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My Last End Surgery…Yes or No?

This is my story, and my life as i know it at the moment.  I have had Ulcerative Colitis since I was 21 years old I will be 40 in February.

I have had flare ups 2 years on 2 years off, my entire life it would seem. I am now at the worst I have ever been the medications and the day’s out of work have increased over the past 3 months or so. I was recommended to have surgery and to take about 20 pills a day for now including hydrocortisone and rowasa, prednisone, 6mp. asacol, flaygal, I have a 3 year old son that sits beside me asking if we can go out and play, and I feel useless because of fatigue. I will most likley get the surgery vs going on bathroom trips every 4 hrs or so.

If anyone knows of any alternatives please let me know? i don’t think there are any new procedures that I may not of heard about.

My Medications: 6 MP SHORT TERM. CANASA for lower colon inflammation. asacol for maintenance therapy.

Thank You, Larry.

Submitted by “Larry” in the Colitis Venting Area

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7 Responses to My Last End Surgery…Yes or No?

  1. Princess PP September 13, 2011 at 2:13 pm #

    Ugh Larry, I also have UC and have had it for 1.5 years now. I’m on Remicade and (knock wood) it has worked for me. Have you tried? At first I feared the drug since the side effects read like “Contagion” but for me the benefits have outweighed any issues and so far I’ve not had any noticeable issues. I have a 2 and 4 year old. At my worst I was wearing a nappy just to save underpants and what was left of my dignity. I made up a lot of “inside” games we could play. I purchased “Breaking the Vicious Cycle” and read it though I have not attempted the SCD diet. Although it has worked for Adam the creator of this site. I wish you the best of luck with whatever you decide.

  2. OrdinaryWorldWhereRU September 13, 2011 at 5:42 pm #

    Has there been any consideration given for Remicade?

  3. Venessa September 14, 2011 at 12:17 am #

    I have had UC for 8 years now.. I thought I was having a flare up so I went to the GI dr.. she said there was no sign of UC.. Does anyone know if the visible symptoms in your intestines go away while in remishion.. the GI dr is the 4th one I have been to since I was diagnosed. and she is the first one that has said there was no sign of UC. BTW, the reason I have been to so many different docs is because I am AD AF and move a lot.

    • Hopskotch September 15, 2011 at 10:44 am #

      Hi Vanessa. Yes, apparently the visible symptoms can go away when in remission. A couple years ago, when I first started with new doc, he did a colonoscopy and told me right after, “It looks completely fine. I’m not sure you really have colitis – you may have been misdiagnosed.” I explained to him that I’d seen my previous colonoscopy photos and it was pretty clear. Anyway, at my next appointment he said the biopsy results had come back and showed the colitis scarring, so at least he believed I had UC! So yes, I guess sometimes they can’t see it if you’re in remission.

  4. Shelly September 14, 2011 at 5:20 pm #

    Hey Larry, Don’t press the panic button yet! I’m 43, diagnosed at 15, been through pretty much all the meds. and am allergic or intolerant to all except the couple of very experimental ones I’ve yet to try. Remicade did help me for 3 very good years(Until I became allergic-but I had a higher dose every 4 weeks) and Humira even worked to get me out of a VERY severe flare(with pred.) this past winter even though I am allergic to that! I do think it is important to research meds.(premeds to go with remicade and discount programs for remi. and humira) I also take VSL#3 PRESCRIPTION strength-which I know got my bleeding to finally stop-get the Dr. to write for 4 packets-you can take up to 4-work up slowly-it has 900 billion per sachet http://www.probiotics-lovethatbug.com/vsl3.html (I couldn’t get the link in-scroll down to DS for codes for Dr.-very cost effective for the amounts we should take! I also do something close to SCD-eliminate processed foods, soda, etc. and really watch what you eat and read up on SCD and others-exercise and reduce stress like Adam says!! I hope this helps(brief reply with lots of info.) Happy to give more if you need it. Good luck & Good health :)

  5. pernita September 14, 2011 at 10:21 pm #

    i Larry,
    i am pernita aged 39 from india and i suffered from uc from last four years. was on heavy doses of steroids.
    i tried homeopath (my mom in lahw is certified homeopath),ayur veda , meditation rieki …you name it and i have been through all options. finally my GI told me that my only option left is surgery or there is no hope as all medicines were failing on me. so on 31 may i went in for colostomy . i was scared as i have 2 very young daughters and with uc my life was totally cramped. last thoughts on operation table were “plz God bring me back as my kids are too young to be on their own. they need me so i want to live.” all went smooth as i recovered fast (docs says my age factor and sheer determination was the key to speedy recovery.)TRUST me when i tell you that my life after 3 and half months of surgery is 100 times better than when i was suffering uc. from last one month i started my walks and now can walk for 3 kms daily and do lil bit of yoga and meditation.i feel fit and am now taking care of my kids and husband like my pre disease days. so my advise is to go for surgery without doubt. GOD MAY BLESS YOU.
    pernita suri

    • Abraham September 15, 2011 at 6:33 pm #

      Larry, I’m 24 yrs old and I have litteraly gone through every med for UC. I have been with UC for almost four yrs. At the moment I’m taking 8 tablets of prednisone, 8 balsalazide, 2 of Azathioprine, and two of Dicyclomone a day….I have also taken Azacol Canaza, and So many more that I forget so many names….I am so tired of all this medication. I love to workout and run but fatigue seems to be my shadow. A lot of people have recommended remicade but I have heard that after effects are always present. As it is right now, I’m retaining liquids, I drink a lot of water and take a long time to urinate. My skin at times is yellow, beich, ir even pinkish….. I am also losing my hair. I have heard of various situations that people get surgery and their life changes completely to the good, but again I have heard that surgery is the last option. Sometimes I think that gastros don’t want to refer a person to surgery because they will be losing money. At least my gastro has had me waiting for so long and I feel that he just wants to give me more medication!! I’m so tired of all the medication that I take on a daily basis. Gastritis is present throughout my day due to all the meds that I take. I am planning on the surgery. I want to have a normal life once again and hopefully the surgery will grant me that like pernita . :)

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