Share Facebook


05-26-2016, 07:16 AM   #1
ron261
 
Join Date: Mar 2016
Location: new london, Connecticut
New Here

Hi all, My name is Ron and I have had Crohn's for about 20 years now.
It all started while I was staying with my Dad and one night I was in such pain I could not move. was rush to the Hospital and then to the operation room ( lol ). Woke up the next morning and was told I had Crohn's, ( OK ) what's that ? I asked. I was told and was also informed that part of my small intestine was removed. OK , again ( why ) The Doctor told me all about Crohn's ( Doctor was a specialist ). Was put on Pentasa and work until 2010. I came home from work on a Friday and by Saturday morning ( 12 Hours later ) I was once again in the Hospital for 10 days to get the inflammation down, and then another operation and some more of the small intestine taken out, ( now 3 ft. ) and a little of the large. I have been on Humira , Remicade , and other sorts of Meds that I can't spell ( sorry ). I now have been on Entyvio for 2 years ( infusion every 8 weeks ) I started having real bad cramps and the normal discomfort with Crohn's early this year. Had a colonoscopy 3 weeks ago to see what's was going. Went to my Doctor on 5/25/2016 and was told that from the 2 operations the scar tissue has built up to where the small intestine is closing off, ( should be 1" around and mine is the size of the eraser on a pencil ) , Cool I said to myself , now what ?
Doctor up my Entyvio to every 4 weeks to get the Inflammation down, I forgot to mention that I was told it did not look good in there... Once the Inflammation is down , then I go in for the operation of the small intestine,
And with that said I was told that there is not enough left to put back together........... Now that's my story in a nut shell....
05-26-2016, 08:34 AM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome, Ron. I am sorry for all you have been through. This is a very supportive group.
05-26-2016, 09:23 AM   #3
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
Welcome Ron,I'm sure your story will be of interest to many on the forum.
We all help each other and a lot of people will recognise your diagnosis and surgery.
Best wishes.
05-26-2016, 11:46 AM   #4
ron261
 
Join Date: Mar 2016
Location: new london, Connecticut
Thank you ronroush7 and scottsma , I didn't want to bring up all the other stuff like bloating , cramps, pain, all the meds I have been on, but I am glad I am here to see others like myself , need each other for support. There are so many people that don't understand what we go through every day. They are not sure how to support us .
My ex girlfriend of 3 years did not try, she took the ring and left ( LOL ). I have tried to explain things to her, even gave her websites to look it up. ( never did ) 3 years ago I've been happy cense. ( LOL )
05-26-2016, 11:49 AM   #5
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
You are welcome. I am sorry about your ex-girlfriend.

05-26-2016, 12:20 PM   #6
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
we're also interested in the "other" stuff that comes with crohns.Nothing is taboo on here.it's all normal to us,alas.If your ex couldn't give you support and understanding,then she wasn't the girl for you.You really don't need the stress of an unhappy relationship when you're sick.
05-26-2016, 12:23 PM   #7
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Amen

08-21-2016, 04:45 AM   #8
ron261
 
Join Date: Mar 2016
Location: new london, Connecticut
Up date,
I just had my 3rd operation for removal of the some more of my small and large intestines, Worst time in the Hospital for sure . Anyways this was on July 25th 2016 , had the staples out on the Aug. 16th 2016. This is a slow healing process this time it seams. Also feeling a lot more TIRED and Like shit ( sorry ) but that's how I feel. I believe from what I know is I should have about 1 foot left of small intestines left before I reach the MAX before the Bag. Really getting depress now with the whole Crohn's thing even more now, my taste for food has change also this time around. I don't know why ?
Crohn's Disease has destroyed my life as I knew it to be, I had to stop working almost 2 years ago ( Doctor said so ) The Bills do not go away they just keep adding up. I pay for my own Health coverage, not easy on S.S. Disability and my small pension < Retired early ) but at least I get one. I will be 60 in September ( soon ). The state and government say I do not qualify for any other Benefits. ( go figure ) . Let me say that What I get does not cover what I pay out. It's the extra things that we need that hurts to try to pay for. Anyways I will just keep moving on as long as I can.
Well that's all for now...........
08-21-2016, 05:33 AM   #9
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Up date,
I just had my 3rd operation for removal of the some more of my small and large intestines, Worst time in the Hospital for sure . Anyways this was on July 25th 2016 , had the staples out on the Aug. 16th 2016. This is a slow healing process this time it seams. Also feeling a lot more TIRED and Like shit ( sorry ) but that's how I feel. I believe from what I know is I should have about 1 foot left of small intestines left before I reach the MAX before the Bag. Really getting depress now with the whole Crohn's thing even more now, my taste for food has change also this time around. I don't know why ?
Crohn's Disease has destroyed my life as I knew it to be, I had to stop working almost 2 years ago ( Doctor said so ) The Bills do not go away they just keep adding up. I pay for my own Health coverage, not easy on S.S. Disability and my small pension < Retired early ) but at least I get one. I will be 60 in September ( soon ). The state and government say I do not qualify for any other Benefits. ( go figure ) . Let me say that What I get does not cover what I pay out. It's the extra things that we need that hurts to try to pay for. Anyways I will just keep moving on as long as I can.
Well that's all for now...........
I am sorry

08-21-2016, 07:27 AM   #10
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
All this has taken a lot out of you,and you're bound to be depressed.We're always here for you to have a good old moan at,we even have a VENT thread.
There are others on the forum who are having the same lifestyle problems as you,so hopefully someone will see your posts and hook up with you.I hope you feel better soon.
08-21-2016, 09:20 AM   #11
ron261
 
Join Date: Mar 2016
Location: new london, Connecticut
me too, Maybe I am just having one of those down days that last longer than I want.
Anyways thanks for your response.
Reply

Thread Tools


All times are GMT -5. The time now is 08:35 AM.
Copyright 2006-2017 Crohnsforum.com