Heyy, could really use some help

[comewinter]

heyy, could really use some help

Hey everyone, if anyone doesn't mind, I could really use someone to talk to who understands about this sort of thing.

I've been suffering with crohn's disease for about 2 years now, and it's absolutely driving me nuts I'm a 19 year old girl from northern ireland and I feel completely alone suffering through this.
I got really ill last year, and lost a lot of blood and lost 8 stone (about 112 pounds) through crohns. I went in to get a blood transfusion last october and that was when they finally diagnosed me and put me on medication.
I had to drop out of college, quit my job and have pretty much spent my life in bed since. and it's not letting up. I thought if I'd been on the medication for a while then I'd be going into remission or something but it's just not happening.
I'm on that low-residue diet thing where I don't eat fibre and it does help a bit, but the pain is still constant and I feel like I'm going insane sometimes. my appetite disappears and I've got to take my tablets on an empty stomach a lot of the time, which makes my stomach swell up and makes me throw up blood. I'm just at my wits end
at the minute I'm on entrocort, omeprazole, buscopan, tramadol, paracetamol, domperidone, and prozac. and I've to get iron infusions every few months.

I don't really know anyone else who's suffering with this, so I don't know whether my symptoms are normal to everyone else, if that makes sense. I have a constant burning pain, and it feels like all my organs have melted into one or something? and sometimes I feel like the only way to make it stop is to twist myself or bend backwards to seperate all my organs. I dunno how to explain it. then I have the other pain every 20 minutes or so that stabs and travels through my lower abdomen. does everyone get those?

since I started the steroids I went from going to the toilet up to 15 times a day down to 2 or 3 times, which is amazing and such a relief. but the inflammation is still there and I'm still not able to live my life. I'm stuck in the house constantly because the pain is too much, and the stress and anxiety of getting ready also stops me from doing things. does life get better than this or do I just need to get used to the fact that this is how things are now?
any help would be appreciated, sometimes I just feel like there's not much point going on like this xxx

 

[Rebecca85]

Hello and welcome to the forum! So sorry you're having to suffer like this, but don't worry there is hope!

First of all, Entocort is the milder steroid, if needed you could try prednisone/prednisolone which has more effect throughout the body, but gets rid of inflammation pretty well. There are some nasty side effects, but not everyone gets all of them, so if you do go that route, take it as it comes!

Secondly, you don't seem to have a maintenance med in your list. The steroids are for short term use, to kick start your recovery, then you can wean off them and onto a longer term med. There are mesalazine products, these are quite mild but with very few side effects, azathioprine (or 6-mp) which work well for some, but some are allergic to, and biologics which are the 'big guns'!

So there are quite a few options open for you! Check out our wiki www.crohnsforum.com/wiki/crohns-disease and have a nosy round the forum. Any questions, just ask!

 

[comewinter]

thanks so much.
should I go to my doctor and ask about a stronger steroid then, do you think?
they put me on pentasa for a few months last year but took me off them cos they didn't make any difference, and haven't had me on anything other than steroids since :/ I've been taking 3 entrocort a day since october, and they haven't mentioned changing.
also, what is remicade? I've heard people talk about it quite a lot, but I don't really understand.

 

[Rebecca85]

I think normally Entocort works (if it's going to) within 2 months or so. So I would definately go back to your doc and ask what (s)he recommends. By the way, do you know where and what form your Crohn's takes? Because it just occured to me, Entocort is very selective where it works, so if you have widespread inflammation, it might not treat all of it.

As for Remicade, I don't fully understand it myself, but it basically disrupts the inflammation process.

 

[comewinter]

I'm not really sure about any of the details, to be honest any time I've been in the hospital for it they've been pretty dismissive. thats doctors for you, eh? but I know they found problems in both my large and small bowel after camera tests and a small bowel series x-ray thing. I kinda feel like ever since I've got out of hospital they've just put me on a shelf and haven't bothered with me since, no matter how many times we ring up and tell them my symptoms are getting worse.
-sigh- I dunno thanks for listening, I've never really had anyone to talk to about this properly before!x

 

[Guest]

hi & welcome to the forum.

i've actually recently started one of the drugs you're on, omeprazole, and i find it is helping.. but i do need to eat something not long after taking it. with that, and the other meds you're taking, i really would recommend that you try not let your tummy remain empty for long - that could actually make you feel worse. i know it's hard when your appetite is non-existent, but just try little things, often.. even if it's just a few spoons of soup or a cracker..

are you under the care of a GI, or do you just see your GP for meds etc..? if it's the latter, i'd recommend you get a referral to a gastro specialist at your local hospital, or if you're already under one, and you feel that team isn't doing its' best for you - you have a right to change to somewhere else..

i'm so sorry to hear how debilitated you are right now, and how your life is on hold i really hope you can get some help soon to get you back on track.

 

[comewinter]

thank you, it really is a relief to know there's other people in the same boat<3

I am under care of a gi, yeah. it's just the waiting lists, I suppose. I was meant to go in at the start of november there for a colonoscope, but with my stomach as sensitive as it is I couldn't keep the prep down and had to cancel it, and they said they'd be in touch soon but haven't bothered. I'm assuming this is normal, though, there's a lot of sick people out there and it's only been a couple of months.

it's just that when I got diagnosed, I got my hopes up that I'd be going into remission soon, yano? I don't know whether it's normal to go months or years still in the same level of pain you started out at. all this new information is awful confusing

 

[Guest]

i'm glad to hear you are under a team... one thing you can do is phone the hospital and ask if they have an IBD Nurse Team who you can contact.. this is a relatively new service that the NHS provides, and it's been so helpful to me, and others here..

i don't really think there is anything 'normal' about Crohn's it gets people in all different ways.. and sometimes the waiting time for relief is simply trying & finding the right meds to suit the individual.. and the right diet..

i'd definitely try and talk to an IBD nurse, both about how you're feeling now, and about not hearing regarding a re-appointment for investigation... not all procedures involve drinking things down, and those that do, you can have an anti-sickness drug beforehand... there are ways round things... but you'll feel a whole lot better if you talk to the nurse, and hopefully get her looking into some action for you...

 

[crohnicaly stinky]

comewinter I really feel for you, you're getting hit so hard right now. It strikes me as odd they don't have you on the stronger steroid. Ask to see a gastro doctor if you don't have one, ask for a second opinion too. Prednisone works really well to get things under control, my analogy is it's like a fire crew, they do some damage putting out the fire, but they get the job done. Once you get the "fire out" you can start on a maintenance med.

Hang in there read this forum and know you are not alone. But that said get educated and be your own advocate also, you are going to want to know as much as you can about this disease. Besides this forum for education you can go here http://www.ccfa.org/

Sorry about your school and your having to put life on hold for now, it's a shame, but you can pick that back up later. also do try to eat and maintain yourself a lot of people drink the Ensure type nutrition drinks. Do your best to get nutrition in you. I wish words were better medicne than they are, but just know people here understand what your feeling, we know ho wmuch it sucks, and we all wish we could make you feel better.

 

[comewinter]

I seriously do appreciate this advice so much. I didn't even know you could call up an IBD nurse team! I'll look into it. and thank you for the support, I'll have to read up on it as much as I can.
it's nice to know there's hope out there and other people in similar situations are able to live somewhat normal lives. I've managed to get myself stuck in a complete rut of depression and anxiety. I don't sleep at night because my stomach wakes me up every 10 minutes, and I'm disappointed when I wake up every morning because I know it's just another day of pain to go. I know it's not normal to wish you could just sleep forever, by anyone's standards, and I feel so guilty for feeling sorry for myself sometimes cos there's so many people who are a lot worse than I am. that light at the end of the tunnel just seems to be getting darker every day because nothing's changing. gonna have to take matters into my own hands and try and get something sorted!

 

[crohnicaly stinky]

comewinter just make yourself at home here ok. I like the last line of your last message, because I see a little spark of hope there and yes I agree take things into your own hands a bit. You'll find people here have a wide variety of experiences with doctors. Some have great ones from the start and others not. In fact I dropped my first doctor after one visit, she was actually very good but her office staff was just awful. It will not be as bad as your going through forever, so just help push things along to help get yourself back on your feet. If you can request a copy of all your record's, then read through them and look up the long technical words and then when you speak with doctor things will make more sense. You can ask questions about treatment options that they have no idea you even know about. Good luck!

 

[comewinter]

thanks again for the warm welcome, going through this site has helped a lot already and answered a good lot of questions I was confused about.
there's just one that I'm wondering about.. I pass blood every time I go to the toilet, I have done for well over a year now. sometimes fresh red blood, sometimes blood you can tell has been there for a while, sometimes blood clots. and I haven't heard of anyone else complaining of this happening 2 or 3 times a day?
my bloodcount dropped from 13 to 5.6, and the blood transfusion helped so much, but I'm worried I'm just going to be anemic forever because of constant blood loss.
I'm assuming this is a symptom of crohn's as my doctors haven't shown much concern about it, and it doesn't scare me anymore, I just haven't heard of anyone else mentionin it.

 

[Rebecca85]

Bleeding is indeed a Crohn's symptom. As with any other symptom, some get it, some don't. I don't, so can't really help you with that, but it should lessen and disappear once you sort out your medication and find something that works.

 

[carrollco]

Comewinter: Blood is one of my main symptoms. I have it for nearly a year (come April) and I'm still alive and kicking. Sometimes it looks like a fresh kill in my bathroom. At one point my blood count was at 3.

I was on Lialda which I was allergic to and it made my intestines get all inflamed and swelled up which caused a blockage just a month ago. They put me on Prednisone and while I feel wonderful, the Crohn's isn't responding so I'm off to take Imuran tomorrow.

I'm older than you and while it is not fair that someone so young should have to fight this disease, it is what you have and you must try and find the good even while fighting the bad.

I run a fever everyday of 99-100.5. I've made my goal to know I'm getting better when I'm fever free and the blood stops. (I could also do without the urgency feeling, but hey, I'll take what I can get.)

My thoughts and prayers are with you.

 

[Crohnsian]

Hi Comewinter, i'm new to the forum too but not new to CD (dx 96). I was gonna post my story and be full of self-pity til i read yours, you must be really scared. i know it doesnt seem so right now but CD is a manageable disease and it may take a while to get your symptoms under control and, fingers crossed, into remission.

Everyone's given you great advice, if i were you i would push the doc to get your scope booked again so that you can move on with your treatment. Tell the docs how it affects your daily living, that u cannot eat or sleep properly, or get up from bed without pain etc, all the things in your original post. These are all part of the 'Activities of Daily Living' which the NHS use to assess your condition (google for more info and ammo).

Also, the colonoscopy only looks at the colon, have u had a small bowel examination (normally a barium follow-thru or CT scan, both painless)?

Take heart that it wont always be as bad as it is now. when ur at the bottom (excuse pun), the only way is up!

Ian

 

[comewinter]

my heart is breaking for you guys no one deserves this<3 I'm thinking of you all.x

thank you for the advice and support, hopefully they'll change my medication or something.

Ian, I had a sigmoidoscope then a small bowel series done last august, where you drink the barium and get x-rays? they didn't tell me too much about it, but said there was thumb marks through my intestine and the lining is really thin or something. I didn't realize til I came on here how actually little I know about the state of my body haha.

by the way, my name is Kiera if anyone fancies a chat about anything ever, I'm only a wee message away, and I'm all ears!

 

[Crohnsian]

Hi Kiera, im glad ur sounding a bit more positive today - its hard to find the positives sometimes, esp when there's no respite from your symptoms. I hope u get some results from the docs soon - you gotta push em sometimes! I'm a bloke and its hard to admit i'm suffering sometimes, but if u dont play it up they wont act. Your symptoms sound like u need some action sooner rather than later so get that appt booked!

Ian

 

[Astra]

Hi Kiera
and welcome

Just to concur with the others!
Phone the gastro team, get an appt, change to Pred, enquire about Infliximab (Remicade)
and start insisting, if there's no joy your GP can refer you to another hospital.

'I'm assuming this is normal, though, there's a lot of sick people out there and it's only been a couple of months.'

Kiera, you are one of these sick people! With sheer determinination and assertiveness, you will be listened to, you are the Captain of your own ship, so get up and fight!
Or, take someone with you who is a good scrapper! lol

lotsa luv
Joan xxx

 

[comewinter]

thank you, sweetheart. I'm gonna try and get an appointment sorted as soon as they'll let me. I went to my gp on monday and she rang the gi herself while I was sitting there, and said they need to see me asap because I'm clearly getting worse, and they haven't said anything yet. if I don't hear anything I'll go down and burst in the door and scream LOOK AT MY ******* INTESTINES NOW, then they'll have no choice. decision made!

 

[comewinter]

haha, I'm gonna say that word for word! I'll add a '...please' to the end of it though, just incase they decide to get security rather than inspect my insides

 

[Astra]

Yeah, dead right!
OR
Just poo on the floor in front of the receptionist who is obviously a qualified doctor, or am I crassly over generalising!

 

[comewinter]

hahahaha, I was trying to swallow while I read that and spat my juice all over the entire room so glad I found you guys!