Another Wedding Almost Ruined by UC

Introduction: My name is Holly. I am a 34 year old newlywed living in Virginia just outside of Washington, DC. I was diagnosed with UC January 24th of 2013.

Some more about me: I am one of the few female computer programmers out there and am a proud Hokie (graduate of Virginia Tech). I love my 3 cats and my wonderful husband (who is allergic to cats but still brings me new ones that need a home). I am a HUGE Beatles fan (and most other British things). I have been vegan for almost 18 years. I have been living with chronic fatigue syndrome since I was 13 years old and thought I had finally found a comfortable place dealing with chronic illness until I got UC.

Symptoms: Currently all I have is a little gurgling and very small amounts of mucus once every few weeks. Oh and of course the fatigue but it’s hard to determine if that is from the UC or just my usual chronic fatigue syndrome. At my worst I was having 10-15 trips to the bathroom a day and everything that came out of me was maroon. I was in severe pain, mainly on my left side.

Another Wedding Almost Ruined by Colitis

I started having GI problems in early 2011. I was having monthly bouts of mucus, gas, and cramps. I went to the doctor. They did stools samples, blood work, and sent me to my first GI for a colonoscopy. They found blood in the stool sample but the colonoscopy was clean except for a little redness in the sigmoid and small internal hemorrhoids. I still was having monthly bouts but the GI wouldn’t even return my calls. I ended up feeling like that doctor was a walking prescription pad. All he seemed interested in was giving as many colonoscopies as possible and if that didn’t show anything then he gave up.

About a year later I was still having monthly issues. I at this point figured out it seemed to line up with that time of the month. I stopped taking birth control to see if that helped. It didn’t. They sent me to a different GI. It took 2 months to get an appointment. She seemed like she really wanted to help figure it out. She did a sigmoidoscopy to try and see what the other GI saw. She also found a completely healthy looking colon. My follow up ended up being with her PA. They basically said it was IBS and gave me hyomax (which did nothing). They also thought I might have endometriosis on the outside of my colon.

By this point I was deep into wedding planning and was tired of dealing with it all. I was highly stressed with invitations, RSVPs, and making my own origami flowers. I think the stress was the 2nd to last straw. The last straw was being put on an antibiotic called macrobid in September 2012. I had never been constipated before. Being a vegetable loving vegan generally helps. But this was beyond painful. I remember having to send my husband (then fiance) out to get me whatever laxative he could find. It helped but that was just the beginning of the downward spiral. I started bleeding all the time, diarrhea, mucus, pain, urgency, the lot. Unfortunately it was now the month of my wedding and I didn’t think I had the time to deal with another thing.

So I was a beautiful bride, who tried not to eat much on her wedding day so I wouldn’t have to spend the reception on the toilet. Thankfully I was able to have a really good time. We then went on our 10 day honeymoon in Hawaii. I was still having troubles. Exercise seemed to help so we did some hiking. I still was having blood, musuc, and urgency. This was particularly problematic in the middle of the night when we were staying in a treehouse.

So as bad as things were, they got worse. The week I got back from the honeymoon a good friend died unexpectedly. My stress level went through the roof. I ended up going to the ER December 1st. They said it was the hemorrhoids but that I should follow up with the GI. I couldn’t get an appointment for 8 weeks and even that was with a PA. So I waited. I ended up going to the ER again January 23rd (which was the morning of my GI appointment). They said it was probably a bacterial infection and gave me 2 antibiotics.

I went to the GI PA later that day and they wanted to do another colonoscopy the next day. So with less than 24 hours notice I had a colonoscopy. By this point I was in so much pain that the prep was actually a welcome relief. I woke up from the anesthesia to the doctor telling me I had sever pancolitis. She gave me prescriptions for colazal and 60mg of prednisone, handed me 2 brochures about UC, said I should eat more fiber but maybe not right now, and told me to come back in 3 months.

The prednisone made the blood and urgency stop within a week. I still had lots of pain and mucus but at least I felt a bit better. I started messing with my diet at this point. I first cut out wheat and corn. When the prednisone taper ended I started bleeding within a week. I called the nurse (since it was inmossible to get an appointment) and she had me try switching from colazal to lialda. That did nothing so after another week I went back on colazal and prednisone at 40mg and gave me bentyl for the pain. Again it stopped the bleeding and the bentyl really did help with the pain. I had my follow up appointment somewhere around here, with the PA. It was at this point I started to feel like I wasn’t ever going to see the doctor again.

When the second taper ended I again started having some blood and mucus after a week. This time I decided I wasn’t going to go back on it and started looking for other options. As I am vegan, SCD wasn’t really going to work. I ended up following a protocol from Dr. Fuhrman that he had in one of his newsletters. It started helping within a week.

I also around this time had my final appointment with yet another PA for the GI doctor. They said that if the colazal wasn’t working the next option would be remicade. I want to avoid this at all costs because of the side affects and their interaction with my CFS. I also requested either a suppository or enema treatment and they reluctantly gave me Canasa and told me to take it just when having mucus.

After treating myself with diet and continuing the colazal, I was still having issues and I decided that I needed to switch doctors. I found a new doctor who I love so much I want to hug him. I was able to get an appointment in under 2 weeks. He switched me to Apriso (he gave me all the options and let me choose), told me to make sure and use Canasa every day (not just as needed), and told me to start exercising daily. Not strenuously, just get moving. He even told me that my vegan diet is probably the best thing I can do in the long term, just that it may be difficult in a flare. He also said it’s probably what kept it from going into a flare for those 2 years of symptoms. It has been almost 3 weeks since I saw him and I feel almost normal. I have had solid BMs for a week and feel less scared of trying to add new foods. The doctor wants to see me in a month (not 3) and I’m actually looking forward to it. I am amazed at the difference that a good doctor c an make.

At this point I’m pretty positive about the future. I’ve already learned to manage one chronic illness so this is just another. I’m so happy to have found this site. Everyone is so supportive no matter what treatment people choose. It was so hard when I was first diagnosed because all the other groups were so negative and told me being vegan wasn’t possible. Thank you Adam for creating such a positive community.

Medications: I’m currently taking…

Apriso

Canasa

VSL #3

Vitamin B6

Vitamin D (10,000 IU a day)

Iron

homeopathy treatment from a naturopath

I have previously been on…

Prednisone

Colazal

Lialda

Bentyl

L Glutamine

chlorophyll

extra virgin olive oil

written by Holly

submitted in the colitis venting area