In the middle of being diagnosed all signs pointing to Crohn's ....help!?!?

[RayRay1992]

Hi there everyone

My names Jamie , Im 22 and since september 2013, ive been having really bad stomach pain after eating, and going to the bathroom, i've gone a lot more frequently and urgently, and i constantly feel like i need to go (which is very annoying) also i am so tired lately have no strength at all and have lost about a stone and a half.

Unfortunately it's being a bit of a nu-sense to diagnose , i've had a sigmotoscopy where they found red patches on the inside of my rectum, but the biopses came back positive, and from the blood test they found that i have a b12 deficiency and a folate deficiency. I recently went to the hospital 2 days ago an i'm now going to be having a colonoscopy and a MRI, to have a look.

But obviously as i'm sure you all are aware it can be a right dampener on your social life, for some reason every time i drink alcohol it makes me need to go to the bathroom almost instantly and my stomach has really bad pains, so i can't go out with my friends anymore, and i going out to eat is always terrifying because after eating my stomach hurts and i need the bathroom shortly after, and it makes university a nightmare .

Luckily my girlfriend is supportive and i love her to pieces for it, and my university is very understanding.

So i'm just wondering did it take ages for you guys to get diagnosed ?
Do you agree all my signs point to crohn's (I know you can't diagnose etc)
Any tips on how to cope ?


Thank you all

Jamie

 

[valleysangel92]

Hello Jamie! Welcome to the forum.

You said that your biopsies from your sigmoidoscopy came back positive, do you mind if I ask what they were positive for? Or did you mean to say they were negative?

Have you had any blood tests for vitamin or mineral deficiencies? Many of these can cause problems with low energy and are common with digestive illnesses.

I understand that having such an illness can have an impact socially, but could you not go out and have soft drinks? You can still have fun sober. Or find other things to do like go to the cinema? If your friends are good friends they will understand that being ill means you can't do all the things you used to right now. perhaps you could even invite friends to your house and have movie nights with safe drinks and snacks. You could try keeping a food diary to see if there are any specific foods which make your symptoms worse or if it is just any food. Many people with IBD find that high fibre foods can make symptoms worse, or you may have a food intolerance or allergy as well.

It's good that your girlfriend and your university are understanding about your situation.

Diagnosis is different for everyone... It took me almost 5 years after my first clear symptoms to get diagnosed, but I was younger and it wasn't something my doctors were expecting. Some people are diagnosed in a matter of weeks, others it takes years. It all depends on how clear the symptoms are, how much visible damage there is, how conclusive tests are and how good your medical team is.



For stomach pains, you can try heat packs, they help a lot of people. If you have bloating and nausea, peppermint and ginger are good. You can use basic painkillers but keep away from NSAIDs like ibuprofen as these are widely considered
unsafe for people with digestive disorders.

Your symptoms may well be crohns disease, but there are also a number of other conditions that could cause these symptoms so it is important to keep an open mind for now.

 

[RayRay1992]

Hello Jamie! Welcome to the forum.

You said that your biopsies from your sigmoidoscopy came back positive, do you mind if I ask what they were positive for? Or did you mean to say they were negative?

Have you had any blood tests for vitamin or mineral deficiencies? Many of these can cause problems with low energy and are common with digestive illnesses.

Hi thanks for the swift reply

An sorry i meant they returns normal,

And yeah ive had quite a few blood tests for everything under the sun aha, and it just came back with b12 and foliate

An yeah thank you for your ideas of what to do, ive been to the cinema sometimes and had my friends round to watch movies and sports etc

It's sometimes a little disheartening seeing your friends photos on facebook on a night out aha feeling a little left out

But again thank you for the help !

 

[Beach bum]

Hi there, it sounds alot like it I am afraid, but keep your fingers crossed it could be something more temporary. It must be awful to go through this at Uni it has been hard enough for me and I am much older and more settled.

It took me about 8 months to get diagnosed, but alot of that was from the doc sending me off with different pills to try for a few weeks at a time, then me coming back and saying they hadn't worked. Things like anti sickness and anti acid.

Once I had gotten to the MRI scan stage it was pretty quick.
My problems are higher up so I don't tend to have the urgency problems you mention except occasionally on nights out drinking. Actually what I have found is that it is the sugar (and even artificial sweeteners) in mixers that causes me to rush to the loo. So I try to avoid too much coke ect. and find a gin and tonic to be much better.

Have they given you some iron tablets to take ? I found I was so much better all round once they got the anaemia under control.

 

[valleysangel92]

Okay, that makes more sense, thanks for clarifying, that doesn't indicate that you can't still be diagnosed though.

Okay, have you been given any supplements? Those deficiencies can really make you feel rotten.

That's pretty good you can still go on nights out if you feel well enough, just stick to the soft stuff . Trust me, you get to laugh at all the stupid things your friends do when drunk... With the perk of you being the only one that can remember the next day . You're welcome to inbox me if you ever want a chat, I'm only 21 myself so I'm familiar with the dilemas surrounding being diagnosed at this age. We also have a young adult support group which you may find helpful.

If there's anything else you need just ask away!

 

[RayRay1992]

@beach bum, absolutely love the name btw,

yeah it is abit annoying at university, but gotta try an push through it, difficult at times but as mentioned they understand and never hassle me about my attendance

and no, no iron tablets, i've had b12 injections and foliate tablets , oh and colofac tablets for stomach pain (barely help tbh)

so yeah i guess its just the waiting game

But thank you for the speedy reply !!

 

[Axelfl3333]

Welcome to club no one wants to join!sounds like your really new to this,it will eventually get better hopefully quickly,start a food diary you may find your eating a trigger food which is setting you off,bland your diet out for a while chicken,chicken and yes more chicken reintroduce your usual diet see if it or anything in particular gets you going then avoid!alcohol wise be ultra cautious but as your a young whippersnapper I know you need to hang out with friends in the pub,lager is generally awful for crohnies,try something vodka based,Smirnoff ice,vodka lemonade,gin an tonic(in moderation)try at home first but only do this after things improve.exercise is a common thread that helps,it helps me even if it's only in your head.
Medicine wise try to be regimented about taking them if it's 5pm it's always 5pm.try not to do the dr google thing to much,no news is good news also try not to read to much into the warning leaflets with your meds just remember your gi clinic will probably do regular bloods to make sure everything I so.I.I,ve found that getting chatty with the clinic nurse is a good idea,way more approachable than most consultants who can be arrogant gits.
Probably the most important one to remember is it will get better.all the best good luck

 

[RayRay1992]

Thanks Axel, yeah i'm new to this aha
i started a food diary and i know spicy stuff and if i have too much coke set it off.....oh an chocolate ...noooooooooo chocolate

And thanks for the alcoholic drinks idea is fab thanks i will defo have a try an see what i can drink or not , and yeah i'm trying to exercise its just difficult with the fatigue etc

but again thanks for the swift reply !