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Do I Need Surgery? …Confused With Colitis

H everyone.. I would like to share with you my uc story. I’m 22 year old woman from Turkey. I had pretty sudden on set of symptoms, diarrhea 10 times a day, urgency, fevers cramping so i had my colonoscopy and i was diagnosed with ulcerative colitis( pancolitis) 4 years ago. When i was just taking Salofalk it didn’t help me. So i needed to take prednisone. When i took it it really worked on me. But when i took off the flare up came back. GI told me that i needed to take Imuran (Azathioprine). When i used Salofalk and Imuran i was in remission about 2 years. But one year ago a bad flare up came back. i took Remicade 3 infusions and changed Imuran to Purinethol 5 months ago (mercaptopurine) but it didn’t change anything… Then i used prednisone again (32 mg/day) it worked on me, i felt pretty much. But i can’t use this medication all the time because of side effects. My doctors told me that i am addicted to prednisone. I am thinking about to use cyclosporine but doctors told me that i am too young to use it ( because of seriously side effects) and i need to remove my colon =( but i don’t know what to do. Do i need surgery? I try to avoiding stress, i use fish-oils, i eat yogurt (homemade) but nothing changes :( I think only i can do to try SCD diet. I need your opinion. When i use prednisone i am in remission but when i take off it flare up come back.. Salofalk, Purinethol or Remicade didn’t well on me if i don’t use prednisone. But 2 years ago i was in remission with Salofalk and Imuran :S it’s really complicated. ( by the way i hate it and its side effects grr!! :) Thanks for all your supports i need to know that i’m not alone. By the way sorry about my bad English :( i hope you can understand me. If you have any questions let me know :)




11 Responses to Do I Need Surgery? …Confused With Colitis

  1. Reid Bryant Kimball December 15, 2010 at 10:21 am #

    Well, if you are faced with losing your colon, why not try SCD or GAPS?

  2. Melinda December 15, 2010 at 11:50 am #

    Hi, please look at http://www.janetmckee.com she was given the choice to have her colon removed or start on a med that was known to cause cancer. She changed the way she ate (not the scd diet) and she is in perfect health today (it took some time to heal) I just started seeing her for my 5 year old son. We did the scd diet for about 2 months and it seamed to help a little but not completely, then I was given her name and number. you should contact her and get an appointment set up (maybe she can work with you on the phone/email?)
    good luck :)

  3. Jessica December 15, 2010 at 2:57 pm #

    DO NOT HAVE SURGERY!
    try the SCD! it works!!

    You need to commit yourself and follow it 100%, its not easy but its worth it!

  4. Peter NZ December 15, 2010 at 7:39 pm #

    Hi,
    I consider surgery the last last last last resort and have managed to avoid it for 5 years. People on this site are reporting good results with diet modification so I would recommend that you give it a try. As a result of reading these posts I myself (have had pretty bad colitis in the past) have now stopped eating anything with gluten and it has worked very well (I also never eat animals – yuk!).
    I was on the cyclosporin for a spell (with the other usual meds) and wouldn’t discount it again if required – though I get the feeling the doctors just want to cut out my gut, put me on a bag, and close the book on me – problem solved (there are only 8 people living in my country and I’m the annoying one with the troublesome condition). This isn’t going to happen though!
    Good luck to you,
    Peter

  5. Mvks1 December 15, 2010 at 8:20 pm #

    Before going ahead with surgery make sure you have Tried everything you can and you are satisfied that you gave your all and nothing has helped because once you have surgery you don’t want to think ohh I should have tried that diet or specific way of eating. Good luck in whatever you decide and know that support is here for you!

  6. Tamara December 16, 2010 at 7:06 am #

    I went undiagnosed with UC for 15 years before finally receiving a daignosis in mid 2002. The next 7 years I pretty much had one long attack that ranged from mild to moderate and sometimes severe. Once you have pan-colitis (UC through the entire colon) you are at a higher risk of requiring surgery and 25-33% of UC sufferers will need the surgery at some point either planned (2 step) or emergency (3 step). Late last year I got so sick and by the time I got to hospital I was in multple organ failure (heart and liver), end stage dehyration, required about a dozen or more blood transfusions, multiple blood clots on both lungs and host of other issues. After IV steroids and IV cyclosporin failed my colon burst and I barely made it out of surgery. Because it was emergency I ended up with two bags and not the one bag that most people end up with. If I had had the option to have the surgery years earlier I would have done it. Once you enter the pan colitis phase you are really be playing with fire. Surgeons and GI doctors will only recommend surgery as a last resort as they think you are probably in a high risk category of one day requiring emergency surgery. Having a plannned surgery means you will recover a lot quicker than after an emergency type situation. It will also be in a controlled environment and at least you know what you’re getting yourself into. I personally bellieve that if the doctors are saying you should get it, then this is a calculated decision that they have thought about as they want to avoid you getting in to an emergency surgery type situation. My surgery not only saved my life but has given me a much better quality of life. Also I want to add that more complications can occur after surgery if it was done in an emergency situation. I have had issues with my pouch however if my surgery had been planned I feel that I would have a lot less issues. I think you should do it.

    • love December 16, 2010 at 1:39 pm #

      Reid Bryant Kimball, i think i’m gonna start a diet.. By the way what is GAPS diet İ don’t know what is it.
      Melinda, i live in Turkey, but i might be contact with her via internet, i hope your son is good right now ;)
      Jessica, yes the diet is not easy but i have to try it :(
      Peter NZ, i’m happy for you.. but you have stopped eating gluten! ooh this is soo hard for me =( i have already tiny girl :)if i wouldnt eat bread i don’t know how can i do :)
      Mvks1, you are absolutely right! i don’t want to regret for my decisions..
      Tamara, as i can understand about your story you have already done everything you can do. i’m agree with you about doctor’s opinions.. i’m happy for you are allright :)
      Anyway.. Thanks for your supports, this is really important for me.. Now i’m good cause i’m taking prednisone (32 mg) :) i hate it but i love this drug, like a miracle and horrible, i can’t define it :) I hope you are feeling better i will pray for all of us. Love you =)

  7. Dede Cummings December 16, 2010 at 3:29 pm #

    Dear Love, I had to have partial bowel resection for Crohn’s disease in 2006, but I am in remission now, so that is good, but surgery should be a last resort! After my surgery I found out about the SCD and it really helped me ( I continue to use the diet for reference)…. I wish you the best and hang in there–it can be a very hard time when you are having flares that do not respond to medication, but glad things are stable now. Are you able to find a naturopathic doctor over in Turkey? One who can give you supplements, and help manager your disease with the other doctors? I, too, was on prednisone, for many months and it really helped. I did get diabetes from the prednisone, which was a bummer (gone now). I have to say that what Reid said is good: Why not try the diet while you can, but be very careful about the state of your health, i.e., don’t get dehydrated, etc. I hope you are continuing to get things under control with the 32 mg, but practice some alternative lifestyle changes: drink water, rest, yoga, meditation, acupuncture (go at least 4-5 times), Omega 3 is great and perhaps doing an elimination diet, or a moderate cleanse (3-day) will help. Good luck–we are all thinking of you.

  8. Reid Bryant Kimball December 16, 2010 at 10:58 pm #

    Love,

    GAPS stands for Gut and Psychology Syndrome and it’s based on SCD, but does some things a little differently. I need to read a book on it myself, but just wanted to let you know about it.

    http://www.gapsdiet.com/

    -Reid

  9. R.P. Tamhankar September 7, 2011 at 5:45 am #

    Please take following Homeopathic medicine

    1. Aleo Socotrina-200 6 pills 2 times a day
    2. Mag Phos 200x 4 pallets 2 times a day

    R.P. Tamhankar

  10. susan August 4, 2017 at 8:43 pm #

    I just got released from the hospital. They said I had UC. The first time I has Ischemic colitis. I was in the hospital for almost 4 day. I had to take a week off from work. That was 2012. Now Aug. 1st I was admitted again for colitis. They do not know if this attack was ischemic. They changed my diet to a low fiber diet which surprised me because I always thought that high fiber was good for you. I have to schedule apt with GI doctor but the DR I seen in hospital is not on my plan. You are so very young to consider removal of colon. You need to see as many GI DR. Keep getting oppinions. Some of my vitamins I have considered maybe not healthy with this condition I have. I have seen 4 to 5 different DR. Do not settle of one keep trying. I found they never gave me any stool softener during my stay in hos[ital. I gave them all my meds list. Well I suffered when I got home I had to use my usual stool softener went to store and bought a bunch of juice. Finally still week still pain but at least the pain is a litte less. I hope this has been a little helpful. PLEASE DO NOT SETTLE FOR ONE OPINION I WAS SHOCKED I HAD ANOTHER FLARE UP. SO I AM FEELING YOU GIRL.

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