Hi all,
Im going to try to give you my whole story so please forgive the upcoming wall of text.
Im freaking out a little bit because my doctor wants to take my large intestines out.
I have been on all different medications including:
Ondansetron Odt 4 Mg Tablet
Budesonide Ec 3 Mg Capsule
Humira 40 Mg/0.8 Ml Pen
Prednisone 10 Mg Tablet
Canasa 1,000 Mg Suppository
Prepopik Powder Packet
Acetaminophen-Cod #3 Tablet
Oxycodone-Acetaminophen 5-325
Dicyclomine 20 Mg Tablet
Famotidine 20 Mg Tablet
Vit D2 1.25 Mg (50,000 Unit)
I am currently on:
Prednisone 20mg
Entivio
Oxicodone/apap 5-325mg (half every 4 hours)
Azathioprine 150mg
Here is my story:
Im 33 years old, Im about to be a daddy, and was diagnosed 7/3/14. in July of last year i found myself unable to go to the bathroom for about 2 weeks. When i did go it was mucus and blood. Being young and dumb i went on the internet and all signs pointed to cancer so i rushed to a phone and called the first best Gastro i could find, I will call him Dr. A. When Dr. A saw me i explained my symptoms and he said it sounds like classic UC but he wants to do a Colonoscopy and scheduled one for 2 days later. During the colonoscopy the doctor took biopsies and sent them off to the lab but he said he can see i have a mild case of ulcerative colitis. He prescribed me a medication and gave me about a weeks worth of samples and boy did it work. After a few days i was going like normal again but... The doctor told me see how it works and when your about to run out fill the script and see me in 2 weeks. this is where the trouble began. When i went to go fill my script my insurance (BCBS) denied it because it costs too much and they wanted a prior authorization. I called my doctors office and they said when i come in in a week the doctor will prescribe me something else.
This is where things went from manageable to out of control.
My doctors said that since i started a med and it was working and i stopped taking it due to the above reason (insurance denial w/o prior auth) my flare turned very aggressive. Since then i have tried all of the meds i mentioned and they would work for a little while and then when my doctor would try to ween me off of the prednisone (-5mg per week) when i would get down to 15ish mg of the prednisone my flare would come back a little bit worse.
After taking pills and seeing no clear signs of remission Dr. A wanted another colonoscopy and found that i went from just my sygmoid colon being disease to 50% of my large intestines had been affected in a matter of 7 months, so he put me on Humira and after a few months it did nothing and my doctor told me that i built up antibodies for it. So he decided to try "The new best thing in UC/Crohns medications. Entyvio.
I started Entyvio 3 shots ago (the shots are on a 2/4/6/8 week cycle) my last one was march 12 and i dont get another one until 8 weeks from then so about 4 weeks from now.Along with the Entyvio i was also put on 100mg of azathioprin and 30mg of prednisone daily.The new meds worked, kinda. After my second shot i started to get my energy back, the cramps started to go away and the constant bathroom runs were all but gone. If i had to guess i would say i was down from about 20 times a day to 2-3. I was getting excited, i was getting better, then disaster...
about a week after my 3rd shot of entyvio Dr. A decided to try to lower my prednisone -5 mg a week. I lowered it all the way down to 10mg and then it happened. I caught a cold ( not sure if its relevant but light cold, no fever, soar throat and sniffles) shortly after that everything flipped and i started getting worse again. My symptoms ( urgent bathroom runs up to 10 times a day, waking up in the night and running to the bathroom, Loose watery stools and some small solid stools, left side cramps, blood in the toilet and upon wiping) all came back in a matter of a week.
So now we are up to date and this is my current situation:
After my symptoms came back i called my doc and he told me to raise the prednisone back to 20mg, increase the Azathioprine to 150mg (from 100mg) and call him in a few days to see how i feel. He said if i don't feel better he is going to want to do another colonoscopy and "i don't mean to alarm you but, its starting to look like we might want to take those large intestines out". Well a week later i don't feel any different ... HOWEVER!! i found that when i take my half an oxicodone my symptoms almost completely go away (minor cramps, and almost no need to go to the bathroom). Why? im not sure but im making my doctor aware of this on Monday (tomorrow).
The reason im here telling you this is because my wife is pregnant, Im young, and im scared. I dont want to loose any of my organs and i want to be heathy enough to take care of my pregnant wife. If there is anything in my story that gives you an idea of something i can try to get me into remission i would LOVE to hear it. All advice is good advice at this point.
Please Help me!
Im going to try to give you my whole story so please forgive the upcoming wall of text.
Im freaking out a little bit because my doctor wants to take my large intestines out.
I have been on all different medications including:
Ondansetron Odt 4 Mg Tablet
Budesonide Ec 3 Mg Capsule
Humira 40 Mg/0.8 Ml Pen
Prednisone 10 Mg Tablet
Canasa 1,000 Mg Suppository
Prepopik Powder Packet
Acetaminophen-Cod #3 Tablet
Oxycodone-Acetaminophen 5-325
Dicyclomine 20 Mg Tablet
Famotidine 20 Mg Tablet
Vit D2 1.25 Mg (50,000 Unit)
I am currently on:
Prednisone 20mg
Entivio
Oxicodone/apap 5-325mg (half every 4 hours)
Azathioprine 150mg
Here is my story:
Im 33 years old, Im about to be a daddy, and was diagnosed 7/3/14. in July of last year i found myself unable to go to the bathroom for about 2 weeks. When i did go it was mucus and blood. Being young and dumb i went on the internet and all signs pointed to cancer so i rushed to a phone and called the first best Gastro i could find, I will call him Dr. A. When Dr. A saw me i explained my symptoms and he said it sounds like classic UC but he wants to do a Colonoscopy and scheduled one for 2 days later. During the colonoscopy the doctor took biopsies and sent them off to the lab but he said he can see i have a mild case of ulcerative colitis. He prescribed me a medication and gave me about a weeks worth of samples and boy did it work. After a few days i was going like normal again but... The doctor told me see how it works and when your about to run out fill the script and see me in 2 weeks. this is where the trouble began. When i went to go fill my script my insurance (BCBS) denied it because it costs too much and they wanted a prior authorization. I called my doctors office and they said when i come in in a week the doctor will prescribe me something else.
This is where things went from manageable to out of control.
My doctors said that since i started a med and it was working and i stopped taking it due to the above reason (insurance denial w/o prior auth) my flare turned very aggressive. Since then i have tried all of the meds i mentioned and they would work for a little while and then when my doctor would try to ween me off of the prednisone (-5mg per week) when i would get down to 15ish mg of the prednisone my flare would come back a little bit worse.
After taking pills and seeing no clear signs of remission Dr. A wanted another colonoscopy and found that i went from just my sygmoid colon being disease to 50% of my large intestines had been affected in a matter of 7 months, so he put me on Humira and after a few months it did nothing and my doctor told me that i built up antibodies for it. So he decided to try "The new best thing in UC/Crohns medications. Entyvio.
I started Entyvio 3 shots ago (the shots are on a 2/4/6/8 week cycle) my last one was march 12 and i dont get another one until 8 weeks from then so about 4 weeks from now.Along with the Entyvio i was also put on 100mg of azathioprin and 30mg of prednisone daily.The new meds worked, kinda. After my second shot i started to get my energy back, the cramps started to go away and the constant bathroom runs were all but gone. If i had to guess i would say i was down from about 20 times a day to 2-3. I was getting excited, i was getting better, then disaster...
about a week after my 3rd shot of entyvio Dr. A decided to try to lower my prednisone -5 mg a week. I lowered it all the way down to 10mg and then it happened. I caught a cold ( not sure if its relevant but light cold, no fever, soar throat and sniffles) shortly after that everything flipped and i started getting worse again. My symptoms ( urgent bathroom runs up to 10 times a day, waking up in the night and running to the bathroom, Loose watery stools and some small solid stools, left side cramps, blood in the toilet and upon wiping) all came back in a matter of a week.
So now we are up to date and this is my current situation:
After my symptoms came back i called my doc and he told me to raise the prednisone back to 20mg, increase the Azathioprine to 150mg (from 100mg) and call him in a few days to see how i feel. He said if i don't feel better he is going to want to do another colonoscopy and "i don't mean to alarm you but, its starting to look like we might want to take those large intestines out". Well a week later i don't feel any different ... HOWEVER!! i found that when i take my half an oxicodone my symptoms almost completely go away (minor cramps, and almost no need to go to the bathroom). Why? im not sure but im making my doctor aware of this on Monday (tomorrow).
The reason im here telling you this is because my wife is pregnant, Im young, and im scared. I dont want to loose any of my organs and i want to be heathy enough to take care of my pregnant wife. If there is anything in my story that gives you an idea of something i can try to get me into remission i would LOVE to hear it. All advice is good advice at this point.
Please Help me!
