Hi, I'm new to this so I'm not exactly sure if I'm posting this in the right place, but anyway.
I'm stuck in the middle of what *seems* to be a Crohn's flare, but with everything else going on in my life, I can't keep questioning whether or not this is really a flare, if it's related to my other conditions, or if it's just stress!! Since my history is very complex, I think it's probably best that I explain it a little first…
I'm 17 years old, diagnosed at age 9 and have been on many many different treatments but it looks as though based on my experience so far, I'll be dealing with regular flare-ups for the rest of my life. I had strictureplasty done on 100cm (in 3 different sections) of my small intestine over a year ago, which kept me in remission for 8 months which was literally a miracle, then I had a minor flare-up, but was good again until about 2 months ago. I have suffered with an eating disorder (anorexia nervosa) for 2 years now, as a result of my Crohn's and extended periods of nasogastric feeding, enteral nutrition, constantly changing diet etc. and unfortunately, my eating disorder has been one of the biggest triggers for my Crohn's over the past 2 years. The reason I mention it here on a Crohn's forum is that I'm questioning whether or not it is what is causing me to have all these issues lately, or if it really is a Crohn's flare.
2 months ago I was under a fair bit of stress as school had started back and I was beginning year 13 (decided to do my senior year over 2 years instead of 1) and didn't really know anybody in my year level, so was very nervous about going back to school, even though I usually love school. After a couple of weeks at school, I got mouth ulcers and my inflammation in my gums which is ALWAYS without a doubt, the first symptom of a flare-up. I left it for a while, they went away as usual, but then the constipation started. I would go to the toilet once a week, feel very uncomfortably full after eating, have my typical crohn's pains etc.
My stomach would also gurgle very loudly, as it always does with my Crohn's flares. I would get a build up of pressure that would then release as my stomach gurgled, and this was quite painful. I believe this is caused by some areas of narrowing in my small intestine, which I'm already aware of.
I saw my gastro after getting my bloods taken and also a stool sample for calprotectin levels. He said my calprotectin levels were only very very slightly elevated, pretty much normal compared to what they've been in the past during a flare. My bloods were also normal, which actually is normal for me, as my Crohn's only ever shows up in stool samples, MRE's and ultrasounds. He said that although my levels are normal, given my history with Crohn's and the fact that Im stressed out, this likely was a flare-up, so we'll just treat it as one.
I was put on Budesonide (9mg) and on a low fibre diet, which I was to have 3 Fortisips per day, plus 3 small low fibre meals (was a compromise for enteral nutrition) however, within 3 days I became extremely anxious, got a very bad tight feeling in my chest, was paranoid, constantly crying hysterically and begging to die. This is what has happened in the past with Prednisone, and hence, I'm not allowed to take that anymore, but Budesonide had never affected me psychologically like this in the past. I ended up in the emergency room twice with anxiety attacks (my mum wouldn't control me, and I was a danger to myself as I just wanted to die…thanks to the steroid messing with my mind). I stopped the Budesonide and went onto full enteral nutrition with Fortisips (I used to use Modulen, but they don't make that anyway apparently) as directed by my gastro. He said I would do this for 4 weeks instead of 6, as i have my 18th birthday in a weeks time and am supposed to be going out for a big family dinner, so enteral nutrition isn't ideal for that!
I've been on it for 4 weeks now, and while I'm not in anywhere near as much pain, I'm still getting so constipated and uncomfortably full and nauseous. I go a week without going to the toilet, then one day I'll go multiple times a day with D, and then the cycle repeats for another week or so. The thought of food right now makes me nauseous, and despite enjoying the taste of Fortisip, am only managing to drink 3-4 per day…when I'm supposed to have 8 according to my dietician. I lost nearly 4kg in the past couple of weeks (bringing my weight to something like 44-45kg, and I'm 170cm in height, however am blind weighed so don't know the exact number, only the difference from my last weight). The thing is, despite not being on the steroid anymore, my anxiety and stress levels are through the roof, I constantly feel nervous and anxious, I have absolutely no appetite at all. I have no desire to eat or drink anything, not even water, I'm just so on edge all the time that it doesn't even occur to me. My mum keeps lecturing me about it, and I am aware that I am doing the wrong thing however, when you feel sick to your stomach and uncomfortably full, eating/drinking (Fortisip) is the last thing on your mind!!
I know that a large part of this is due to my eating disorder (I was in recovery for a while, but this whole situation has triggered what I believe may be a relapse) and anxiety..but at the same time, the constipation, bloating and nausea were all happening before this "anxiety episode" occurred after the steroids. My gastro has booked an MRE for me sometime soon, and has ordered another stool sample and changed my Methotexate from oral back to injections as they have always worked better for me. I had my infliximab infusion the other day, and feel no different after it either. I'm yet to do my Methotexate injection as I can only get it from the pharmacy tomorrow morning. I also recently got a chest infection, (started as a little cold but got bad due to my immune system being suppressed) and just finished my course of antibiotics. I'm still feeling pretty horrible from that too.
I know this is an extremely long post, but I just want to get some opinions from other people as with everything going on in my mind (anxiety, eating disorder etc.) it's very difficult for me to even comprehend what's going on. I acknowledge that not all of this is Crohn's related, but it's just not making sense, as just the other week, my gums and entire jaw got inflamed again. When I saw the dentist for a filling, she was reluctant to do one as she saw the state of my gums and was shocked, I couldn't even open my mouth fully. I see my gastro in 2 weeks, and I honestly don't know what to tell him. I just feel like such an idiot, with all of this going on at once I feel like it might be stress related…but I feel like I'm just wasting his time, you know? My test results weren't too bad last time, and I don't see how different they're going to be now (8 weeks later). Sorry if this sounds like a very immature and whiny first post, it's just that I don't know anyone else with Crohn's who understands what it's like. I just have no clue what to expect, everything in my life is spiralling out of control right now, and I can't even be certain whether or not this is even a Crohn's flare or just a product of all this stress.
Also just wanna add, my abdomen is quite tender on the lower left side, usually where my narrowing is. I get quite bloated, however, due to being very thin, people don't quite see this as "bloating", they think it's "stupid" that I consider it bloating. However, it's to the same degree it was in the past when I've had bowel obstructions, and even still, prior to surgery even the doctors would tell me i didn't "look" bloated, but i knew what my stomach normally looked like, and it wasn't like this that's for sure!
I'm stuck in the middle of what *seems* to be a Crohn's flare, but with everything else going on in my life, I can't keep questioning whether or not this is really a flare, if it's related to my other conditions, or if it's just stress!! Since my history is very complex, I think it's probably best that I explain it a little first…
I'm 17 years old, diagnosed at age 9 and have been on many many different treatments but it looks as though based on my experience so far, I'll be dealing with regular flare-ups for the rest of my life. I had strictureplasty done on 100cm (in 3 different sections) of my small intestine over a year ago, which kept me in remission for 8 months which was literally a miracle, then I had a minor flare-up, but was good again until about 2 months ago. I have suffered with an eating disorder (anorexia nervosa) for 2 years now, as a result of my Crohn's and extended periods of nasogastric feeding, enteral nutrition, constantly changing diet etc. and unfortunately, my eating disorder has been one of the biggest triggers for my Crohn's over the past 2 years. The reason I mention it here on a Crohn's forum is that I'm questioning whether or not it is what is causing me to have all these issues lately, or if it really is a Crohn's flare.
2 months ago I was under a fair bit of stress as school had started back and I was beginning year 13 (decided to do my senior year over 2 years instead of 1) and didn't really know anybody in my year level, so was very nervous about going back to school, even though I usually love school. After a couple of weeks at school, I got mouth ulcers and my inflammation in my gums which is ALWAYS without a doubt, the first symptom of a flare-up. I left it for a while, they went away as usual, but then the constipation started. I would go to the toilet once a week, feel very uncomfortably full after eating, have my typical crohn's pains etc.
My stomach would also gurgle very loudly, as it always does with my Crohn's flares. I would get a build up of pressure that would then release as my stomach gurgled, and this was quite painful. I believe this is caused by some areas of narrowing in my small intestine, which I'm already aware of.
I saw my gastro after getting my bloods taken and also a stool sample for calprotectin levels. He said my calprotectin levels were only very very slightly elevated, pretty much normal compared to what they've been in the past during a flare. My bloods were also normal, which actually is normal for me, as my Crohn's only ever shows up in stool samples, MRE's and ultrasounds. He said that although my levels are normal, given my history with Crohn's and the fact that Im stressed out, this likely was a flare-up, so we'll just treat it as one.
I was put on Budesonide (9mg) and on a low fibre diet, which I was to have 3 Fortisips per day, plus 3 small low fibre meals (was a compromise for enteral nutrition) however, within 3 days I became extremely anxious, got a very bad tight feeling in my chest, was paranoid, constantly crying hysterically and begging to die. This is what has happened in the past with Prednisone, and hence, I'm not allowed to take that anymore, but Budesonide had never affected me psychologically like this in the past. I ended up in the emergency room twice with anxiety attacks (my mum wouldn't control me, and I was a danger to myself as I just wanted to die…thanks to the steroid messing with my mind). I stopped the Budesonide and went onto full enteral nutrition with Fortisips (I used to use Modulen, but they don't make that anyway apparently) as directed by my gastro. He said I would do this for 4 weeks instead of 6, as i have my 18th birthday in a weeks time and am supposed to be going out for a big family dinner, so enteral nutrition isn't ideal for that!
I've been on it for 4 weeks now, and while I'm not in anywhere near as much pain, I'm still getting so constipated and uncomfortably full and nauseous. I go a week without going to the toilet, then one day I'll go multiple times a day with D, and then the cycle repeats for another week or so. The thought of food right now makes me nauseous, and despite enjoying the taste of Fortisip, am only managing to drink 3-4 per day…when I'm supposed to have 8 according to my dietician. I lost nearly 4kg in the past couple of weeks (bringing my weight to something like 44-45kg, and I'm 170cm in height, however am blind weighed so don't know the exact number, only the difference from my last weight). The thing is, despite not being on the steroid anymore, my anxiety and stress levels are through the roof, I constantly feel nervous and anxious, I have absolutely no appetite at all. I have no desire to eat or drink anything, not even water, I'm just so on edge all the time that it doesn't even occur to me. My mum keeps lecturing me about it, and I am aware that I am doing the wrong thing however, when you feel sick to your stomach and uncomfortably full, eating/drinking (Fortisip) is the last thing on your mind!!
I know that a large part of this is due to my eating disorder (I was in recovery for a while, but this whole situation has triggered what I believe may be a relapse) and anxiety..but at the same time, the constipation, bloating and nausea were all happening before this "anxiety episode" occurred after the steroids. My gastro has booked an MRE for me sometime soon, and has ordered another stool sample and changed my Methotexate from oral back to injections as they have always worked better for me. I had my infliximab infusion the other day, and feel no different after it either. I'm yet to do my Methotexate injection as I can only get it from the pharmacy tomorrow morning. I also recently got a chest infection, (started as a little cold but got bad due to my immune system being suppressed) and just finished my course of antibiotics. I'm still feeling pretty horrible from that too.
I know this is an extremely long post, but I just want to get some opinions from other people as with everything going on in my mind (anxiety, eating disorder etc.) it's very difficult for me to even comprehend what's going on. I acknowledge that not all of this is Crohn's related, but it's just not making sense, as just the other week, my gums and entire jaw got inflamed again. When I saw the dentist for a filling, she was reluctant to do one as she saw the state of my gums and was shocked, I couldn't even open my mouth fully. I see my gastro in 2 weeks, and I honestly don't know what to tell him. I just feel like such an idiot, with all of this going on at once I feel like it might be stress related…but I feel like I'm just wasting his time, you know? My test results weren't too bad last time, and I don't see how different they're going to be now (8 weeks later). Sorry if this sounds like a very immature and whiny first post, it's just that I don't know anyone else with Crohn's who understands what it's like. I just have no clue what to expect, everything in my life is spiralling out of control right now, and I can't even be certain whether or not this is even a Crohn's flare or just a product of all this stress.
Also just wanna add, my abdomen is quite tender on the lower left side, usually where my narrowing is. I get quite bloated, however, due to being very thin, people don't quite see this as "bloating", they think it's "stupid" that I consider it bloating. However, it's to the same degree it was in the past when I've had bowel obstructions, and even still, prior to surgery even the doctors would tell me i didn't "look" bloated, but i knew what my stomach normally looked like, and it wasn't like this that's for sure!
