My story

[lollypop]

my story

hiya,im new to the forum but after looking for support groups i stumbled upon this site and am pleased to say the least...anyway a little bit about myself:

im 28 years old, i was diognosed with UC when i was 12 years old which in the last 2 years have been told is now Crohns.
I was diognosed with UC when i was young and was given steriods for 3 months to which all settled and was told by doctors this could stay that way untill i reach my twenties and my god was he correct,i hit 25 and all hell broke loose with my insides.

After being given azathioprine,mercaptopurine to which both made me very sick they then decided to admit me into hospital for intravenous seriods for a week and then continuing for a further 3 weeks but nothing seemed to settle and infact i started getting more and more pain.
after weeks and months of this going on and feeling more and more depressed i was taken into hospital and they started me on infleximab to which i started to feel better so i carried on with,after my 4th infusion of infleximab my body decided against it and was right back to where we started!!
after losing alot of weight and being on many more Immunosuppressive drugs ie:Methotrexate (which im still currently taking) they then put on Adalimumab (Humira) injections fortnightly for the first 3 months to which i didnt see any improvement so started having it weekly,after nearly 5 months on it i have just been told to come off it as nothing seems to be helping and infact my crohns has even spread from my right side to now my left,being house bound most the time and making it hard for me to work now, my specialist has told me he has tried nearly every drug avalible to me but my body is just rejecting everything and now have 6 months before surgery is required!!

i have recently seen a diatitian who put me an fluid diet only to let my bowl rest for a few months altho i just couldnt get on with taking them as they made me sick which defeated having them so have been told in janurary i will need to have an op to have a tube inserted into my stomach for the rest i need!!
after being rushed into hospital 2 days before christmas with servere pain thro the night with sickness they sent me home with yet more steriods and pain killers and told me ive come to the end of the line...which is leaving me feeling helpless,sad and angry!!!:-(

hope this all makes sence as you can see so much has happened its hard to tell the whole story without boring everyone.

 

[Grumbletum]

Hello there You are certainly not boring anyone! To listen is what we're here for, so I'm very glad you found us. I'm so sorry that the meds haven't worked for you. Sounds like you have been through the whole gamut and that must have been frustrating to say the least. When are they planning to start you on the tube feeding?

 

[Astra]

Hiya Lollypop
and welcome

You've not bored anyone, you're ill!
Hope you can find some answers here with us, check out our sub forums on surgery, and the stoma section. maybe it's the way forward to get you back to a better health, we have a lot of peeps on here with stomas and success stories. Whatever you decide, know that we're all here to support you.
I'm not sure about the tube, someone will chip in later with answers to that.
Sorry you've exhausted all your meds, good luck and
lotsa luv
Joan xxx

 

[lollypop]

Hello there You are certainly not boring anyone! To listen is what we're here for, so I'm very glad you found us. I'm so sorry that the meds haven't worked for you. Sounds like you have been through the whole gamut and that must have been frustrating to say the least. When are they planning to start you on the tube feeding?

if im honest i cried when stumbling upon this forum as i feel so alone with my illness altho family and friends try to understand they just dont as no one i know has it..:-(
regards tube feeding im seeing my specialist at the end of january,altho my planning to get a second opinion with a guy in london in a week or so who seems to specialize in crohns and UC which im very excited about!!

 

[Grumbletum]

You poor love, I'm not surprised you cried with what you're going through. And IBD is such a misunderstood disease. No matter how hard loved ones try to understand, they're never going to get what it's really like - which is why you've come to the right place Yes, the new specialist sounds very promising.

 

[David]

Hi lollypop and welcome! I am so glad you stumbled across our little community here

As I read your post, my thought was, "Stem cells". Stem cell therapy is an exciting new treatment option when all else has failed. I suggest you start here and begin reading everything you can.

We're here for you.

*hugs*

 

[Angrybird]

Hi again!! Just saw you on Tasha's thread Looks like you have ran through a full gamut of meds and its sucks they haven't worked :thumbdown: I am at the Humira stage and hoping this works for me - I am now refusing to take any meds that mean no kids. Along with looking into stem cell treatment always keep your ear to the ground, I know at my hospital addenbrookes they were doing a trial a year or two ago where they were looking into a med for rheumatoid arthritis which could help with crohns -unfrotunately I can't remember the name of the drug but it gives me hope that new things will become available to us.

 

[lollypop]

Hi again!! Just saw you on Tasha's thread Looks like you have ran through a full gamut of meds and its sucks they haven't worked :thumbdown: I am at the Humira stage and hoping this works for me - I am now refusing to take any meds that mean no kids. Along with looking into stem cell treatment always keep your ear to the ground, I know at my hospital addenbrookes they were doing a trial a year or two ago where they were looking into a med for rheumatoid arthritis which could help with crohns -unfrotunately I can't remember the name of the drug but it gives me hope that new things will become available to us.

i was told while humira i shouldnt get pregnant(altho not that im planning to) so watch out for that if you are planning!!!!
i have posted on someones post about stem cell treatment but not had a reply...what is it??
ahhhh addenbrookes..my mum has been doing alot of research about them as they did a program on channel 4 the other week about a girl with crohns!!!
as you can see my flareup has lasted for 2 yrs now and ive come to the end of the line..myself and my family have decided to get a second opinion from a guy in london on the 12th jan who only deals with crohns and UC and works along side st thomas,if you know it??
fingers crossed he can help me without surgery.

 

[Angrybird]

Ah yes, Food Hospital, it was mentioned here - it only looked at the diet side of things rather than the whole of the disease but to be fair the whole programme is just about the food aspect. I have not heard of this chap, I am under Dr Middleton at Addenbrooke's and think he is brill. I will defintely ask about Humira and kids when I see him on Tues, you will have to let me know how you get on as well.

 

[lollypop]

Ah yes, Food Hospital, it was mentioned here - it only looked at the diet side of things rather than the whole of the disease but to be fair the whole programme is just about the food aspect. I have not heard of this chap, I am under Dr Middleton at Addenbrooke's and think he is brill. I will defintely ask about Humira and kids when I see him on Tues, you will have to let me know how you get on as well.

yeah agreed they were only taking about the food aspect of it..which i just cant seem to handle seeing as i love my food!!!
i would defo recommend asking about humeria and kids as my specialist was very clear that while on either infleximab,humira and methotrexate that i should NOT get pregnant as it would effect my unborn child!!
i will be sure to keep you posted,its really nice and makes me happy to have someone not far from me with the same illness going thro what i am..so thank you!!!

 

[Angrybird]

Your welcome Keep your eyes peeled as there are at least another two Cambridge peeps here on the forum and then other than them you are the closest person to me.

 

[lollypop]

hey everyone,
as ive not been on the forum for the past few months i thought i would pop on and update you all with whats been happening

well....im now off all medcines,not because im better, far from it but since 2010 my body has been full of what seems like every type of toxic drug to which the last drug i took (methotrexate)november 2011, landed me in a&e with a virus/very high blood pressure and on a heart machine.
a few weeks before this happened i was refurred for a second opinion to a guy in st thomas hospital called Dr Anderson who has now taken me under his wing as his patient.
he agreed i came off all drugs for a month or so while he carried out another MRI and colonoscopy,which i have had last week...he briefly spoke to me when i came round out of sedation and explained things are still bad,infact i now have scaring along with lots blood,hes taken biosipes and i await to hear more results!!
since my last post i have now lost more weight and my hair is dramaticly falling out,im now finding it very hard to work as im frecquently having pains and needing the toilet which is causing stress with myself and my boss.
ive contacted crohns helpline for funding if i was to lose my job but i just couldnt live on what they would pay me.
if anyone knows where i can seek help in the uk,that would be appreciated?

 

[David]

I'm sorry to hear you're still struggling so much

*hugs*

 

[lollypop]

I'm sorry to hear you're still struggling so much

*hugs*

I certainly do need them hugs right now!!:-( and I'm still yet to find a support group in my area to talk to like minded people.

 

[Astra]

http://www.nacc.org.uk/downloads/disability/Overview.pdf

here's a good start.
There is so much info in the NACC - Crohn's and Colitis UK
I downloaded this for my boss,
http://www.nacc.org.uk/downloads/factsheets/employers.pdf

And remember you're covered by the DDA -Disability Discrimination Act now known as the Equality Act 2010
Your boss has to adhere to these recommendations or he's breaking Employment Law.
Regarding your job, be a good idea to start with Occupational Health, these will advise reasonable adjustments for you, such as regular toilet breaks and more tolerance towards absences.
good luck and big hugs your way xxx