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02-16-2014, 01:10 PM   #1
gracifer
Senior Member
 
Join Date: Feb 2011
Location: London, United Kingdom
Feeling alone.

I know this probably sounds utterly ridiculous, however, I really need to get it off my chest.
Yesterday I went for my 6 month check up after getting rid of my ileostomy. The consultant was happy with my progress, and wanted to start tests - colonoscopy, mri and faecal matter test, the one where you basically have to scoop the poo from the toilet and put into a test tube, that'll be fun! He then did what they all usually say - becasue I'm so young and because of the nature of the operation it WILL come back and in about a decades time I'll have another op. I know all this, but I just love how they reiterate it.

It just upsets me you know, as crazy as it sounds. Currently I'm in remission, I'm enjoying life for the first time in years, and able to do what I want - currently I'm doing my Masters at Uni. But, it's just another horrible reminder that I have this horrific disease for life. There is no getting rid of it. At some point my health will be taken away from me again and I'll be back to where I was, with all these medications pumped into me, adn even worse another operation. It scares me. It scares me that because I'm so young it will be back. Most of the time I can put it to the back of my mind that it will come back and that I'm lucky enough to enjoy life atm, but today, it just hit me again. I don't want this disease, I wouldn't want to wish this on anyone but at times I wish they knew how it made me feel. SO. UTTERLY. ALONE. I hate how because they had to take part of bowel away my bowels will never be the same again. Today, I feel exactly that, so alone in all of this. I just wish I knew what the future held...

On top of this, I had a huge run in with a course mate of mine this week. We have to do a presentation at the end of this month, and I asked the lecturer who had assigned us to our groups whether I could move because, and I don't want to sound nasty but the people I was assigned too are failing and I don't need the stress of it all resting on my back. Anyway he agreed. What I didn't expect was the group I was reassigned too the 'leader of the pack' - who incidentually thinks she is Queen Bee of the group - telling me I should have asked them first, and that no illness is stress related!! I told her I had Crohn's Disease and although in remission, stress does seem to make it play up slightly, I explained what Crohn's Disease was, and then she had the gaul to turn around to me and say; Oh I know what that's like, I used to have asthma...

I could off hit her.
02-16-2014, 01:24 PM   #2
durwardian
Senior Member
 
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Yes, if we could fix bullying... I wouldn't give that too much thought. For every ignorant bully there are 100's of compassionate and caring people. Society allows selection of who we associate with after school, but the monsters will always be there.
Denial works great for coping in the years to come. Try to set up work and a life that will be sympathetic to extended time off, bed stays, and therapy. It is a way of life, and it doesn't have to be awful.
Get that degree, be a success, and maybe you will be CEO of the company that finds a cure for this?
02-16-2014, 02:36 PM   #3
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
Getting along with difficult people and people you dislike, working with people who fail or don't try is unfortunately all part of what you learn at university - at least on any degree course that doesn't involve working entirely in isolation. I had to work with people where, although I had no major issues with anyone, it was pretty obvious I was carrying the group and doing more than my fair share of the work. Honestly it's not a big deal. Just don't let it get to you. Learning to do things such as allowing other to take some credit for what you've done without stressing over it is a valuable skill.

I don't know what to say about the fear of being ill. I have a progressive neurological disorder and know that I have increasing disability and dependence in my near-future. Crohn's is the least of my medical worries to be honest.
02-16-2014, 02:41 PM   #4
durwardian
Senior Member
 
durwardian's Avatar
Getting along with difficult people and people you dislike, working with people who fail or don't try is unfortunately all part of what you learn at university - at least on any degree course that doesn't involve working entirely in isolation. I had to work with people where, although I had no major issues with anyone, it was pretty obvious I was carrying the group and doing more than my fair share of the work. Honestly it's not a big deal. Just don't let it get to you. Learning to do things such as allowing other to take some credit for what you've done without stressing over it is a valuable skill.

I don't know what to say about the fear of being ill. I have a progressive neurological disorder and know that I have increasing disability and dependence in my near-future. Crohn's is the least of my medical worries to be honest.
My sympathy to you. I was wheelchair for 2 years, thought I had it beat, now headed back again to that life of constant degrading bones and nerves.
It keeps me fighting.
02-16-2014, 02:47 PM   #5
Grumbletum
Senior Member
 
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Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Gracifer, sorry what's happened has you feeling so low. Some doctors can be very blunt and I guess they feel that you have to be aware of the worst case scenario. But I think we have to be optimistic. There are members on here who have had years of remission. Look after yourself and maybe you will be one of the lucky ones. Big hugs.
__________________
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
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