Lost My Funding :O(

Introduction:

Hiya, My name is Michelle and I live in Hertfordshire, England. I am a 42 year old single mum to a wonderful 12 year old :o)

Symptoms:

I was diagnosed with Chronic Ulcerative Colitis in 2004 and I am currently on a slippery path down into a dreaded ‘flare up’.

Lost My Funding:

Over the years I have tried just about every type of medication and have like many others, lived on a diet of steroids and anti inflammatory pills with no help to my UC at all.

A little over two years ago, my consultant decided the time had come to ‘throw some money at me’ (his words) as I was about as low as I could get mentally and physically. He sent me for my first Infliximab infusion and I haven’t looked back since! Its been fabulous for treating the UC with the exception of the fatigue I suffer from which is a constant. At roughly £1600 a time, it is expensive, but it means I can work without problem and I can take my son to all the places he needs to go (playing in three football teams!) without worrying about not having access to a toilet.

Sadly my infliximab ‘maintenance’ funding was cancelled after my last dose in November 2011 and I am now becoming symptomatic again. This is par for the course as I have a stressful job and as a single parent, I am the sole provider for my 12 year old son. I can’t risk the time off work as I had 8 weeks off before christmas following a total hysterectomy (recommended by my Consultant and GP to aid the fatigue) and a double bladder repair (following a mistake by the surgeon during the hysterectomy) and the stress of becoming too sick to work only makes the UC worse. I don’t know what to do now to be honest. I know things are not that bad really, I mean its not like I have cancer or anything, But after two mainly problem free years, the thought of going back to that bloody mess (excuse the pun) and thirty trips to the toilet every day are just a little too much to bear :o(

Colitis Medications:

Sulfasalazine – dreadful joint pain and swelling.
Mesalazine – headaches
Asacol – Headaches
Prednisolone – tablets and foam – weight gain and no long term help
Azathioprine – long term use with Infliximab (remicade) , B12 injections seems to have helped me immensely

written by Michelle

submitted in the Colitis Venting Area

Tags: infliximab

8 Responses to “Lost My Funding :O(”

  1. ElenaFebruary 22, 2012 at 3:29 pm #

    Hi michelle. I am sorry to hear your funding got cut. I have UC myself. dont have much time to write now so i wont go into too much detail. just wonder if you have heard of the specific carbohydrate diet. It has made the miracle for me.I am on it for the last 4 months and off medication for the last three. symtoms free. wanted to share with you. just in case can help you, it has helped many others. hope you will be alright either way

  2. MarieFebruary 22, 2012 at 6:24 pm #

    Hi Michelle,
    I agreed with Elena, the SCD is a wonderfut diet and it is helping me with my UC. I still on Asacol and Imuran, I take them at night and I also use Canasa every night. I hope, I wish one day I can stop at least the Imuran. Will see, but in the mean time the SCD diet is helping a lot…It is very strict diet but it helps..

    Wish you the best! Hope you Keep in touch…

  3. AliceFebruary 22, 2012 at 7:24 pm #

    Man sister, I feel it for you. Freaky. I am in the same boat with an eleven year old. I am self employed and no disability insurance. If I can’t work, I’ll lose everything. Its VERY stressful and the fears bring on more colitis!
    I have mentioned this before on the site but I’ll keep telling everyone. I visited an Ayurvedic doctor who treated me with herbs. Its a teaspoon before each meal and my bleeding stopped in a day or two, I got control back in 2 days and things solidified in 2 weeks. I was finally able to wean off steroids and doing good now. Any tiny flare, or if I eat a bad food.. I just take some herbs and it calms right back down. VERY tiring to get off steroids tho so I can imagine your fatigue. I did a search for you so follow this link and find a doctor. I can tell you the exact mixture that mine gave me when he returns from India and you can ask for the same thing. http://www.apa.uk.com/find/practitioner/4

  4. Braj
    BrajabasiFebruary 22, 2012 at 8:50 pm #

    Hi Michelle,
    This is Braj from India. I too have UC recently diagnosed 4 months back. But i have found a wonder full solution for it. As you said this is a stree related disease.So Yoga is amzing stress buster. I’m tryin following Yoga poses dailly after work for 1 Hr . My morning breakfast will a fruit platter.
    Now i’m having 1 motion per day. I would suggest to consult some yoga teacher and learn these poses. Try as much possible. Meditaion with meditative music is best to end the Yoga session.
    1. Inverted staff pose : Helps in relieving diarrhea , flatulence , abdominal cramping , indigestion. Dwi = two. Pada = the foot. Viparita = reversed or inverted. Danda = Staff.

    2. Bound angle pose : Helps In improving digestion and blood circulation to abdomen & pelvis. Baddha Konasana

    3. Wide-angle seated pose : Helps in improving circulation to abdomen/pelvis , digestion overall. Kurmasana

    4. Half-plough pose : Helps soothe nerves & relax mind & digestive complaints associated with anxiety. Halasana

    5. Bridge pose : Helps with overall digestion , diarrhea & abdominal cramping.

    6. Legs up the wall pose : Helps soothe sympathetic nervous system , relieve anxiety-associated diarrhea , indigestion & nausea.

    7. Hero pose : Helps in relieving stomach acidity, flatulence , abdominal cramping.

    8. Downward facing dog : Helps to calm nervous system , relieve constipation and indigestion.

    9. Headstand : Hhelps relieve spastic colon , stabilize digestive tract.

    10. Shoulderstand : Helps IBS , colitis , chronic constipation , or hemorrhoids.

    I hope this will help.Al the best
    Braj

    • RebekaFebruary 22, 2012 at 10:08 pm #

      Hey Braj,
      I too started yoga after I was diagnosed. Have been doing it for almost three months now and I feel fabulous! I’ve been making really fast progress I think in weaning off of different meds (still weaning) and in getting well and strong again. Yoga is amazing an really truly helps my UC. I know some of the poses really target the belly, but overall I believe it has a lot to do with your mind reconnecting to your body. You know, how during a bad flare we get so disconnected from our own bodies, because we feel like we lose control and don’t understand why our bodies are just giving out on us like that… Yoga helps feeling like a whole person again.
      I can only agree to your recommendation of yoga for UC!

  5. Lara
    LaraFebruary 23, 2012 at 2:21 pm #

    I’m also on Remicade & I think it’s the greatest thing ever! It basically gave me my life back. I am so sorry to hear that you’ve lost your funding. I really feel for you. I found this website that may help you:

    http://www.remistart.com/

  6. scFebruary 23, 2012 at 3:01 pm #

    Hi Michelle,
    I’m so sorry, this is just not fair. Is there any way to appeal to your PCT? My daughter has UC and we lived in London for 7 years. I love and miss it greatly and we had the chance to move back last year but were too afraid of the postcode lottery/NHS dismantling that is going on. From what I understand, access to infliximab is totally random? I hope you can appeal!

  7. MattFebruary 27, 2012 at 3:20 am #

    Hi Michelle.

    I was in a similar boat a while back. I don’t know how close to the county border you live but could you register with a GP in a different county? I did this (Wiltshire) in order to get a different PCT and got my funding approved for another year. Our problem is that the NHS doesn’t recognise Infliximab as a UC treatment (only Chrons & rumitoid arthritis.). Lots of studies going on but until then, it’s kind of a individual case that lives or dies on the strength of your consultants letter. In my case we argued that we’d tried every other type of drug going (which i had) and on both hospitalisations nothing worked. On both these occasions, Infliximab was then used which was almost overnight effective in both occasions. I also have no side effects. Find out what your doctors argument was.

    Also, not that I condone the ambulance chasers, have you sought legal advice about the surgery that left you with bladder problems. Even if it wasn’t incompetence, surely you are owed some compensation forthw additional effect it’s had on your life. Just a thought.

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