I was diagnosed with UC at the age of 22 of April this year. I was just a regular college student until I was hit with my first flare up of my UC that changed my life for the worse. Not only did I suffer with a UC flare but other things as well.
Diarrhea, bloody stools, vomiting, dehydration, not eating, weight loss, and abdominal discomfort. All though I never did experience cramping or pain.
Okay, it all started with having rectal bleeding, then I started getting abdominal discomfort, then the diarrhea came, then more blood was coming out of me… then I started vomiting and I couldn’t eat nor drink as much as I needed too… I went to see a GI and he ordered a CT scan to see if I had Crohn’s disease… nothing… stool sample tests… nothing….. so I was suffering with ongoing diarrhea until I went to the ER the very first time and all they did was treat me with antibiotics and hydrated me because I was becoming dehydrated. My white blood counts were high, about 19,000. I went home after being in the ER for about 8 hours… and they prescribed me home antibiotics to take orally… it wasn’t working and I was still having diarrhea. Then finally…. I got the first CT scan result but then on that very day that I was seeing my GI I started having side pains… and when I got to see my GI he suggested I go to the ER because he wasn’t sure if I had clot of some kind that was going to my lungs…
So I went to the ER the second time… had to wait about 8 hours in pain… then finally got in… I was given pain meds until the pain finally went away and had another CT scan.The results were showing two kidney stones on both sides, and undiagnosed ulcerative colitis and they sent me home… went back to the GI.. he started treating the colitis and scheduled a colposcopy. Had to drink this nasty shit the day before the colonoscopy, the next day, had it and it confirmed that I had ulcerative colitis.Then the same week, during the middle of the week the second kidney stone was moving down and caused on going pain.. went to the doctor.. got a shot of pain med.. and it helped with the pain around the second day.
Then on Friday night/sat morning of the same week of the second kidney stone moving, and colonscopy…. I got a pain in my left leg which led to feeling numbness and my mom checked my leg and found it swelling a little bit… we weren’t sure what was going on and when I tried to get up I couldn’t even walk… then finally we called for an ambulance to take me to the hospitalSo the ambulance took me to the hospital (they didn’t even have their sirens on because I was stable)
So the ambulance took me to the hospital (they didn’t even have their sirens on because I was stable when they checked my vitals… they thought I had a cramp leg because i was dehydrated again from still being sick with diarrhea and stuff) when i got to the ER my foot was changing color and that was then they discovered I had a blood clot, then ran some tests and stuff and they took me to ICU because i was demonstrating symptoms of the possibility that the blood clot broke off and was heading to my lungs. But they did a CT scan of my lungs and they were fine thankfully. However, I stayed in ICU…and while in ICU (I think about the second day) my leg was hella swollen at this point and my foot was changing color and that’s when they discovered I had compartment syndrome.
So, I had to be rushed into surgery for my leg or otherwise I would of lost my foot. What they did was they did a fasciotomy on my leg(the picture has an example of this) by cutting two incision on both sides of my leg to release the pressure. After that, they finally took care of the blood clot in my leg (it was huge, it went from my groin all the way down my thigh.
They rented a special machine that a radiologist used and put a catheter in my leg to help dissolve the clot by sucking it up and using a special chemical to help dissolve it. They would of treated it usual way of getting rid the clot but I posed a risk of bleeding because of my colitis. By using the catheter and machine, they were able to block off sections in my leg so the chemical they used stayed in the area of the leg where the blood clot was… If they had done it the usual way, I would of been at risk of a stroke if I accidentally bumped my head and that scared the hell out of me.Plus I was at risk for massive internal bleeding due to the colitis. I was also on heparin (blood thinner through an iv when they first discovered my blood clot). Once the Doctor was sure he did a good job of getting rid of most of the blood clot he left it to my body to get dissolve what was left. After that, I had countless surgeries on my leg to get the wound to close as much as possible before I went home. I was released after 3 weeks but the wound was still pretty open and I was sent home with a wound vac and thankfully while I was in the hospital my colitis went into remission, thanks to meds (Pentasa) for my colitis and steroids.
The blood clot that I had was DVT and apparently blood clots are a risk for people with UC. The risk is low but it can happen, as it did to me. I also had other risk factors such as not moving around because I was too sick with my first flare, being dehydrated due to the diarrhea and vomiting, and also having colitis. My GI didn’t warn me about it, So word of advice, if you every have leg pain, go to the ER right away so it doesn’t change your life the way it did mine. UC is a horrible disease and it does carry factors such as blood clots and colon cancer so it’s a good idea to get a regular checkup. Recently I went to a new GI because my old GI abandoned me pretty much and he reviewed my colonoscopy results and determined I had pan colitis. My whole entire colon was inflamed but mostly in the rectum area.
Where I’d like to be in 1 year:
To be able to walk normally. Due to the nerve damage to my foot caused by the clot and loss of blood to the foot, I am in physical therapy to work on correcting my walk and muscle shortage in the ankle from not being able to put pressure on it during recovery.
Changed from Pentasa to Asacol (because my insurance wouldn’t cover the pentasa) and it works great for me.
written by Amy
submitted in the colitis venting area