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Humira, SCD, Low Residue, & 2nd Opinion

Some Quick Info About Me:

Hi everyone – I’m Jonathan. I’m 31 years old living in Nashville, TN. I was diagnosed with UC in May of 2011, and have been experiencing varying levels of an active disease ever since.

Some more about me:

I’m married with no kids, and this disease hit me like a freight train. My wife and I enjoy running and my first flare came after a period of heavy distance running. I also had some high short-term stress at work at the time, and I believe the combination of the two caused my UC to surface. After the initial flare, I went a year with only mild symptoms and only taking Lialda. I had another severe flare in August of 2012, and since then I have been on a roller coaster of Meds and severe UC. I tried Remicade in Nov-Dec; 3 Infusions- I had no relief and severe “serum sickness” after the 3rd infusion that landed me on disability for 2 months. I started Humira this week…

Symptoms:

My current symptoms:
loose stools and diarrhea. No blood or mucus for now. Rising frequency and high urgency. Rapid weight loss.

Other symptoms I’ve had:
Blood and mucus, severe/massive swelling in my feet and hands (very painful)

Humira, SCD, Low Residue, & 2nd Opinion

After the Remicade debacle, my GI put me on prednisone, recommended Humira, and got me into the IBD Clinic at Vanderbilt University for a 2nd opinion. Vanderbilt has some of the most respected dr. in my part of the country, and I wanted to share some of their advice. My exam at Vandy consisted of appointments with a Psychologist, Dietician, and GI. The GI thinks I have two options, Humira or surgery… I’ve started Humira. She told me that Humira and Remicade are completely independent of each other. There is no guarantee that either will work, but no relation where if one doesn’t work on the other.

I started the SCD diet on Jan 5 and followed it for 6 weeks before speaking with a dietician. The Dietician said that the SCD has way too much fiber to eat while having inflammation in the colon, and can hinder the colon from healing. She suggested I try a “Low Residue Diet” which is almost the opposite of SCD! Less than 13g of fiber, no raw veggies or fruits (except bananas and melons) no grains, only white bread and white rice. Also, 2 ensure “muscle shakes” per day which are high in sugar. She did say it is better to limit the amount of sugar. The SCD was hard to adjust to, but I really enjoyed it after a few weeks.

I’m trying the LR diet for a few days now, and diarrhea is starting again. While on SCD I was having 3-5 soft stools (not D) and sudden/high urgency. Now I’m going 5-7 times with diarrhea and gas, but I seem to have a little more warning now. Also, I’m trying to gain about 20lbs.

My theory is that SCD is a good way to maintain remission, but maybe not a way to promote healing from severe inflammation. Also, I saw a Rheumatologist because of massive swelling in my hands and feet which are part of my UC (I thought it might be Rheumatoid Arthritis) He said that the if it was RA the swelling would not go away on its own (it would last 2-4 days and go away). This turned on the lightbulb for me that my colon is inflamed and will not go down on its own which is what UC means. If I am fortunate enough to find remission, I plan to go back to SCD to maintain.

The psychologist was interesting… our conversation focused on coping with the fact that UC is a chronic disease and needs to be treated as such. I know from my own experience and by reading stories here that we all kind of think this will go away without these medications. I’ve spent a lot of the last 2 years in denial!

Two Questions that I have:

  • Is anyone trying a “Low Residue” Diet or spoken to a Dietician about what you should eat? The Dietician told me fiber is like a brush or sandpaper against the colon wall which isn’t good while inflamed. I have read Adam’s book and Breaking the Vicious Cycle.
  • Is anyone having success with Humira?

Where I want to be in 1 year:

In remission and discussing when to stop Humira. I believe that remission can be maintained through lifestyle adjustments, but I’m not convinced that remission can always be found though lifestyle changes alone.

I know this website promotes natural treatments for UC which is what I want. I was very hesitant about starting Humira, and I really, really hope that it will work and I can stop taking it after a year.

Medications:

My current medications:
Prednisone, Lialda, Humira, vitamins, calcium& Vit D supplements.

Other Meds I’ve tried:
Prednisone, Imuran, Remicade

written by Jonathan

submitted in the colitis venting area





5 Responses to “Humira, SCD, Low Residue, & 2nd Opinion”

  1. joannaMarch 23, 2013 at 2:01 pm #

    hey jonathan. i’m confused about what you mean that SCD is high fiber. SCD is extremely low fiber. did you read the whole book or just parts of it? the whole basis of the intro is no fiber- just eggs, yogurt, dry curd cheese, meat, soup. you can do pureed carrots and such, but it doesn’t include leafy greens or nuts in the beginning. you introduce them IF your diarrhea and symptoms are getting better. if you add them in too soon, it obviously will make your symptoms worse. focus on low residue foods like the ones mentioned above.

  2. shelly in maineMarch 23, 2013 at 4:25 pm #

    http://pecanbread.com/p/how/stages.html. and http://scdlifestyle.com/2011/03/what-to-do-when-the-scd-diet-isnt-working/

    This should help. You should have a good quality probiotics and/or make the SCD yogurt. Be wary of “regular” carbs suggested on low residue diet, processed foods, soluble vs. insoluble fiber. A regular dietician may not understand the complexities of UC…clearly that one does not…those ensures are loaded with extras and sugar like you said..irritants…white bread…processed garbage! I do SCD about 95% now.

    Everyone’s UC is different. There definitely is not one answer. You may be intolerable to things you don’t know. Try to keep a journal of all foods, bms, etc. Only you know your own body.

    The arthritis is usually periphery and is but 1 of a list of many EIMs of UC.

    One cautionary piece of advice…you generally cannot return to a Med like remicade or humira…your body will most likely reject it.

    Keep reading and researching and questioning…knowledge is power and you are on your way!
    Best, Shelly

  3. RichardMarch 23, 2013 at 8:10 pm #

    Hi Jonathan, im in kinder in the same boat as yourself. I am 31 in april this year and I have had UC since I was 24 due to a hard working lifestyle. I can not offer you any help with drugs or diet or your best options but I can share with you some hope. Im still looking for the magic cure or something that will work to settle me down as 5-7 trips a day is very standard for me anyting from 7-10 on bad days. Now my Father who is 66 this year he had UC in his mid 50’s not sure when and suffered for a few years and he never stopped working 12 hours a day. He cured himself with no help from doctors or google :) but with pure determination and cycling each day to work 8miles and 8miles back plus working 12hours. He also changed his diet taking less bread, less meats, nothing cooked in oil and no high fiber breakfast and more pasta, tuna.

    So my father cured himself 100% he drinks beer everyday with no fear of UC, I do believe his UC started from real life stress and a single parent of 3 kids (2 at home). He also worked as a fireman on call (on top of working long hours as a engineer).

    My younger sister also has UC she has lived with it longer than me when she was 11 and she is 28 this year. She has energy problems and flare ups still but is able to battle on and she looks well most of the time.

    I am at this point waiting for some blood results for the all clear to start taking Humira and if I get any good results from this I don’t mind posting here.

    The only advise I can offer is anything you read that might have worked for someone may never work for you, you must underline FOR YOU many times but never stop that from trying everything for yourself.

  4. Lara
    LaraMarch 23, 2013 at 10:34 pm #

    I’m sorry you aren’t feeling well. My GI put me on a low residue diet for several months during a severe flare. It really made me feel a little better. I guess it was because my colon was healing & the foods I ate weren’t aggravating me as much. I stuck to a few foods & ate 5 small meals per day.

    I will say that it was hard for me to gain weight while on this diet. However, once my colon had healed enough I was put back on a regular diet & I gained weight quickly.

    Try to stick to the low residue diet. It can be tough to follow, but it will be easier for you to digest. And maybe try eating several small meals daily. That could also help. Feel better!

  5. BethMarch 24, 2013 at 12:03 am #

    Hi Jonathan. I’ve had kind of the same experience you have with diets, at least lately. I was diagnosed 2003 with UC but it was mild enough for the first 9 years that playing at the edge of the SCD worked well to get symptoms back under control, but last fall, the bleeding got out of control, and even a couple of weeks on nothing but the basic chicken soup recipe just made my diarrhea much much worse – couldn’t handle anything. Started the meds, which worked, and then didn’t; tried the low-residue diet, down to nothing but rice at one point, which slowed the diarrhea but then – this I think is critical for me and maybe for others with this food sensitivity – worsened my bleeding symptoms to fever and a stay in the hospital. I’m thinking that the conversion of sugars, just as in the SCD book, was the problem. So, I started eating very soft but SCD friendly food – just scrambled eggs and well-cooked seedless skinless veg, maybe chicken thigh meat which is fatty enough to be moved through easily – and this is helping me. Maybe it will help you too. It really seems like everyone’s triggers – and everyone’s solutions – are individual. Best of luck to you. It sounds like you have a lot of good medical resources there!

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