• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohn'S Newbie

Crohn's Newbie

Hi everyone my name is Helen & I was newly diagnosed with Crohns after a colonoscopy in november.

I had bowel problems for many years including both constipation & diarrhoea & blood loss which I put down to IBS & piles (i got these once after a bladder op) & the fact that I was taking medication constantly for bladder & kidney infections. My mum has had Crohns from being 17 years old & she always had the runs & had 2 bowel resections. I also had re occurring ulcers in my mouth & throat & skin & joint problems but no-one picked up on the issues & that they could be related. even though I have a family history of the disease.

The reason I went for a colonoscopy is that my dad had been diagnosed with polyp cancer & I was worried due to the amount of bleeding I had that I wouldnt recognise any changes as I had all the symptoms anyway.

Annoyed with myself for being ignorant really but as my mum didnt have the mouth or skin issues I never knew they could be a Crohn's symptom.

I was put on budesonide & I have been taking lansoprazole since having my gall bladder removed in 2008. I am going back to see the doctor today to discuss going on to 6MP.
I am a little worried as I have been getting severe upper abdominal pain on & off for a couple of weeks & a recent gastroscopy revealed I have excessive bile in my stomach.
Last night I had to come out of work as the pain was so severe it went straight though from front to back & I darnt eat anything even soup as I am frightend it wont go down.

Dad is doing ok by the way & is currently on chemo.

I am very worried now.:sign0085:
 
Last edited:
You sound just as bad as what I was in 2010 when I was diagnosed after doing over 14 days in the hosptail within two stays and they finally did the colonoscopy and diagnosed me in September of 2010 with severe crohns disease. They should get you in and get the process started soon. So you will have some answers. Mine had gotten so bad with the mouth sores and joint pain, I could barely walk and only drink fluids. It sucks. I hope you all good news and stress to your GI how horrible you real and you want to get the show on the road.

I wish you the best of luck! Keep us updated! :)
 
Hi
Thanks for replying. I think Crohn's people are very brave souls who just get used to putting up with stuff as I have. I know the bravery went out of the window for me last night though. I have had over 15 ops for bladder, kidney & womens issues & some of these quite major but the idea of bowel surgery really scares me for some reason. Maybe I have just had enough of hospitals.
 
Just do a lot a research and maybe talk to another GI before having to make such a big decision. Hang in there and keep us posted. Try not to stress yourself to much because it will make you feel even worse.

Good luck! :)
 
Hi
I am seeing my GI this afternoon at 4.15.
Will keep you posted as to what he says.
Hope the mouth ulcers get better soon by the way. Mine always cropped up I had low folate. This time I have them in my nose too which is annoying as well as sore.
Do you have a sore dry throat to & problems swallowing?
 
With the ulcers yes..my thoart was real sore and dry. It hurt to swallow because after having the colonoscopy in 2010 and endoscopy as well...I had the ulcers from my mouth, down my throat all through my body to my "bottom" area. So...that's why mine were so horrible. This last week mind have popped up just a few in my mouth and I have been constantly drinking water. And eat a lot of soup. It helps mine out quite a bit.
 
I have had them quite severe 3 times now & even my lips swell. My kids know I am unwell if I have my Jagger lips lol. When it 1st happened they thought I had a bacterial throat infection & considered taking my tonsils out as they just didnt know what else was causing it. Mine usually go down in 3-4 weeks.
Hope yours dont last that long. Do you also have the geographical tongue?
 
Its when your tongue has a kind of map like pattern with red or purple patches on it. I think there is a thread somewhere on here about it.
 
I need to look it up on here. I have only had the white sore patches on and down my throat with some lingering ulcers. I need to go read some on that one.
 
Kip1

I agree with momof2EW. This upper abdomen pain, excess bile in the stomach, and severe pain radiating around to the back. Don't get scared but you need to pass these symptoms on to your GI doctor right away.

When I say don't get scared I'm not playing around with you. I've battled this disease for 41 years and I am shooting straight with you.

Just talk to him soon.

Love and kisses

Live long and prosper


Goldbrick911
 
Kip1

I just saw your new post. Sort of thought that. I've had 2. Here's the MO.

Try not to worry. These days the surgery teams are finely tuned. Be prepared for some discomfort when you wake up. Just roll with it. It won't last long. Get up and walk as soon as they want you to. Use the pain medicine as you need it. Don't worry about it.

Now here comes the good part!!! In a few days, you will start feeling like a million bucks. The inflammation will be gone and once you are able to eat you will be amazed. If your sight is at the terminal Ileum, your small bowel will develop a new terminal Ileum of sorts with some shortcomings. You may need some vitamins, 'B' complex supplements, Iron, etc. But food will be a wonderful thing. Stay close with your GI doctor right away and get ready to battle the disease as soon as it rears its' ugly head. That's the advantage you have now. You are ready and waiting for it with an arsenal of weapons!!

Best of luck.

Love and Kisses

Live long and prosper


Goldbrick911
 
Top