URGENT HELP. Crohn's Flare Up.

[Crohnie101]

Hi, so I'm 15.5 and am a female who's had Crohn's since I was 9. I have flare-up's every four months or so. Right now I'm having a severe flare-up and haven't been to school for 2 weeks, and have been ill for 3 weeks. Over this period of time I haven't eaten or drank barely anything, yet I surprisingly haven't lost any weight. I am on infliximab and had my 2 monthly treatment 2 weeks ago and am also on azathioprine. During a flare-up I am put onto Budesonide/Entricort as other treatments have not worked for me in the past, and/or the side-affects outweigh the actual results.

2 weeks ago I had my CRP's tested, and they weren't high, they were average. I was a bit shocked as I have been double-bent in pain for 3 weeks now, unable to consume anything because of the pain. I started off going to the toilet 6 times a day, and in the past week however, I've been able to go only once in seven days. I feel uncomfortably full and constantly nauseous, and the pain is probably a 9/10 at the moment. I spoke to my GI over the phone who upped the dosage of my Budesonide as he'd kept me on 3mg for months now, so I am now on 9mg however after over a week, nothing has changed. I think because I was on 3mg for so long, my body has just gotten used to the medication so is now not responding to it.

My mum and dad don't believe that I am as ill as I say I am based on the fact that I still talk fine, and despite being so weak and frail, am able to argue with them (I always argue regardless of whether I am sick or not, it's just my personality). They believe that I'm starting to "look a bit better, and act a bit brighter" so I'm all of a sudden getting better, but I don't feel any better. I just want to curl into a ball and sleep. My mum took me to the hospital last night, expecting me to be admitted as that's what they normally do for me, and perhaps give me some fluids as I am dehydrated. They took my bloods, and my CRP's came back normal despite that I had been laying in the ER curled into a ball in so much pain, they sent me home after 7 hours of waiting for a single blood test. They didn't even give me fluids or any pain relief either. I love and respect the staff at the hospital as they have been such great help to me for the past 5 years, however after yesterday's efforts, I no longer have faith in the work they do. I didn't even get to see a doctor as such, I just saw a paediatrician and that's it, they didn't even check on me at all.

Now I am 100% sure this is a Crohn's flare-up as I know the specific pain and symptoms. I have been getting hot flushes all the time and also been running a bit of a temperature. So this morning my mum has proclaimed me "better" and I am all of a sudden ready for school tomorrow and she just tells me "you need to tough it out, we know you're in pain but the doctors, the professionals aren't concerned. You do not have any inflammation, so stop complaining" but I don't understand how they can rule out inflammation based on CRP's, I mean, my CRP's are abnormal even when I don't have a flare-up, therefore isn't is just as likely that they could be normal when I am having a flare-up? And my whole family are now sort of ganging up against me and saying that I look fine, I'm well enough to argue so I'm well enough to go to school and all. But of course I'm going to argue if I'm getting told by everyone that I'm not sick when I really am in more pain than they could ever imagine. They all make out as if they know what I'm going through and to be honest, they have no damn clue. I'm sick of it, my mum will not take me back to the hospital as "I am fine" according to her, nor will my dad as he is very selfish like my mum, and they don't seem to be fussed. Mum is also saying that because I haven't lost weight, then clearly there's no problem. I mean, why the heck does that matter? If the hospital had done an ultrasound, they'd have seen the inflammation and scarring all throughout my small intestine. I have areas of inflammation and scarring even when I'm not having a flare-up!

So my issue is, I have to go to school tomorrow, however I really just want to be in the hospital receiving treatment (like IV therapy and stuff that'll help me) rather than attending school where I'm forced to sit in class with tears in my eyes because of my pain. I wish I could ask my grandmother to take me to the hospital, but she lives about 40 minutes away from me and of course my mum would never approve. My mum will send me to school, and if I argue, my dad will get involved and I'll be forced to stay at school the whole day in pain, not being able to consume anything and too weak to even walk, so I have no hope of even returning to the hospital. And mum said she'd call my GI first thing tomorrow (not til 9am) and by that time I'll be at school. I don't know what to do, I am to the point where I feel like grabbing my pill box and taking everything inside of it because I am sick of being told by everyone around me that I'm not sick. I feel like I'm dying, yet nobody seems to be doing anything to help me. I can't do it any longer, I can't sit back and let them all force me to do things I don't feel well enough to. They act as if I'm so sick to everyone else, they make out as though I'm dying to everyone else, yet the minute they speak to me, "oh remember, you're not actually sick Jordan". What do I do? I have nowhere to turn, no way of getting back to the hospital, no way of getting better at this stage

 

[CarolinAlaska]

Jordan,

My heart goes out to you. As a mother of another teen with Crohn's, I can see both sides. If your parents aren't on this forum (the one for parents), they may only know what the doctors tell them. They see their daughter is so sick and they just don't know what to do. They are afraid and frustrated too. They are probably sorry that they aren't supporting you as much as you'd like the minute they pressure you to do something that you don't feel that you can do. For example, I'm always pressuring my daughter to eat or drink her supplements, but often she physically can't. I get scared of what may happen and I start lecturing her, pressuring her more, nagging, etc. It doesn't help. It is just my fear. Try to understand their side. Give them time to see it. It may take you physically getting up in the morning being unable to stand up straight, or passing out in the shower, or crying in pain, but hopefully they'll come around and see how bad off you are. If not, the teachers or school nurse, or someone else hopefully will intervene tomorrow when you are puking or passed out or bent over in pain.

Not all ER docs or pediatricians know how to read a lab when it comes to IBD. Is anyone treating you for constipation right now? Your pain medication can make your constipation much worse and the gas pain is terrible. Maybe you need an enema along with your IV fluids.

I hope you can find a solution quickly. I'm saying a prayer for you and your family right now.

Carol

 

[PositiveThoughts]

I'm sorry you are going through all this. And, even more sorry that no one seems to really understand what you're trying to tell them.

It's not uncommon to have really bad pain and symptoms, yet have 'normal' test results.

Crohn's Disease is a Whole Body Disease. It is an Auto Immune Disease - that effects your entire Immune System, not just your digestive tract. It causes so many other problems and issues in other parts of the body, most people just don't realize or understand that - and chalk those problems up to something else, because they're not part of your digestive system.

You're naturally going to be more tired, have less energy, it's called chronic fatigue, and sadly- you may struggle with that your entire life. I have since childhood. Then add any other health issue on top of all that, and it's more than 2x as bad as for someone who doesn't have Crohn's.

Even if your Crohn's isn't flaring this very moment (tho I'm not doubting you when you say it is, no one knows your body as well as you do) you may be fighting off some kind of bug or germ you picked up - and it's just hitting you harder than usual.

Maybe if your parents can set up an appointment with an Immunologist or at least talk to you, they might better understand how this is a whole body disease. I'm sure they love you, and care - they just don't understand. No one can really relate 100% unless they have gone through it themselves.

Hope you feel better very soon.

 

[Crohnie101]

Thank you for your reply. I understand what they're thinking, and I often think that because Crohn's isn't the only condition affecting me (I have arthritis in my hands and hip, so cannot walk without an aid, and I also have severe lung problems and stuff), my parents are almost in denial, they make out as though I'm not really sick because they don't want to accept the fact that I really am sicker than they think. And I really do believe that no parent wants to have to face the fact that they're child on one of those children that you see extremely sick, unable to walk, unable to eat or drink etc. so it almost seems as thought they're in denial and don't want to accept that i really am sick at times.

I think I'm just going to make more of an effort to look the way I'm feeling if you get what I mean. Because I'm feeling absolutely awful, however, I don't exactly look that awful in the way I'm acting and all, so I guess I sort of have to prove to my parents that I really am sick. I hate it when it gets to the point that I have to actually have to make myself collapse more often than I do anyway, because I have to have a way to prove to them that I am as sick as I say I am. It's frustrating but I guess if it proves how sick I really am, then it's worth it!

I haven't had anything for my constipation as of yet, but if it doesn't get any better by tomorrow, i might get mum to go and get me an enema or suppository from the chemist. Thanks again for your reply!

 

[Crohnie101]

Just thought I'd add, over the past few hours or so I've been feeling a lot of pain in the kidney sort of area on the left side of my back, could this have anything to do with my crohn's?

 

[CarolinAlaska]

That is one possibility. It could also be from constipation, a kidney infection or pancreatitis...

 

[Crohnie101]

Okay, because I noticed it a couple of hours ago and I immediately thought "hmm this is strange" and then it's just been getting a fair bit worse, and it's just made me think that perhaps it could be to do with all my Crohn's symptoms or something along the lines of that, I'll have to tell my mum a little later on if it doesn't get any better.

 

[warrior65]

Hi, so I'm 15.5 and am a female who's had Crohn's since I was 9. I have flare-up's every four months or so. Right now I'm having a severe flare-up and haven't been to school for 2 weeks, and have been ill for 3 weeks. Over this period of time I haven't eaten or drank barely anything, yet I surprisingly haven't lost any weight. I am on infliximab and had my 2 monthly treatment 2 weeks ago and am also on azathioprine. During a flare-up I am put onto Budesonide/Entricort as other treatments have not worked for me in the past, and/or the side-affects outweigh the actual results.

2 weeks ago I had my CRP's tested, and they weren't high, they were average. I was a bit shocked as I have been double-bent in pain for 3 weeks now, unable to consume anything because of the pain. I started off going to the toilet 6 times a day, and in the past week however, I've been able to go only once in seven days. I feel uncomfortably full and constantly nauseous, and the pain is probably a 9/10 at the moment. I spoke to my GI over the phone who upped the dosage of my Budesonide as he'd kept me on 3mg for months now, so I am now on 9mg however after over a week, nothing has changed. I think because I was on 3mg for so long, my body has just gotten used to the medication so is now not responding to it.

My mum and dad don't believe that I am as ill as I say I am based on the fact that I still talk fine, and despite being so weak and frail, am able to argue with them (I always argue regardless of whether I am sick or not, it's just my personality). They believe that I'm starting to "look a bit better, and act a bit brighter" so I'm all of a sudden getting better, but I don't feel any better. I just want to curl into a ball and sleep. My mum took me to the hospital last night, expecting me to be admitted as that's what they normally do for me, and perhaps give me some fluids as I am dehydrated. They took my bloods, and my CRP's came back normal despite that I had been laying in the ER curled into a ball in so much pain, they sent me home after 7 hours of waiting for a single blood test. They didn't even give me fluids or any pain relief either. I love and respect the staff at the hospital as they have been such great help to me for the past 5 years, however after yesterday's efforts, I no longer have faith in the work they do. I didn't even get to see a doctor as such, I just saw a paediatrician and that's it, they didn't even check on me at all.

Now I am 100% sure this is a Crohn's flare-up as I know the specific pain and symptoms. I have been getting hot flushes all the time and also been running a bit of a temperature. So this morning my mum has proclaimed me "better" and I am all of a sudden ready for school tomorrow and she just tells me "you need to tough it out, we know you're in pain but the doctors, the professionals aren't concerned. You do not have any inflammation, so stop complaining" but I don't understand how they can rule out inflammation based on CRP's, I mean, my CRP's are abnormal even when I don't have a flare-up, therefore isn't is just as likely that they could be normal when I am having a flare-up? And my whole family are now sort of ganging up against me and saying that I look fine, I'm well enough to argue so I'm well enough to go to school and all. But of course I'm going to argue if I'm getting told by everyone that I'm not sick when I really am in more pain than they could ever imagine. They all make out as if they know what I'm going through and to be honest, they have no damn clue. I'm sick of it, my mum will not take me back to the hospital as "I am fine" according to her, nor will my dad as he is very selfish like my mum, and they don't seem to be fussed. Mum is also saying that because I haven't lost weight, then clearly there's no problem. I mean, why the heck does that matter? If the hospital had done an ultrasound, they'd have seen the inflammation and scarring all throughout my small intestine. I have areas of inflammation and scarring even when I'm not having a flare-up!

So my issue is, I have to go to school tomorrow, however I really just want to be in the hospital receiving treatment (like IV therapy and stuff that'll help me) rather than attending school where I'm forced to sit in class with tears in my eyes because of my pain. I wish I could ask my grandmother to take me to the hospital, but she lives about 40 minutes away from me and of course my mum would never approve. My mum will send me to school, and if I argue, my dad will get involved and I'll be forced to stay at school the whole day in pain, not being able to consume anything and too weak to even walk, so I have no hope of even returning to the hospital. And mum said she'd call my GI first thing tomorrow (not til 9am) and by that time I'll be at school. I don't know what to do, I am to the point where I feel like grabbing my pill box and taking everything inside of it because I am sick of being told by everyone around me that I'm not sick. I feel like I'm dying, yet nobody seems to be doing anything to help me. I can't do it any longer, I can't sit back and let them all force me to do things I don't feel well enough to. They act as if I'm so sick to everyone else, they make out as though I'm dying to everyone else, yet the minute they speak to me, "oh remember, you're not actually sick Jordan". What do I do? I have nowhere to turn, no way of getting back to the hospital, no way of getting better at this stage

I use to get pancretitis attacks that felt just like flareups,I truly feel your pain,and sad about the age your feeling yours..so so sorry

 

[Crohnie101]

really? Well I am taking azathioprine and remicade/infliximab which the 2 put together are known to cause pancreatitis so I wouldn't be surprised if it was that. Just out of interest, how were you DX with pancreatitis and how was it treated?

 

[lblair]

Hoping you start to feel better soon!!

 

[Ihurt]

I believe they would be able to tell if you have pancreatitis by a blood test. Also, your WBC count would be pretty high as well..

I am so sorry you are going through this. I mean you sound as if you are in no shape to attend school with how you are feeling. I would tell your mom exactly how you feel. Tell her you really don't feel well at all and that you need some help. Hang in there sweetie.

 

[Crohnie101]

Thank you, the doctors were told to check my CRP's so when they came back and told me they were average, I questioned my WBC count and also my iron levels, and they just said "oh we were just told to look at your CRP's but your WBC count was quite high."

So just a quick update, my mum spoke to my GI on monday who said that given that I have very active and extensive disease, the blood test is not an accurate indicator of my disease, and given my current state, there's gotta be something wrong. He said they should've done an ultrasound and all, so to bring me in Tuesday morning so I could be admitted and have further tests done as he perhaps needs to review my whole treatment plan. Sure enough I was at my grandmother's house and avoided going to school, my mum called my grandmother and told her all of this, but told her not to tell me as of yet as she hadn't confirmed anything. Her phone cut out whilst talking to my GI so she couldn't confirm that I was being admitted, so said she'd take me on Wednesday morning instead. It's Wednesday now, and last night she told me that I was to go to school the next day as I'd already missed 2 and a half weeks of it so far. She said that she never got hold of my GI again so isn't taking me into the hospital because if it was so important he would've gotten back to her. Wrong. He never gets back to anyone because he is very busy all the time.

I had a triple free period at school this morning so am not going for another hour or so, however I'm going to go for 1 and a half lessons and because I am so weak, I tend to collapse every now and again, so I might just have to do that during class so that I'll get sent to Student Services where she'll have to pick me, and when she does, I'll tell her that seeing as though she had to leave work to pick me up anyway, I think she needs to take me to the hospital, if not, I'll take myself there by whatever means it takes as I physically am not well enough to be anywhere else at this stage. I have eaten barely anything, and when I do eat, I am in an immense amount of pain, about a 9/10 and I have a very high pain tolerance, so to someone with an average pain tolerance, my pain would be close to unbearable. When I don't eat, my pain is still constantly an 8/10 but I just try to get on with things as the pain is something I cant get rid of.

 

[Ihurt]

Hey there,

Wow, sounds like you do not need to be in school right now. You should either be at home resting or in the hospital finding out what is going on. I am sorry you mother is not taking charge here like she should be. Do whatever you have to do to get help. Even if you have to tell the nurse at school that you feel really bad, maybe she can talk to your mom and convince her that you need help... Hang in there...