New Member here

[littleliz]

Hi there. :smile:

I'm new to this whole thing so forgive me for being ignorant and not knowing many technical terms.

Anyway, I'm Liz - Im 21 years old and i've recently been told i may have Crohns Disease. I'm currently undergoing tests and such to get a diagnosis.

For the most of my so far short life i have always been ill. And right now this is really affecting me more than ever - I can't live my life properly like a normal 21yr old. When i say i am always ill, i mean, if there is a cold going, i will get it. If there is flu around, i get it. I have constant recurrent infections, such as ear infections, abcesses (2 months ago i had surgery on a perineal abcess).In the past year i have had to quit university and my job, due to absence.

I have recently had severe weight loss, abdominal pain (lower right side), strange faeces (soft, mucas, undigested food), anal fissures, I find myself constantly tired, I often have bad hot sweats, severe bloating after eating/drinking, aching muscles in lower back/neck/legs. I've always had really bad mouth ulcers.

In 5 days i will be going to the hospital to see a Gastroenterologist for the first time. What should i expect to happen here?

I'm really fed up right now. Thankfully i am fully healed from my recent surgery, but i am very weak and feeling helpless. I've lost 3 stone and being tiny anyway i couldn't afford it! :depressed:


Thanks for reading - Liz

 

[Linney]

Hi Liz, sounds like you are having a really bad time right now, you will find a lot of help and support from everyone on this site. I was diagnosed last year and my first visit to gastro resulted in a CT scan, then colonoscopy. Bot these were fine although you do have to have a bowel wash out the evening before (at home) which is unpleasent but necessary. Since then I have had 2 barium x rays, again not too bad and an MRI scan. You will be fine with any of these after all you have had to go through so far. I probably seems very hard at the moment but try to keep positive and pace yourself, tiredness seems to be something we all suffer from and at your age it must be hell when you want to lead a normal life. Are you on any medication yet ? Some meds will add to the fatigue. Hope the visit to the hospital will be the start of the road to remission for you. Let us know how you get on. x

 

[littleliz]

Hi Linney,

Thanks for your detailed reply, i appreciate it, however i am not looking forward to a bowel wash out!! Ha ha.

I'm on no medication at the moment. Recently finished a long course of antibiotics however.

It is frustrating as i'm an active person and at the moment all i have to do is wander around the house and i'm ready for a nap - so i am missing my bouts of energy.

I'll let you know what happens at the hospital. Fingers crossed something good comes of it, I'm at the point where i don't care what i've got i just want to get diagnosed!

Thanks again.

 

[Keona]

wow Liz...you sound just like me ..just wanting to know what it is since you already have the symptoms.
Welcome to the forum - they really are great people here and knowledgeable. They also have a great sense of humour (albeit twisted at times)..
Good luck at your appointment. The first appointment I had with the G.I they just took all my information, listened to my complaints and then scheduled tests. Sounds like you're in the U.K so things might run differently there..there are people from the U.K on here who likely have more answers.
I am having an endoscopy today and then I am scheduled for a MRI to look at the lower bowel.
Surprised they could take a look at you while you were in hospital having surgery.

Anyhow... see you around the forum!
Wendy
________
Toyota camry history

 

[Hedgehog]

Welcome Liz,
You must feel really down at the moment but have faith that you will get there eventually. Crohn's seems like a difficult disease to diagnose. I was poorly for three years before they found it with a capsule endoscopy in my small bowel. Got told it was IBS/constipation/depression but I knew I was seriously ill.
You have all the classic symptoms of Crohn's. My advice would be to make sure you tell your doc how ill you've been and give him all the symptoms. I've found that you have shout a bit to get taken seriously.
It sounds like you may be a bit malnourished too. Maybe take some supplements and try a bland diet for a while. The LOFFLEX diet might help - there's some threads on here about it.
Hope all goes well and you get some answers soon,
Gail
xx

 

[Dustin]

Hi Liz,
Welcome to the forum. You sound like how I was before I was diagnosed - most of the same symptoms, but I was a bit younger when I was diagnosed. Hopefully your new GI will do wonders and get you on the road to recovery. Linney covered just about everything I would have said. Don't worry about the clean out though - I find as hard as it is, I usually feel slightly better the next day when it comes to symptoms.

Good health and best of luck. Let us know how you get along.

 

[Astra]

Hi Liz
and welcome

Poor little love, I feel your pain, been there ,done that!
Hopefully they'll get you on Pred, this is a steroid that'll stop inflammation dead in it's tracks and the D.
It will also help you to gain weight, give you lots of energy and make you feel a bit normal again.
Whilst Prednesolone is an evil drug, cos of the side effects long term, it saved my life 3 months ago when I was in hospital,
so have a look around the forum on Pred, diet, supplements and other treatments and get yourself armed with some ammo, make a list of symptoms, and scream at your gastro if he mentions IBS!
good luck Liz, and dont worry about the scope, it's fine, and I got to watch mine on the big screen, it was ace!
lotsa luv
Joan xxx

 

[littleliz]

Hi All

So i went to the Gastro on saturday as planned. He said he is 90% sure i have crohns disease.

He has prescribed me some medicaton - Pentasa, they are little sachets. Has anyone else taken this before?

I have to go back in 2 weeks. And i need to do MORE blood tests, eugh.


Liz

 

[Rob]

Welcome Liz

glad ya got see the doc and have some meds to start assisting your situation

I've not tried pentasa so can't help with that but lots people here hav an will be able give info on it

did your dr talk too you about supliments etc? Or are you taking any?
These will tend too help a bit seeing as we don't get te correct vitamins etc due to our illness
most ppl seem to take a multi vitamin, fish oil and those on steroids such as prednisone also take calcium with vitamin d tablets
I found since I started taking the multi vitamin, fish oil capsule and vitamin d/calcium tablet that I felt a bit better and gained some extra energy too

good luck with it all

 

[Astra]

Hi Liz

Glad you got to see your doc on Saturday, I'm on Pentasa, have been for 5 years, it is a very good anti inflammatory, to maintain and prevent further inflammation, especially if you're in remission, but IMO, not strong enough if you're flaring really bad, give it 2 weeks, then if it isn't working, tell your doc, and if you're still having D and lower back pain, then maybe a short course of Pred will stop the flare. You can still take the Pentasa tho, I did during a major flare, with the Pred, and continue with it after the Pred to maintain.
good luck
Joan xxx

 

[Linney]

Hi Liz, I started on Pentasa and have to say they had no effect, I think they are long term to help when you are in remission, but I think it seems the way to start on the less potent drugs first and work your way up if necessary. Astra is dead right Pred is the one to get flares under control but if you do go on this ask for calcium supplements as steroids play hell with teeth and bones if taken for a long period (ask my dentist I spend nearly as much time there as I do at docs lol). Keep smiling it takes a while to get to grips with this disease and all it probs.