Well hey everyone,
Just realized I haven't really said anything about what's happened since my initial post in April, which is ridiculous because my life has pretty much been a roller coaster this entire time.
So, where I left off in April was feeling decently well, tapering off of Pred, had just began Humira, feeling rather optimistic. Unfortunately it was a short lived victory.
I was doing ok for about a month but when I dropped to 5MG of Prednisone near the end of May things really got wacky. I began to have fevers daily which usually ranged from 101-103 degrees, was constantly fatigued and just feeling poorly. My doctor had me go back to 20MG of pred and start doing Humira weekly. This however did not help and I wound up in the hospital for a few days and got my second colonoscopy and an upper endoscopy. The flare continued after going home and I wound up in the ER near the end of June when I spiked a 104.3 fever. I stayed in the Hospital for a few days while they tried to figure it out- which they never did.
They started me on Imuran in addition to Humira and had me go back up to 40MG of Pred.
At this point I had gained back about 20 of the 40lbs I had lost but quickly began to shed weight again after going home. I was rapidly deteriorating and thought I was going to die. I spent hours in the bathroom spewing horrible-ness from nearly every orifice and experiencing constant severe pain. Mid-July saw me back in the hospital for gut rest and TPN as my nutritional status was becoming dangerous.
A couple of days into this hospitalization my GI doctor went out of town leaving a colleague in charge. She decided to do a sigmoidoscopy on the 16th of July but my colon was so diseased that the air caused it to perforate in 3 locations and I required an emergency, sub-total colectomy.
I remember going down to the procedure room around 10am for a fairly quick scope, and waking up at 7pm with 20 staples in my abdomen and an ileostomy. I was not a happy camper.
I stayed in the hospital for just under a week after surgery and returned home. The first 2 weeks were rough with extreme back pain and on the 31st of July I had to go into the ER for an obstruction due to adhesions. The blockage resolved itself after 3 days in the hospital with an NG tube. I started doing fairly well, building back muscle and thriving after this set-back and was able to resume work and move into my new apartment. I finally was off my medications and nearly done with Prednisone but upon dropping to 5MG I got sick again. I went into the ER this month (September 12th) and was admitted after my CT scan showed severe inflammation in the middle section of my small intestine. Previously, I only had crohn's in my colon and we all hoped that the colectomy would leave me in remission, but alas.
My doctors were completely stumped and referred me to Mayo Clinic in Rochester MN where I am today. I saw Dr. Kane (who was absolutely wonderful) and we decided to start Remicade. My first infusion was today. I am really hoping that it will be effective and I will be able to be healthy now.. fingers are crossed!!!
So yeah, 7 hospitalizations since diagnosis, 5 trips to the ER, 2 Colonoscopies, 3 Sigmoidoscopies, 2 endoscopies, 2 NG tubes, 3 PICC lines, 1 Surgery and 3 CT scans all since February 2013. UGH!!
Anyhow, I just wanted to fill ya'll in on what's been going on the last 6 months. It's been really hard and sad at times, but I know I will win in the end.. somehow.
Hope everyone is doing well and feeling healthy!
Much love,
-Mariah
Just realized I haven't really said anything about what's happened since my initial post in April, which is ridiculous because my life has pretty much been a roller coaster this entire time.
So, where I left off in April was feeling decently well, tapering off of Pred, had just began Humira, feeling rather optimistic. Unfortunately it was a short lived victory.
I was doing ok for about a month but when I dropped to 5MG of Prednisone near the end of May things really got wacky. I began to have fevers daily which usually ranged from 101-103 degrees, was constantly fatigued and just feeling poorly. My doctor had me go back to 20MG of pred and start doing Humira weekly. This however did not help and I wound up in the hospital for a few days and got my second colonoscopy and an upper endoscopy. The flare continued after going home and I wound up in the ER near the end of June when I spiked a 104.3 fever. I stayed in the Hospital for a few days while they tried to figure it out- which they never did.
They started me on Imuran in addition to Humira and had me go back up to 40MG of Pred.
At this point I had gained back about 20 of the 40lbs I had lost but quickly began to shed weight again after going home. I was rapidly deteriorating and thought I was going to die. I spent hours in the bathroom spewing horrible-ness from nearly every orifice and experiencing constant severe pain. Mid-July saw me back in the hospital for gut rest and TPN as my nutritional status was becoming dangerous.
A couple of days into this hospitalization my GI doctor went out of town leaving a colleague in charge. She decided to do a sigmoidoscopy on the 16th of July but my colon was so diseased that the air caused it to perforate in 3 locations and I required an emergency, sub-total colectomy.
I remember going down to the procedure room around 10am for a fairly quick scope, and waking up at 7pm with 20 staples in my abdomen and an ileostomy. I was not a happy camper.
I stayed in the hospital for just under a week after surgery and returned home. The first 2 weeks were rough with extreme back pain and on the 31st of July I had to go into the ER for an obstruction due to adhesions. The blockage resolved itself after 3 days in the hospital with an NG tube. I started doing fairly well, building back muscle and thriving after this set-back and was able to resume work and move into my new apartment. I finally was off my medications and nearly done with Prednisone but upon dropping to 5MG I got sick again. I went into the ER this month (September 12th) and was admitted after my CT scan showed severe inflammation in the middle section of my small intestine. Previously, I only had crohn's in my colon and we all hoped that the colectomy would leave me in remission, but alas.
My doctors were completely stumped and referred me to Mayo Clinic in Rochester MN where I am today. I saw Dr. Kane (who was absolutely wonderful) and we decided to start Remicade. My first infusion was today. I am really hoping that it will be effective and I will be able to be healthy now.. fingers are crossed!!!
So yeah, 7 hospitalizations since diagnosis, 5 trips to the ER, 2 Colonoscopies, 3 Sigmoidoscopies, 2 endoscopies, 2 NG tubes, 3 PICC lines, 1 Surgery and 3 CT scans all since February 2013. UGH!!
Anyhow, I just wanted to fill ya'll in on what's been going on the last 6 months. It's been really hard and sad at times, but I know I will win in the end.. somehow.
Hope everyone is doing well and feeling healthy!
Much love,
-Mariah
