A little intro

[Suedehead]

Well, if I'm going to try and become an active member of this forum, I guess I'd better introduce myself first!

2006
Pretty normal life up until about the age of 15. First ever gastro issues came in the form of morning IBS. We weren't worried about it at the time as we did a little research and found that it was a pretty common occurrence amongst teenagers.

2007-2009
Went to Florida back in 2007 and had my first major painful stomach ache after eating a rather heavy meal. It was a burning pain. Quick trip to the GP when I got home meant being prescribed Lansoprazole as it was assumed I either had an acute stomach ulcer or just "dyspepsia" AKA cop-out diagnosis.

2010-2012
Digestive issues getting a little more unpleasant. By the time I was 18, I was starting to lack in good quality sleep and the stomach pains had started to creep over into all times of day as well as the morning - especially bad straight after work and in the middle of the night. Another trip back to the GP and was referred to upper GI specialist who formally diagnosed IBS. About a year later, I had blood in stools. This was the first time I felt that the NHS started to take me seriously. I was booked in for a colonoscopy and lower GI specialist for early 2014.

2013-2014
Colonoscopy done (wasn't that big of a deal but I can't say it was easy either). Confirmed diagnosis of colitis but still indeterminate as to whether it was UC or Crohn's. Regardless, the treatment was mostly the same so they weren't that bothered about splitting hairs over which type. Started Pentasa. As expected, the Pentasa didn't work...which seems to be the case for most people I speak to. Finally got appointment with colitis specialist and given Prednisolone - this worked wonders. I gained weight and an appetite and I could almost feel the loss of inflammation in my bowels. Of course, I couldn't take these long term so it was time to start Azathioprine. I won't lie - on its own Azathioprine did bugger all. It didn't help that I was in the middle of exams and that my ex and I had broken up. Stress and IBD is an ultimate killer for me. So they decided to combine the Azathioprine WITH Humira. This seemed to help but it didn't take long for the Humira to lose effectiveness. Luckily, I was healthy enough to both pass my degree and begin my PGCE (teaching course). It was a tough couple of years but I got there.

2015
Worked as a supply teacher for a while - mostly because it was flexible, meaning I could take sick days as needed. However, I started to notice some of my old symptoms were returning more regularly. I was running to the bathroom a little more, spending more time in there, and I found I wasn't as hungry as I once was. I tried to ignore it. Tried to put it off. By summer, I started to get pretty sick and in September (just after 24th birthday) I started a new job working in finance. Conveniently, I had the worst flare up of my entire disease after just 2 weeks in the job. Spent 5 days in hospital on fluids, hydrocortisone and started Infliximab as we agreed that Humira had run/was about to run its course. So now I'm waiting on my second loading dose. Hoping that this will work or I think I'm kinda screwed.

I'm fully aware of the fact that I may well need surgery over the next 12 months, even if the Infliximab heals the inflammation - I have scar tissue so no amount of medication can get rid of that. I'm incredibly nervous about the procedure because I don't like the idea of going in for a resection/strictoplasty and then having them change their mind and give me a stoma mid-op (which I've heard is possible). I'm also afraid of how my body will look post-surgery - I have pretty poor physical self-esteem as it is. Finally, there's the money issue. I've been struggling with debt due to my inconsistent working schedule as a supply teacher. I relied too much on borrowed money to see me through the rough patches. Now I'm paying for it by having to work 50 hour weeks in my new finance job in order to keep it all under control. God knows how I'm going to pay my bills while I'm recovering from surgery. I'll try and save up a little but I really can't see myself realistically earning enough to do that. Guess I'll just have to cross that bridge when I come to it as well as hoping that the Infliximab holds off surgery for as long as possible.

Anyway, enough about me. The intro is done now haha. I think that sums up my experience so far. There are obviously a lot more details and specific incidents I could talk about but that would just take forever!

If there are any questions, I'll be happy to answer!I'm sure you probably won't but if you'd like to know a little more then I guess it can't hurt for me to open up a little!

Also, yes. I'm a rambler. Sorry!

 

[Kero]

Many ((((hugs)))). This disease can really suck You mentioned the NHS so I am assuming you are in the UK. Are there any kind of social programs you can apply for to help financially while dealing with surgery and healing time?

 

[Thunderguts]

Hi Suedehead. So sorry to hear you're struggling. I've had the same issues recently, had to close my business and was so worried (still am) about money but health is first and you must focus on that. I'm a little further on the surgery route too, first appointment for first surgery next week (gulp) and like you I've been churning the 'what ifs' over and over but there's such sound advice here I know whatever they throw at me there's support and encouragement. Keep strong. Jo

 

[Suedehead]

Many ((((hugs)))). This disease can really suck You mentioned the NHS so I am assuming you are in the UK. Are there any kind of social programs you can apply for to help financially while dealing with surgery and healing time?

Yep, UK...both a blessing and a curse, depending on how you look at it! I'm sure you're right and that there's probably something out there that could ease the burden of taking time off, but it's just a matter of finding it. It's something I've considered in the past so I'll probably speak to a local Citizens Advice office in due course - perhaps they can point me in the right direction. A lot of funds/grants tend to come from small, private charities that aren't very well known to the general public. Would be nice if there was some sort of database!

Of course, if I can hold out long enough in this new job without being sick (over 6 months), then I might be able to qualify for sick pay which, while not my full salary, would definitely go a long way to covering costs for the month or so I'd have to spend off work. Out of interest, how often do people tend to spend out of work after a significant Crohn's surgery?

 

[Suedehead]

Hi Suedehead. So sorry to hear you're struggling. I've had the same issues recently, had to close my business and was so worried (still am) about money but health is first and you must focus on that. I'm a little further on the surgery route too, first appointment for first surgery next week (gulp) and like you I've been churning the 'what ifs' over and over [emoji52] but there's such sound advice here I know whatever they throw at me there's support and encouragement. Keep strong. Jo [emoji4]

Thank you, Jo. You're a bit of a worrier too, eh? My mum always says I worry too much and beat myself up about about things that I can't control. I think it's difficult for her to appreciate how daunting the idea of a surgery can be though - she's always been pretty healthy.

I guess a lot of my worry stems from being only 24. If I was in my 40s, I think I'd be a lot more open to surgery because appearance seems to matter less as I get older. I know it sounds a little shallow and there's so much more to people than our physical appearance. It just kind of makes me sad that all my friends are in their physical prime while I can barely keep weight on and look like death half the time. I feel like at my age I shouldn't have to be facing something that will alter my body so drastically for the rest of my life. Does that even make sense? I always think to myself about what type of person I'd be if I'd never had Crohn's...socially and mentally I mean. I'd probably be a lot more confident and outgoing. I think I'd have travelled a lot more as well, simply because it wouldn't be so damn inconvenient. There I go again! Worrying about things I can't change

Best of luck with your surgery! Do you know if it'll be a resection or will it be the whole nine yards?

 

[Thunderguts]

You know what Suedehead? The fact that you are here, coping, (OK by coping i mean hanging on to the universe by our fingernails some days) and questioning and reasoning how you are feeling and will feel means you're more mature and compassionate than most 24yr olds I know. I was 17 when I started with symptoms and I've only just been 'officially' labelled this year (my 43rd) and yes, I've compared myself and my life to friends over the years, known I've missed out, but honestly you're Mum is right, and you'll get to a stage where the number of f@@ks you give about the small stuff will be neatly filed into a drawer labelled 'life' and in a twisted way you'll grow. Give me a scarred, battered, mess of a crohnie any day because you are awesome people who have lived to tell the tale
Lol I pat my pre surgery tum now and say 'well youre not going to look the same in a few weeks are you?' but its only packaging. You are special, we all are and it's not the special we wanted but it makes you a fighter and appreciate those good days more. Fingers crossed I will just be having valve and resection but whatever happens will happen, and I'll meet any other things along the way. Can I recommend Inflamed and Untamed blog to you? Sara is a wonderful young woman, I recently discovered her writing and she has wisdom beyond her years, she has great insight on body image and it might help reading her story. Me and my tum are sending love, and we still will post op.