Hi - My name is Shannan, 37, mother to a very energetic 5-year-old girl. I am known for being a bit unabashedly long-winded. :wine: Quick backstory on The Stress - husband of 9 years and I had some problems early last year, he left, started seeing a woman at work a month or so later (unbeknownst to me), divorced me in December 2012, was engaged by March 2013, getting married next month. So. Yeah, there's that.
I was diagnosed with UC in 2000. My flares were just baby flares back then, mild, manageable with Asacol and later, Lialda. When they got worse, prednisone would knock them out in a few weeks and I would be back in remission, sometimes for years. .... After I had my daughter, I had a bad flare. They did my third colonoscopy and said my UC was "severe", eating up almost the entire colon at that point. More prednisone. More weight gain and bitchiness. Got better again for a few years. Then the separation/divorce happens. Worst flare I have ever had. This past May I had horrible, searing pain around my anus and found out it was an abscess. Which had to be cut open and drained on the spot because it was apparently BAD. They found a fistula and "Crohn's" was first thrown out as a possibility. June 2013 - I had my 4th colonoscopy - results "severe" inflammation throughout the entire colon, diagnosis "Crohn's colitis". It was apparently so bad my GI doc wanted me to be hospitalized to begin IV infusions of Remicade right away. My daughter had a dance recital that weekend and I begged to wait to start the infusions until Monday - he agreed. At that point, I had incontinence issues pretty much every day, going to bathroom probably 20-30 times a day, I was anemic...I had no idea how sick I really was. I am stubborn and just kept going to work. :ybatty:
July 7 I believe I was hospitalized for a fever of 103. Some "infection" they never did figure out. Few days, loaded me up with fluids and antibiotics, sent me home. Felt a little better. Had second and third infusions of Remicade. Infusion nurse told me 98% of people get better on Remicade. Those are good odds, I thought....I had about 2 weeks of feeling better and then started going massively downhill. Lot of bleeding, anemic again, blood pressure low, no energy..I was barely caring for my kid, barely making it through work day. SO sick in the mornings, sometimes I couldn't get off the toilet for 2 hours. Had to change my whole work schedule to afternoons/evenings to accomodate. ... Doubts start creeping in - surely I am not the 2%?
Tues Aug 13 - I had a follow-up appt with a colo-rectal surgeon regarding my fistula. He said I was too sick with the flare, that we couldn't do the drain until I got the flare under control. They took my temperature again and I had a fever of 101. He sent me home with the order to see my GI again that week.
Friday Aug 16 - I see my GI of 13 years, someone I have long liked and trusted. He is stumped and tells me so. He says I should be getting better by now on the Remicade. I am not. I am worse. He said he was going to consult with some colleagues in Miami and that I should go get some over the counter Imodium in the meantime and "pop them like candy". I told him I had had a fever on Tues but they did not take my temp in the office that day. He gave an order for some blood work to be done on Monday.
Sat Aug 17 - I feel awful all day. Exhausted, same old diarrhea and bleeding that chains you to your house. I have long been afraid to eat. I have already lost 20 lbs. .... I take my temp that night and it is 102.7. I feel dizzy, hot and cold at the same time. I was alone, my kid was with Daddy that night...something is wrong, but I just pop some Tylenol and hope for the best. ... Overnight, my diarrhea became liquid and every hour. I felt like I was going to pass out. Temp went down a little (100 at one point) but then back up to 101 when I woke up
Sun Aug 18...something was wrong with my breathing...I texted a friend that I needed help. She called me and I could only get out one word answers. She was at my house in 15 minutes and drove me to ER at Cleveland Clinic Florida (one of the best colo-rectal clinics in the country)...it was an extra 20 minutes. They admitted me almost immediately. I later find out my admitting diagnosis was Septic Shock, that my kidneys were failing, BP dangerously low, and that I almost died.:eek2:
From that point, I was hospitalized 2 weeks - First in ICU, had a central line into my jugular, an A-line in my wrist to monitor low BP, then a Picc line...I had a blood transfusion, CT scan, and got scoped again. I was told my colon was dead and had to go. The whole thing. Colectomy with ileostomy. I was not even remotely prepared for this. No one had ever said that could happen to me and I was very ignorant of the process. All I had ever seen online is that I would have a poop bag and it would be the worst thing that ever happened to me, my life would be over. So to say I freaked out would be an understatement. They actually put me on suicide watch, I reacted so poorly (which could also be attributed to the 40 mg prednisone out-of-control bitch raging) .... However, after days of coaxing and educating and getting my body strong enough to handle it, I went through with the colectomy and ileostomy, because it was made very clear to me that I had no other legitimate option. To walk out the door with a dead, rotting colon would kill me otherwise.
I am told it is "very optimistic" that they will be able to reconnect things in "3 months or so"...my rectum just took a beating from Crohn's and needs a rest.
I hate Crohn's so very, very much.
I am now a week and a half post-surgery (fortunately it was laparoscopic), home, and healing apparently quite ahead of what was expected. I have no real pain and not on any pain meds. They are tapering the prednisone (I will be down to 15 mg next week). They may be resuming the Remicade, I will find out Tuesday.
If you read the whole thing, you totally deserve a cookie. :cookie:
I was diagnosed with UC in 2000. My flares were just baby flares back then, mild, manageable with Asacol and later, Lialda. When they got worse, prednisone would knock them out in a few weeks and I would be back in remission, sometimes for years. .... After I had my daughter, I had a bad flare. They did my third colonoscopy and said my UC was "severe", eating up almost the entire colon at that point. More prednisone. More weight gain and bitchiness. Got better again for a few years. Then the separation/divorce happens. Worst flare I have ever had. This past May I had horrible, searing pain around my anus and found out it was an abscess. Which had to be cut open and drained on the spot because it was apparently BAD. They found a fistula and "Crohn's" was first thrown out as a possibility. June 2013 - I had my 4th colonoscopy - results "severe" inflammation throughout the entire colon, diagnosis "Crohn's colitis". It was apparently so bad my GI doc wanted me to be hospitalized to begin IV infusions of Remicade right away. My daughter had a dance recital that weekend and I begged to wait to start the infusions until Monday - he agreed. At that point, I had incontinence issues pretty much every day, going to bathroom probably 20-30 times a day, I was anemic...I had no idea how sick I really was. I am stubborn and just kept going to work. :ybatty:
July 7 I believe I was hospitalized for a fever of 103. Some "infection" they never did figure out. Few days, loaded me up with fluids and antibiotics, sent me home. Felt a little better. Had second and third infusions of Remicade. Infusion nurse told me 98% of people get better on Remicade. Those are good odds, I thought....I had about 2 weeks of feeling better and then started going massively downhill. Lot of bleeding, anemic again, blood pressure low, no energy..I was barely caring for my kid, barely making it through work day. SO sick in the mornings, sometimes I couldn't get off the toilet for 2 hours. Had to change my whole work schedule to afternoons/evenings to accomodate. ... Doubts start creeping in - surely I am not the 2%?
Tues Aug 13 - I had a follow-up appt with a colo-rectal surgeon regarding my fistula. He said I was too sick with the flare, that we couldn't do the drain until I got the flare under control. They took my temperature again and I had a fever of 101. He sent me home with the order to see my GI again that week.
Friday Aug 16 - I see my GI of 13 years, someone I have long liked and trusted. He is stumped and tells me so. He says I should be getting better by now on the Remicade. I am not. I am worse. He said he was going to consult with some colleagues in Miami and that I should go get some over the counter Imodium in the meantime and "pop them like candy". I told him I had had a fever on Tues but they did not take my temp in the office that day. He gave an order for some blood work to be done on Monday.
Sat Aug 17 - I feel awful all day. Exhausted, same old diarrhea and bleeding that chains you to your house. I have long been afraid to eat. I have already lost 20 lbs. .... I take my temp that night and it is 102.7. I feel dizzy, hot and cold at the same time. I was alone, my kid was with Daddy that night...something is wrong, but I just pop some Tylenol and hope for the best. ... Overnight, my diarrhea became liquid and every hour. I felt like I was going to pass out. Temp went down a little (100 at one point) but then back up to 101 when I woke up
Sun Aug 18...something was wrong with my breathing...I texted a friend that I needed help. She called me and I could only get out one word answers. She was at my house in 15 minutes and drove me to ER at Cleveland Clinic Florida (one of the best colo-rectal clinics in the country)...it was an extra 20 minutes. They admitted me almost immediately. I later find out my admitting diagnosis was Septic Shock, that my kidneys were failing, BP dangerously low, and that I almost died.:eek2:
From that point, I was hospitalized 2 weeks - First in ICU, had a central line into my jugular, an A-line in my wrist to monitor low BP, then a Picc line...I had a blood transfusion, CT scan, and got scoped again. I was told my colon was dead and had to go. The whole thing. Colectomy with ileostomy. I was not even remotely prepared for this. No one had ever said that could happen to me and I was very ignorant of the process. All I had ever seen online is that I would have a poop bag and it would be the worst thing that ever happened to me, my life would be over. So to say I freaked out would be an understatement. They actually put me on suicide watch, I reacted so poorly (which could also be attributed to the 40 mg prednisone out-of-control bitch raging) .... However, after days of coaxing and educating and getting my body strong enough to handle it, I went through with the colectomy and ileostomy, because it was made very clear to me that I had no other legitimate option. To walk out the door with a dead, rotting colon would kill me otherwise.
I am told it is "very optimistic" that they will be able to reconnect things in "3 months or so"...my rectum just took a beating from Crohn's and needs a rest.
I hate Crohn's so very, very much.
I am now a week and a half post-surgery (fortunately it was laparoscopic), home, and healing apparently quite ahead of what was expected. I have no real pain and not on any pain meds. They are tapering the prednisone (I will be down to 15 mg next week). They may be resuming the Remicade, I will find out Tuesday.
If you read the whole thing, you totally deserve a cookie. :cookie:
