09-25-2011, 11:02 AM   #1
meardonna's Avatar
Join Date: Aug 2010
Location: tyne and wear, United Kingdom
I'm FREE!!!!!!!

I began posting on here last year, it has been a long journey which began long before i found this site! nearly four years ago whilst being 7 months pregnant I found I had UC. My diagnosis was a rollercoaster! an unbelieving gp who thought I had pregnancy problems and my 'IBS' playing up, to two weeks later being in hospital, barely concious, having 5 pints of blood and lots of medications that i did not know what i was getting. it was a hard time finding out I had this disease, not knowing what it was, also with the hormones with being all over the place. surgery was mentioned a few times and a few times I was almost being prepped for a c-section and surgery. I fought all the way! i'd never known anyone who had a bag, I thought it was rare, disgusting and not something that happened to a 'youngish' mum! I won the fight, after mlnths in hospital, baby came, had a beautiful baby girl! feeding her gave me 2 wonderful years of remmission, I'm still sure research should be done into hormones and the disease!!! I knew stopping feeding would have an effect but you have to do these things! so about a year and a half ago, I stopped and suddenly fell really ill again! on steroids for 123 months with them trying drug after drug! last december during a colonoscopy my consultant again mentioned the surgery saying they were seriously running out of options. i went away gave it thought, was stuborn! argued with my family who just wanted me back and if that meant a bag then fine. me on the other hand still wanted to fight! I met people with bags researched, spoke to people on here and other forums and facebook, and eventually thought maybe. Then with a meeting with my surgeon i was told do it now, or next month I'd be an emergency! not what you want to hear!! so I took the plunge! 2 weeks later i wass in! had it done laprascopically. I was only in hospital 3 days, I hate hospitals and hate being ill! That was back in may!! 6 weeks after surgery i was canoeing, swimming, camping, and hiking. i have my life back, my kids have there mum, my husband hasd his wife. I am happy! i love life again, no longer just existing and bein g on medicvations which are as bad as the disease! yes having a bag can be annoying sometimes and I wish i was normal, but how I was before the operation was not normal! squirt has given me my life back and i love him for it! so if you have been told you may need a stoma, it isn't as bad as you think and could actually be the best decision ever!!!!
Donna and squirt x

diagnosed 2008, indeterminate, tried everything!
total colectomy may 2011
Loving squirt my stoma!!
official diagnosis UC recieved june 2011
09-25-2011, 01:35 PM   #2
social me
Senior Member
social me's Avatar
Join Date: Mar 2011
Location: columbus, Ohio
So happy for you, I was in remission for 2 months this summer and it was great. Now back to er visits, doc apts. up the ying yang, infusuions and the worst of it all bed ridden because I am spent all the time. BUT here is the good thing I have hope because I know what helped me last time. SoI am staying positive and no longer beating myself up. So hey positive attitudes can heal! Way to go. YAHOO 4 U!!!
Pristique- Anti dep.
Lamictal- Anxiety
Asacol 400mg 2pills 3x daily
Remicade First treatment for Crohns 4-12-11
B12 shots once a week

Been on Remicade for over 2 years for other immune disorder I have. Docs not sure this treatment will be effective for me as a treatment for Crohns.

Come to me and I will give you rest -- all of you who work so hard beneath a heavy yoke for I am gentle and humble, and you shall find rest for your souls; Matthew 11: 28-29 TLB
09-25-2011, 02:18 PM   #3
Your Story Forum Monitor
xJillx's Avatar
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
I am so happy you are loving life again. Thanks for sharing!

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

I am still sick and so confused...
09-25-2011, 04:59 PM   #4
Forum Monitor
Join Date: Jul 2010
As a fellow female ileostomate for 25 years, I am so happy for you. I wish others who were facing ostomy surgery wouldn't look at it as a life sentence and wait until it was a life or death situation but really look into a support group, do the research, and meet others to see that it's not that bad. You really do get your life back and you are the same person as you were before, except that your plumbing has been rearranged.

Ileostomates can travel, go swimming, get married, go to school, climb mountains (we had an 86 yr. old member yrs. ago from our support group who loved mountain climbing and she wasn't going to let a little old bag stop her from reaching her dreams. her words exactly), dance professionally, body build, etc. We have nurses, an ex Buffalo Jills cheerleader, children, people from all walks of life attend our support group just because they want to educate themselves about diet, exercise, clothing, and even learn about sex w/an appliance. There are ostomy reps who attend our meetings to answer questions regarding their products, we have humorist consultants, sex therapists, dietitians, and even medical students and student nurses who attend to learn about who we are & what we do in the community.

Donna, you are a shining example of what an ostomate can accomplish by educating yourself. Knowledge is power. You GO GIRL!!

Welcome to the club!! ~Gutless Wonder Woman
09-29-2011, 10:33 AM   #5
CollegeStudent's Avatar
Join Date: Jun 2011
Location: New York
It's such a relief to hear stories like this. If the inevitable time comes, I'll gladly take it.

Thank you for sharing!
21, Long Island, NY
Been on a lot of meds with only short term success
Have added drastic measures to cope with symptoms.

Suffered from severe narrowing of the ileum and ascending colon in the past years. And unknown left-sided colitis for the last 2 years. Severe Crohn's.

Previous on: Pentasa, Asacol, Colazal, Canasa, Prednisone, Remicade, Azathioprine, 6mp, Entocort, Humira

Current meds: LDN(2.25mg) w/ Beck's Protocol, DMSO

09-29-2011, 10:40 AM   #6
Senior Member
Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Squirt!! Lol, what a brilliant name for a bag. All the very best to you x
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x

Thread Tools

All times are GMT -5. The time now is 04:24 AM.
Copyright 2006-2017 Crohnsforum.com