Help/Advice needed! First flare up since diagnosis!

[missvicki]

I was diagnosed with Ulcerative Colitis in November of 2007. In July 2007, 8 months pregnant with my daughter, I started having blood on my stools. My doctor kept telling me that it was hemorrhoids from being pregnant. My daughter was born Sept 21, 2007 and it continuously got worse and they again kept telling me hemorrhoids. On my 6 week check up, they checked my heart rate and my heart was beating 145 bpm. I was immediately rushed to the hospital where I was diagnosed with a fistula and Ulcerative Colitis. After a 2 week stay I was sent home. I spent about 8 months on prednisone and about 1.5 years on Imuran (I believe it is also called apo-azathioprine or something like that.) and Pentasa.

I came of those meds in about April 2009. I haven't been on any since. I haven't had any flares ups since, expcept for the last few weeks. I have been to see my doctor, but I was having bleeding at the time (not a lot, just a bit) and constipation. He gave me the laxative and told me to try that. I came home and within one day I was having chronic diarrhea. Today, I went to the bathroom less then I have any day this week, but my bleeding was way worse today. The pain I have had in my belly the last few nights is unbelievable. I just started a new job this past monday and really can't take time off for doc appt's. I really don't know what to do. I have started going to yoga, making sure I am only drinking water and trying to eat much healthier. Does any one have any hints or idea on how to slow it down at all? I refuse to take Imuran anymore because the long term side effects is lymphoma and also I have three kids. I ccannot afford to be sick all the time and catching every single bug that goes around. I have pentasa in my cupboard. I was thinking about trying that again....Oh, and my doctor recently told me he suspects my disease is Chron's. When I was first diagnosed, it was so bad they couldn't tell if it was chron's or colitis. Every single inch of my intestines were covered in it. I had 3 bags of blood in a blood transfusion. It was awful.

What does everyone do for the pain? It feels like there is a hand inside there just squeezing my stomach and intestines. I can't live like this. I spent all night tonight crying and I don't want my children to see me that way. They are getting upset and are scared and it's breaking my heart. I just don't know what to do anymore. Also, has anyone here tried the over the counter product VSL#3?

Sorry for the rant and thank you for any help or advice you can offer me!

 

[Nico85]

Hi Vicki, was just reading your post and thought id just let you know that most of your symptoms is what i had. All the meds you mentioned are what ive got/had.

I was taking pentasa and azothiprine every day for 3 years and got me into remission nearly the whole time (my 'Colitis' was advanced) now its nearly burnt out, apart from one inch at my tail end which the pentasa wasnt reaching. My doc swapped the pentasa for a drug called Mezevant XL and they have been great for me and i now live my life nearly symptomless, my bowel still gets sluggish after a night out but i take movicol which is a mild laxitive and it gets things moving properly again.

My advice to you was to get back onto the meds. You wouldnt stop taking your heart pills if you had heart disease, dont stop taking the meds for your bowels.

Ask your doctor about mezevant xl, but always stay on your meds, expecially azothriprine!

I wish you all the best and let me know how you get on.

Nicky

 

[missvicki]

thanks for the advice and reply Nico. I talked to my doctor today and he wants me to start taking the pentasa again right away. But I can't get into see him until August 4th. If I have anything urgent occur in the interim he suggested I go to emerg at the hospital as there is always a GI on call. He wants to get blood work and do a scope before he prescribes anything else. I am actually have a great morning today. Not much pain at all. I had oatmeal for breakfast and it sat well in my belly. Only been to the bathroom twice now in about 5 hours. Bleeding was minimal too.

I mentioned those drugs to him when I talked to him and he said we will discuss it more when we meet.
Thank you very much for informing me of these. This is a drug that I haven't heard of. He also mentioned Remicade, which is an IV drug. I want to research it more before we meet.

 

[xJillx]

Hi missvicki! I am sorry about your recent flare. I know the side effects of our IBD treatment options can be scary, but it is way worse to let your disease run its course. By doing so, you could be causing permanent damage to your GI tract. To get a bad flare under control, you need treatment. I would highly suggest seeing your GI.

Hang in there and I hope you feel better soon!