The point of this story is to tell you that you can heal your body even from the point of no return. My husband was determined to not have his colon removed at the age of 32. Good luck and I hope all goes well.
    Best Wishes,
    Giovanna

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