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Rather a lot about me !

Hello all,

Here is “My IBD Story” including some info on me, an ‘older’ female.

I was diagnosed with Ulcerative Colitis in October 2009. I was very ill for many weeks before and was unwell for a couple of weeks with Swine flu before that in July 2009. I had a very bad tum with the Swine flu so I initially thought I had the remnants of that.
I had also been suffering from eye problems and in some case couldn’t see through the left eye at all and had to wear sunglasses in the office. An eye doctor told me my age and hormones changes were to blame, which was hard to accept being as I had already had a hysterectomy with ooferectomy and now take a set amount of oestrogen a day :rolleyes: I reckon my hormone levels are as balanced as they can ever be!

I was relocating some 90 miles for work and moving for the 2nd time in 8 weeks so I just soldiered on. 3 weeks after I had finally moved into my new home and was looking forward to getting to know my new area and make new friends I was in such a bad way I ended up in hospital.

I didn’t have a GP at the time and was very fortunate to find that my new GP was considerate and empathetic, and still are. Being in a new town, in fact a new county, I felt rather alone and, sadly, my work colleagues displayed more and more resentment when I called to update them on my condition.

While I was waiting on the test, and then on the diagnosis, I was just on Tramadol to help with the pain. Soon after the diagnosis and getting a consultants appt, it was Christmas. I insisted on seeing work’s occupational health in early November as I was very worried about work but they told me to stay away until the New Year.

So, I ended up off work for 4 1/2 months and then had a blasted relapse :( I continued the phased return to work up until April 2010 and have been full time ever since. Once back at work I had an ongoing battle and it was my belief that they were doing everything they could think of at the time to try to make me leave and set up reasons to dismiss me :thumbdown:
I fought but eventually had to let a lot of things slide as the stress wasn’t going to help with the UC. Unfortunately mis-treatment has continued and now become extremely serious but that is probably for a different thread.

For that 1st episode I was put on Prednisolone and I put on 2-3 stone in weight which has caused it’s own issues. The consultant put me on Pentasa but as I experienced a flare up soon after the first remission and then more before my consultant’s appointment in August 2010 I asked to try a different daily medication. The consultant was entirely disinterested, dismissing me with “they’re all Mesalazine just different delivery methods” and didn’t even examine me :thumbdown:

Behaving as a “green light gal” and letting things go at work in order to just get on I coped but often had bad days and found myself frequently in a great deal of discomfort by the time I got home in the evening, so having any personal life has proved difficult. I had already had to curb my main interest/diving obsession, however, being keen on caves and into cave diving, I took up some local caving which I have thoroughly enjoyed :biggrin:

After being given Prednisolone tablets again for the 1st flare up after diagnosis and putting back the 1/2 stone I had worked so hard to lose I was reticent about having steroids in tablet form every time I had a flare up. My GP gave me Predfoam to try and, after the first few days of increased discomfort due to the delivery method, I seem to get along with it okay. I was pleased to be able to take a lower dose of steroids, over a shorter period and pretty much eliminate the undesirable side effects :thumleft:

My next consultant’s appointment was in December 2010 and only a few days before I knew I was experiencing another flare up. By now I had good indicators as, before the really bad symptoms, and amongst some of the other notable signs, my eyes start to become sore again and I get a kind of eczema, mostly on my hands.

So, I didn’t go to the GP as in a couple of days I had the consultant appointment. It was that same guy. I told him I knew a flare up was starting and told him how. He did not examine me and was, once again pretty dismissive revealing that he could not convert centimetres to inches, which may go some way to explaining why he minimised my condition. He gave me 2 weeks of 5mg Prednisolone suppositories and, consequently, I was unwell all over the Christmas break having to cancel many plans :yfrown:

I managed to get into work on January 4th, the first day back, secure a telephone appointment with my doctors and start the Predfoam. Work have continually denied a reasonable adjustment of providing the equipment to allow me to work from home when on a flare up so I went into work when I could to keep on top of things but I fear this, along with the continued harassment from my line management, has prevented me getting fully well and, while I did get relatively stable my employer continued with their efforts to get rid of me on maximum force and causing me to become too ill to go into the office. Since then they have continued haranguing me with inflammatory letters while I am certified not fit to work by my GP :mad2:

That brings me up to date, unfortunately at home pretty bad with the UC but, on the positive side, with the time to investigate and join this forum :)
I have also changed onto Asacol, although I can’t assess whether that has made any difference as I haven’t managed to remain without symptoms since before Christmas but they are a lot easier to swallow :thumright:

I apologise for this being so long but I wanted to give an overview of my situation, treatment and other symptoms in the hope that I can fully join in forum discussions and benefit from all the knowledge here.
I would be interested to know if anyone else get the eye and skin problems and I welcome any experience and advice from others and hope that perhaps, in time, I can offer some useful and constructive input

Thanks for reading my 'essay' :redface:
 

xJillx

Your Story Forum Monitor
Welcome, JetWhite! Jeez, you have had a tough time! And it stinks your employer isn't helping the situation! How recently did you switch to Asacol? It can take some time to kick in. And I hope it does so soon for you - you deserve some relief!
 
Welcome, JetWhite! Jeez, you have had a tough time! And it stinks your employer isn't helping the situation! How recently did you switch to Asacol? It can take some time to kick in. And I hope it does so soon for you - you deserve some relief!
Thanks xJillx :)

Yes the employer situation has become very serious with the trade union involved. I am relieved that they can see it for what it is.

I changed to the Asacol about mid January when I thought I was stabilising, which I probably was but just not enough to fend off the the stress my line management were giving me.

I am hoping that the change will help reduced the number of flare ups as I feel like I haven't really had much remission at all.
I'm not sure if that is usual at the beginning
 

xJillx

Your Story Forum Monitor
I sure do hope that the employer issues work out for you. I can only imagine the stress you must be feeling. And stress+CD is not a good mix!

Hmmm, mid-January. That has been at least 6 weeks, huh? I think that should have been enough time. Have you talked to your doc to say you haven't seen much improvement?

I think it is difficult in the beginning, because you need to try to figure out what works best for you. I was diagnosed this past summer, and I haven't achieved "remission" just yet. Hopefully, we both will soon!
 
I sure do hope that the employer issues work out for you. I can only imagine the stress you must be feeling. And stress+CD is not a good mix!

Hmmm, mid-January. That has been at least 6 weeks, huh? I think that should have been enough time. Have you talked to your doc to say you haven't seen much improvement?

I think it is difficult in the beginning, because you need to try to figure out what works best for you. I was diagnosed this past summer, and I haven't achieved "remission" just yet. Hopefully, we both will soon!
I'm sorry to hear that and I hope you achieve remission soon. It's a bit of a comfort for me as I thought it might be me.

Yes, it would be about 6 weeks-ish but I'm not sure anything will show a great effect while my employers treat me the way they are :(
Unfortunately it is not going to resolve itself and may well go to an employment tribunal.

Here's to remission :smile:
 
Hey Jetwhite, poor you, you've had a tough time hunny :( Let's hope the Asacol works. I've been on Asacol for over 8 years now and although I'm flaring now it is the first time I've had serious problems since taking Asacol. So for me they worked for a long time and hopefully they still will after I get over this blip!

I've had serious problems with my skin. I had an allergic reaction to the anti D jab when I was pregnant with my second baby which caused me to develop chronic urticaria. My bodys auto immune response to the foreign bodies. But ever since then I regularly get hives for which I have to take various anti histamines to control. It's no coincidence that crohns & the urticaria are auto immune problems. Perhaps this could be the case for your eczema? I have dry eye syndrome too but I think that's probably with the anti histamines.

Hope you're feeling a lot better soon :)

Take it easy.

Paula
x
 
Thanks Paula :)

that's comforting news about Asacol. I have never heard of urticaria so I'll have to look that up.

I don't take any antihistamines and usually find Dermovat helps the exzema/rash. It is strange how they relate to IBD but it is sort of handy as a warning sign. Do you find your eyes actually get sticky and hard to open?
 
Hey Jet

Yeah my eyes do get a bit stickyin the mornings, I use artifical tears, they're great and are cheap enough to buy from any chemists. My kids both have eczema and I get a product of the net which is brilliant and has reduced their need for me to apply steroidal creams. Its called Pure Potions and was developed by a Mum who was destressed by the amount of steroid creams she was putting on her daughter. Do a search for it if you fancy giving it a go. It's the one in a glass tub, it's not cheap but it's great stuff. Having said that, if the Dermovat works then it might be best sticking to that.

Paula
x
 
Thanks Paula,

I have tried non-branded Hypermellose eye drops but when it's bad they just sting. I do use viscutears at night, which helps, but the left one still often feels like it's cemented closed !

I'll have a look at the Pure Potions, thanks :)

Jet x
 

AndiGirl

Your Story Forum Monitor
Welcome JetWhite! I'm sorry that you've been having such a rough time. I'm not too familiar with Ulcerative Colitis, but I understand that in some respects it's similar to Crohn's Disease. We are glad that you have decided to join us here. Please make yourself at home and participate in those threads that you find interesting. Hugs, and well wishes!
 
Thanks Andi :)

Yes, Ulcerative Colitis is, as I understand it, the other IBD but is limited to the colon only. I consider myself fortunate in that regard and sympathise with those who have CD as it seems much worse to me.

I am very glad to have found you, and had the courage to post, as last night I suddenly felt so much better about things.
I didn't realise how alone I had been feeling. My friends are marvellous and have been great but it does really help to exchange with others who have similar experiences, especially with the oddities like the eyes, skin rashes and, of course, the steroid side effects. No-one pays much attention to them but they add to the whole 'encumberance'.

It is also good to be reminded that other people get on when I'm feeling sorry for myself :ybatty:
 

Astra

Moderator
Hiya Jet
and welcome fellow Brit

So sorry, your troubles are big enough without the employers giving you grief too!
I'm the Unison steward at my workplace, I'm very millitant too! I hope your Union kicks some arse! And I hope they go to an Employment Tribunal and you win pots of dosh!
And they put you on a risk assessment with reasonable adjustments in line with the DDA!
Anyhoo, so glad you're here with us, we'll look after you!
Lotsa luv
Joan xxx
 
Thanks Joan,

that's really reassuring :)

My first TU rep, when I was in quite a state after going back to work and trying to deal with the nonsense, wasn't very good. She seemed to just cave to management and, despite what she said when she met with me, kept very quiet about their behaviour in meetings.

I didn't know any better really and wasn't it a very good place to fight by myself. I now have a great TU rep who can see exactly what is going on and knows what to do so that is helping immensely. I have only had him to look to a few weeks but it has made all the difference :thumleft:

I had to fight like mad just to get a desk nearer to the exit, and ladies, with them firstly only offering a temporary move to the desk of a lady on maternity leave. Even then they kept asking me when I would move back ( my desk being the opposite end from the doors in a massive open plan office)
They are now trying to make out that they are wonderful for providing me with 2 desk moves :rolleyes:

Is there a particular sub-forum on here for discussing things like that, DDA, rights at work etc. ?
 

Astra

Moderator
Hiya Jet

No not really, but it has come up with a few of us Brits, if you type in a certain word in the search button, you might find the threads.
I'm lucky we've got Occupational Health in our workplace (school) and have been so beneficial. I was off last year for 6 months and my line manager sent me to Occy Hlth for an assessment. I was a bit miffed (understatement of the year!)
But it turned out to be the best thing that's ever happened! They made the 'reasonable adjustments' and recommendations and risk assess. The best one is....
'If Joan looks tired, send her home' ha ha ha. CLASS!
Great that you've got a decent TU rep, some of them couldn't knock the skin off a rice pudding!
You hold your ground Jet, don't let any of them bully you! You're protected with the DDA! Doesn't matter what's up with you!
good luck
xxx
 
Hiya Jet

No not really, but it has come up with a few of us Brits, if you type in a certain word in the search button, you might find the threads.
I'm lucky we've got Occupational Health in our workplace (school) and have been so beneficial. I was off last year for 6 months and my line manager sent me to Occy Hlth for an assessment. I was a bit miffed (understatement of the year!)
But it turned out to be the best thing that's ever happened! They made the 'reasonable adjustments' and recommendations and risk assess. The best one is....
'If Joan looks tired, send her home' ha ha ha. CLASS!
Great that you've got a decent TU rep, some of them couldn't knock the skin off a rice pudding!
You hold your ground Jet, don't let any of them bully you! You're protected with the DDA! Doesn't matter what's up with you!
good luck
xxx
Thanks Joan that really is good to hear :thumright:
They have repeatedly denied providing the necessary security link to allow me to work from home when it's bad and then complain about sickness absence !

If there is an appropriate place to discuss it I may start a thread in the hope that my experience might help some others.
I have been so scared of having to fight as the stress is not good for the UC but letting them bully me isn't either. It seems that however hard I try to do my best and just get on they treat me worse and worse, presumably in the hope I will just give up and resign.
I haven't so now they are trying to find ways to dismiss me and I have no choice but to fight. Management have been told by OH about the effects of unnecessary stress on IBD so they recently did something that was so extreme, breaking all procedures and rules so as to achieve maximum impact and, consequently, stress that they made me incredibly ill. Then as soon as I was off sick said they can't employ me due to sickness absence.

and breathe ............. ;)
A hot drink is needed I think :)
 
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ameslouise

Moderator
Hi Jet - Just wanted to pop in to say hello and welcome! You have had a time of it, and your employers being jerks to boot! I hope you get things worked out - it seems like you have a much stronger system over there for dealing with crohnic disease and work issues than we do over here in the states.

I was UC before I was eventually dx with Crohns. I did very well on sulfa drugs and cortisone enemas for flares for many years.

I hope you start to find some relief very soon! Have a poke around the forum. Your experience with UC will be very helpful for others with the same dx.

- Amy
 

AndiGirl

Your Story Forum Monitor
Jet, we all feel sorry for ourselves from time to time. IBD is not an easy thing for anyone. Please don't be hard on yourself.
 
It sounds like you've had it really rough at work! I'm 19 at the moment and when I get a full time job after uni this is one of the things I will be worried out, having flare ups and how the employer would react to it. Luckily though I'm very well controlled on azathioprine.
also, about the steroids. I'm on them at the moment, and like you i was saying "never again" but at the end of the day, it's being seriously ill or healthy with a few extra pounds. When I'm healthy I think no I dont want steroids but then when I'm ill I just want to be better. I'm on them at the moment and I'm controlling my eating and exercising to make sure I don't put on lots of weight.

I hope things get better at work and you should pursue unfair treatment or something! Hope you're well
xxxxxxxxxxxxxx
 
Thanks Andi and Vicky :hug:

It's strange, I looked back on all the documents I had when I started my current job and came across a form for declaring any disability. I'm don't think I'd ever been given one to complete on employment before and it's not something I had really thought about.

I think you may need to make sure that you get such a form on your employment Vicky and make sure the prospective company is prepared to do right by you.

I was under the impression that, now I had UC, I would have to declare it on interview but it may be something you declare after offer to guard against discrimination. Something worth checking I think and I'll let you know what I find out :)
 
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