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

HungryHamster · Answer

I know that the J-pouch is risky and my surgeon told me that around 1/4 people with a J-pouch get pouchitis at some point, not to mention the other risks involved like it bursting and all of that. While these are very serious risks and they obviously worry me quite a bit when I think about having the J-pouch, if I didn't do it then I'd spend so much time thinking "what if I got a J-pouch and it worked out fine?". I think I'd always have that at the back of my mind and it would drive me mental if I never tried. There's also the extent of much dislike of the bag. While I fully understand that it saved my life, that doesn't stop me from hating it more than anything. As I mentioned in an earlier post, I never had the extended period of pain, diarrhea and fatigue, I only had symptoms for about three weeks. That's probably why I hate it so much, as it doesn't really feel like it gave me a new life like others say it did for them, instead it feels a bit like it took mine away. But anyway, I'll probably be reading and worrying about the J-pouch until the day of surgery, at which point I'll probably worry even more, but like I said, I'd never forgive myself if I didn't try it. My stoma nurses weren't too harsh on the J-pouch, so I suppose I haven't experienced too much negativity about it.

Thanks,

Hamish

spinn87 · Answer

Hey Hamish - followed your story entirely. It's very, very similar to what happened to me and how I ended up with an ileo. I feel like we are one of the few people with whom steroids or biologic medicine did save us. I must say - God has a plan for each one of us. I was at my peak in terms of fitness and eating healthy until it all came down on Jan 1st (no, I didn't go overboard on NYE, I don't even drink). Like you, I have mostly come to terms with life though at times I get lonely. It's very important to be around family or even just friends, and this helps divert the mind. Lastly, what I feel helps me the most is that I have stopped thinking about what the future holds. Take a day as it comes and live for the day.

Feel free to contact me if you would like to connect.

HungryHamster · Answer

Hi,Not blowing my own trumpet or anything, but I was at the healthiest I had ever been prior to getting UC symptoms. I was eating very healthy and exercising 6/7 days. I'd love to know if any lifestyle factors affect UC, but I suppose I'll have to wait until they figure out what causes it.I've been trying to occupy myself by being in contact with friends often, but some days I am really not in the mood and find it hard to drag my mind away from what ends up being a mountain of thoughts. I suppose it's all part of the learning process and I'm sure it'll happen less with time. This website has been great so far. It's great to be able to write this sort of stuff down and chat with people that understand what's going on. For that, I thank everyone on this website.Thanks,Hamish.

veejay · Answer

Excellent pieces of writing, Hamish. You articulated your situation brilliantly.... Congratulations.

You are on the right site. The majority of people are here to help, as shown by the feedback/advice you have already received.

The trauma you have experienced does not stay with you forever, and age is on your side. You still have the world at your feet in our magnificent country.

I heard the other day that the emu and kangaroo on our national emblem are there because neither animal can take a backward step. Don't know if that's true, but it feels right. (I do know 'roos don't like running downhill).

Point being, Hamish, with the right application and dedication as you know, one can achieve anything in our Great Southern Land.... Bag or no bag!

So from a "Mexican" to a "Banana Bender," my advice is "go get 'em son."

V.J.

HungryHamster · Answer

Hi VJ,Thank you for your message, you are definitely right in saying that I'm on the right site. From the very little time I've spent here, I have learned so much and it has been a great help by allowing me to write my thoughts down and talk to people that have "been there and done that".In regards to your comment about my writing, I've been given the title of "Grammar Nazi" by my friends over the years. While some may not appreciate the phrase, I think it sums me up pretty well! Though I've made some pretty simple errors in my posts. Serves me right for not proofreading...I have no doubt that the trauma and worry will lessen with time, but because I'm currently in limbo in some regards, I don't really have a routine and I'm not doing anything of any particular value. I've had to defer this semester of uni, and so until that starts up again in mid-July, I am sort of stuck sitting around trying to pick up hobbies to kill the time. I'm sure that once uni starts, I will notice a fairly rapid decline in how much I'm worrying or feeling down because I'll actually be doing something on a regular basis to interest me and keep me occupied. I'm hoping to return to taekwondo in the next week or two, as I did it for nearly four years and it's the only sport that I have actually been alright at. Hopefully, I don't give myself a hernia with all of the core work... got to try these things.That's a great way of looking at our national emblem, by the way. I've never thought of that, nor have I ever heard anyone explain it like that. Very clever, and it makes plenty of sense with our country's history. Quite an uplifting idea.Thanks again for your reply. Seeing new messages on here always brings a smile to my face as everyone is so supportive and can always relate.Thanks,Hamish

NotDeadYet · Answer

Hamish!
You write excellently. Everyone reading your post is responding to it because you draw us so clearly into what you've been through.
I also had a "quick" change to having a bag.
I was diagnosed with stage 4 ovarian cancer, and due to a VERY responsive and zippy medical team, I was out of surgery with a warned-about-but-not-particularly-expected colostomy bag within 3 weeks of diagnosis. I went from "what's this little bump on my ribcage?" to "What's this colostomy bag stuck to me?" in less than a month. Know how you feel that way. Awwwk!
But I'm way older than you, and female. We come to terms with severe body changes pretty early on. At what point do cute college guys cease stopping and turning to look? And how attractive do we feel when pregnant? And the extra pounds that we naturally will carry later on, how do we adjust our clothes to accommodate the body shifts?
But the fun part of being older is that our friends are more mature, too. You can say "colitis" or "ostomy bag" and they know what it is, even if they don't have their own.
And you're a guy. So dating with a bag shouldn't be an issue. . . femininity deals with stuff like that SO WELL!
As for friends? With me, I feel that any friend with whom I am close enough to, to share a room on a holiday, they are close enough to know about the bag and I WANT them to know. And maybe guys can't do this, but girls can. . . I'll tell them how it works and even show them mine (if clean). So they're not wondering. So they can just get on with the "Oh, OK, I get that now." And can move on comfortably.
Get onto Google, start a blog (easy and free), and start writing. It's a way to write a regular "rant" but you can add photos or music if you want. And you can rework your draft as many times as you want before you hit the "publish" button. I'd subscribe!

veejay · Answer

Ahh, Hamish, you did make me smile.It is no sin to be known as a 'Grammar Nazi'. Actually, it should be a badge of honor, especially nowadays as we watch the English language die a slow death.It is also no sin to say how you really feel... deep down. No one will think any less of you... especially on this site. Most of us have been where you are at the moment. Things do get better, I guarantee it.You do not come across as an ungrateful bastard at all. You come across as the person you are: a young man trying his best to come to grips with a life-changing situation.And if writing on this site or anywhere else is part of that therapy, then I say go for it. There are some great wordsmiths on this site who, like you, have penned some wonderful contributions over the years.You obviously have a flair for writing too, so on behalf of all your responders, please continue.V.J.P.S. Remember the old saying, Hamish: champions are those who get up when they can't!

HungryHamster · Answer

I apologize for a bit of a later reply than usual, I've been a little bit busy the last few days.

As always, thank you for the replies. I've said it before, but reading the messages on here are always very encouraging. It's great to see how much people on here seem to genuinely understand and care.

NotDeadYet, I know what you mean about waking up with a semi-explained-but-very-rushed ostomy bag. I think I mentioned it in my original post, but I was sort of warned about it but my family and I didn't want to talk to a stoma nurse because we were so desperate for the steroids and Infliximab to work. We were a bit blinded at the time. I know I certainly had the "it won't happen to me" mentality. Typical "bulletproof" teenage. Part of me is obviously self-conscious about the bag, but my biggest issue with it is that I just hate how much of a change it is and while I accept that it's part of my life, it still doesn't feel "normal" and it doesn't feel like it gave me a new lease on life because of how quickly everything happened. As I've said, I didn't really have the symptoms for long enough to feel as though it ruled my life at any particular point in time. I'm sure that once I start university again I will be fine because I'll be back to doing what I was doing before. Also, regarding other people and my ileostomy, ever since I woke up with the bag I have had in my head that anyone who has an issue with it beyond an initial reaction isn't worth my time. That may sound harsh, but to me it has basically killed any worries about social situations and the bag. I haven't had a girlfriend so I can't really comment on how I think females respond to compared to males. I only graduated last year from an all boys' school that I attended since year 5 (9 or 10 years old) and I wasn't at uni long enough to meet anyone. I think because of that I'm not really concerned that much about meeting girls and how they'd respond. Good to know that females generally handle it very well, though.

VJ, I couldn't agree more about the English language dying a slow and painful death. Growing up with a Scottish dad, my family and I have always been quite "pro-British". Call me old-fashioned, but I've always blamed American English for the deterioration of the language. Nothing personal, that's just the way it is. I definitely wear the title of Grammar Nazi as a badge of honour. In my eyes, language is crucial for communicating, so we can't go around making new words or dropping apostrophes willy-nilly. Anyway, I have always enjoyed writing in some ways, but I was always better at writing analytical essays and scientific reports at school. I enjoyed them far more than creative writing too. This site has been great for me, not just for writing but for reading too. I have found it very interesting to read other people's experiences, not to mention how encouraging everyone on this thread has been to me. Your inspirational quotes and your story about the kangaroo and the emu have been very uplifting to read and always make me smile. Thank you very much, sir.

Thanks again, everyone. You are all fantastic people.

Hamish

Pooter · Answer

I had my ileostomy surgery at the age of 12 due to U/C. I'm 58 now. I had U/C for a while before I had surgery, I don't remember much as I was a child. My mother told me I was in a coma after my surgery. The doctor did not think I was going to make it. I do remember going places and looking for a bathroom and most times did not make it. Going to school after surgery was really rough on me. I was in 6th grade. I dropped out of school in the 8th grade but managed to get my GED. I went to work at 18 and worked until I was 55. I could not work anymore due to 3 parastoma surgeries during the years. I now have another parastoma hernia that will not get fixed. The doctor says there is not enough abdominal wall to attach to. I have had a girlfriend for 14 years now who takes very good care of me. I was married for 20 years, but my wife passed away in 2001. I have a lot of experience with ostomy. I can go 3-4 days between pouch changes. If I can help anyone here, just message me. I would be glad to help.

Marvin

Anonymous · Answer

Hi, I lived through UC for 7 years. Forced to withdraw from Uni too. Had an emergency colectomy in 98. It hasn't been easy as staying employed is impossible due to short bowel syndrome. I'd like to tell you it'll all get awesome but that hasn't been my experience.

Anonymous · Answer

Hi, in reading your experiences I felt like I was reliving my emergency colectomy and J pouch construction at Toronto General in February 98. It was the most traumatic ordeal of my life and I'd already lived through a brain hemorrhage and botched surgery that left me partially paralyzed. A nurse in '98 neglected me and verbally and physically assaulted me when I was 12 hours post-op and completely helpless and complained of the former. Nothing happened when I filed a written complaint except her co-workers did a work-to-rule action against me by not answering my call bell for 45 minutes and bringing essential pain meds almost an hour late. I have PTSD from that experience and do not trust the med machine at all. I hope your stay was less hellish.

NotaBaglady · Answer

I had UC for 15 years. I was told I had Depressive Anxiety. I was treated with anti-depressants and sedatives until I was a zombie. I still had severe pain and no bowel control. The surgeon who did surgery for rectal abscess gave me the diagnosis of UC and referred me back to the gastroenterologist. I was so weak that I fell down in his office and was unconscious. I was sent to the hospital. The doctors were treating me, trying to get stable enough for surgery, but I was told I probably would not survive surgery. My colon was removed, and I had an ileostomy with a pouch. After 9 years, I got a Barnett Continent Intestinal Reservoir (BCIR). That was 23 years ago. I would recommend this to anyone who is a good candidate for this procedure. My insurance covered it because of the severe skin irritation from the adhesive and wafer I was using. This has been quite lengthy; however, I wanted to share my experience. I am a very healthy, active 76-year-old.

SURVIVOR#15 · Answer

I am 49 years old and was a real healthy and athletic kid until I got sick at the age of 13 years old and found out that I had Ulcerative Colitis. Back then, they didn't know a whole lot about Ulcerative Colitis and I actually had colonoscopies done in the doctor's office without sedation. They also didn't have very many meds to help treat it and I lived a miserable life. I ended up with colon cancer when I was 28 years old. I finally ended up with a permanent ileostomy. I can tell you right now that my life is so much better and I feel way more than hurting all the time and trying all the time to make it to the restroom. I have more to tell you, but I'm falling asleep. Keep your head up, brother!!!!

Immarsh · Answer

Hi Hamish,All the issues and thoughts you're having about your experiences being sick with UC, and now living with an ileostomy are perfectly normal.I wrote to you last year (I'm Marsh) and it's still posted, so you can reread it if you'd like. I'm 50+ years post-surgery, and the 4 years from disease to surgery still replay in my mind. Sometimes, I mourn for what I consider my lost youth, and other times I'm grateful that it was "only" 4 years. Sometimes, I'm angry that my parents refused consent for the surgery in the first few months, and then other times, I fully understand their wish for me to get well and "be normal". I was out of school for 4 years.....which put me out of step with classmates, and even more so, when I returned to school, and saw all the work I had to make up, if I wanted to finish high school and go on to college. More anger, more regret, more sorrow. But I completed high school, had some college, and then finished up, 12 years later, after getting married and having two children (both of which have IBD). One has Crohn's and the other ulcerative colitis. They've had a somewhat difficult time in the early years, maintaining their health, without surgery, but both are doing well now, one on medication, and the other controlled by diet.... It's a blessing. Now.....I just worry about their very young children. So far, the 2 little Aussie boys (9, 6) are well, and our little 7-year-old Princess (here in the states) is okay as well.It's good that you're seeing a therapist, mostly for you to accept what is, and make a plan for your future. Many people modify what they choose to do (as a life work) after they've been through traumatic illnesses. You might find your life plan changing, as you make your (more) adult choices. I became a special education teacher (for very young children) as a result of my being hospitalized during my school years.... Accepting what has happened to you might become a lifelong challenge.......good for you, in fact, if it helps you guide your path and decisions towards meaningful work. My Aussie son (Jay) is now 43 and lives in Queensland. If you feel you'd like to have a conversation with him.....I'd be glad to introduce you. He doesn't have an ileostomy, but was there for a college friend who needed to have the surgery. We don't talk about (illness) that often, but as a mother, of course, I worry for him...and his young children. His wife developed MS after the birth of their first child, and although she's doing well now, that shadow always hangs over them.....I wish you the best of luck and continue what you're doing. See the therapist when you're ready, go back to school, reach out to people on this site, or at ostomy groups, to help you listen and learn, and accept. All these things take time....so give yourself that most special gift.....of time. Marsha

Anonymous · Answer

Hello Mr. Hamster, my story is much the same, extremely fit at 200, 135 after surgery, happened fast, surgery or death. I tell people to take nothing for granted, because it can all change in a second. In ICU being pumped full of antibiotics, fluids, and hemoglobin.

Looking for someone with a similar experience with colitis and ileostomy

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