My Journey With Colitis
Last updated: December 2021
Hey guys! I was invited to share my story here after posting snippets of it to facebook. I'll do my best to keep it short but it might ramble on a bit, apologies in advance. ;) To start my name is Odessa and I'm currently 24. I was diagnosed with severe ulcerative colitis when I was 17. I've been through the whole gamut in the last 7 years. Every medicine on the market, at least a dozen colonoscopies and finally surgery to remove my colon. I was in the small percentage of people who didn't respond to ANY of the medications. Now I have no colon, a j-pouch, and am doing much better despite some leftover issues, and I am still considered "disabled" as surgery is not a cure, it only lessens some of the issues. I'll start at the beginning and we'll work up through the last 7 years :)
When I was 17 I caught H1NI, aka "swine flu." I became very sick, had to take tamiflu and felt awful, however I survived and everything seemed fine. Only a few weeks later I began having pains in my stomach and blood in my stool. Since nobody in my entire family history has ever had any IBS or IBD or colon cancer, we figured it was temporary, but went to see a GI doctor anyway. After my first colonoscopy I was immediately diagnosed with severe colitis. My GI estimated over 100 ulcers from my colon all through my rectum. I was put on prednisone immediately and got some relief. However the steroids were NOT my friend. I got every side effect possible- racing heart, high blood pressure, my face swelled up, I gained 20 pounds, had mood swings and psychotic episodes... it was a nightmare but I stuck through it.
I seemed to be in remission for a while but then the blood and diarrhea returned. I did another course of prednisone... and another... finally I had to stop because I couldn't handle the side effects. I also developed lasting joint pain in my knees which has gotten worse over the years, now to the point that I have trouble walking, especially up/down stairs. I quit prednisone and went on Lialda and Imuran. I was on the highest dose possible and it helped for 2-3 years, except I was immune compromised so I would get colds and the flu often, and get my TB test twice a year, also lots and lots of bloodwork to watch my liver. I was eating Tylenols like candy to try and avoid all the aches and pains, along with any other medicine I needed for acid reflux, migraines, etc. At the worst I was taking 20 pills a day. Eventually it stopped working. The bloody diarrhea came back with a vengeance. I tried Humira- doing the shots at home in my stomach every 2 weeks- but that didn't work. Finally I tried Remicade. Every 6 weeks I had to go up to the chemo ward and get my infusions (at this point the entire hospital staff knows me, and the ER staff too from several trips there!). The Remicade worked for maybe 3 months and then stopped. It also made me VERY tired. I should mention I was in college this entire time, trying to work my way through my bachelor's in forensic psychology, and being sick all the time, and on meds with dangerous side effects, made school very difficult. My grades suffered and I lost my coveted 4.0GPA and started missing classes regularly because I was too tired, sore, sick, etc. and it was difficult to explain to people why I looked perfectly healthy but felt so sick...
The real problem happened in early 2013 when I suddenly became unable to eat anything without vomiting. I didn't know why at the time but I had cyclic vomiting syndrome, and I could not stop vomiting. I couldn't eat or even drink water without puking up everything, plus I had terrible, painful diarrhea, at the worst it was 40 times per day that I had to run to the toilet to have painful, bloody diarrhea and vomit into the bathtub at the same time! I lost a lot of weight and dropped down to 90 pounds. I was too sick to even stand up properly so I made the tough decision to drop out of college. We did an emergency colonoscopy to see what was going on, and even that procedure alone nearly killed me. Drinking a gallon of bowel prep, being dehydrated and malnourished, and so much stress on my body, I passed out before the procedure and ended up in the ER with a fever.
They decided to send me to a surgeon in Portland, OR who would finally remove my colon. It was obvious the meds didn't work and I was VERY sick. It was a 3 day trip but my friends and family helped me make it. I was scheduled to have my entire colon and rectum removed, and to get a j-pouch. It would be done in 2 surgeries- the first one to remove everything and create the pouch and a temporary ostomy, then 6 months later I would have another surgery to reverse the ostomy and let me use my new "fake" colon.
Finally time for surgery
So in October, 2013 I had my first surgery. It was a huge trip, all the family came to support me, and I was very scared- I was only 21 at the time and this was MAJOR surgery. I was so sick, I ended up in the ER again the night before surgery, because the combination of bowel prep and antibiotics sent me into shock. I recovered and was able to make it through surgery. I spent a week in the hospital in a LOT of pain, but thankfully I had wonderful nurses who helped me out, and my amazing fiance stayed in the room with me the entire time. I had a lot of trouble standing up and walking, the pain was intense, and the concept of an ostomy bag was brand new to me. It was a bit overwhelming. I had my surgery done laparoscopically so I ended up with 5 small incisions and 2 bigger ones. I was finally released and sent home to recover for 6 months before my next surgery. That 6 months was, in all honesty, a living nightmare for me. Many times I actually wished I was dead. It was very hard for me to make it through. I had another bout of cyclic vomiting syndrome which caused me to vomit uncontrollably for about 10 days straight, and right after a bowel surgery, it was painful! I was vomiting up liters and liters of fluids and couldn't keep anything down so we were off to the ER again. They were unable to get an IV in me so I had an intra-osseous IV, where they take out a power drill and drill into your shin bone! No anesthetic or anything. Yes, it hurts exactly as much as you would imagine! I got some fluids and about a dozen anti-nausea meds and sent back home. It took another few weeks to fully stop vomiting and be able to eat and drink. I was so weak, and weighed barely anything, I couldn't stand up long enough to shower or brush my teeth. I basically laid in bed for 6 months.
Ostomy bag troubles
I also had a lot of trouble with my ostomy bag. It would leak at night so I had to sleep on a towel, and wake up covered in my own feces. It also leaked onto my skin and the acidic bile burned my skin off and left nasty open ulcers. I had short transit issues so anything I ate came right back out in 30 minutes. I didn't think I would make it, but I finally was able to get my second surgery in March 2014. That was a breeze in comparison! They took off the darn bag and I was able to "use" my new j-pouch. It was wonderful to be able to actually use the toilet again!!! I had less pain and was feeling great, only stayed in the hospital for 3 days and I was outta there! It took a while but I got my bowel movements down to 10x per day, and no more blood or pain. I still struggled with diarrhea and had to watch my diet- no fibers, no spicy, just a lot of bread and soft foods. Eventually I started having stomach issues and found out I have gastroparesis, meaning sometimes my stomach doesn't work fast enough, and food will sit in there for up to 12 hours before coming out. It causes a lot of bloating and pain. Instead of medicine I chose to change my diet and avoid fiber, high fat, etc. and I've been able to manage it alright. I also have GERD so I'm on medicine for that. My whole digestive system seems to hate me!
The symptoms continue
Despite not having any more active colitis, I still struggle with diarrhea, urgency, and having to run to the bathroom any time I eat. If I put even a crumb in my mouth I have to run to the toilet. It got so annoying and difficult to live this way, I finally was put on narcotics to control my bowel reflex. Immodium and other diarrhea medicines don't work for me, so narcotics was the only choice I had left, plus it helps manage the chronic joint pain I have from the steroids. I also am left with deficiencies in many vitamins, I have to take iron, magnesium, vitamin D, B12 and vitamin C because my system simply doesn't absorb enough. I'm down to about 10 pills a day which is an improvement. I also recently was diagnosed with narcolepsy on top of all this, which is another immune disease, as apparently people who have one immune system problem have a tendency to develop others. I tried to go back to college but ended up dropping out a second time when my narcolepsy was so bad, I was falling asleep in class all the time and couldn't function well anymore. Now I'm working on getting that treated, getting my health stable again so I can go back and finish school.
It's been a very long journey, I've been left with many scars and bad memories, but I look forward to the day when I can feel "normal" again- or at least as close to normal as I can get. We can only deal with one thing at a time, and sometimes life throws everything at you all at once. I wanted to share my story so anyone else out there who's been through similar situations can know, you're not alone! I'm only 24 and I've gotten the worst of it already. I made it! You can make it too. :)
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