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#515931 09/28/16 05:55 PM
Joined: Feb 2011
Posts: 45
J
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J
Joined: Feb 2011
Posts: 45
Hi All,

I've spoke about this before but I'll let you all know where I'm upto now.

About 6 months ago I had a major flare up, the worst I've probably had. I was off work sick for 1 month and returned for 2 weeks taking way too much tramadol and felt like a zombie. Needless to say I went off sick again for about 4 months, during this time I split up with my girlfriend of 7 years which hasn't helped my mood. During this second period of sickness I have been put on inflixamab infusions which have really helped with pain. I've been back at work for about 4 weeks now and in really not feeling it.

I'm going to my go tomorrow to tell him how I feel. I'm not in a great deal of pain but I'm definitely not pain free. I think I have developed IBS also, not sure if this is a side effect of the inflixamab. I've been waking up every morning with terrible stomach cramps and loose stools. Even to the point where I break wind, and little comes out. I'm very self conscious over this, particularly at work as I don't have the ability to clean myself and at the moment I use old rags and shower after taking a number 2.

A couple of days ago I woke up as usual stiff (not in that way haha) and with stomach pains and the urge to go the toilet asap. It was 8am and I was shattered, I mean like super tired, I felt sick, my stomach ached and I had diarrhoea I was rushing trying to get a shower, then have my breakfast, and get to work for 9:15 for a meeting. I was on the toilet and about to get up and rush around to get ready. Suddenly I just thought, what am I doing? I'm genuinely sick and I'm making myself worse. I sent a text message to my boss who is really understanding and explained I would be in, in the afternoon as I did not feel well.

Since then which was Tuesday, I've been thinking so much differently. I've been trying to find an exit strategy as the job is making me genuinely unhappy and as it is office based I come home with a stiff neck etc. I have a specialist chair etc. But it doesn't make a lot of difference. I literally feel lost in life, I don't know where I am heading. I have decided I want to leave my job and try and get myself as fit and healthy as possible. I think if I looked after my health more and put myself first then I will be happier.

People in my family really try to discourage me from doing this, saying things like, that's a great job don't give it up. You only work part time just stick stir etc.

I feel like I am letting people down by leaving, but it is what I know is right for myself. I want to take a stand and fight back against AS. Or as this website says kickas's [*bleep*].

Some things that are worrying me is can I resign on health grounds and still get benefits in the uk. I have worked for the last 5 years and I'd love to work again in the future but at this moment in time I'm just dragging myself to work and I feel like a robot. I'm not right both physically and mentally and I feel that I need to find myself again and then maybe in a years time get back to work if my health improves. People have said things to me like, how will you cope financially, but I'd rather have no money and good health. As long as I can afford food that is all I need.

Thanks guys

joseph9a #515933 09/29/16 07:32 AM
Joined: Sep 2007
Posts: 608
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Master_Sergeant_AS_Kicker
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Joined: Sep 2007
Posts: 608
Hi Joseph,
Perhaps you've answered this before, but anyway, have you tried or had any benefit from the NSD.
Gut symptoms are the driver of the spondyloarthropathies and for anyone with obvious overt gut issues like you, well, you are definitely a candidate to benefit from a low carb/sugar diet.
The slightest starch / sugar slip up for me triggers very loose bowels and painful cramping - in 6 hours, sometimes less.

I've been on the diet for 10 years now, and whilst greatly improved, I have not gotten anymore able to tolerate starch, infact less tolerant, so diarrhoea is more pronounced than ever if I make the slightest slip up.

Hang in there.
Regards David


Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.
joseph9a #515938 09/29/16 09:49 PM
Joined: Sep 2001
Posts: 6,151
Likes: 3
AS Czar
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Joined: Sep 2001
Posts: 6,151
Likes: 3
Hello, joseph9a:

I know many of us have been right where You are now. AS wiped out one marriage, 3 girlfriends, and a pile of cash that is embarrassing to even think about!

For many reasons--number one was eyesight--I had to get help figuring this thing out and do what worked for me. I happened upon the right formula and never looked back, now totally AS free after 16+ years fighting the battle the correct way. Since 1983 or so a book was ..sitting.. on my shelf. Today, I KICK MYSELF for not paying more attention: "A Doctor's Proven New Home Cure for Arthritis," by Giraud Campbell, D.O.

We have been KickAS for most of that time and had the right formula for the entire time we have been in business, so if You need help or have questions, please do not hesitate to ask.

HEALTH (all else shall follow),
John

joseph9a #515939 09/29/16 09:51 PM
Joined: Oct 2003
Posts: 470
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Warrior_AS_Kicker
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Joined: Oct 2003
Posts: 470
Joseph,
There's nothing wrong with the way that your feeling about your current job at the moment, I've been there too, on several occasions. I have also been discriminated against by employers in the past too, due to my A.S.
Now you seem resigned to leaving your job, why not look to go part time with your current job, whilst looking for a new one. It's always easier to look for a job, whilst in one. Neither is it nice not to be working, as your A.S will be still present whilst at home & not at work. Although it may be slightly easier for you to manage in the short term.
I have mainly worked whilst having A.S, had some time off in the past due to it. I have now found a job I like. Still struggle to go in everyday, like yourself. Due to my A.S, IBS, S.J & now photophobia within my right eye, due to an iritis flare I had around 8 years ago now.
However as a man I'd find it extremely demoralising not to work now. If I get to this stage, I'd have to deal with it, as we do.
I can also understand that you may want to leave your job with some pride, not string it out on the sick. Which I have done with two previous jobs. Left, rather than go on the sick. Due to the nature of the work.
If your current employer is at all understanding, I'd go in & have a chat about your future. See if any modifications could be made. That's what they're there for. Neither should you ever feel ashamed to ask for help. I fight with my A.S on a daily basis too. Yet somehow we keep going.
I'm not an expert on U.K benefits, although I think you'd have to go the sick through the employment route to claim any, rather than just leave.
I'm also on my third anti tnf treatment. Also tried eradication diets in the past, which for me didn't work.
Best wishes.

Last edited by Boroboy; 09/29/16 09:52 PM.
joseph9a #515942 09/30/16 08:59 PM
Joined: Jan 2010
Posts: 2,105
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Major_AS_Kicker
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Joined: Jan 2010
Posts: 2,105
I can empathise with you. I'm struggling to keep up working (only part time) and feeling like I am ready to give up work too. I think its well worthwhile making an appointment with the disability advisor at CAB to get advice on disability benefits, resigning on medical grounds and how to go about making the transition out of work.

As far as your health goes, I'd be pushing to get that bowel stuff investigated more thoroughly. If it does turn out to be an inflammatory bowel disease, then changing your treatment may relieve it considerably.

joseph9a #515947 10/02/16 11:14 PM
Joined: Apr 2002
Posts: 12,465
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mig Offline
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Joined: Apr 2002
Posts: 12,465
Hi Joseph,

It does sound very concerning that you seem to have developed IBS issues after starting infliximab treatments. I second the recommendation that you should go back to your Rheumatologist right away, let them know what is going on, and have this investigated.

Infliximab lowers our immune system - your serious symptoms might be caused by an infection that requires antibiotic treatment right away, or might represent new onset IBD. Either way, I'd strongly urge you to seek the advice of your doctor about this.

If it was me, I might hold off on making a major decision about leaving your job until after you visit your doctor. Maybe that is still the right course for you but it might be an easier decision to make after you find out what is really going on.

Wishing you the best!


mig
joseph9a #515972 10/07/16 04:07 AM
Joined: Mar 2016
Posts: 37
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Posts: 37
Completely relate to your circumstances. I just sold my business as i hadn't been able to work in it properly for 2 years. I'm freelancing from home, so i can try work in the windows of time when i feel alright. Generally it has been really good although now the Infliximab doesn't seem to be stopping the arthritis. I'm standing on one foot typing this with my forehead leaning on a bookshelf, i feel stupid and confused, lonely and disillusioned. I'm tired of waiting to get better at the same time i refuse to be a victim.


1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA)
Taking - Humira, MTX, Triphala, ReMag, Transdermal Magnesium, Lactoferrin, Peppermint oil.
Diet - No Sugar/Dairy/Starch/Alcohol

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