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Crohn's Disease Forum » Your Story » Introduction to my story....


02-24-2014, 04:10 AM   #1
dianebaker1964
 
Join Date: Feb 2014
Location: United Kingdom
Introduction to my story....

Hi I'm new here and not sure where to start. I was rushed to intensive care 2 years ago with problems with duodenal ulcers in my stomach, myself and my family were told I had cancer (twice) and to get my affairs in order, only then to be told it wasn't to cut a long story short 2!years on and practically being bed bound for 2 years that they think it's crohns, I cannot have the camara up my bottom due to the skin around that area being so infected due to the crohns they are trying to treat it with steroids but it's just not happening, I've lost 4 stone in weight in such a short amount of time, but glad to say it's going back on very slowly, I also have copd which is a lung condition so can't breathe when I do anything, I cannot get to grips with the crohns I leave out foods that I think is going to make it worse but it doesn't work doesn't seem to matter what I eat I'm always left running to loo, bloated feeling and even worse like I want to go loo constantly even when I've been. just really struggling at the mo and thought it would help to talk to others in same position as people that don't have this don't understand how horrible it is. I have other health problems but don't want to bore everyone first time on here. Thank you for listening diane
02-24-2014, 08:29 AM   #2
Kero
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Join Date: Dec 2013
Location: Edmonton, Alberta

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Glad you found us! Tons of info on here and personal experiences. Hoping you can get some treatment soon. Sounds horrible what you are going through
02-24-2014, 01:09 PM   #3
scottsma
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Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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what a really awful time you've had.You'll find lots of understanding and support on the forum and we all appreciate you joining us.Every ones symptoms, diagnosis and meds.are different but we are all in this together and we are interested in your input.Please keep us up to date and feel free to have a good old moan anytime you feel like it.I hope you start to feel better soon.
02-24-2014, 01:17 PM   #4
dianebaker1964
 
Join Date: Feb 2014
Location: United Kingdom
Thank u everyone's so nice here and it's nice to talk to others that now hoe u feel even though everyone's different
02-24-2014, 01:26 PM   #5
pink&green
Senior Member
 
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Hello and sorry you are having such a hard time sending your way.
__________________
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
02-24-2014, 07:16 PM   #6
Jennifer
Adminstrator
 
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Hi dianebaker1964, sorry to hear about everything you've been going through.

So you're still in the process of being diagnosed since they cannot do a colonoscopy? Have they done an upper endoscopy, CT scan, MRI or even a pill cam to try and find out what all is going on so you can get a diagnosis and then move onto proper treatment? What steroids are they using (Prednisone?) and what dose? Since it doesn't seem to be working, what's your doctor's plan as far as tests and treatment goes?
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
02-24-2014, 07:38 PM   #7
carrollco
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Join Date: Dec 2010
Location: Grass Valley, California

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We welcome, Diane. Sending you (((hugs))).

__________________
Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
02-25-2014, 01:21 AM   #8
dianebaker1964
 
Join Date: Feb 2014
Location: United Kingdom
Hi dianebaker1964, sorry to hear about everything you've been going through.

So you're still in the process of being diagnosed since they cannot do a colonoscopy? Have they done an upper endoscopy, CT scan, MRI or even a pill cam to try and find out what all is going on so you can get a diagnosis and then move onto proper treatment? What steroids are they using (Prednisone?) and what dose? Since it doesn't seem to be working, what's your doctor's plan as far as tests and treatment goes?
Yes I've had ct scans, MRI scans also the camara you have to swallow 4 times, have been on prednosline (sorry about spelling) I was on 40mg per day which I'm now down to 20mg per day, I have had smear tests and biopsys in vaginal area which is where the crohns was first picked up as it's affecting that area very badly, the ski. Doctor I see for that is the one that said it's definitely crohns and got my astro doctore to get me on the steroids, they have eased the problem in vaginal area but my stomach is still bad, diarriaoh, bloating, pain, terrible weight lose. I'm waiting for app to see my doctor but haven't seen him for a while but I've had awful trouble with my hospital over treatment I've had, I was told I had cancer twice before they had got results back, I have 7 duodenal ulcers which caused me to nearly die 2 years ago and since then I have been so ill and where the crohns diagnosis came about as it was showing up on scans and biopsys I'd had
02-25-2014, 03:42 AM   #9
Jennifer
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Hope you get an appointment soon. Steroids are only meant for short term and it definitely sounds like you need something for maintenance and that helps to prevent the inflammation rather than just treating it when it comes. Keep us posted.
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