Hi everyone,
Although I was diagnosed some time ago, I only found this site a few weeks ago, and I wanted to say thank you so much for all the info, research and advice on here, it’s amazing. I’ve made a start, but there’s so much of it I’d still like to read through. The support also looks fantastic, and I hope to be able to help a bit too. Afraid my story turned out really long, but I have a couple of tips at the bottom if you want to skip to those!
Anyway, my story… I was diagnosed with Crohn’s back in May 2000, following a colonoscopy and barium x-rays. I was 24, and it was after around a year of a lot of diarrhoea and losing a bit of weight, although I’d only gone to the doctors about it a couple of months before the diagnosis. Symptoms have been various combinations of aching, a lot of pain, diarrhoea, tiredness, nausea, actually being sick a lot, fever, heartburn, sore joints, dry skin, losing blood, anaemia, bloating, wind, and loud noises in my tummy – isn’t this thing lovely! I was put on Asacol at diagnosis, but symptoms went downhill shortly afterwards though and continued to be quite bad through months of Budesonide, Prednisolone and Azathioprine. Oh and a month of Ciproxin, but that gave me even worse pain; and some time using a steroid foam enema. Looking back, this was quite a bad time, and I remember my GI consultant at the time didn’t seem to believe me that I still felt so awful and getting worse every time when tapering the Pred, and being told that he didn’t want to do any surgery because my Crohn’s was in several different places, and Infliximab was too new and expensive to give me.
However after 6 months of the Aza not doing anything and not being able to come off the Pred, he tried me on a liquid diet as a last resort before trying Infliximab (May 2001) - and this was brilliant, really reduced my pain and diarrhoea symptoms after just 2 weeks of being on it. So then they had me gradually start eating again and after a little while I came off the steroids though they kept me on the Azathioprine, and I was under doctors orders to eat 6 meals a day with puddings and snacks to try and put weight back on. For the next year or so I was still quite ill, spending a lot of time on the toilet, but it was so much better than it had been before, that I didn’t mind too much, and then it did eventually improve some more, and I remained fairly well through to 2007, with just episodes of pain and diarrhoea from a couple of times a week to a couple of times a month or so, and which usually settled quite quickly if I stopped eating and went back on the liquid diet for a day or two. (After initially being given different flavours of Ensure and Fortijuce to taste, I have lemon flavoured Fortijuce on prescription, which fortunately I like drinking, it’s just like slightly think lemon squash). I persuaded my consultant to let me come off the Aza in 2004 as I still felt it hadn’t done anything, and in fact my ESR levels dropped a lot in the months that followed, and have mostly stayed quite low ever since.
Between 2007 and 2012 I have had three lovely children… My pregnancies were usually ok to begin with but then with increasing symptoms. During the second one my Asacol was changed to Pentasa sachets, and I had a lot of time on the drinks during the last few weeks of the most recent pregnancy. There was a big flare about 16 weeks into the first one; we were away from home so that was my only trip to A&E in the whole of this - I was admitted for dehydration and put on an IV for 24 hours until the pain had gone and I could eat again. That flare continued a long time after that first baby arrived, during which I did a couple of courses of pred and did days on my drinks, and gradually got better. Then another flare began during the second pregnancy until 4 months afterwards when I had another colonoscopy (this is May 2010, so ten years since the first one), and this actually resulted in me feeling hugely better for the next two years! But then again a bad flare from about 30 weeks into the third pregnancy, around Easter of last year, with a lot of pain again all through last summer and not being able to eat much of the time.
I went back to my consultant and asked for help in October, so had bloods done ready for Azathioprine again, an MRI in November (my first) and a colonoscopy (the third one) in early January of this year, before seeing her again in mid January. At which appointment I was given the huge shock of being told they thought I needed surgery. I had actually been feeling better since I’d seen her in October! Aza was re-started there and then, and biologic treatment also discussed, and I was referred to see a surgeon. Who I saw a month ago, with my consultant there too: definitely surgery is needed, a resection for 3 strictures in the terminal ileum and fistulising between two loops of small bowel in the same area. The surgeon wants to take out 40cm of the small bowel, but according to the diagram he drew me, to also take out that end of the colon too which I presume means my appendix etc will all go too! It’s not urgent and he wanted to give the Azathioprine more time to try and reduce the inflammation that is next to the strictures in the small bowel, so it is booked for the last week in September – as I also wanted to wait if I could until the summer holidays are over and the eldest children are settled back into school/pre-school.
At the moment I’m feeling mostly ok, though increasingly having diarrhoea a few times most days, but not too much else in the way of symptoms. So I have been struggling a bit with why they want to do surgery now when I’m nowhere near as bad as last summer and that wasn’t as bad as back in 2000-2001. But they were sure that any medical treatment now can’t mend the strictures and fistula, and said that it is better to get the surgery done when I’m feeling well as opposed to waiting, and that there’s a better chance of it being key hole and not needing a temporary bag if they do it now. They also said that I have just got used to coping with the symptoms. My current consultant does know me and knows that I don’t often complain, and that when I do ask for help she does need to do something about it! She calls me stoical, and tries to make sure I do tell her how I really am, which I know I’m not good at doing, so that is good. I am still curious as to how long I could have had these strictures for, if they could have been there or at least started forming as long ago as 12 years? My symptoms haven’t really changed much over the years when I’ve had any, and from what I’ve read on here I think I had more stricture symptoms back in 2001 than now. Also obstructions have never been mentioned at appointments, only in the Surgeon’s follow up letter did it say he thought I’d had symptoms of that last summer, and that was just the same as the start of the flare in 2007. I assume that MRI scans are quite a new thing for looking at Crohn’s, as my small intestine had never been looked at between the barium drink x-ray test at diagnosis until now (it would have been in 2010 were it not for me getting lots better following the colonoscopy that year) – if it wasn’t for the info from that, symptom wise I would just be continuing with having my drinks instead of some meals and mostly trying to ignore feeling ill and tired. So I’m still not quite sure whether it is a good thing to know about the strictures etc or not – I guess only time will tell after the operation! And I’m still not sure whether the Aza is doing anything this time, if I would have been even worse now without it, or if I would be like this anyway, not sure if it’s possible to tell!
Anyway, so now I just have my fingers crossed that the surgery and recovery go well, trying not to be too anxious that they don’t find it worse than expected when they go in, and a tinsy bit of hope is creeping in that it might even improve everything for a while at least…
So there you have it. Nowhere near as bad as a lot of the stories I have read on here, but I’m so used to saying ‘I’m fine’ to everyone and hiding it when I’m feeling ill, or making it not sound as bad as it feels, it is actually quite strange/nice/refreshing to write it all down and be able to say that at times it felt awful, and to people who understand!
Having thought about it all in order to write this history, I do have a couple tips for those newly diagnosed / going through diagnosis or getting their first symptoms…
The main one is make sure you do tell your doctor / GI everything, don’t assume they know already! I think particularly when I was really ill after first being diagnosed, I wasn’t very good at telling the doctors/consultant things, I waited for them to ask if I had such and such – I thought that because they knew I had Crohn’s, they therefore would know what I was going through, but I now know how different everyone is with this disease, and so they wouldn’t actually have known without me telling them!
It definitely helps to write it all down before you go to an appointment, listing all your current symptoms and any questions you want answered so that you don’t forget when you’re there! And I agree with other people’s tips to keep a symptom diary, including your diet as well as medication so you can see if there is any pattern and work out what food affects you, as well as being able to tell if the current medication is doing anything. If you’ve got it all written down you can prove it to your doctor too. Also, one of my ways of coping with this is that I’ve learnt to block out the pain and number of toilet trips when they’re not actually happening – trying to forget about the Crohn’s is great between appointments, but a diary would really help with remembering how I’ve actually been when I see the doctor.
I definitely think that food affects my symptoms, it sometimes feels as simple as that if I eat I feel ill, when I stop I don’t – so initial treatments of steroids, that made me super hungry and eat loads, and then being told to eat lots to put on weight, I think now weren’t good for me at all! I haven’t had much luck with pinning down if there’s anything more specific beyond just fast food, fried food, lots of chocolate, large meals, cream; plus dairy in general made me worse back in 2000-2001. But I can sometimes eat these without any problems; I can eat what I think is exactly the same on one day as another, and one day be fine and the other not, it’s very annoying! At least I have my Fortijuce drinks, so I know I can get some energy and vitamins etc from them when I need to. Though I am rubbish at having the will power to stay on them for long apart from that initial 2 weeks years ago. As soon as I’m feeling a bit better I get hungry and forget that I was just feeling really rubbish. Or I get fed up with feeling ill and just want to enjoy eating something nice even though I know it will make me feel worse again later. I would like to explore diet more, and as I read more and more on the forum I keep finding really interesting information eg I’d never heard of juicing before, but what I’ve just read about it sounds good!
It is really frustrating that Crohn’s – and it’s treatments - affect us so individually, that you can’t just get diagnosed and start on one medication that is definitely going to help, but once you can get your head around that, at least you know there is something out there that will help, you just have to hang in there, try and keep positive, keep looking for it and fingers crossed you find it soon…
Sorry, this is really long, but thank you so much for reading x
Although I was diagnosed some time ago, I only found this site a few weeks ago, and I wanted to say thank you so much for all the info, research and advice on here, it’s amazing. I’ve made a start, but there’s so much of it I’d still like to read through. The support also looks fantastic, and I hope to be able to help a bit too. Afraid my story turned out really long, but I have a couple of tips at the bottom if you want to skip to those!
Anyway, my story… I was diagnosed with Crohn’s back in May 2000, following a colonoscopy and barium x-rays. I was 24, and it was after around a year of a lot of diarrhoea and losing a bit of weight, although I’d only gone to the doctors about it a couple of months before the diagnosis. Symptoms have been various combinations of aching, a lot of pain, diarrhoea, tiredness, nausea, actually being sick a lot, fever, heartburn, sore joints, dry skin, losing blood, anaemia, bloating, wind, and loud noises in my tummy – isn’t this thing lovely! I was put on Asacol at diagnosis, but symptoms went downhill shortly afterwards though and continued to be quite bad through months of Budesonide, Prednisolone and Azathioprine. Oh and a month of Ciproxin, but that gave me even worse pain; and some time using a steroid foam enema. Looking back, this was quite a bad time, and I remember my GI consultant at the time didn’t seem to believe me that I still felt so awful and getting worse every time when tapering the Pred, and being told that he didn’t want to do any surgery because my Crohn’s was in several different places, and Infliximab was too new and expensive to give me.
However after 6 months of the Aza not doing anything and not being able to come off the Pred, he tried me on a liquid diet as a last resort before trying Infliximab (May 2001) - and this was brilliant, really reduced my pain and diarrhoea symptoms after just 2 weeks of being on it. So then they had me gradually start eating again and after a little while I came off the steroids though they kept me on the Azathioprine, and I was under doctors orders to eat 6 meals a day with puddings and snacks to try and put weight back on. For the next year or so I was still quite ill, spending a lot of time on the toilet, but it was so much better than it had been before, that I didn’t mind too much, and then it did eventually improve some more, and I remained fairly well through to 2007, with just episodes of pain and diarrhoea from a couple of times a week to a couple of times a month or so, and which usually settled quite quickly if I stopped eating and went back on the liquid diet for a day or two. (After initially being given different flavours of Ensure and Fortijuce to taste, I have lemon flavoured Fortijuce on prescription, which fortunately I like drinking, it’s just like slightly think lemon squash). I persuaded my consultant to let me come off the Aza in 2004 as I still felt it hadn’t done anything, and in fact my ESR levels dropped a lot in the months that followed, and have mostly stayed quite low ever since.
Between 2007 and 2012 I have had three lovely children… My pregnancies were usually ok to begin with but then with increasing symptoms. During the second one my Asacol was changed to Pentasa sachets, and I had a lot of time on the drinks during the last few weeks of the most recent pregnancy. There was a big flare about 16 weeks into the first one; we were away from home so that was my only trip to A&E in the whole of this - I was admitted for dehydration and put on an IV for 24 hours until the pain had gone and I could eat again. That flare continued a long time after that first baby arrived, during which I did a couple of courses of pred and did days on my drinks, and gradually got better. Then another flare began during the second pregnancy until 4 months afterwards when I had another colonoscopy (this is May 2010, so ten years since the first one), and this actually resulted in me feeling hugely better for the next two years! But then again a bad flare from about 30 weeks into the third pregnancy, around Easter of last year, with a lot of pain again all through last summer and not being able to eat much of the time.
I went back to my consultant and asked for help in October, so had bloods done ready for Azathioprine again, an MRI in November (my first) and a colonoscopy (the third one) in early January of this year, before seeing her again in mid January. At which appointment I was given the huge shock of being told they thought I needed surgery. I had actually been feeling better since I’d seen her in October! Aza was re-started there and then, and biologic treatment also discussed, and I was referred to see a surgeon. Who I saw a month ago, with my consultant there too: definitely surgery is needed, a resection for 3 strictures in the terminal ileum and fistulising between two loops of small bowel in the same area. The surgeon wants to take out 40cm of the small bowel, but according to the diagram he drew me, to also take out that end of the colon too which I presume means my appendix etc will all go too! It’s not urgent and he wanted to give the Azathioprine more time to try and reduce the inflammation that is next to the strictures in the small bowel, so it is booked for the last week in September – as I also wanted to wait if I could until the summer holidays are over and the eldest children are settled back into school/pre-school.
At the moment I’m feeling mostly ok, though increasingly having diarrhoea a few times most days, but not too much else in the way of symptoms. So I have been struggling a bit with why they want to do surgery now when I’m nowhere near as bad as last summer and that wasn’t as bad as back in 2000-2001. But they were sure that any medical treatment now can’t mend the strictures and fistula, and said that it is better to get the surgery done when I’m feeling well as opposed to waiting, and that there’s a better chance of it being key hole and not needing a temporary bag if they do it now. They also said that I have just got used to coping with the symptoms. My current consultant does know me and knows that I don’t often complain, and that when I do ask for help she does need to do something about it! She calls me stoical, and tries to make sure I do tell her how I really am, which I know I’m not good at doing, so that is good. I am still curious as to how long I could have had these strictures for, if they could have been there or at least started forming as long ago as 12 years? My symptoms haven’t really changed much over the years when I’ve had any, and from what I’ve read on here I think I had more stricture symptoms back in 2001 than now. Also obstructions have never been mentioned at appointments, only in the Surgeon’s follow up letter did it say he thought I’d had symptoms of that last summer, and that was just the same as the start of the flare in 2007. I assume that MRI scans are quite a new thing for looking at Crohn’s, as my small intestine had never been looked at between the barium drink x-ray test at diagnosis until now (it would have been in 2010 were it not for me getting lots better following the colonoscopy that year) – if it wasn’t for the info from that, symptom wise I would just be continuing with having my drinks instead of some meals and mostly trying to ignore feeling ill and tired. So I’m still not quite sure whether it is a good thing to know about the strictures etc or not – I guess only time will tell after the operation! And I’m still not sure whether the Aza is doing anything this time, if I would have been even worse now without it, or if I would be like this anyway, not sure if it’s possible to tell!
Anyway, so now I just have my fingers crossed that the surgery and recovery go well, trying not to be too anxious that they don’t find it worse than expected when they go in, and a tinsy bit of hope is creeping in that it might even improve everything for a while at least…
So there you have it. Nowhere near as bad as a lot of the stories I have read on here, but I’m so used to saying ‘I’m fine’ to everyone and hiding it when I’m feeling ill, or making it not sound as bad as it feels, it is actually quite strange/nice/refreshing to write it all down and be able to say that at times it felt awful, and to people who understand!
Having thought about it all in order to write this history, I do have a couple tips for those newly diagnosed / going through diagnosis or getting their first symptoms…
The main one is make sure you do tell your doctor / GI everything, don’t assume they know already! I think particularly when I was really ill after first being diagnosed, I wasn’t very good at telling the doctors/consultant things, I waited for them to ask if I had such and such – I thought that because they knew I had Crohn’s, they therefore would know what I was going through, but I now know how different everyone is with this disease, and so they wouldn’t actually have known without me telling them!
It definitely helps to write it all down before you go to an appointment, listing all your current symptoms and any questions you want answered so that you don’t forget when you’re there! And I agree with other people’s tips to keep a symptom diary, including your diet as well as medication so you can see if there is any pattern and work out what food affects you, as well as being able to tell if the current medication is doing anything. If you’ve got it all written down you can prove it to your doctor too. Also, one of my ways of coping with this is that I’ve learnt to block out the pain and number of toilet trips when they’re not actually happening – trying to forget about the Crohn’s is great between appointments, but a diary would really help with remembering how I’ve actually been when I see the doctor.
I definitely think that food affects my symptoms, it sometimes feels as simple as that if I eat I feel ill, when I stop I don’t – so initial treatments of steroids, that made me super hungry and eat loads, and then being told to eat lots to put on weight, I think now weren’t good for me at all! I haven’t had much luck with pinning down if there’s anything more specific beyond just fast food, fried food, lots of chocolate, large meals, cream; plus dairy in general made me worse back in 2000-2001. But I can sometimes eat these without any problems; I can eat what I think is exactly the same on one day as another, and one day be fine and the other not, it’s very annoying! At least I have my Fortijuce drinks, so I know I can get some energy and vitamins etc from them when I need to. Though I am rubbish at having the will power to stay on them for long apart from that initial 2 weeks years ago. As soon as I’m feeling a bit better I get hungry and forget that I was just feeling really rubbish. Or I get fed up with feeling ill and just want to enjoy eating something nice even though I know it will make me feel worse again later. I would like to explore diet more, and as I read more and more on the forum I keep finding really interesting information eg I’d never heard of juicing before, but what I’ve just read about it sounds good!
It is really frustrating that Crohn’s – and it’s treatments - affect us so individually, that you can’t just get diagnosed and start on one medication that is definitely going to help, but once you can get your head around that, at least you know there is something out there that will help, you just have to hang in there, try and keep positive, keep looking for it and fingers crossed you find it soon…
Sorry, this is really long, but thank you so much for reading x
