Sick and Tired of UC!



Intro:

40 something woman who was diagnosed with UC in March 2013. Until UC, I have rarely been sick and have taken very few medications. In November 2013 they discovered I also had C-Diff. I spent much of 2013 in the hospital and was on huge doses of prednisone. I tried several medications and none seem to work for me. I tried SCD/GAP and am still on the diet but it too is not helping me to the degree I had hoped. I have been on several enemas–none helped. Asacol, Prednisone, and Imuran. I’m now on Remicade but after 2 wonderful bloody diarrhea free months, it’s sadly returned. They are testing to see if I am rejecting the Remicade.

Some more about me:

Originally from Alaska–love to write and am a graphic artist. I belong to the board of my local animal rescue group. Like to hike and walk and am/was an exercise fanatic. Like to read and used to like going to movies and out with friends. Haven’t been able to do much since I was diagnosed. It just doesn’t seem to get better…only worse.

Symptoms:

Bloody diarrhea, pain in abdomen, mucus, frequent and urgent BMs

Sick and Tired of UC

I believe I “caught” UC by getting C-Diff first. When I was 15 I was diagnosed with Crohns but it would come and go and did not affect my life. Last year a relative ended up in the hospital. I stayed at the hospital with her for several hours and days. After a week long “visit,” I returned home and started with diarrhea. I thought I had the flu. After about a week of my diarrhea getting progressively worse, the blood started. After 3 weeks of denial, I went to my doctor. He thought it might be C Diff even though I had rarely taken antibiotics in my life so started me on Flagyl. It did nothing…made me sicker. The stool test came back negative for C-Diff, although I now know that those tests–and especially the one my hospital lab did–often have false negatives. Anyway, after almost 2 months of bloody diarrhea, I had a colonoscopy and discovered I had “moderate” UC.

I immediately changed my diet; I went gluten, peanut, dairy, sugar, corn, egg and soy free. I also read blog after blog on UC and started taking tons of different supplements. I convinced my doctor to prescribe VSL–the prescription strength dosage. I made slippery elm tea (horrible stuff IMO!) every morning and somehow forced myself to drink it down. I made special smoothies other UCers swore put them into remission. Things were moving along okay–I was still bleeding badly and had diarrhea but it didn’t seem as bad. Then, what I consider my first big flare hit. While I know VSL has helped many, many people, I believe it put me into my first flare. Everytime I took it, I felt nauseated, my stomach cramped and I dumped more badly than I had before I began taking it. I called them and they told me that while it might not help me, it had NO side effects. Again, for those who have found remission because of VSL I am happy for you. However, after my own experienc e, I ended up finding many people who had had the same response to it I did–it put them into a flare.

I had been taking so many different natural “cures” I ended up stopping everything with the first flare. I have what is considered “good” insurance but, even so, it took more than 6 weeks for me to get into a Gastroenterologist. From the point I was diagnosed my Primary Care Doctor put me on a high dose of prednisone. I had no idea the side effects prednisone would end up causing…I basically turned into a crying lunatic! I had all sorts of skin and muscle issues as well. My situation just kept getting worse and I ended up in the hospital in June. They pumped me full of prednisone by IV and while I was in the hospital I researched SCD/GAP. My new Gastro immediately suggested Remicade. I declined. They put me on Asacol HD and prednisone.

I went home after 2 weeks and started on SCD. I was still on a very high dose of prednisone–80 mgs and 1600 mgs of Asacol 4 times a day–and the bloody D went away.

Leading up to my first hospital visit I had simply stopped eating. I couldn’t keep anything down so I was very dehydrated. I lost tons of weight. Starting SCD when I couldn’t even get up off an ADA toilet without a riser was fun! It’s a very labor intensive diet so without my family, I don’t think I could have even considered the diet.

For several months it seemed like the diet and Asacol might be working. I was tapering off the prednisone which in itself was very hard mentally and physically. I was off prednisone for 4 days when the blood returned. The diarrhea returned soon after. The Gastro I had at the time was an idiot frankly. I had been telling him my energy level was dissipating for months. He never did any blood tests and just kept telling me I “looked” great. He put me on 20 mgs of prednisone and told me to immediately start tapering it after a week. It did nothing but he insisted I taper. I got sicker and sicker and couldn’t eat or drink anything. I ended up back in the hospital and…they tested for C-Diff and I tested positive this time. After a week in the hospital they sent me home on Vancomycin. It made me sicker but they insisted I stay on it. I was basically bed ridden for a month, going at least 25-30 times a day. The stuff coming out of me was worse than the UC diarrhea which was hard to believe. My bum ended up so messed up I would sit on the toilet and cry through every dump. The medicine just seemed to make it worse. I lost 50 pounds in that month.

Back to the hospital I went. After yet another colonoscopy my GP informed me that my UC had spread to my entire colon, that it was severely inflamed and that I was in danger of losing my colon. He contacted a Gastro at our university hospital who took me on as her patient and I finally ended up with a good doctor on my side. I spent 3 weeks in our trauma hospital being pumped with fluids and working with my new team of doctors. At the point they got me I had no other choice but to go on Remicade. It was a hard decision. I’m someone who had only been hospitalized once in my life. I never had any of the regular vaccines–flu, pneumonia etc. I had rarely taken anti-biotics and never took any other medications. I am now very well vaccinated! I’ve had every vaccine known to mankind. I’ve had hepatitis A and C tests. I’ve had TB tests. And not only was I put on REmicade but I also went on Azathioprine. 3 days after my first infusion, I had the firs t blood free, formed poop in almost a year.

I went home in time for Christmas and for a week or so it was like a miracle. Then, I started getting high fevers at night–up to 104 degrees. I knew in my heart it was the Azathioprine. They’d started me on 75 mgs. I lowered it to 50 mgs and the fevers went away. But then I ended up with a urinary tract infection and my GP prescribed Cipro which scared me to death. I refused to take it because everything I read said it was one of the main causes of C-Diff. I don’t know about anyone else but I don’t know if I can take another bout of C-Diff! He finally prescribed something I agreed to take and that infection went away.

My current Gastro despises prednisone. She feels it should be a last choice for medication rather than the first choice of most Gastros so we immediately started tapering me down off of it. It’s been miserable frankly. Every joint in my body hurts. When I was on the Asacol I lost half my hair. It had started growing back after I went off of Asacol but once I started the Remicade/Azathioprine coctail and began tapering off the prednisone, I started losing handfuls of hair again. I know it’s the least of my problems but it is so depressing to have once had almost too thick, brown, healthy hair and now have almost no hair and what I do have is brittle and gray.

Anyway, because the joint and muscle pains have gotten so intense my Gastro took me off of Azathioprine. A week later the blood and loose BMs returned. They are testing my Remicade levels and searching to see if I’m rejecting it at this point. So, although I’m much better than I was in November, I’m back to square one and I’m so depressed.

I used to work out 90 minutes a day. I was active and social. I hardly go out and while I was able to exercise during most of the worst of my UC flares, with the muscle pain and the fatigue I now have, I haven’t been able to exercise much. Exercise i my anti depressant and so I’m pretty down now. My sister has taken care of me through this whole journey and I feel so guilty. And, it just seems like it’s never going to get better. I can’t imagine having my colon removed. And I am just sick of life to be honest.

This website has helped me immensely because when I read that other people have the same problems or pains or have even tried the same silly “natural” things I have, I don’t feel so alone. I am just looking forward to the day I can live my life normally again, or at least, not feel so sh!tty all the time!

written by Mary M

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

Ask Adam:

“Since you had C Diff, have you relapsed? I know SCD works for you. Did it start working immediately? It hasn’t seemed to help me kick this.”

Hi Mary,

Since my original diagnosed of c-diff (which was a few weeks after my UC diagnosis…) I was able to knock it out with vancomycin for a few weeks but unfortunately it came right back. Next, I knocked it out for good with Flagyl, another powerful antibiotic.

And, yes for me, I started to see improvement with the SCD diet within a few days and over the next several months the improvement continued to the point where I was eventually totally off prednisone after a super long and super slow taper. As I’ve written in my ebooks, I was on a long prednisone taper when I started the diet and this may have helped me compared to if I was not on any medications at all when I started.

One thing you should realize though, is many people don’t experience instant or near instant positive results from diet changes. Similar to medications that sometimes take longer to kick in for certain individuals. It is all unique to everyone and no two people’s experiences are the same. I have had a few flare ups in the past 5 years since starting the diet and each flare up has had a unique rebound time when I do my “diet reboot” and go back to basics.

I wish you the very best Mary, no matter what decisions you make moving forward. You’re going to figure this out, and this site along with all the other resources you have access to will be here for you:)

Warm regards,

Adam Scheuer


3 Responses to Sick and Tired of UC!

  1. Noel May 4, 2014 at 9:47 pm #

    Hi Mary.

    I’m a 45 yr old woman. Diagnosed severe ulcerative pan colitis 3 years ago. 6 months after being diagnosed it was so bad they put me on Remicade. A godsend. 1 year into treatments and I was having terrible joint pain that went away with Remicade infusion. RA tested negative. Test for antibodies (which my insurance refuses to pay as “experimental” – no one told me) were negative. June of 13 had a massive allergic reaction only 10ccs in. They stopped at and 3 weeks later I started Humira.

    Humira hasn’t controlled it as well for me, but I haven’t had the debilitating joint pain since stopping Remicade.

    Currently in a flare, and on 30mg pred. Tried to come down to 20 and colon got too twitchy.

    Been on pred several times. 3 flares this year lasting over a month. Gained a lot of weight each time. Wish there was something stronger than Humira, but afraid to change after “only a year”. Some say Symponi is better for UC. Think my Gastro is tired of seeing me.

  2. Tonya May 5, 2014 at 8:09 am #

    In aflare trying feel better

  3. Ryan Malm
    Ryan May 5, 2014 at 1:29 pm #

    Mary – your story is so frustrating and I’m sorry you’re going through this. I just started remicade last week and I have so much hope for it. But then I read a case like yours and have to remind myself that it does not work for everyone, clearly!
    I really hope you/they get it figured it out soon

Leave a Reply

No matter what, colitis flares don't last forever, don't forget it:)