I am 20 years old dx with Ulcerative Colitis.
I was dx in 2008, where I was immediately thrown on Prednisone and Asacol. These worked immediately and Asacol was able to provide me with remission for a year and a half then flared. Restarted Prednisone and started Imuran and again, remission for another year. Since flaring the 3rd time after that in January 2012, I have been flaring since.
Later on in that year of 2012 in the summer I tried Remicade which didnt do anything for me, I think we gave it 2 infusions and i developed a rash from it. Later in October, I switched to Humira. Again i think I had 3-4 doses and it didnt provide any relief. At the end of that year, the doctor ran out of options and was pointing at surgery. So from Decemeber 2012 til January 2015 i wasnt on any medications and in pain everyday. During those 2 years I went through holistic approach (Yoga/Acupuncture/Chiro/Naturopath) and diets (SCD, Paleo, GF/DF) that I guess "kept me from being in the hospital" but never had a real life whatsoever.
January 2015 came by and I go for a scope and it showed Pancolitis, everything was inflamed. February 2015 I had had enough and started prednisone again.
It provided tons of relief from what was feeling. I went to the Doctor in Jan 2015 at 5'8 weighing 113 pounds. Within 2 months on prednisone I weighed 145 pounds and looked alot alot healthier. It made my BM formed, and usually 1-2 times a day with no blood.
I wasnt in remisson by any means but i could definitely get out of the house to work part time, go on a vacation, and increase my diet, and eat without so much pain. It was very hard to taper the prednisone because i wasn't on any other medications, So it was prednisone doing everything.
This wasnt a long term option and we knew that but we were trying to buy sometime until Entyvio was available in Canada (NewBiologic) I am currently on Entyvio (Vedomizulab), and I have had 5 infusions. and started them in June of this year.When I started Entyvio, I was very confused as to how I should decrease and taper my prednisone usage because I didnt know which one was making me feel better. I would say I felt absolute best after my first couple of infusions, while I still on 20-30mg on prednisone.
Well I was on prednisone up until the second week of October and had a colonoscopy done 2 weeks after stopping the prednisone. My most recent scope showed only 30cm of active inflammation (left sided). This was such a big improvement from my last scope that we thought that entyvio was working well. To heal the last little bit of inflammation my doctor gave me Salofalk enemas. I had a very rough time with them, and i think the stressed caused more worse than the enemas were doing good. So I stopped them. No Improvement. 2 weeks go by, slowly worse and worse, tried Steriod enemas, couldnt even retain them at all.
Well it has now been a month and a half since my scope, and about
2 months of being off prednisone and I feel just like I did back in January 2015 - not able to eat, losing weight, lots of stomach pain, etc.
So today I had Another GI appointment - my first time seeing my GI doctor since the scope and she was very concerned about
me. Down 15 pounds in a month and a half and not eating - so much pain - hemorrhoids - but not having diarrhea, more constipation. She said the Entyvio is not working enough and that I need to restart steroids to stabilize things. She wants me on it for about
a week to see how i feel, and if don't respond she wants me to be admitted to the hospital to do IV sterioids.
In the meantime, this monday she already has me booked for another colonoscopy, and she will do an ESG procedure at the same time. She feels that there must be something else causing all this pain all over my abdomen when my recent scope showed only 30cm active inflammation.
When I eat - Immediate pain, bloating, gassy feeling, stomach get distended in pain in the upper abdomen, right under the ribs, but also feel pain all along my whole large intestine area
When I drink - Pain, distended bowel, - Lots of pain when I chug water
Sleeping - Uncomfortable to lay on my stomach. Usually get 6hrs a sleep a night. Not very rested
-Hemorrhoids which cause the feeling of urgency, but nothing comes out.
-Constipation, which causes lots of straining, which caused hemorrhoids.
-Staying hydrated is a huge problem as well.
Right now I follow a very low fibre diet which i feel provides least amount of pain - but very unhealthy.
I am not able to work, go to school, or have a social life due to my symptoms..
Meds Tried: Asacol, Imuran, Salofalk, Remicade, Humira, Entyvio, Betnosol enemas
All suggestions very appreciated.
Post Edited (HealthFreakUC) : 11/27/2015 5:21:49 PM (GMT-7)