HealingWell
Search Close Search
☰

Short lived SCD success?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/26/2016 6:31 AM (GMT -5)
Hi folks, fist post here. Diagnosed with UC severe pancolitis in 2015, tried salofalk/masalamine, cortizone, azathioprine with no success. Hospitalized for a couple of weeks in 09/2015 and started Remicade which put me in full remmission with the first infusion. Symptoms gradually returned in 06/2016. I started pentasa & salofalk enemas and eliminated sugar, coffee and alcohol from my diet with minor improvement. I had the Remicade antibodies test in 09/2016 which turned out positive. GI suggested to go for Entyvio. I started supplements (Boswellin, Curcumin, cod liver oil, D3, probiotics). I had a detailed stool lab test which revealed strong microbiota imbalance, total lack of several good microbiota strains and a full load of Proteus mir..

Then, I switched to strict SCD in late 10/2016 which got me into remmission within 10 days. I was symptoms free for a month and a half when suddenly, overnight, the gut gurgling returned, along with D & bleeding. This flare persists for a couple of weeks now. It's funny because the gurgling starts everyday in the afternoon and ends next morning when I hit the BM. The rest of the day, my GI is pretty quite... Not sure why this happened/happens and what to do... I'd much prefer to stay away from bios and their side effects. Any suggestions?
Posted 12/26/2016 9:00 AM (GMT -5)
Probiotic VSL#3 has been very beneficial to me along with diet mod. Nowadays I only take it when things get off kilter but when flaring it is a go-to supplement. Not covered by most insurance it will seem pricey compared to store bought probiotics but per billion probiotics it is well worth it.

Are you still using enemas? If not use them nightly.

SCD was a good start for me but my gut had additional ideas including no yogurt, no fruit or juices, very low fiber, very few grains. When I did what my gut told me to my symptoms got much, much better.

Good luck.
Posted 12/26/2016 10:15 AM (GMT -5)
What are you currently taking? Are you on remicade or entyvio? Being positive for antibodies usually means an increased dose will bring you back into response, did they increase your dose? Having antibodies to remicade doesn't necessarily mean you'll get antibodies to humira or simponi (other options besides entyvio).

Have you experienced side effects from biologics? Most do not. I've been on remicade over 3 years now without a single side effect.

You have severe pancolitis and have been hospitalized due to it, so please take it seriously, as that often requires multiple strong medications at the same time.

A month long remission isn't anything that's all that stable. A remission should last years when you've found a good solution. As an example, my last remission lasted 2.5 years.
Posted 12/27/2016 5:06 AM (GMT -5)
Thanks for the replies. My current meds are pentasa, mesalazine enema. Daily supps are boswella, curcumin, cod liver oil, D3 25000 IU and ~ 300 bil probiotics from the SCD yogurt + capsules. I am planning to try out plant tannins for the Proteus, enzymes and Mutaflor probs. Right now my daily BM visits are 2 with D & bleeding, plus loud gut gurgling that keeps me awake at night.

@ imagardener2: I tried VSL#3 before the SCD, without noticeable results. I hoped to get enough time to adapt my diet like you did, but it seems that I didn't get my chance.

@iPoop: While on remicade I experienced back pain, muscle pain, pneumonia (while I was on azathioprine as well), hair loss and mood changes. Since I quit the infusions all that disappeared. I was taking 5mg/kg like you do but at 8 weeks. It was a huge relief for me to find out that SCD works, and a huge disappointment to find out it stopped working just 1-1/2 months later..
✚ New Topic ✚ Reply