Flare-Up URGENT HELP!

[Crohnie101]

So I am 15 and have had Crohn's for over 6 years now. I have been on prednisone (which makes me psychotic therefore cannot take it anymore), Modulen IBD, Infliximab and anti-inflammatories and am still on the last two. I have also tried budesonide (which works great) 3 flare-ups per year and am having a sever one now. My mouth ulcers stopped me from eating much for about a week, but in this past week, I haven't drunk an ounce of plain water as it upsets my stomach so much and puts me in so much pain, I have only managed to drink tea which unfortunately makes me even more dehydrated. I am in a 9/10 for pain and am so weak. I have lost quite a bit of weight and as I said, had not drunk plain water for about a week (just things containing water). Its now Monday and I have my gastro app on Wednesday. My doc is expecting my inflammatory markers to be quite high, and so am I. I have also been having so much blood in my stools, like not tarry, but not bright red either. When I see him, do you think he will need to do a colonoscopy and endoscopy (I haven't had one for 2 years)? Do you think he will admit me and put me on IV fluids as I am kind of hoping he will, even though I got out of hospital just 3 weeks ago (I was in there due to sever hip arthritis and stayed there for 3 weeks)? He said over the phone that he wants to either put me on budesonide or try adalimumab so do you think I'll start that in hospital? I think I may have a really bad obstruction due to all the blood in my stool too.

 

[guest78]

It does sound like you a feeling very poorly and have an awful lot going on. f
From experience I was admitted because my knee and ankle ballooned with arthritis, I was having a lot of blood in my stools and felt awfully unwell.
The fact you are not drinking water is a concern, you need to stay hydrated. Could you not suck on icecubes? Or icecubes made of orange squash? If you are becoming severely dehydrated, and are suffering from symptoms of dehydration he may well admit you for IV fluids.
Depending on what your Dr thinks may be wrong, and when all of your last tests were he may want a colonoscopy/endoscopy. I have had a few flares without needing one as it was pretty obvious what was wrong from the symptoms.
Adalimumba is brilliant! It really worked well for me, and kept me well for 2 years. I didn't have it in hospital, I was put on steroids to bring it under control before starting the injections.
Im sorry I cant be of any more help, it is so hard sometimes to second guess what the Drs decisions will be. Try to stay relaxed and wait to see what he says, its their job to diagnose and work out treatment plans. You dont need that stress.
Let me know how you get on!
xxx

 

[Crohnie101]

Thanks you so much GEC, I've got my appointment in a matter of hours and am feeling absolutely horrible. I'm actually praying he'll admit me as when I'm in the hospital I'm able to get the proper treatment in which cannot be provided at home, like strong pain meds, IV fluids and things like that. I also have severe arthritis in my hip, hands and fingers and I haven't been able to walk for about 2 months. I've been in a wheelchair, but have progressed to crutches and a walking stick throughout that time. I spent 3 weeks in hospital and its now a month later and my hip pain is still a 9/10 and I have a VERY high pain tolerance! Anyways, my arthritis will hopefully calm down when my Crohn's does. So do you think considering Budesonide works perfectly fine, he'll put me on that to put me in remission but then start me on adalimumab after that?

Also, with the colonoscopy/endoscopy, he generally knows when I'm having a flare-up for obvious reasons but, because my pain is in an odd spot and whilst I was admitted for my hip, they said I had a large loop of bowel inflamed in my lower gut. This is very odd considering my inflammation is never in that spot and I also never have this much blood in my stool, so I think he may want me to have the scopes!

 

[guest78]

Yup that's what I'm assuming he will do. The Humira can take a while to kick in so I doubt he'll just leave you on that. Yup. It does sound like he will do a scope, if the symptoms are in a different location. I know that's what my Dr did. I was also booked in for MRIs due to the blood in my stool - looking for fissures/fistulas etc as it turned out to be a perianal flare.
I know how you feel about the arthritis - it is a killer!! So, so painful. Has he referred you to a rheumatologist? I had to see one and they extracted the fluid from my knee.
I do hope you get the treatment you need! And a good rest.
Do you have a good support system with you? Parents and friends etc.
xxxx

 

[Crohnie101]

Yeah, I'm just hoping he'll book me in for the scopes tomorrow (he usually books them under emerg. because generally it is an emergency ahahha) as I can then sort out what the problem is, and work towards fixing it asap!

I know, its awful! And because I'm only 15, its quite uncommon to have arthritis in my hip however, I do have Crohn's so that'd be the reason! I have seen a rheumatologist however they're so busy and take forever to get into! They have me on medication that doesn't even help my hip too ):
My support system is okay, but I could do with a better one. My parents and family expect me to continue with my routine around the house, doing chores and all, but it just isn't possible with my hip. My whole rehab plan is just speeding ahead and its getting so difficult! My physio is hell bent on getting me off of crutches completely but using my walking stick or just 1 crutch all the time is just too painful at this stage. I just wish they would let me take things slowly and steadily until I feel ready to move on!
My friends aren't too supportive either, they tend to downplay everything...just like my parents! My school is very supportive though!

 

[guest78]

I can understand what you mean about your friends. A week after I start new meds or get out of hospital they ask of I'm all better. Or expect me to be completely fine. They just don't understand. Your parents are probably desperate for you to be better and so like to act and pretend like all is normal. I know mine are always saying I'm looking better/well even when I look like death!
Ingot diagnosed at 16 so know how rubbish it is to be so young with crohns. You sous like you are coping so so well! It's brilliant that your school is being supportive that's so important for your future! And it must be a big weight off your mind.
It is uncommon to have arthritis in your hip so young but at least it won't be permanent and just flares up along with the Crohns. I know Humira/adalimumabnis great for treating arthritis!!
It sounds like your Dr is very good! & listens to you!?
Xxxx

 

[Crohnie101]

Yeah, they are just, well you know how friends are, often they show their true colours. I don't get invited out anymore on weekends or anything and it's just so upsetting. I personally think they are embarrassed to be out with me because I am just such a wreck, medically and I'm a cripple. I know what you mean, my parents probably do feel that way, I just wish they would take into account that I really need as much support as I can get! I think I was diagnosed at 9 so that would be the reason behind me coping so well. I always think of it this was, 'There's always someone in the world who has it worse than you', that to me is a phrase of my own that helps me get through my tough times!
Exactly, and with the right treatment it should work out great!
He is a great doctor, he has his you know, pros and cons but he is definitely a great doctor and I cannot deny that he always makes good decisions for me and makes an afford to find the best options for me!
xxxx

 

[guest78]

In regards to your dr, as long as he's always got your bet interests at heart then that is so great!
I thin you are very brave and doing so well!
Yeh you definitely get to see who your true friends are! A lot of mine weren't in contact at all, for months whilst I was poorly.
It's not nice eh!
How long until your Drs appointment?
Xxx

 

[Crohnie101]

GEC, I wasn't admitted to the hospital but very soon I'll be having an MRI or my stomach (MRE) and a colonoscopy/endoscopy to show my disease in action. However, I am being admitted next Wednesday by my pulmonary doc if my lung function does not improve (it never does!). So hopefully they'll do all my scopes and stuff then whilst I'm admitted. Hopefully they'll get me onto some fluids too and in the meantime I'll query about the port. I will also be put on Budesonide after my scopes and MRE.
Yeah, it definitely does show who your true friends are!!
xxx

 

[guest78]

It sounds like that is a rest cause of action! You are getting all the tests done that you need whilst being able to stay out of hospital. It is never the nicer place to be.
I'm so glad that its all getting sorted and you are not having to wait too long! Are you happy with how it wet?
Xx

 

[Crohnie101]

Exactly! I am however quite worried about the pulmonary side of things as I have lost a further 19% of my lung capacity, therefore it if is not raised in the next week, I will be admitted and probably put on oxygen for a while in hospital. Then meanwhile I guess I can also have my crohns fixed. So even if I am admitted, it will all happen at once- my scopes, my MRE (stomach MRI), being put on Budesonide again, oxygen for my lung function and also other pulmonary concerns. Unfortunately, I may even possibly have Crohn's in my lungs!!!! Oh no! hahahaha

I'm okay with how it went, but I came away not knowing really what was going on. I actually got way more out of my pulmonary app then my gastro app unfortunately! I'm clearer on the plan now!
xx

 

[guest78]

Is the problems with your lung capacity related to your Crohns?
I guess if you are admitted, they'll just tackle everything! Thats what happened with me Within a day I was blasted with MRIs, CTs, a rheumatologist etc...
At least you have a steady plan, and you know where things stand for next week - thats a really good thing!
xxx

 

[Crohnie101]

Well you see, we really have no clue! There is a chance I could have Crohn's in my lungs, its very rare but could easily be the case. I'm sure there will somehow be a link between the two.
Exactly, and it would make it a heck of a lot easier as it would save the trips to-and-from the hospital. Although, my parents would probably complain as they'd have to visit me all the time!

Also, whilst on the topic, may I ask for some advice? In between my Crohn's stomach pains, I am relatively okay, very weak and unwell but I come across as okay. Tomorrow is the last day of school for the term and this morning, my parents both agreed I should be at school because I am apparently "well enough to argue with my siblings therefore well enough for school" but didn't bother to make me go to school as I would've caused a problem and absolutely flipped out at them. I am worried that they will make me go to school tomorrow even though I am so unwell. I know I am way too unwell for school, I cannot eat, drink and am in so much pain when I get my stomach pains. I couldn't handle it at school. What should i say to them if they try to force me to go to school?

 

[guest78]

Ah I'm sure your parents won't mind visitin you!
That is really tricky. Sometimes when you pretend you are okay or try to make te best of things people assume you are suddenly better! Lots of people I know do anyways.
But I would try and have a conversation with your parents at some point, & really explain how you are feeling and how unwell you are. Maybe don't even bring up school, just explain really clearly how it is. Only you know your body!
I remember I used to so half days. Otherwise I felt so out of the loop. Would a half day be. Possible tomorrow? To keep your parents happy and you will maybe feel a bit more human!! I know it is very easy to want to stay at home/hospital where it is safe and you don't have to face lots of people and questions. But you should get out there as much as you can! obviously if you truly don't think you can cope with it all, then don't risk making yourself any worse, sometimes getting out the house can make you feel a bit better
I would just be very frank with your parents though, explain that you really need their support and you really are not well enough for school.
Try not to loose your temper, I find that hard!, if you talk to them like adults they'll probably respond really well
Xxxxxx

 

[Crohnie101]

Hahaha, my parents will visit me and then complain about me being grumpy when they visit- well I'm pretty sure you wouldn't like people coming into your hospital room and moving all your stuff, plus I don't feel good when Im in there!

Generally a half-day would be possible however, my school finished at 12:30 tomorrow due to the last day of term, so I think I'll just lay on the couch and say I'm feeling heaps sick and stuff. They'll probably be like "oh okay, maybe you are to sick for school". I think its the fact that I try to hide my Crohn's when I'm not in pain otherwise people assume I just cant do anything, so when I do get up and do something, they think that it probably wasn't as bad as I was making out. If you get my drift hahahaha

Me too, I'm probably one of the angriest people when I'm in a bad mood!!
xxx

 

[guest78]

Yeh I totally understand! Sometimes it's good to put on a brave face but it can back fire!! I hope they don't force you to go!
Let me know!

 

[Crohnie101]

Exactly!
Well my mum has noticed to some extent how bad my lungs are getting and said she wouldn't send me to school anyway. I know this is a Crohn's forum so I hope I don't get in trouble for bringing up my lungs however, it's just gotten so difficult to breathe today. I've felt as though my heart is racing and I just cannot keep up with it!
Unfortunately, my mum is under the impression I may have Tuberculosis for a few legitimate reasons. About 3 weeks ago I had a large lymph node removed due to it being enlarged for over 4 months and with all the risks of Remicade, we couldn't take any chances. I got my results yesterday which showed that it was enlarged due to either my Crohn's or, I had a severe infection which is a relative of TB.

My mum has pieced it together and with my Crohn's symptoms, lung problems, constant cough and everything, she thinks it is more than likely TB fortunately I am being seen by my pulmonary specialist next Wednesday in which I will be admitted and put on oxygen and constant watch and all if my lungs function does not increase. The attempts to increase it never work so I assume I'll be admitted where they'll probably test me for TB.

Also, with the risks of Remicade, one of them is TB and I've only been tested for that prior to beginning that treatment but shouldve been tested more often for it

 

[guest78]

Ah it's so hard when there are soapy possibilities. At least you are seeing a specialist soon that's a really good thing! And you have t had to go to school?

 

[Crohnie101]

Nope, fortunately for me, no school!