Simponi Failing – Tofacitinib or Surgery

Meet Amit:

I’m a Program Manager at large credit card company, 47, male, Chicago, Ulcerative Colitis diagnosed in 2009, married with two kids and otherwise a healthy human being. On my 6th drug for UC out of a possible 7 or 8 per my GI and potentially nearing surgery decision.

Some more about Amit:

I sold my first web page to mortgage broker in 1996 using Netscape 1.0. My favorite instrument is the tabla and I like reading my kids’ novels that they read for school.

Current Symptoms:

10-15 BM per day. Abdominal pain after most BMs. Food intake triggers BM. Blood in stool.
Scope in March of 2018 – completely clean / full remission, 40 biopsies all negative from colonoscopy.
Traveled abroad.
Flex Sig in May 2018 – moderate colitis, biopsies positive.

Amit’s Ulcerative Colitis Story:

I was diagnosed with UC in 2009 as I was starting my MBA program while working full time. It was stressful as my kids were small and required a lot of attention. Stress was high. I have been hospitalized 5 times for it requiring IV steroids. Seemingly each hospital stay required a new medicine. I have also visited Mayo Clinic for 4 days and the University of Chicago GI dept.
My doctor informed me on my last visit I may need surgery as Simponi is not working, Humira is in the same class as 2 other drugs that failed and Tofacitinib is only been on the market here for 10 weeks.

To those that chose surgery – would you have tried anything before that which is available today such as fecal transplants, drugs just approved like Tofacitinib (25% rate of shingles in patients), or serious alternative therapies.

My doctor is well versed and head of the dept of a major hospital and still will not EVER address diet in anyway. Previous GI’s have told me that since I am on the meds I can eat whatever I please.
I am still very shocked that they would choose not to empower their patients with materials.
http://www.crohnscolitisfoundation.org/living-with-crohns-colitis/bookstore.html
Perhaps this is specific to the doctors in the US as I have asked doctors about reducing inflammation with turmeric and their response if I am lucky is, “There is no evidence proving that would help …”

Is there anything you might ask your doctor to try besides surgery and medication??

Are there non-allopathic clinics or healers you would recommend for someone at this juncture?

Currently taking Simponi, Imuran – 50mg, Lialda, Canasa, Tramadol, and was asked to get a Shingrix shot in preparation for the newest medicine approved for UC – Tofacitinib. I am 1 or 2 meds from surgery and want to be prepared to make a decision.

Medication History:

Initially, Lialda (mesalamine) worked just fine for a few years. After the 1st hospital inpatient stay Imuran was added. After another stay 6MP was added and the blood tests which are periodic determined it was causing liver toxicity. After it was determined immunosuppressents were not working – I was introduced to biologics as the next line of defense – First Remicade then Entyvio and now Simponit (after a hospital stay). Currently w/ Simponi I still take Lialda and Imuran as part of combo therapy. This current regime is not working and I have been in a flare for 2 months. However, on my last visit my doctor mentioned surgery. It was the first time ever and he asked me to “not look depressed” and the alternatives were – Humira would have a 10% chance of working or Tofacitinib which something I would like to have feedback on from anyone on this site. So my options are increase frequency of Simponi which I am starting today, Humira (low success rate for me), Tofa citinib (little data on this) or surgery which my Dr. believes will improve my quality of life. After reading about the procedure and still going 6 times/day + potentially more meds I am not convinced.

written by Amit

Submitted in the colitis venting area




7 Responses to Simponi Failing – Tofacitinib or Surgery

  1. Rosanne
    Rosanne Robinson August 31, 2018 at 3:23 pm #

    Wow! I was stressed reading about you in 2009!

    I have jhad UC since 1982 diagnosis.
    Fortunately no surgeries.
    Probably 6 years ago After years on prednisone and sulfasalazine…I was put on mercaptopurine, prednisone and Apriso. Knock on wood I have been symptom free. I believe the mercaptopurine is responsible for this and I stay on 5mg prednisone. After 37 years the prednisone hasn’t done any harm that we can see other than I have high cholesterol.

    If I flared bad again…I would definitely find someone that would do a fecal implant! I don’t believe I have read failure stories. With you having young children you probably could find a family that would donate a diaper supply to you! The new drugs scare me! To many possibilities of reactions that are bad.

    I wish you luck!

  2. Lari Anne August 31, 2018 at 3:30 pm #

    Wow – You have been through a lot in a short time. Have you tried Uceris Topical in conjunction with a biologic? Have you tried VSL3# several times per day and supplement that with Florastor and L-Glutamine? I have had UC since 1998. At first , not too bad. Then BOOM – the tsunami which became pancolitis in 2006. Since then I have really struggled and I have taken way too much prednisone :(

    As for diet – I do as much with smoothies and soups as I can and then supplement with “real food” at dinner. In my case, mornings are much harder. By evening, I can eat reasonably.

    Ask your doc about the Uceris topical. I just recommended it to someone else and know it’s helping her. Be your own advocate and if you need a sub-totalcolectomey – jpouch – it might be the best answer for getting your life back. I have a friend who did it 10 years ago and she now travels and doesn’t worry much about it. But, get at least two opinions before you go that route. God bless!

  3. Ana August 31, 2018 at 10:08 pm #

    Hi Amit,

    What kind of diet you’re currently on?
    In my case, SCD made a huge difference in recovery.
    Why not trying FMT first? They do it in Vancouver, that’s closest to you. Watch the interview with Dr. mark Davis here on this webpage.
    I highly recommend a book by Don Makowski, “The doctor said what?” Where the author explains how he did fecal transplantation at home and improved his health.
    Take care,
    Ana

  4. Jo September 2, 2018 at 5:40 am #

    Hi Amit,you really have been through alot. I am so sorry.
    I too tried all the meds and I only became worse. Mayo recommened the Fodmap diet, and one doctor explained how to do my own fecal transplant (FT) at home. I did the SCD (diet) 2 years while trying the variety of drugs, never did the FT ( my insurance would not pay for it unless I had CDIFF 3 times and I was too ill, and without the money to travel outside the USA to do FT).
    I only had UC for 5 years, but the last three years were devastating. Three 30 day hospital stays, many visits to the ER, and medicine roulette. My health was in ruins and there were no more meds to try.
    I had surgery (colectomy). Due to my age, the odds that the J-Pouch my also fail, and the odds that I might still needs UC type meds, I choose to to remain with an ostomy. Two years post surgery I finally felt healthy, I have traveled extensively without worry, and work out daily. My GI recently asked if I wished I had had surgery years earlier. He did so because the meds, especially prednisone, has given me severe osteoporosis, I had to quit my job, and active UC caused me years of sickness. My answer was no. I am a person who had to do everything before I would allow someone to cut out part of my body.
    Having an ostomy is still strange ( heck, a bit of my colon will always stick out of my abdomen), but I got used to it. I have my life back. I take supplements, especially Calcium Citrate with D, work out daily, still eat very carefully, and have gained bone mass on some parts of my bone structure, but no more bone loss. It isn’t an easy decision to choose surgery and if you are like me and need to try everything before you would choose surgey, then you must dedicate yourself to do everything you can to regain your health now. This includes a change of diet ( Adam and others here give excellent advice), stress reduction ( a good Counselor is very helpful), a great GI that really understands that what you put in your mouth affects your body function, etc. Make your health your first priority because poor health affects your relationships, your happiness, your career, your whole lfe. If you have tried everything like I did and UC is still kicking your butt, surgey is an option.
    I wish you good healthy and a long, happy life

  5. Allison September 6, 2018 at 4:27 am #

    Hi Amit, your story sounds a lot like mine.
    I was having 3 severe flares a year, each flare 3 – 3.5 mnths each flare so just a few weeks in remission each year. Losing massive amounts of blood.
    Steroids stopped working. Tried Azathioprine (rubbish) then biologics ( allergic reaction)

    Read Breaking the vicious Cycle by Elaine Gottshall. Tried the scd diet for a while, but most importantly I started to make the scd yogurt and have it for breakfast every morning since August last year. Complete remission ever since. I am on no drugs whatsoever and eat a healthy diet. Considering i’ve had this diease for 11 years with the last 5 continuous severe flares its like a miracle!!
    Please try the yogurt, get the equiptment and do it!. I was facing surgery this year too… not now

    I wish you good luck

  6. Julia Metzler November 20, 2018 at 6:38 pm #

    I’m just about to have my second and final J Pouch surgery. My surgeon does the variant 2-stage J Pouch, where the colon is removed and an end ileostomy formed in surgery 1 and the J Pouch built and connected to the anus in surgery 2.

    Gotta admit I’m not a fan of the ileostomy, but I can also say I feel 100 times better without a colon than I did with it. After seven years and poor response to the SCD, mesalamine, sulfasalazine and the biologics I decided to go ahead with the surgery. Plus I’m very fit for my age (55) and I figured I’d rather do the surgery before I get a lot sicker or a lot older. The end game looked like surgery eventually anyway, so why go through more bloody painful poos, IV meds, colonoscopies and hosptializations for 5-10-15 years?

    Currently I am on zero meds, which is awesome. No longer worried about long-term side effects of the meds (like, say, will this give me cancer in 20 years?). I have zero pain, which is amazing. I do miss a lot of sleep ‘cos of the ileostomy, which will continue with the J Pouch. But I had the same problem with UC, plus pain.

    Right after the first surgery I was wondering if I made the right choice, but now that I’m feeling well again I am sure I did. And think I would have wound up here anyway.

  7. Lorena Ojeda November 20, 2018 at 11:34 pm #

    Jo gave you the best advise. Try the diet. I’m on remicade now and the diet helped me regain full remission. Nothing to lose!

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