New member

[sjanajayne]

new member

Hello Everyone


My name is jayne and im new to this site. I have had IBS for the past 10 years which has flared up in the past 15 months, the gastro dr has told me i have IBD and am now being investigated for crohns/ulcerative Colitis.

Can i just say before i start that i am glad i found this site and at least im with people who understand, as its very lonely when you have no-one to talk to.

I have been reading every site on the net about these diseases and am more then certain i have either one and am rather scared, as the past 15 months has been very painful and i find it all hard to cope with, could any of you tell me if i possibly have any of the diseases and have they had any symptoms similar and can they be eased.

I have lower abdominal pains, it feels like there is preassure down below, continously every day, sometimes i cant stand or walk for to long as the preassure pains are rather bad, my tummy bloats most the time and my bowel movements are rather erractic going from diareah to constipation, i burn-up and sweat a lot mostly round the upper body mainly the head, my tounge feels sore all the time and my tastebuds have left the building lol
I already suffer with depression but find its getting worse mainly due to not being able to cope with this disease, whatever disease it is.

IS THERE HOPE of any sort to at least ease the symptoms and try and have a bit of a normal life???

Thank you
Jayne

 

[Dexky]

Hi Jayne, when is your next test? Hopefully, you'll get a firm dx so they can get you on the proper meds and on the road to remission. Good luck and welcome!!!

In the meantime, you could try a low-residue diet. I think there is an example in the forum Wiki. I'll try to find the link and add it.

Here it is:

http://www.crohnsforum.com/wiki/Low-Residue-Diet

 

[sjanajayne]

Hiya im just waiting for an appointment anytime now to have an endoscopy (again) think they also want to put camera into my bellybutton, do you know why that is?
Its a rather slow go here with hospitals, i live in Wales UK the sheep get better attention lol

Thank you
Jayne

 

[Dexky]

I don't know about your medical system. I know some will defend it to the end and some don't seem too happy with it. When Joan (username Astra101) comes on, she could give you some advice on how to move to the front of the line!!

I haven't heard of a camera in the belly button. Do you mean surgically implanted? Are you sure they don't mean the pill-cam? Look at this:

http://www.crohnsforum.com/wiki/Capsule-endoscopy

 

[sjanajayne]

Hiya

No its a small camera put into the bellybotton apparently to investigate the higher small intestines, not sure weather to have it yet as it can be a bit risky, as the camera can possibly damage the intestines.
Have had large intestines investigated and have a serious gastro influx something or other, thats ok though cos meds i am on work, its the small intestines they want to investigate, just going to have endoscopy for now see what they find.
Thank you for reply
Jayne

 

[Dexky]

??So they actually cut into your bb and your small intestine to insert it?? Or does it only view from the outside of the small intestines?

 

[sjanajayne]

Dont really know, doctor said they feed it through the bb and look through your intestines its called something like a sidyoscopy thats not spelt correctly, actually think i will look it up as Dr did say its a bit risky

Jayne

 

[DustyKat]

Hi jayne and :welcome:

I'm glad you found your way here. Are you having a laparoscopy? It sounds like this is what you are talking about, they insert a small telescope through your navel and look at your intestines. When you have a diagnosis you will be able to receive appropriate treatment that will help alleviate your symptoms. This is a great place for support and info so I hope you stick around. Please keep us posted on how you are going. Welcome aboard!

Take care,
Dusty

 

[reidyjo81]

Hi
Just wanted to say welcome ! Sorry to hear your having a bad time. I am also in the UK, but I have private health care and have never been treated on the NHS with my Crohns. Although it did take about a year for my GP to actually refer me and get to see a specialist. Hopefully with these tests you will be able to get prescribed the right meds for you and things will improve

Jo xx

 

[Astra]

Hi Jayne
and welcome fellow Brit

If it's a laparoscopy it'll be a small incision next to your belly button not thro the belly button. They'll blow air into the pelvic cavity that moves other organs out of the way. This creates a dome like shape so that the surgeon can navigate the camera around and have a good look. I've had this twice, you wont feel a thing. It's the after pain that hurts, the carbon gas that they pumped into you, take some Windeeeze!
A sigmoidoscopy however, is different. This is a camera up your bum, which examines the large colon. for this you'll need to prep, this is a drink that clears out your bowels.
Ok, about the IBS diagnosis, I got that for 15 years, and in all time, I was scarring from recurring inflammation. This scarring or strictures can cause narrowing. The pain that you are describing, intense, can hardly walk, sounds like the start of this narrowing.
Narrowing can then cause an obstruction or blockage. Signs to look out for is projectile vomiting and explosive diarrhea! Fever, general malaise.
A&E straight away!
Keep your eye on your temp, if this rises, go to A&E.
Sometimes our system stinks, depending where you are, sounds like they're not taking this very seriously, so you could fast track these tests by going to A&E.
Try not to fret about the diagnosis, once you're on appropriate IBD meds, things should start to improve, and YES! we can lead a very normal life!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[seaofdreams]

Welcome Jayne. Joan pretty much covered everything I would have said haha. I'm sure you'll find this forum to be a great source of support and information

 

[sjanajayne]

Thank you Joan and all of you for your very helpfull advice, and yes it is a laparoscopy they want to do also the endoscopy, i have had an endoscopy before and yakk dont like, but it has to be done.
(projectile vomiting and explosive diarrhea! Fever, general malaise)? i have had that a good few times, especially the fever that seems to be every day, at some time or other, the projectile vomiting as eased, i just vomit occasionally, so what your saying next time it happens im to go to the hospital? next time it happens i will go straight there, thank you very much for that very informative advice.
AND thank you all very much, just for being here, i have felt so alone not knowing who to talk to about all this, i feel a hell of a lot better just knowing there is someone to talk to who knows what your going through.

Thank you all Jayne XxX

 

[Astra]

Hiya Jayne

how are you doing hun?
just to let you know that I ignored projectile vomiting for 6 days! gastro said never ignore vomiting, sure sign of blockage. It's got no where to go you see? it either comes up or out, yeah?
Of course, I didn't know that at the time, but I bloody well do now!! I had a raging fever too, ignored that as well!
When I got to A&E via an ambulance, gastro said I only just made it! My CRP (inflammation markers) were 261, severely infected, and I nearly perforated. Luckily for me, I was saved with metronidazole, morpheine and IV hydrocortisone, and no surgery.
So, yes, go straight to A&E, don't do what I did Jayne, and ignore it. And when you get there, be insistant that you're under investigation for Crohns etc, or they'll waste time looking for appendicitis, gall bladder and kidney infections etc.
good luck and let us know how you are
xxxx