Should i worry

[kenny gourley]

hello people out there,i suppose most story's start from the beginning so here goes.
when i was younger age 13-14 i always remember sleeping on the bathroom floor with a warm towel out of the tumble dryer because @ the time i got diagnosed with divertykulites sorry about the spelling as im not too sure of it,anyways im now coming 32 and for the past 8-10 weeks,ive been eating really healthy but all i can pass is water,so after talking to my doctor he feels thast i may have crohns disease of which i am very high % to get,as my father started off with the same illness as my self,but has had a permanant colostomy bag since he was 42,he is now 61.
when the doctor told me this,he looked very serious,he looked @ me and i looked @ the table kind of thing for 2-3 mins of silence,i didnt know what to say,he also spoke of the word celiacs disease,as ive lost 2 and a half stone in around 3 months.and also he has faxed the local hospital for an urgent appoointment for tests to be carried out
should i be worried?? what tests

 

[rygon]

Hi and welcome to the forum.

Crohns disease is a pretty bad disease and can affect people very badly, but with the right diet and medication (and a bit of luck) you can live a normal(ish) life. Some people have it worse than others.

Personally I would worry about it, whatever happens happens so why worry? I'd read up on it and read this forum to see how to help yourself in the best way possible. Be aware that there is no cure for this disease and anyone saying otherwise is incorrect (there a lot of rubbish on the internet with people saying they can cure anything with dangerous medicine)

Im assuming tests will be blood tests (they can tell your nutrition levels and inflammation levels etc) and you will have to have something like a colonoscopy or MRI scan to see where the inflammation is and how bad it is.

 

[Jennifer]

Hello and welcome to the forum!

Indeed no need to worry. Stress isn't goo for anyone. Just understand that the disease is treatable and you'll likely be on medication and have doctor visits and tests for the rest of your life (that's easy to get used to though, least it was for me). Along with the tests above others could also be upper endoscopy, MRE, CT scan, Small Bowel Follow Through, barium enema with x-ray, pill cam, ultrasound etc. You can contact your GI and ask them specifically what tests you'll be doing. Certain ones require specific preparations beforehand.

Keep us posted on your progress.

 

[David]

Hi there and welcome

The good news is, your doctor seems to be on the ball and is getting you the tests you need. I'd be worried if that WASN'T happening. You're being looked after so now it's a matter of going along for the ride. I know it's hard (I sure suck at it), but worrying about what might be doesn't accomplish anything.

As the others said, please keep us updated as to how you're doing.

 

[Grumbletum]

Hi Kenny and another big welcome to the forum :hug: I'm so sorry you're having these symptoms and you must be very anxious with your family history. I'm from Saltcoats originally, but was diagnosed after I moved here to the Hebrides.
Which hospital have you been referred to? Is it the Central ( is it even still open? ) or Crosshouse?

 

[kenny gourley]

thaks all for your kind words of support,encouragement and positive attitudes.
yep you are all corect i feel very aggitated,anxious and stuff,when in reality i lind of knew that i was a very high statistic,i had the fibre optic camera up the way,when i was just 14,and all i can ever remember the relationship with my dad was always of a careing relationship,where from the age of 9 or 10,i knew what medication he would be requiring by looking @ my father and then @ the clock,my father complained of crohns type pains,cramps,contant pain,i remember my dad being upset a few times when i was very young,my dad would shout perhaps from the kitchen or so "do they think im bleeep kidding on",it seemed that my father had some mystery illness and just put it down to that divertikulites thingy,then there was the apparent tempory colostomy bag,then it was necrtisiost faciestic (sorry again for the spelling,im just a daft welder lol)from which he got his bag moved from the bottom left i think,to just under the breastbone, wot im saying is maybe selfish but im afraid im gonna be living in agony for 2-3 months of every year for maybe 10 yrs before they either treat me for crohn and just tackle the symptoms and hope there no bloackages or complications in the future or actual give me another diagnosis and say what the dam thing is,my wee world is kinda full of confussion right now,like 1 and all of you have experienced,but have i possibly had this since i was 14 when i mustve had bad enough symptoms for them to carry out this proceedure?will they take into concideration of the prancing about they did with my father since he was 21?if i get this treated will i more than probably be able to carry on my working lifestyle or will i be medically retired like my father was from the age of 44?could it if treated early stop me having to take the likes of merbentyle,morphine,codeine,amatrypaline,oxynorm and the likes,its just im useless @ taking medicines,suppose ill learn?as i said b4,it lasted there for around 9 weeks of just passing water and loseing a power of weight,i had the cramps but i say it wasnt that bad,but ive never really had a normal bowel activity,what i mean is its never been the same way over a course of time,its always varied,but it was the weight loss,infact just last week i was thinking of not going to the doctors because it wouldve saved me a days holiday and everything was returning to normal,cramps were away,or almost,my bowel bahaviour was fairly improving,so he,s gave me tablets to slow down my bowel until we find out what is wrong,but he never told me i would have to make funny faces whilst useing the bathroom.
thank you,to all you guys that have taken the time to either read my post or even replied,your experience of this is kinda needed and wanted.
thanks again wee kenny x

 

[kenny gourley]

and crosshouse,thats where all the high tech stuff is now,also the new ayrshire maternity unit for ayrshire and arran,its massive,when your in ward 4a or so,and you look down,its like a mini city lol x

 

[kenny gourley]

oops and im constantly falling asleep,if im left alone for a hour im sleeping lol,is this anything to do with crohns or am i just being lazy?

 

[David]

There's a variety of reasons you might feel fatigued. Some of the common ones for people with Crohn's disease are: dehydration/electrolyte loss, vitamin B12 deficiency, vitamin D deficiency, magnesium deficiency, and anemia. It's certainly something you should bring up with your doctor.

 

[kenny gourley]

ive decided to try one of these body builders milk shake protein shakes,quite expencive,but i did contact nhs 24 and they said there may be no problem with it,so i called the proffesionals 1st lol,i just dont fir into my 28" jeans and feel people are stareing @ me,look kinda like a drugie @ the moment,any1 else tried such things?

 

[Trysha]

Hello wee Kenny,
So sorry to hear you have had so many shocks to take in.
It is always agonising waiting,---- waiting------ it seems like forever sometimes.
It is very good that your doctor is making arrangements for an urgent appointment.
There are some good ways to treat Crohn's these days,and hopefully you will soon be diagnosed and treated to bring about a remission of your symptoms.
Feel better soon.
Hugs and best wishes
Trysha

 

[Grumbletum]

ive decided to try one of these body builders milk shake protein shakes,quite expencive,but i did contact nhs 24 and they said there may be no problem with it,so i called the proffesionals 1st lol,i just dont fir into my 28" jeans and feel people are stareing @ me,look kinda like a drugie @ the moment,any1 else tried such things?

Are you getting them on prescription now? I had Fortisips in hospital after surgery and really liked them. Hopefully they'll boost your nutrition intake so might help with the fatigue and weight gain.

 

[kenny gourley]

nope ive just bought them in the hope that whilest my toilitry habbits have returned after a full 2 months of just passing water,i thought i couldnt afford to lose the weight that i had lost this time with the flare up as ive seen people refer to,so next time,ill hopefully be diagnosed and i wont look ill,alot of people said to me b4 hand about the weight i had lost,a was chuffed for a bit then all that happened,anyways i had my 1sr shake around 8 hours ago,and everything seems fine,its not been too heavy ect thanks again peoples

 

[kenny gourley]

thanks trysha,yep my dad was messed around for 20 yrs b4 he got diagnosed,but with it now being on record,hopoefully i shouldnt be hanging around too long,with it being referred to as a genetic disease thanks x

 

[kenny gourley]

got my endoscopy on the 29th of this month,was very quick,these tests dont fill me with much optimism,so many bad and different storys ive heard about them no finding a diagnoses for like years l8r

 

[highlandsrock]

Hi Kenny

You can't be that daft if you can weld!

Don't worry too much about the endoscopy. You should be given the option of being sedated so you wake up when the procedure is over. I've got another one this Thursday and will definitely get put to sleep first.

I agree with Grumbletum about trying Fortisips rather than body building powders. You should be able to get your GP to prescribe them and then they won't cost you anything. (I'd recommend banana, toffee and chocolate flavours - just my preference). Whilst your at it get your GP to make sure your next blood test checks your B12 level. I've found B12 injections have certainly helped my fatigue.

...and finally - once you've got a definite diagnosis and you find the right medications there is no reason why you shouldn't lead a pretty normal life with just the odd flare up. It does look bleak when you are waiting to be diagnosed but try not to let it get you down.

Good luck for the 29th

 

[kenny gourley]

thank you highlandrock
i just spoken to my dad and we both think well thought it wouldve been the other type of camera,and not down the way,seems strange to me when i had of these last yr.
im almost certain it should be up the back passage way,am i wrong??

 

[kenny gourley]

and yep when i had the endoscopy,i opted for no sedation lol,i thought @ the time ahh it cant be that bad lol,gadz i was wrong,panicking,couldnt breath,then them brittle tubes up the 1 nostral,never again for me,and it must be easier for the consultant to have the patient sleeping

 

[Grumbletum]

I was wondering about that too, Kenny. It's more common to have a colonoscopy to check for Crohn's. But I think Endoscopy is the department for both the up and down tests, yeah?

 

[kenny gourley]

I was wondering about that too, Kenny. It's more common to have a colonoscopy to check for Crohn's. But I think Endoscopy is the department for both the up and down tests, yeah?

hope your right,hope there's not been a wee hik up alreadys

i'll ask my buddy google

 

[kenny gourley]

maybe i shouldnt have,it seems going down the throat,they may be looking @ cancer

i really shouldnt read these sites

 

[Catherine]

The one down throat also looks for celiac disease. Sarah's did both scropies at the same time.

 

[kenny gourley]

well thats me been for the endoscopy,they also took biopsy things from my tummy somewhere,but wont get the results for around 4 weeks hmmmmm bit of a wait but were getting there lol,they also said about going back to see some kind of stomach doctor,not sure why,and i kept asking alot of questions,but they didnt seem keen to answer my questions,or simply didnt know the answers,still a little confused,but the doctor lady that done the examination said it looks like celiacs,so a wee wait for my wee self lol,btw thanks you 1 and all for your positive feed back x

 

[highlandsrock]

Hi Kenny, glad you got your endoscopy out of the way. Did you have the burnt banana spray? It's making me feel queazy just thinking about it. I can understand that the doctor who carried it out wouldn't want to commit themselves without the results of the biopsy. They could tell you one thing and then find it's something else.

BTW - I've got my fifth endoscopy coming up in 3 weeks time. Thank god for sedation

Regards, Nigel

 

[kenny gourley]

thats the 1st time ive had the sedation,and tbh theres not much of a difference,i felt the sedation was very poor,and nope i had the spray 1st 2 times lol