Looking For Someone With A Similar Experience With Colitis And Ileostomy

Question

Hello,I'm not sure if this is the correct section for this post, which may be more of a rant than a friendly post, so please let me know if it needs to be moved or removed. Thanks.The following is my experience, or lack thereof, with colitis.I'm currently nine weeks post-ileostomy surgery. It was emergency surgery for acute severe ulcerative colitis. I started university studying biomedical science (of all things) and at the same time developed the symptoms of colitis rapidly over the course of about three weeks. I obviously had bloody diarrhea, however it wasn't an alarming amount. It was the fatigue that alarmed me. I would struggle to make it to my next lecture during the ten-minute break because I would have to sit down to catch my breath multiple times along the way.On the 10th of March, a gastroenterologist phoned me directly at 7:30 am while I was getting ready to leave for uni. I was originally booked in to see another gastro on the 22nd of March, which I now realize I would have most likely died first. He basically told me to forget about uni and the practical I was booked in for and go to the hospital straight away. He said that my inflammatory marker on one of the multiple blood tests I had done for my GP over the previous two weeks was too high, and that he needed to perform a sigmoidoscopy as soon as he could. His phrase "pack an overnight bag" made me and my parents assume that I'd be there for a night or two, pumped full of antibiotics, and sent on my way. He told me that afternoon that I had a case of acute, severe ulcerative colitis, a disease that neither me nor my parents had ever heard of. We had hope that the steroids would fix me, as we were told that 7/10 people respond to it, and of the 3/10 that don't, 2/3 of them respond to Infliximab.I spent the next four days being pumped full of hydrocortisone, blood, iron, and platelets (I was very anemic), but the steroids did nothing, which was proven by another sigmoidoscopy. I was then given a dose of Infliximab, which my gastroenterologist told me usually takes around two days before it starts affecting me. And that's just what I thought happened; two days later, I felt fantastic, but it turns out that it was just the blood and fluids I had been given over the days prior that were giving me such a boost. I found this out on Friday morning (17th of March) when the surgeon came in and noticed my stomach was somewhat distended. I had some X-rays done and it turned out that my colon had dilated to 8cm, and a healthy colon was about 3.5cm, though I wasn't told the severity of my colitis at the time, and I was sent for another sigmoidoscopy. My parents and I were kept waiting outside the room where the sigmoidoscopy was to take place for about 15 minutes, and it was the longest and scariest 15 minutes of my life. As I said, at this point I had no idea about how ill I was and as I was sent down for the sigmoidoscopy I was told by the surgeon that it would basically determine how bad the colitis is and whether or not it needed to be operated on.I was told at just after 2:00 pm that I was to be operated on that day, and that surgery would start at 4:00 pm. The surgeon said I had toxic megacolon, and waiting until the day after would be dangerous as I was at a high risk of perforation, which I wouldn't even feel due to the amount of blood and steroids I had in my system. I had received a brief visit from a stoma nurse earlier in the week, but both my parents and I didn't really want to talk to them as we were so hopeful that the Infliximab would work.After surgery, I felt quite literally gutted. Both physically and emotionally, the ten days I spend in the hospital after my operation were the toughest days I've ever experienced. I had gone from being a fit and healthy lad, exercising almost daily, eating very healthily and starting my uni studies, to taking minutes to simply get out of bed, at which point I would feel dizzy and have to sit down anyway. Reading people's stories online didn't help either. It seemed as though everyone had struggled with colitis for months or years before making an informed decision to have surgery. I never struggled with colitis in the same way. I experienced it for three weeks and assumed it was a mere gut infection.The surgeon, though extremely good, very friendly, and always informative about my concerns, seems to discuss things from quite a professional point of view rather than getting to know his patients.The hematologist was, again, very friendly but also never bothered to really talk to me about my situation.The nurses and stoma nurses were, of course, fantastic (aside from one of the stoma nurses who was rather hostile all of the time...), but I rarely saw the same person twice.Other than my parents, the gastroenterologist was the only person who I can confidently say bothered to sit down and have a personal chat with me and my parents about me, my situation, and how I was coping with it both physically and emotionally.I apologize for such a long story, but as I said at the beginning, this is somewhat of a rant about my experience.I quite enjoyed my hospital stay, as weird as it may seem. Being a biomedical science student, I have always wanted to study medicine so I was rather comfortable in the hospital as I knew that I needed to be there if I was to get any healthier. Having a button to call a nurse anytime I needed help or was in pain was a great comfort, and the constant visits from the gastroenterologist were, again, a great comfort.I'm now just over nine weeks post-op. Overall I have recovered and learned to accept my ileostomy much faster than I expected, but mentally I have struggled, especially recently. I was (and still am) overwhelmed with how fast it happened, how close I came to dying without even knowing it, and how dramatically my life has changed, but I often feel alone. I have been seeing a psychologist regularly since leaving the hospital and he has helped me accept my situation and develop strategies to cope, but he doesn't know much about any of what I've been through, not that I expect him to know. My parents have been amazing, but like me, they are completely new to colitis and ileostomies. None of my friends had heard of it and can often be a bit uncomfortable talking about it, which I suspect is because they don't want to offend me (not that I care if they have a laugh about it. I try to).After such a long and draining story, my point is finally this: though I've had so many people around me over the last few months treating me and supporting me, I feel alone very often. I try to read people's stories online, but the majority of people seem to have made the choice, or suffered with colitis for years, so having an ileostomy for them is a godsend. I feel the opposite. Because I had the symptoms for such a short amount of time, it has taken a good life away from me. I have had to defer uni until mid-July, I can't exercise like I used to, I have to be wary of what I'm eating, and I wasn't even at uni long enough to meet some new friends that I can relate to about what I want to study. I would like to know if there is anyone here who has had a similar experience to me, whereby they had rapid and severe colitis and was given very little time to understand what it was and the effects of a colectomy and ileostomy, particularly when they were a teenager. I really feel like I've mentally recovered as much I can on my own as I'm beginning to feel as though I've taking steps backwards recently in regards to how I'm coping with it all.If you managed to read through all of that, thank you for your time. Of course, any input is welcome and greatly appreciated. I have never posted on here before, so please let me know if this is in the wrong place.Thank you,Hamish

Kiwi Al · Answer

Hi, I can relate. I had UC for more than 10 years. I tried every drug that was available in New Zealand. I was on a drug trial for a drug called Etrilizumab that changed my life for just over a year. Then the trial was abandoned because results weren't consistent enough for the drug to be licensed. Over the next 12 months, my life went to hell. I was going to the bathroom up to 30 times per day, had accidents because I was stuck in traffic and couldn't get to a bathroom. In the end, I had surgery and am 3 months post Ileostomy. I can tell you this is the best I have felt for 10 years. I am 64 years old, work out 4 to 5 times per week, swim, snorkel, go hunting, and ride my motorcycle, all things I haven't been able to do for a few years.
Embrace the change, accept what you have, and live your best life.

Looking for someone with a similar experience with colitis and ileostomy

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