Crohn's Disease Forum » Your Story » Im new and really cross

04-15-2011, 06:06 AM   #1
New Member
Join Date: Apr 2011
Location: Leeds, United Kingdom
im new and really cross


i have had bowel issues for years, i had a bad experience at the gp's when i was 12 and vowed i would never see a doctor about stomach ache again, and for 25 years i didnt, i suffered on my own, self diagnosed IBS and hoped it would go away.
I had my third child in sept 09 and since then have ahd a horrendous time, by april i had no choice but see a gp, i went to the only one i trust.
My symptoms, chronic, frequent diahorrea (sp), pain in right side, fevers, bloating, and wind.
I was sent for colonoscopy, have 3 large ulcers in terminal ilieum, was told then that it was classic crohns disease, biopsies were taken.
was then completely mis -managaed, i was told all was fine by gp receptionist and referral to gastro never came through.

So, long story sorry, went back to gp in march this year and said i was in pain, felt weal
k and needed help, she did ny bloods again, re refeered me, checked my biopsies and said it was suggestive of crohns and i had been given someone elses results originally! i was fuming.
i also saw a rheumy this week and have arthritis also, and seeing opthamolgy as my eyes are very sore.

my bloods showed pv and esr raised and a folate deficiency.

i saw gastro yesterday, and was the man who did my scope, he rememebred me and said my results suggest crohns but as the biopsies werre damaged i needed further tests, now going to have a ct scan and possibly a capsule endoscopy. I have been told, that all information needs to be collected and then treatment can begin, i have been told i will be sent an appointment in 3 months! i am gutted, he sat there and said its crohns but still not medication, so add stress to my list of symptoms.

sorry for going on but totally fed up. thanks for reading,
04-15-2011, 09:04 AM   #2
Senior Member
Join Date: Mar 2009
Location: United Kingdom

My Support Groups:
Yup, getting through the random hoop-jumping of over officious paper-pushers can be very frustrating... and the NHS is full of them. Not to mention results confusion and loosing of records/tests/etc. I've seen quite a few over the years, not just with Crohn's. Still... it could be worse, we could be fighting insurance companies and facing bankruptcy.

Anyway, hopefully when you finally see the consultant again it'll all get going.
04-15-2011, 09:05 AM   #3
Crohn's 35
Inactive Account
Join Date: Oct 2009
to the forum! As you may know waiting that long to see a Gp was long overdue. Most people get frustrated and dont go back. When bowel problems start, they can cause more damage to the intestine and can burst. Diagnosis is very hard for some, I had a year of horror before I got my DX. Ulcers can cause inflammations to cause narrowing, which in turn can be a bowel obstruction which is painful. A small bowel follow through can see sometimes better than a CT scan. I hope you get some answers and get on something to control your pain. Good luck , sometimes it takes awhile.
04-15-2011, 10:37 AM   #4
ameslouise's Avatar
Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Hi and welcome! No wonder you are frustrated! Don't blame you there.

Bowel issues, eye pain and joint pain - make sure you mention them all to your GI and your GP. They are all classic Crohn's symptoms.

I hope you can get in soon, get the official DX and get going with some treatment! If things get really bad, get yourself to the ER and scream like hell. I learned this from the other Brits as the best way to deal with a dire situation over there!

Good luck - keep us posted! - Amy
04-15-2011, 10:54 AM   #5
Your Story Forum Monitor
xJillx's Avatar
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
Welcome to the forum! The diagnosis process can be really grueling and I can understand your frustration, especially when results get mixed up!! I sure hope you can get to the bottom of all of this soon and start to feel better. Keep us posted!

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
04-16-2011, 09:29 AM   #6
New Member
Join Date: Apr 2011
Location: Leeds, United Kingdom
hi and thank you for the warm welcome,

i am finding it all frustrating, i am a surgical nurse and think sometimes i have too much knowledge.

i am reluctant to take supplements as i dont want to mask symptoms, hard enough to geta diagnosis, but have seen a sniff of feeling better can give an incorrect diagnosis. so need to suffer a little longer.

my hair is falling out, think it may be stress and have no energy, my bloods indicated folate deficiency which concerns me as i am also ttc, dont think thats going to happen

anyway, theres people much worse of than me so must count my blessings
04-16-2011, 03:19 PM   #7
Senior Member
Jennjenn's Avatar
Join Date: Feb 2009
Location: New York
Hi welcome

The whole process and then dealing with everything is frustrating. I really hope everythign works out for you.
04-16-2011, 10:30 PM   #8
Join Date: Apr 2011
I find GI docs most frustrating. My spouse dealt with the same thing.

Dr. S (spouse of a Crohn's sufferer)

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