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Newbie looking for adivce not yet diagnosed suspected Crohn's/colitis

Hi everyone im new to this forum and looking for a bit of advice and support if possible. I have had the most horrendous 3 months of being ill which I feel is taking over my life :(

so basically it started in febuary with diahorea then vomiting I just assumed it was the noro virus that had been going around anything I eat could set the nausea or diahorea off I was struggling to keep hydrated and was admitted to hospital to be rehydrated after they had done that they discharged me saying it probably was a tummy bug but still I felt no better two days after that when I was in bed I had the most horrendous tummy pains I couldn't even cope with the pain ( I think I dealt with my labour pains better than these pains lol) and I was taken straight back to hospital where I was given morphine amongst other things to kill the pain by this point I was bringing back up un-digested food and the diahorea was still constant so they decided to keep me in for a couple of days then decided that it was just gastrointiritus and that I would start to feel better after 2 weeks....but no the symptoms got worse.. I felt like I had a burning sensation just under my bust it was also tender to touch or even walk standing up straight, my tummy was bloated, I still had the diahorea and vomiting on and off every few days with tummy pain, but I also has constant overwhelming nausea, fatigue I literally have no energy what so ever all I can do is lie down even after a long nights sleep I wake up and feel like ive been awake for weeks :( ive also had terrible joint pains, what I can only describe as really dry sore painful eyes, mucus from back passage ect ect so I went back the doctors various time which they tried to say it was IBS I was having none of that ive suffered with that before and this is nothing like it, so I went back yet again and was sent for a blood test which revealed I had a high inflamatoury marker so my GP referred me to a gastro specialist as urgent as I also had a dramatic weight loss 1stone 7lb to be exact in the space of a few weeks, in that time I was yet again admitted to hospital with extreme pains, vomiting and dehydration this time I was promised they would keep me in and do all the test to get me sorted ..but they next day decided they would let me go due to there being no beds on gastro.... a couple of weeks on I got few very painful mouth ulcers that came out of no where they were so painful I could barely talk the doctor gave me these steroid tabs to dissolve in my mouth but they wasn't dissolving due to my mouth being so dry out of desperation I took my dads prednisolone steroid tabs which did the trick and got rid of them and for few weeks after that I felt ok all my symptoms seem to disappear then last week they slowly started to creep back the dry eyes, fatigue and joint pains I felt generally unwell then on sunday BOOM vomiting all day and now I have what I can only describe as constipated diahorea where I feel very constipated and bloated its so uncomftable but then get the urge to run the loo then nothing happens and when it does its just abit of diahorea :s??
Luckily im booked in to have a colonoscopy on Saturday to see whats going on has anyone else had one of these and do they hurt??
sorry for the big essay guys and girls I just wanted to give as much info as possible to see if anyone has been experiencing the same thing as me
x
 
Hello Nikki88,

Please don't worry about writing an 'essay', it's difficult to get your story out in a few words, gosh you should have seen my first post! lol. I'm really sorry this is happening to you, it's a bit of a shock to the system when illness comes out of the blue like that. But you will get your head round it.

The symptoms you described where very similar to mine when I went into hospital at the end of November, really sore under my rib-cage, very painful to touch the area down to my tummy button, what felt like major period pains and I could hardly sit down or walk because of the pain, it got so bad I couldn't speak. I now have what you were saying about feeling constipated and having to strain only to have a soft BM? It doesn't make sense? lol. Though none of this does :) I thought I was 'healthy' before November but looking back and now knowing what the symptoms are, I realized that I had been having symptoms off and on for a long time. What about you? Were you 'healthy' before this all started?

Don't worry about the colonoscopy, mine didn't hurt, in fact once the scope was in I watched it's pathway on the screen and had a chat with my Dr :), possibly not the usual behavior? :) The prep is not pleasant but it's a means to an end, I got through it by thinking that the scope was to try and help me.

http://www.crohnsforum.com/forumdisplay.php?f=220
this is the link to the Tests sub-forum, there are lots of threads in there about colonoscopies that you might find helpful.

I will say that everyones experience of IBD is different, whilst we may have similar symptoms etc no 2 people will react to foods and medication regimes identically. Has anyone suggested you try changing your diet at all, switching to low-fibre foods and avoiding spicey foods. I will put in a link for low-residue diet as well:
http://www.crohnsforum.com/wiki/Low-Residue-Diet

I really hope you get some piece of mind very soon, please feel free to ask any questions, we will always do our best to help. Best wishes and welcome to the forum. Take care. :ghug:
 

scottsma

Well-known member
Location
Tynemouth,
Welcome to the forum Nikki.You poor thing you really are in a bad way aren't you ?.I'm glad your colonoscopy is on Saturday,the sooner the better.As lizbeth says,we all have different symptoms and diagnoses and meds.but we all have IBD and are here to support each other.Please keep us updated and best wishes.
 
Thankyou both for replying to me I appreciate it :) yea the colonoscopy is worrying me slightly as so many people have said even with the slight sedation that it is a very painful procedure, did they tell you after the colonoscopy if they had found anything or did you have to wait for your follow up appointment with the consultant?? Xx
 
Hi nikki. Welcome to the forum. So sorry you are feeling so sick. Good thing you are having a colonoscopy soon. Are they doing an endoscopy too? some times if you have something it can be in your upper in you track. My kids had colonoscopy and endoscopy and no pain. Only thing that bothered them was throat a couple of days after. Usually doctor will tell somebody in your family how things look if they ask. But keep in mind that some problems can be seen only after they check the biopsies. I am assuming they will take biopsies. Good luck with everything and let us know how everything goes.
 
No he never mentioned a endoscopy which I thought was weird maybe he wants to see the outcome of the colonoscopy first, there will be no family members there with me to ask I know I have a follow appointment with my consultant on the 17th June but I want to cry at the thought of waiting that long for results it may not seem that long but it sure as hell feels like a lifetime when I'm feeling this poorly constantly it's a very stressful situation being a single mum and trying to get my predicted grades for uni I feel like my career is going to be in tatters all because of this :( x
 
I am pretty sure you will see the Doctor before getting knock out. Ask him to let you know how your colonoscopy went. Ask him if he plans to take biopsies. with my kids doctor I get a copy of the pictures they get from their intestine, colon etc. I don't know if that's possible over there. Ask. I think that if they see something bad, they will put you right away in meds, to make you feel better. Or they will call you before your appointment. If not. you call them after a couple of days. usually biopsies results are ready in 5 days. That's the way it is in my city, my Doctor. Ask Ask Ask. only thing can happen, it's they say NO. Wishing you the best.
 
Please don't worry too much about the colonoscopy, mine wasn't at all painful, I did have to wait until my biopsies were back before seeing my Dr but was fortunate that one was already booked that was timed well for the results being available. It might be worth while calling your Drs secretary to ask about bringing your appointment forward and/or inquiring about when the colonoscopy might be, or even asking if there is an IBD nurse that you could speak to, if I have a problem mine can fast-track an appointment with my GI for me. Regarding your studies, could you talk to student services and explain what is going on, maybe they could help you work out a solution so you can keep on top off your work? Keep your chin up (a good old British saying :)), things may look bleak at the minute but it will get better. Remember if you need a shoulder to cry on we are here to help, if you want to PM me for a chat feel free. Take care.:ghug::ghug:
 
The colonscopy shouldnt hurt. Ask about the anesthesia first so they know you have that concern. Hopefully after it's all sorted out you can get treated and you can be more functional again. It is awful that you have to go thru this before they take you seriously to diagnose you correctly. But things will get better. Unfortunately you have to be persistent with doctors and that is hard to do when you dont feel well. As much as you can (with kids and school) try to baby yourself. Hot baths sometimes help. Good luck and hope you are feling bettter real soon.
 
Thankyou guys and will they stop if your in too much pain? Do they normally take biopsies or only if they think they need to do so?? This prep is awful I'm dreading the second sachet lol but by late afternoon tommorow it will all be over thankgod :) I'm in just before 1pm tommorow I just want it over and done with now tbh sod worrying about it, do you pretty much go straight in when you get there? X
 
Nikki.

Im also new to this. I had my Colonoscopy yesterday. It was fine. A lil pain, but they change your position to assist. I had a mild sedation which really helps because i have very little memory of the event and at the time it was happening, time suddenly jumped and there was an unexplained missing period of time. Its weird in that aspect but its deffo worth taking. You can see the camera screen if you like (i thought i wouldn't want to but actually enjoyed watching and saw my crohns).

Im now waiting for a follow up and more permanent meds as im on steroids at the moment. I have had three flare ups all in all and im pretty certain i had food poisoning which started this off. You said you were sure you had the nurovirus. They say a previous infection could be the cause.

Anyway it really is not bad at all... painless but i would recommend taking a mild sedation and they also gave me mind pain relief before. I found the biopsies were totally painless and couldnt feel them at all (they just pinch a bit of the lining off with a long rod with teeth). Mine did bleed slightly which is totally normal.
Im sure you will be fine!
 
Thankyou guys and will they stop if your in too much pain? Do they normally take biopsies or only if they think they need to do so?? This prep is awful I'm dreading the second sachet lol but by late afternoon tommorow it will all be over thankgod :) I'm in just before 1pm tommorow I just want it over and done with now tbh sod worrying about it, do you pretty much go straight in when you get there? X

Im sure they take biopsies always (best to while there in there). Im sure they will stop but again taking a sedative will help you not remember if you had any unpleasant experiences - they gave me extra gas and air. The bowl prep is horrible...and with me i went in at 2pm but didnt have my exam until like 4/4:30pm as they were running behind, but they get you prepped in that time (put a IV in your hand/arm - get changed) id take something to read incase there is a wait.
 
Hi Nikki,

Hope you are getting on ok with the prep, it's not much fun but it will be over soon. As said before biopsies will probably be taken at the time, I watched mine happening, expecting to feel something but felt nothing :)

This time tomorrow it will be all over, good luck, will be thinking about you. :ghug::ghug:
 
ive been given the picolax prep have any of you had that one?? on the instruction sheet provided with the sachets it said to take one before 8am this morn which I did then have breakfast off the menu which I did ect, then between 12-1:30 I could have lunch off the list which I had chose toast and boiled egg then I was to have no more solid foods and to have the next sachet between 2-4pm so I had it at 3, then around 7-9 I could have clear soup and clear jelly so I managed to get clear soup and scooped out most of the bits that were in it....however I typed in the piclox prep in google to have a nosey and it has completely different instructions to the one I was provided with it basically said to ignore the instructions that come with the picolax as its know to give bad bowl prep so now im worrying all this prep has been for nothing, it also states that if you appointment is after 12pm to have one sachet the day before and one early morning the day of the test :S so confused ...I could only go off what the hospital provided me with right? x
 
Here in Utah, USA we are totally sedated for the whole procedure. We don't feel anything at all until we wake up. Hmmmm... Weird that if differs.
 
they just use slight sedation so they don't actually put you to sleep as such its more so you don't really remember the procedure but il be pretty much still awake through out it x
 
Your instructions from the hospital were the same as mine and everything was grand, just wondering hoe you're doing and if it's all over for you yet, take care and let us know how you get on. :ghug:
 
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