Community Forums

Ontario Canada Newbie  

  RSS

littleurk
(@littleurk)
Registered
Joined: 2 months ago
Posts: 4
July 26, 2019 6:49 pm  

Hi All !  I’m glad I’ve found this site.  Thanks Eric !  I suffered for years (approx 11) with specialists telling me nothing was wrong.  My GP suspected that I had some form of IBD.  I almost died in 2012 from Ulcerative Colitis.  Spent 4 weeks in a hospital here in London, ON.  For 4yrs I tried biologics.  All of them.  Plus Prednizone and Methotrexate.  It got to the point in 2016 that I was so very ill from all the inflammation in my body, side effects from all the meds and my UC.  They discovered I had 2 areas of scar tissue that put me at a high risk of bowel obstruction, bowel perforation and liver cancer.  I was already a high risk for colon cancer from all the scarring from the 2012 discovery.  In April 2017 I had a proctocolectomy with end ileostomy.  A few complications during surgery which ended up being an 8hr surgery.  I was counting on this surgery giving me my life back. So far, in 2019 that hasn’t happened.  I had complications while recovering from the surgery with 2 abscesses that formed in my pelvic floor.  1 of them was 4” in diameter.  I ended up with a drain tube inserted through my right buttock for 8 weeks.  I also suffer from Chronic pain from my different forms of Arthritis plus my tailbone is eroding.  All of this because of years of medical neglect.  I got really sick at the beginning of June and have lost a ton (more) weight cuz I’m not able to keep much food down.  Now my GI thinks I may have Crohns.  Which they kinda warned me about after my surgery.  I just didn’t want to accept the thought.  At least with the endoscopy and scope that I had last week everything looked good.  I’m waiting for more tests.  I’m scared and I’m continuously battling depression, even being on anti-depressants.  I try to stay focused on the fact that at least now I have excellent specialists who BELIEVE me when I tell them something is wrong.  Reading about fellow Ostomates experiences help me to realize that I’m not alone.


LK liked
Quote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2373
July 26, 2019 10:22 pm  

Welcome to the forums, littleurk. 

You've gone through a lot and I hope that the light at the end of that tunnel is getting close. 

It is a terrible feeling to not be believed but I hope that after your upcoming tests, you won't have to do much convincing. Many of us have been there, you certainly arent alone. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


LK and littleurk liked
ReplyQuote
LLNorth
(@llholiday)
Registered
Joined: 8 months ago
Posts: 63
July 27, 2019 12:27 am  

Hi littleurk, Goodness, what a trip you have been on. There’s a brighter day there for you - wishing you answers to all these concerns, and good health. LLNorth

I love the smell of coffee in the morning. It smells like .... victory.


littleurk liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1332
July 27, 2019 4:59 am  

Hi Littleurk, Not being believed is far too common. And makes an already bad situation much worse. Welcome and best wishes for moving forward 

ileostomy 31st August 1994 for Crohns


ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 1 year ago
Posts: 276
July 29, 2019 10:02 am  

Hi Littleurk,

I am so sorry to hear about what you've been through. I am glad that now there is someone who believes what you are telling them. May God help you through your issues, and may you receive the necessary help to get you to better health.

Stella


LK and littleurk liked
ReplyQuote
littleurk
(@littleurk)
Registered
Joined: 2 months ago
Posts: 4
July 29, 2019 10:57 am  

Thank you all for your words of support.  


LK, john68 and VeganOstomy liked
ReplyQuote
IleosTony
(@ileostony)
Registered
Joined: 5 months ago
Posts: 104
July 29, 2019 1:41 pm  

Hi @littleurk,

 

You've found a real haven here with some of the finest folks I've ever had the priviledge of interacting with. We are here for you.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


LK, littleurk, SqueakyandLiza and 1 people liked
ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 687
July 29, 2019 6:43 pm  

Welcome Littleurk,

You have really be through a horrible medical experience and are still coping with both the aftermath of years of illness and the fear that it will be ongoing. You really do now have a good chance to recover your health. After your surgery you no longer have that huge inflammatory load to deal with that is the result of severe UC. Far to many of us have gone through years of treatment, different doctors with different ideas, declining health and just the uncertainty of living with this. You have come a long way! You should be proud of what you have gone through.

Keep doing everything you can to regain your physical health and regain a positive mental outlook. This is tough, but you are are the right track. Keep asking questions and sharing your experiences. Glad to have you.

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


LK and littleurk liked
ReplyQuote
littleurk
(@littleurk)
Registered
Joined: 2 months ago
Posts: 4
July 29, 2019 6:55 pm  

@dona

Thank you for your kind words.


LK and john68 liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 560
August 6, 2019 10:04 pm  

Hello littleurk, and welcome.  A lot of damage is done when a doctor does not believe you about something so serious, it throws all professionalism out the window.  I experienced some of that failure and I am so sorry you had to go thru that.  I acquired my ileostomy about 10 years ago and appreciate it immensely.  At your finger tips is a whole lot of great Information, encouragement and answered questions. Considering what you have been thru, it is normal to deal with depresion in some form or another.  Try not to be too hard on yourself. One day, sometimes one min. at a time, worked well for me. All the best. Be well.

Linda


ReplyQuote
Share:

Please Login or Register