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One Week until Step One surgery!!

Chronic Illness Forums
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Ulcerative Colitis
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One Week until Step One surgery!!  
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Poopypantalones
Regular Member
Joined : Mar 2013
Posts : 51
Posted 7/2/2014 5:00 AM (GMT -7)
Embersglow1, I have a question for you. I noticed you haven't tried Humira, Entyvio (which was just released on the market), or 6mp.

Any reason why you elected not to try these drugs? I ask because Remicade failed me as well. Well actually it worked, but it left me with severe breathing difficulty for a week or so after the infusion so we had to discontinue it. Fortunately it knocked me out of my flare and I managed ok until now.... I'm in a raging flare again and am weighing my options.

At any rate I myself don't want to try any more biologics, not even Entyvio to be honest and it looks like if that's the case my only option is surgery. Anyway... I was wondering how you arrived at this decision yourself. My GI (who is absolutely wonderful) wants me to run the gauntlet of drugs and seems dismayed that I am suggesting that I am not trying every drug before doing the surgery route.
33 years old - UC diagnosed in 1999

Current Meds:
Asacol HD 2 tablets 3x daily
Remicade (first infusion 5/31/2013 discontinued in February 2014 due to serum sickness )
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Probiotic
Veteran Member
Joined : Mar 2007
Posts : 2832
Posted 7/2/2014 10:18 AM (GMT -7)
Best of luck Katie! I tried everything under the sun for years (incl fecal transplants- actually made me worse, didnt help at all) and with hindsight (which of course is 20/20 and wasnt at the time) wish i had skipped years of nonsense and got this over with, but you will soon have your life back, whatever surgery path you choose to do methinks. Extremely pleased with my end ileo and livig life to the full.
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb.
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FecalTransplantForUC
Regular Member
Joined : Feb 2013
Posts : 116
Posted 7/2/2014 12:30 PM (GMT -7)
Probiotic - glad you are happy with your decision. How long ago was it that you tried the fecal transplants before going ahead with surgery?

For anyone facing this illness I can understand the desire for a solution so that you can get on with your life and why surgery looks appealing. I know I didn't want to have to keep thinking about UC, the drugs, diets etc. I just wanted it to all be done. Surgery then looked quite appealing especially when if it appears to be the only option to life without a flare, however it is not. Surgery is also irreversible and offers its own set of potential problems - many of which you can find discussed on the Ostomy forum, problems that were understated by my doctors and might be for many others too. You also don't have to drag things out with this treatment approach, you would know soon after starting whether or not it would work and you could already be symptom-free long before you would have recovered from the 2 or 3 stages of surgery.

Fecal transplants for ulcerative colitis have worked for many on this forum who have posted their stories and their methods. In their stories you can find some variation in how long it took to see noticeable results and how long they did them to ensure lasting results. However for most of them positive signs started almost immediately even if they often continued doing them for several weeks and usually in combination with drugs and diet as part of the healing process.

I know it must sound completely unbelievable to anyone who has had it drilled into their heads for many years that this is incurable and that there is no hope - it was hard for me to believe. However there are a growing number of people who have been symptom-free for years with their colons intact even after very severe cases. This is the article I first saw which gave me hope and persuaded me to delay surgery to give this alternative a shot first, if for no other reason than to have no regrets http://www.cdd.com.au/pdf/publications/paper17.pdf

Another consideration is that the best time to have surgery is not at the time when you would most desperately want it - when your body has been significantly weakened by an active flare. I came to learn that in most cases if this is not a case for emergency surgery, then it can be postponed for some length of time perhaps indefinitely. When I was preparing for surgery the surgeon actually wanted me to wait until I could get healthier first to reduce possible complications and have a faster recovery. This included having a higher red blood cell count, higher blood albumin levels, and getting off Prednisone.

The irony is that by taking the steps to get healthy for surgery, including the protein shakes the surgeon recommended so I could recover from surgery, something that my GI doctors never told me about, and also treatment for depression, I ended up getting much better. This gave me hope to where I felt I could try one last alternative before surgery. Deciding to attempt that one last alternative, even after at one point believing there was no alternative, ended up making all the difference.
---
35 year old man diagnosed with Ulcerative Colitis in summer 1999. Avoided surgery by using fecal transplants along with prescription drugs and nutritional supplements June - July 2011. Symptom-free without medications, supplements or restrictive diets since December 2011! A talk show interview about my story is here: bit.ly/1hdqfbK
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embersglow1
Veteran Member
Joined : Nov 2013
Posts : 1612
Posted 7/2/2014 4:33 PM (GMT -7)
Got no time! Already spent a week in the hospital waiting for Monday to come.

I physically cant wait for any other drugs to start working or FT to get approved... or home FT to start working.

Im happy with my decision. I dont really have a choice. But am glad to get back to life! :)
Katie - 28 - 7-11-13 - pancolitis.
Flaring for solid year: blood, mucous, liquid poo only. PAIN. tenesmus. arthritis.

Prednisone - 10mg until surgery
Percocet 5-325 - 2 pills every 4 hours
Effexor - 75 mg
Xanax - 0.25 - as needed
Valium - 5mg for blood draws/IVs
Culturelle, S.Boulardi; daily.

Past meds: Remicade, Vancomycin, Balsalazide, Lialda, Prednisone, Uceris, Zoloft

Surgery #1: 7/7/14

Post Edited (embersglow1) : 7/2/2014 6:00:18 PM (GMT-6)

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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8436
Posted 7/2/2014 6:49 PM (GMT -7)
we'll be expecting some bikini pics now, thanks to beat ;-)
diagnosed with pancolitis december 21, 2003
in submission - no meds
current supplements: vit D, cal/mag, Wild Harvest Inflamma Shield -
no gluten, rice, corn, or soy & limited sugar - just good, healthy food, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with -
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