Okay, so, I guess I'll start out by telling my story. Sorry about the length but it's been a crazy year. I'm 21 years old, always been healthy, don't smoke, drink, or do drugs. In August of this year, I started having horrible cramps and diarrhea. Sometimes there was blood in the stool. I went to the doctor and she prescribed me bentyl for the cramps and told me the diarrhea was probably caused from stress. The bentyl helped for one day then the cramps flared up again. So, I went back to the doctor 4 days later. They did blood and stool tests then put me on flagyl because they thought it was some kind of bacterial infection (even though the tests all came back negative). Later in August, I went into the emergency room because I was so dehydrated. They pumped me full of IV fluids and sent me on my way with instructions to continue the flagyl. September 2nd, I had to go back to the emergency room because nothing was getting better and I continued to have horrible cramps and uncontrollable diarrhea. They gave me IV fluids, more bentyl, more flagyl, and potassium. I was released 5 days later and told to take prednisone along with the rest of my prescription cocktail. To my surprise, I kept getting worse. I started vomiting, couldn't keep anything down (not even water), and started losing weight. About a week later, I was admitted into the hospital again. This time, my GI doctor decided to do a sigmoidoscopy. My dad begged him to do a full colonoscopy but the doc said no because he was afraid my colon might rupture. They finally diagnosed me with Ulcerative Colitis and started me on Asacol, lots and lots of Asacol. I spent another 6 days in the hospital getting pumped full of IV fluids and antibiotics then went on my way. My cramps kept getting worse and worse until I couldn't walk or do anything for myself. I was constantly in pain. My husband had to help me change clothes and realized that my stomach had turned gray. That really scared him so we made another trip to the emergency room. There, they did an Xray to find out that my colon was indeed ruptured. I was CareFlited to the nearest large hospital where they performed emergency surgery to remove 90% of my dead colon. It was actually ruptured in 2 places. I was in septic shock and had 3 different funguses in the abdomen. My surgeon said it was the worst he's ever seen and told my dad and hubby that I probably wouldn't make it. I was put into a medically induced coma for 5 days because I was on Xigris and they said I'd be in too much pain to be awake. The first 2 days after surgery, my heart rate stayed steady at 175-180 because of all the infection. One of my lungs collapsed during surgery so I had a respirator tube down my throat. On top of that, I had 3 pic lines (neck, arm, and pelvis), 3 tubes coming out of my stomach to drain the infection, and a tube going up my nose to keep anything from going into my stomach. My body was swollen to twice my normal body size and I kept running a pretty high fever. I had a freezing blanket on top of me for 48 hours to try and break the fever. I was also handcuffed to the bed so I wouldn't pull out the tube in my throat. I was getting 1 mg of dilotids every 30 minutes. Mind you, this is all what my family has told me because I was completely out of it. My husband won't talk about it anymore because he was pretty sure that he was going to lose me. After 5 days, they finally woke me up and took out all of the tubes except 2 of the pic lines. After a couple more days in the ICU, I was finally transferred into a normal room. I was non-contact (which meant that everyone who came into my room had to wear gloves and a gown so I wouldn't get another infection). I haven't done a final count but I had a team of about 20 doctors. I was told I was the youngest person in the hospital and had the most interesting case. Oh, I forgot to mention that a couple days after surgery, I had a wound vac put into my into my 10 inch incision to suck out all the infection. (A wound vac is when they put a sponge into your incision, then hook it up to a mini vaccuum to suck out all the fluids.) They had to change the sponge every 3-5 days and let me tell you, that was the worst pain I have ever been in. My dad couldn't stand to stay in the room because I would scream and cry. When they took it out, you could see pretty much all of my insides. My husband always stayed in the room to hold my hand through it all but he said it took everything he had to not get sick. I've been told having a wound vac is worse pain than labor. Anyways, I stayed in the hospital for 23 days because my heart rate and white blood cell count kept going up and down. I had an ultrasound done on my heart and found out that the sac around my heart was swollen so I was put on Korig and Lisonopril. I don't remember what this procedure was called but a pulmonologist came in, stuck an ice pick into my back, and drained a liter of fluid from the sac around my lungs. It's called sympathy fluid or something like that. There's so much more that I don't care to remember (5 blood transfusions, being dropped by a physical therapist, etc.) but this is a rundown of the more serious stuff. Oh yeah, I also have an ileostomy and I've lost 56 pounds. I do love being super skinny, haha.
Anyways, here are my questions:
1. Am I ever going to stop losing my hair?! I'm so annoyed by this. Supposedly, it's because of the medication but right now, I'm only taking Asacol and tapering off of Zoloft (I've never been depressed before but 23 days in the hospital can do that to you).
2. Will I be on Asacol forever?
3. Is there anybody out there with about 6 inches of their sigmoid colon left that has had an ileostomy reversal? If so, how'd it go? Do you have normal bowel movement? Is it worth it? The doctors said I may not even be a candidate for a reversal but if I am, it'll at least have to wait a year.
4. Will I ever be able to eat fruits and veggies again? I've tried eating a couple bites here and there, but I always end up throwing up. I miss them so much.
5. Does anybody have any recommendations on how to keep your ileostomy bag from itching under the wafer? I keep it clean and everything and it doesn't leak; I just have really sensitive skin.
6. Do most people have a colonoscopy to diagnose UC? My dad thinks that I should have had one my 2nd visit to the hospital because even if my colon did rupture, I would have been completely cleaned out and already on the operating table.
Sorry about the length again. I'm just so shocked that all this happened in a matter of 3 months. I'd love any feedback :-)
All I can say is wow. That is an intense story you have there...I suffer from GI issues, but have not gotten much successfully diagnosed, I am 23, so I am young as well. But I did want to tell you by reading this you gave me confidence in not feeling so nervous about what I am dealing with it appears you have seen the absolute worst these things can get. I just wanted to comment and let you know I am happy you made it through that insane affair, and though your questions are quite specific there is support to be found here always.
Wow. Though not as extreme as your experience, I have had quite a ride myself. I was 31 when I was initially diagnosed (almost 2 years ago). I was diagnosed a week after I quit smoking and within 6 weeks, my colon had completely diseased and perforated. I had my colon removed within a couple of hours after the x-ray showed the perforation and had to wear a bag for almost a year before I was fortunate enough to have a reconnection. During those very painful 6 weeks, I got Pancreatitis from Imuran (very low dose and only 2 days worth of doses), couldn't eat or drink, lost about 40 lbs and losing my hair also.There was other stuff too, but I can't remember most of it. When I wore the bag I was in hell. It would leak all the time and it itched like crazy too a lot! I think that some of the itching had to do with the food I ate, but also b/c the skin was constantly being covered by all the sealants. I think the biggest factor was that I started to gain back weight,not only did I itch a lot, but right around the stoma became raw quite a bit, which required me to change the 'bag system' and cut a bigger hole around the stoma. Once I went to the bigger hole, most of the itching went away, but the other problems still persisted. I didn't use the wafer after a little bit b/c I was able to use the powder and paste. I don't have the exact names of what I used (I've since put everything in boxes and in the basement and haven't looked at it since...I was going to pitch it all, but didn't want to jinx myself)
I stopped losing my hair a few months after the colectomy surgery and it has been growing back since. When I went in for my pre-op appointment to discuss surgical options, I kept insisting I wanted a direct reconnection. My surgeon (Dr. Luca Stocchi at the Cleveland Clinic. A true miracle worker. He literally saved my life and gave me my life back with the reconnection) said that he would perform the reconnection as I wanted IF he was able to. He said that there were no tests to determine which, if any, procedure would be most appropriate until he cut me open and saw what was going on inside.
As far as F+V go, I slowly began to eat them one at a time to see how my system reacted. I am a HUGE eater of F+V, especially in the summer, and missed eating them. Bananas were the only fruit I could eat for a while, and now I can eat pretty much any as long as I eat small portions.
I HIGHLY recommend Cleveland Clinic for anyone with UC/Crohne's. They are absolutely wonderful there. Trust me on this, I had 11 hospitalizations in one year. My local hospital couldn't handle my case and sent me up to CC after my first hospitalization. Thank God they did, because I wouldn't be here today if I stayed here.
I hope this helped. I tried to give you the "Cliff Notes" version of my story and tried to help with your questions as best I could. Let me know if you need any more help!
Good luck to you and I wish you the best of health.
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