It's been a bit of a while since my last blog entry. I thought for this one it was about time I shared a detailed version of my full story.
My name is John. I am a student at Manchester Metropolitan University. I am on my second attempt at the third year of the BEng Computer and Communications Engineering.
I first started to notice a problem on Christmas Eve 2004. I noticed a few spots of blood in the toilet. My immediate reaction was to tell my parents and seek immediate medical advice. My parents' reaction to this was to tell me to stop being silly because we all bleed through our bottoms from time to time. So, I delayed going to see the doctor. When I finally did see the doctor, he wasn't too concerned. He gave me a rectal examination and arranged a camera test at the hospital which was actually booked for 07/07/2005. I didn't go to that camera test because my parents decided that it would be a better use of my time to go on holiday with them rather than get a potentially life-threatening medical problem sorted out. I actually remember sitting on the toilet, pooping blood, and listening to news about the bombings with my mum shouting through the door that I was being silly and we were going to be late. I never rescheduled the camera test since nobody was taking me seriously.
I first became properly ill in late 2006 when I noticed the bleeding was getting worse. I also noticed a lump inside my scrotum which wasn't one of my testicles. On 08-01-2007, I saw the doctor and got rushed immediately to the hospital. It was found that I had an unusual and very complex anal/perineal fistula which actually goes from my rectum to my scrotum. At that point in my life, I was in the second year of an HND Electrical/Electronic Engineering at Wigan and Leigh College. I was too ill to continue my studies, so I had to put my studies on hold. When I returned in September, everyone who I had been working with for the past four years had gone, so I was just on my own in a new class. Also, that year, one of my best friends moved away, so it was a really bad time for me.
On 05-05-2008, I was diagnosed with suspected Crohn's disease and had a loop colostomy operation (my stoma's name is Gordon). The colostomy does not function as well as it should. I still poop through my bottom quite a lot, and sometimes more comes through my bottom than through the stoma. Until December 2009, I was prescribed a medication called Humira. This medication treated the Crohn's and was supposed to help heal the fistula. I used to have the medication once every two weeks, and it left me feeling exhausted. This was bearable up until November 2009 when I started to miss lectures because of it. I had a really bad reaction to it, so the doctors prescribed Azathioprine. After that, I wasn't feeling as exhausted, but over the next few weeks, I started to feel really tired and was having trouble staying awake, which meant I missed a lot of lectures. I was prescribed vitamin B12 injections and iron supplements. These had a bit of an effect, but they did not totally eliminate the tiredness and exhaustion. Also, in January 2010, another one of my best friends decided that he didn't like me anymore and didn't want anything more to do with me. This was really upsetting for me, but I didn't let it get me down, and a few days later, I registered for MeetAnOstomate and started making new friends online. Unfortunately, I didn't meet many people who lived locally at first.
After numerous blood tests, the cause of my exhaustion still has not been found. My consultant suggested that my health problems, amongst other things, may have caused me to become depressed, and this may be the cause of the problems. I consulted with my GP in October 2010, and she prescribed antidepressants. After four weeks on the antidepressants, I felt a lot worse than ever. I could not function at all and started missing lessons again. I could not physically cope, and all I could do was sleep all the time, which really upset me so much that the "crisis team" had to be called in to make sure I wasn't a danger to myself. After this, I stopped taking the antidepressants because they were making me feel worse. Also, at this point, I was having a few problems with my last remaining actual real-life friend. The problem started when I introduced him to someone I had met online because I wanted him to be a part of my new online life. He fell out with this person, and because I wasn't in a position to help him patch things up, he decided he didn't want anything more to do with me too.
At this point, my health problems just got worse and worse. My consultant didn't seem to care, and my GP wasn't doing anything because as far as she was concerned, I was depressed and refusing to take my medication. In January 2011, during my third year of the BEng Computer and Communications Engineering, I left university because I couldn't cope anymore.
In March 2011, I found a new consultant at another hospital. He told me to stop taking the azathioprine since, based on my notes, there is no evidence of active Crohn's, and taking any medication for Crohn's was completely unnecessary. Doing this made me feel a lot better, but then he just seemed to forget about me for six months. No tests, no medication, no operations, and nothing booked. His secretary just kept fobbing me off too. Just as I was reaching the point where I was about to complain, letters started coming through the door for tests. Also, around this time, I started back at university.
At the moment, this is how the situation is. I'm back at university, I still feel tired and exhausted, but it's not as bad. The fistula is still very painful and bleeds a lot at times. After a recent hospital visit, signs of active Crohn's have been found. As for what's going on with my life at the moment, I am back at university, although I am struggling to keep up because of my health problems. I haven't found a new set of friends yet, but I will keep looking. One of the loneliest times of my life was a few weeks ago when I got rushed into the hospital. My family had gone on holiday, and they knew it was possible I could get rushed in that week. During the first week, nobody even came to visit me, not even my roommates. That's basically my whole life.
That's terrible, a true friend will be there for you no matter what. And it's terrible that no one went to see you in the hospital. We all need support from both friends and family when we face a medical crisis. But you have friends here on this site that will be here to support you when you need to spill your guts. I hope you feel better soon. Donna
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Hi, just finished reading your blog, and it seems to me that the medical profession and friend situation have kinda let you down. I can see you really have tried to carry on with uni regardless of all your trials, and that you manage to go on even though you felt so tired and worn out. It's a great pity your family were on holiday when you needed them the most at that time of being rushed into the hospital, and it seems to always happen that way. Having found more active Crohn's could be the reason for you feeling so tired and exhausted. I hope they are going to sort you out with what they have found. I myself suffered from Crohn's and know how debilitating it can be, and you never know when it's going to show its ugly face again. I've been lucky over the years to have been in remission. As for being with friends, you're on this site and there are some really nice people ready to listen to the many troubles we go through. I do really hope you get sorted. You're young and need to be getting on with your studies. I hope you find true friends, whether it's on here or somewhere else. Good luck, John, in health and happiness. Take care, Ambies...
Read answers to frequently asked questions about how to change your pouch and participate in activities.
Wow John, you certainly have been through the mill both physically and emotionally! It is very true, as the girls have already said, that at times like this you certainly need friends. Thankfully, I've been fortunate to have my family here in Ireland and without them I would have been completely lost. I've also made some very good friends here on this site and they've been a great support. Please do look on this site for support.....we're all more than willing to give advice and encouragement, when you need. Wishing you better times ahead. Take care, Colm
John, we know you are still going through it mate, but just know this.... The doctors will eventually get you sorted and in the meantime you know your online buddies are always here to provide an understanding ear or share a problem. Stick with it mate, you've given me many a laugh, DD.
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Hey buddy... It has been a long time since you've blogged. So great to see you again! I remember our general chats, where you shared some of your struggles with me and it still breaks my heart. I admire your never-give-up spirit in spite of the roadblocks you've encountered. I wish I could say that all will be just fine, but I can't, so I won't. You're too smart to believe that anyway. What I will say is... Keep on keeping on! We can't control much, but we can control how we handle it. You and I know that Crohn's is the nightmare that keeps on giving, but at almost 55 years old, ugh, I feel safe in saying that you have a lot of life yet to live, my friend. My wish and hope for you is that treatments and chance of cures improve daily, with your days of suffering becoming a distant memory. Remember that this site is full of folks who share your fears, frustrations, and loneliness. Okay, so we can't reach out and touch you, but we can listen, share, suggest, sympathize, and understand. Don't sell us short, okay? Your old friend, BEG
Hey ducky! You're a braver person than I am, you're an inspiration to still be at uni. I would have given up a long time ago! Take care and I hope life treats ya better. x
Hey John - man, you really have been through the wringer - perhaps Ambie is right and the reason for the lack of energy is the Crohn's - I know that there are several natural foods and supplements that you can take to help improve energy; maybe some of them would help? It never hurts to try. As for the isolation that you are feeling, I know what that is like 100% - all of my family live in another city and we have never been real close (long story - mixed family) and they did not come to see me until I had been in the hospital for months. And then they only visited once and the only ones that came were my half-brother and stepmom. All my sister could say to me was that I was too young to have had this happen to me and she is far too wrapped up in her small delusional problems to give a s h i t about anybody other than herself. And as for best friends - I lost my one and only (15-year friendship) not too long after I was finally home from the hospital - I have not heard from him since Feb or March of this year. So I understand what you are going through in the friends and family situation. Recently, I am trying to connect with an old childhood girlfriend and other family members - girlfriend going good - family not so much LOL. As for friends, I really don't have any here in London - I made the mistake of excluding people from work and not participating in outside activities where I could have met new people. A big reason that I joined this site was to connect to people who have similar situations and who would understand and not be squeamish about my condition. I have found you to be a very good listener and a very good friend - Could I call you my FART buddy LOL? - The only thing I can say is try to move past the people who offer you nothing and look to the people who are gems and offer the world. There are several people on this site that I think fill this bill. Importantly, don't forget that we are here for you whether in sun or rain, happy or sad, mellow or right p i s s e d off. Let us help and support you as we do care and understand. And as Red Green says, "We're in this together." Take care - Terr
Learn about some basic diet and ostomy pouch routines that can help prevent them.
Hi there, I tried to respond on chat but it's just not working - saying there are too many requests to chat lol so hopefully this works?
Yeah, I think there's an issue with the chatroom today. It just completely froze on me.
Well, it just doesn't send my messages at all now. I've tried it so many times, but it just doesn't like me, ha! Sounds like you've been having a hard time of it, I can relate. I was researching the Koch pouch, but no doctor has suggested it to me, so I am unsure if it's too risky. It seems to be the same idea as the bag but just internally, leaves like a bullet mark but can be easily covered by a plaster or alike... worth looking into, mate. I'm planning to talk to my doctor about it asap.
I have a friend who has asked their doctor about the Koch Pouch. They said it's not done in the UK anymore. Here are the only 2 surgeons that did it:
Professor Neil Mortensen
Dept Colorectal Surgery
John Radcliffe Hospital
Oxford OX3 9TA
Mr David Bartolo
Western General Hospital
Colorectal Surgery
Edinburgh, UK
Hi John, OMG, I can't believe your mum thought a holiday was more important than your health. And who wants mates like them? I live near Brighton; pity we aren't closer, we could meet up. My daughter and son are your age, and I'd hate for them to go through what you have. I'm sure you will find some new mates, those who really care. Lyn. x