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Thoroughly fed up.

valleysangel92

Moderator
Staff member
Hi guys.

Feeling utterly fed up tonight. Many of us crohnies in the UK are still reeling from the travesty that is the British media. I have a very supportive family and boyfriend and after I made a blog post with a response and a picture of me showing my surgery scars an old friend told me how proud he was of me which was very nice to hear. At the end of it all though, I feel pretty isolated still.

I've been getting more and more symptoms lately, the old familiar pain is back and earlier I had to Sprint to the bathroom to avoid an accident. I do try to talk to my family about it but it's hard. I know that my mum worries a lot about me, and it makes her feel bad that she has to go to work and I'm left alone in the house every day and I hate that. I know she's my mum and she loves me and wants to help, but I hate seeing how it upsets her and my dad. My boyfriend does his best, but half the time he just doesn't know what to say, and I don't blame him, it must be difficult trying to respond to someone who's constantly in pain.

I'm currently dealing with weight loss and even when I'm not in pain I'm struggling to eat because I have orthodontic braces in which are making my mouth very sore. So the old stares and whispers are back. Tonight my stomach feels like its tearing itself to shreds and I can't take any of my decent pain killers because of my fibromyalgia meds.

I've recently been taken off sick pay and allowed to start applying for jobs, but that was before this new flare had really started, and now I'm worried that it'll affect my health assessment for university. If I fail this one it will be the third year in a row that I've missed going because of crohns, the first year I had to leave after just 2 1/2 months and the second I failed the health assessment. I don't know what I would do if I failed again.

I know that there are people worse off than me, but I can't remember a day since I was 12 where I've not felt ill or had some new diagnosis to get used to. It feels like every time I get used to one thing another comes out of the blue to knock me back down.

Sorry for the negativity, just needed to get it off my chest.
 

DJW

Forum Monitor
Hey valleysangel. Sending you my support. I really hope school works out for you this year. You have so much to offer.
 
I'm so sorry. It's a really painful time to have IBD because these fad dieters send a really insidious message about how serious our illness is. It invites comparison to mild food allergy in the public mind and implies we made ourselves sick. It's really subtly poisonous to generating positive awareness and makes people with CD feel insanely guilty because it's like "The Secret" of IBD except with more blood and mucous and bathroom accidents. Once it passes our lives will get easier I think.
 

valleysangel92

Moderator
Staff member
Thanks DJW

Orchid- I couldn't agree more with that, people see us pushing food around or not eating with everyone else and assume we must be on one of those diets. I don't know if you've heard, but in the last couple of days there have been reports in the media in the UK saying that junk food causes IBD and some reports apparently go as far as saying we bring it on ourselves. A lot of us have joined together to take over social media and correct misleading posts.

I think it's really sad that we are made to feel guilty because of a condition that none of us asked for and to a certain extent can't control. We need to break through the stigma of it being a 'bathroom disease' and allow conversations about the disease and it's symptoms to happen more freely.

I'm thankful that the course I am hopefully going to be starting will be a nursing course and all the lecturers will be qualified nurses. They all have a good understanding of crohns so I won't have to worry about misinformation causing them to think I'm responsible. As for the other students, if they are swayed that easily by the media then I'm not interested in their opinions of me anyway. I just really hope I get well enough to get through my medical assessment and start living again.
 

dave13

Forum Monitor
Location
Maine
No need to apologize for venting.CD sucks enough without misleading and wrong information from the press.Sending you good thoughts on passing your next test.Third time's a charm.Don't let the bastards get you down.
 
You are in the hospital?! I am really sorry, Valleysangel- and here things were finally looking up for you! Hang in there...my fingers are crossed that you will still be able to start University. Feeling isolated is not fun, and being alone all day has got to be awful for you. I am sending healing thoughts and hugs, and am also wondering what they are giving you for your fibromyalgia.
 

valleysangel92

Moderator
Staff member
Thanks guys

Fozheart - yes, I was sent here Friday night, allowed home with steroids and pain meds so I could have a decent meal and told I had to come back the next day and be admitted if I got any worse, so I came back Saturday and got admitted.

Hopefully I'll be seeing my original surgeon today if the weekend consultant has contacted him, which would be nice as he has his head screwed on the right way around. I'm being given amitriptyline for the fibromyalgia, which so far seems to be working well, I'm sleeping much better (well I was until the past couple of nights) and my joint pain is far controllable. I've been told while I'm here that I can still take cocodamol or tramadol with it if I need to as well, which I hadn't known before hand.
 
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