No End In Sight

Introduction:

Wrote once before about my son who has severe UC. It had been 1 1/2 years since on set of UC. He has been on Apriso, Imuran, suppositories, prednisone for almost this entire time, each time working his way down on predinose, getting below 15 and UC getting worse each try. Starting back on 40 again. Now they have put him on Humira, 40 mg injector pens. Did the initial starter pack then every other week. Started to feel better, then UC started getting worse again. Now he is on shots weekly,plus Apriso and Imuran. Has started feeling better the last week. He also went to the Mayo Clinic in Minnesota.  Nothing different other than keep taking the medicine.

How many other UCer’s are taking Humira along with Imuran and Apriso?

Colitis Symptoms:

Currently not bleeding but colon is not happy towards the end of each week before next shot is given.
My Son’s Current Colitis:
Most worried about taking Humira along with Imuran and Apriso and wondering if other patients have taken all 3 of these medications at the same time, and if so how did it help the patient. Has any one heard about pig worms being used in Europe for helping UC patients and has any one tried them in the US? Heard they are helping the patients in the trials being done. Having trouble getting insurance approval again for the next 6 months, because Humira is not listed as a drug for Ulcerative Colitis only Crohn’s disease.  How long have patients taken Humira, and is it a life long drug, once you start, can you ever stop taking it without the disease coming back? I guess they need your life history to approve Humira. Have spent alot of time trying to get prior approval again.
We are constantly researching UC and trying to find other things to try and put it in remission.

We have been told by all 3 of our doctors,

that diet doesn’t play a part in the disease ,

but when in a flare to go easy on certain food items.

3 gastro doctors

How many people have been helped by the SCD diet? My son says his diet doesn’t have anything to do with his disease. If Humira doesn’t keep working, will probably have to go back to the Mayo Clinic, hopefully new things keep being found to try and put this awful disease in remission. Patients need some hope for remission, or life wouldn’t be too nice. I read all the letters to see if someone can come up with other things to try and discuss with physicians. Thanks to everyone who writes and hopefully someone will read this and try some different options, or at least talk to your physician about new alternatives.
Where we’d want to be in 1 year: 
In remission and off some of this medicine or all of it.
Medications:
Apriso worked some when first diagnosed, along with prednisone, then stopped working, started taking Imuran and Apriso along with prednisone. Imuran made him feel bad. Stopped taking Imuran. Now on all 3 meds.
written by “Worried Parent”
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submitted in the Colitis Venting Area

Tags: apriso, Humira, imuran, Mayo Clinic

11 Responses to “No End In Sight”

  1. HopeApril 15, 2012 at 5:47 pm #

    I am a 40 year old female who has had UC for the last 8 years. I have been on Imuran for the last couple of years and it has worked really well for me, I haven’t had a flare up for about 4 years. I don’t know what the SCD diet is, but I agree with your son in that diet has nothing to do with my disease, I have a very healthy appetite and eat whatever I want!

  2. AdamApril 15, 2012 at 6:21 pm #

    Dear Worried Mom,

    Your son and your situation reminds me exactly of what my life was like 3 years ago. It’s hard for me to forget as it was one of my least favorite time-periods with UC. Your story brings back horrible memories, but I must thank you, because you are a huge reason that this website keeps running.

    You wrote:

    “How many people have been helped by the SCD diet? My son says his diet doesn’t have anything to do with his disease.?

    Just like the doctors that are telling you what they think about diet, your son very well might be right.

    I started this website after getting back from the Mayo Clinic in Dec 2009, at that point I had been using the SCD diet to treat my disease for several months and was off all medications. I went to the Mayo Clinic funny enough, to find out when my Humira side effects were going to end. The three different doctors I consulted with on that had 3 DIFFERENT answers…but anyways, my skin eventually did stop falling off, and there’s a few stories about those details on the site, here’s one: http://www.ihaveuc.com/side-effects-from-humira/

    Doctors are very very smart people. Some of them go to college and medical school for over 15 years(if it takes you 15 years to learn something, it’s either got to be real complicated or you must be a complete idiot, so lets assume the first option…). They are powerful in influencing decisions and thinking, that is their job, and part of being a doctor(I think we can all somewhat agree on that). If I listened to my “very very good doctors” back in 2009, I would no longer have a colon, which may or may not have been a great move. (Many people have had colon removal surgery and almost 90% of them have felt it was a great decision: feel free to read the UC surgery Survey page – IT’s GREAT NEWS: http://www.ihaveuc.com/26-colitis-surgery-patients-survey-results/

    I don’t think I’m some random case of a UC patient who has had amazing results with using diet? But maybe?
    Maybe the hundreds, or thousands or probably hundreds of thousands who use some form of diet modifications/probiotics are totally in denial and not seeing straight about the benefits they are receiving….Again, I don’t know for sure what’s going on here. There always have been, and always will be doctors and also UC patients who disagree on this question.

    But I can assure you that my GI doctor was shocked when he went into my butt hole with the sigmoid scope after I was medication free back in November of 2009 and said my colon looked clean! He actually thought the medications I had STOPPED taking had finally STARTED working???? (doctors are smart, but sometimes they can also be stupid, or simply make no sense at all, and that’s part of being human)

    I remember thinking the same exact thing as your son about diet. I did that for one year too many, and unfortunately it was the first year after my diagnosis when I was the most severe. And the reason I thought diet had nothing to do with my poop, was simply because “that’s what my doctor said”. Simple as that. I’ll bet your son thinks exactly like I did. If he lived out here in Berkeley, CA, I’d want to have a coffee with him, because I’ll bet we got alot in common.

    No matter what, more than anything else, on behalf of the rest of the UC’ers of the world, I wish you, YOUR SON, and the rest of your family the very best. UC when it’s not under control is a complete living freak show, and I’m sure you’re living the ongoing disaster. Just remember, it doesn’t go on forever, and eventually you all will be back to normal.

  3. GaryApril 16, 2012 at 1:55 pm #

    To Worried Parent….

    I would vouch for the diet idea, not necessarily SCD, but recognizing what it is you are eating that is causing the immune system to fire up….I am on Infliximab every 8 weeks and have a great GI Doctor here in Madison…I also take Budesonide and Asacol one tablet of each daily…I am 65 years old and have had UC for about eight years…currently I am in remission and hope to continue that way…I also get my fiber every morning buy taking a teaspoon of Metamucil…I agree with Adam,the Docs are challenged by this disease…one thing for positive, get off the Prednisone if at all possible and stay off…this is the worst treatment I can think of and any Doc that continues to push it is only looking for an easy way out for a short term solution, with little benefit to the patient, only future issues such as psych problems, bone density problems and a speed-up of arthritis…wishing you and your son the best…

  4. shelly in maineApril 16, 2012 at 3:41 pm #

    Worried parent…more worries. Last year there was an updated warning for teens/adolescents on increased risk of hstcl when using tnf blocker and other immunosuppressors. I would be remiss if I did not pass this info. on to you. It was posted on the ccfa site under headlines. And like Gary said…prednisone is not supposed to be a long term Med…I can speak to this because I have been through all the meds. And now fortunately or unfortunately am allergic and intolerant to all, have osteoporosis due to having UC diagnosed since I was 15 and an now 44, been Med. Free since this summer and struugling right now. On vsl 3 Rx strength and trying to get back to my close to if not sCD diet…I think it is worth doing to save your son’s colon and decrease the risks of cancer and all the other potential side effects. I don’t envy your job as a parent…it’s been a struggle to make these decisions as an adult for myself…my dad and great gastro Doc. Made all my decisions as a teen/young adult.
    Read and research as much as you can. I’m not saying there is any one answer or that everything that works for some doesn’t always work for everyone. Look into probiotics…Adam’s research, Google…rhereis tons of info. at your fingertips. You should make sure to read that updated warning and discuss it with your doc.
    I wish you and your son all the best! Shelly

  5. BevApril 16, 2012 at 5:52 pm #

    Dear Worried Parent,

    You are so very wonderful! The best…

    ‘Patients need some hope for remission, or life wouldn’t be too nice’…that makes me cry! You just put into words the hopelessness and helplessness of this disease. Good for you…and you don’t even suffer with it! Thank you for the kind understanding of how all we sufferers feel.

    I have not heard of these pig worms, but I hope it’s promising! Any way to treat this disease naturally would be MEGA!! If you hear any more about this, please let us all know.

    Lastly, I really admire you. I actually HAVE the disease. If my son had it, I think it would be WAY harder. Cheers to you…

    Bev:)

  6. BronnyApril 19, 2012 at 2:19 am #

    When I have a flare, there are foods that are obviously irritating to my gut. But, when I am not having a flare, there is virtually nothing that causes trouble, including the same foods that were previously causing trouble during the flare..

    so … I would say that it is both true and not true that the gut problems are related to what you eat.

  7. JeffApril 20, 2012 at 9:07 am #

    I can certainly relate. My family on my mothers side ie Aunt and both Uncles have either Crohns or Colitis. Somehow it skipped my mother but was passed on to me. I went most of my life with it undiagnosed until I was about 25 when I finally went to a GI. They diagnosed it as mile to moderate UC and started me on Asacol, Pentasa etc.. I also started on a 40 mg dose of prednisone. This got it under control and it was in remission for years. Now for the past 5 months it’s back with a vengance. Prednisone doesn’t seem to be working this time around. My doctor keeps pushing remicade and azathioprine but I’ve been reading up on that stuff and personally I think the risks outweigh the benefits. My diet isn’t exactly the most health, sometimes tend to eat burgers and fries more often than not so I will start by eliminating that. I’m going to try everything before even considering those heavy drugs.

    Any other ideas?

    • Polly
      PollyApril 20, 2012 at 10:26 am #

      Hey Jeff,

      I am also against taking the heavy drugs… I realize that they do work for some people and some people can stay in remission for years, however, I personally just don’t think it’s a good idea to purposely weaken my immune system.

      My Doc just told me to start taking PSYLLIUM 3 times a day. (“Powdered Psyllium Husk Certified Organic”) The first couple of times you drink it, it tastes pretty nasty, but now I’m used to it and it’s OK.
      Maybe you want to look into that and give it a try? Here’s something I found online: “In one study of people with ulcerative colitis, psyllium was as effective as the prescription drug mesalamine (Pentasa, Rowasa, Asacol) in maintaining remission. However, for some people with IBD, too much psyllium can make symptoms worse. Work closely with your doctor to decide how much fiber is right for you.” http://www.umm.edu/altmed/articles/psyllium-000321.htm

      You may also want to try a gluten free diet… definitely start ditching the burgers and fries. ;)

      You could try Psyllium, Vitamin D, Fish Oil, a Probiotic (such as “Primal Defense” by Garden of Life), Tumeric, and/or other anti-inflammatory supplements.

      Best of luck!!!

      • OrdinaryWorldWhereRUApril 20, 2012 at 5:43 pm #

        Well the psyllium is what sent me into a terrible downward spiral so that I will never do again. I only tried a tiny amount but I should mention that my entire life I have never been able to eat whole grains of any variety without it tearing up my system. Also, the remicade has shown no side effects for me yet and has really stabilized me. I was in remission for a brief time and I could eat normally the entire time. While I am not in remission, I am pretty restricted regarding my food choices.

        To the Worried Parent:
        I agree with the observation that while not in remission, you have to be on guard about what is too much for the gut to handle. Since everyone is different, it means painstakingly and slowly testing what works and what doesn’t. The Mayo Clinic website might give some good starting points. For me, the burgers and fries are one of the few things that I can eat. My burgers are on seedless white buns with mayo and the fries are baked in the oven. I can safely do proteins and starches, no whole grains though which I have never been able to do.

        Even though SCD didn’t work for me when I tried it, I would advise at least trying it because you won’t know until you do and it gives you a structure to follow. I wish it would work for me since it has a lot of great food choices available. There is a website: pecanbread.com that is SCD geared towards children. Lots of great info there. Also there is a book called Breaking the Vicious Cycle by the creator of the diet, Elaine Gottschall.

        My doc did 1 heavy course of pred and said no more. It was just nickel and diming it for me.

        I sincerely hope that you find something that works for your son.

      • JeffApril 23, 2012 at 4:53 pm #

        Polly, thanks for the reply. I’m going to see a new doctor and will mention the psyllium. My main concern with Remicade as it hasn’t been out long and serious / fatal side affects have already been reported. And this is aside from the affects that Adam spoke about in relation to Humira which is a similar immune suppressing drugs. Heck just listen to the commercial for this stuff. It also seems like my doctor won’t explore anything else at this point. I’m starting to think he just wants the get the insurance money for the super expensive infusions.

        I purchased the “Breaking the Vicious Cycle book” so might give that a try. Will let you know it works out.

        Thank you.

  8. Anne in CAJuly 16, 2012 at 11:04 am #

    I am sorry to be so delayed in responding. My daughter has Ulcerative Colitis and Diet definitely plays a very important role. We had her IgG antibody responses to food tested at Sage Laboratories in Florida. As long as she avoids those foods and we rotate all other foods she does great! EGGS and DAIRY are really bad for her. She starts bleeding within one to two days, even if she has gone for weeks without any problems. If we get back to her avoidance diet and rotation, then she is fine. Happy to talk to you more if you would like. It is not easy, but it is possible. abjacobs@sensomotor.com

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