1 Year Diagnosed Crohns Sufferer Feeling completely lost! :(

[Tricks]

Hello everyone!

this is my first time with all of this peeps, so please excuse me if i seem like i haven't a clue...the truth is i haven't. Thought i would start with my Story and experience haven't been dealt this little bombshell just over a year ago.

I have a feeling some of this may be sound like de ja Vu.

Around 2009 when i was 29, i noticed all of a sudden, the cramping, bloating and generally really uncomfortable feeling after every meal, that something wasn't right. As the women in my family including my mom and her sisters have all been told they have IBS, i just thought, well i obviously hadn't escaped it and now it was my turn. Did the usual, went the Doctors, did the food diaries...blah blah blah, had blood tests for all of the usual suspects, Gluten, Wheat, Dairy, Celiac etc...all clear, so was told to go away and do another food diary..cam e back and in 2010 was told i had IBS and to eat high fibre foods, grains etc as you do for that particular type of problem.

I noticed whenever i ate what they had told me to, i was in incredible pain and discomfort, but persevered as we all trust the Doctors Yeah? (Yeah right).

I worked for the Government ironically withing the Sickness benefits Department, but gradually my absences due to my problems with my stomach, got worse and worse, the doctors kept telling me i had stomach bugs and my work became less and less tolerant of this and pretty much accused me of making it up to have time off.

Things got worse and worse until July last year, when the symptoms got worse and worse and going to the toilet became uncontrollable at work and home, Doctors were no help and eventually said i had Gastroenteritis and that it should subside after about 5 days. After 10 days the pain was horrific and although i don't have children...am pretty sure it could be likened to Labour pains. I kept contacting the Doctors, Hopsital & emergency services and kept being dismissed as in their words "Not a Blue Light Scenario", my Fiance contacted them time after time and was also told they were not prepared to help even though i had a temperature of 103 for 7 days!!

Eventually i rang the emergency services and said i could not even walk from my sofa to the front door which was 2 feet away and that i had lost 3 stone in weeks! They then said, right well now you have told us you can't physically walk, we will send paramedics to check you over. They came, took my temperature and got me in a ambulance within minutes!

After weeks of suffering, i was then taken in given all the horrendous biopsies and punctured all over like a darts cushion and after a month was diagnosed with Crohns. I was handed a leaflet, given a huge bag of drugs, told to go home, try all foods and that i would soon know what didn't agree with me and then set up for 8 weekly Infliximab intravenous treatment.

The day i came home, i got a call from work, just to let me know they were referring me to a decision maker for Dismissal, which was nice of them!

I went back to work, fought for my job and my treatment did the trick. That was until may this year, when i could not have treatment as i had a chest infection so they refused to treat me. I haven't had it since, because they didnt give it me it made my Crohns 10 times worse and i ended up off work again and after 10 years Service to the Government, they dismissed me in June this year. This has been devastating for me. I then ended up in hospital again as i couldn't have my treatment, then sent home, rebooked for infliximab...which was refused again in July as they said my inflammation was too high, then refused again a few weeks ago for the same reason. I now have a mouth abscess, which has been treated with antibiotics which has caused Oral Thrush and the other type..i can't eat, can't sleep, we rent a house and because i am so ill and can't work we are about to lose our home very shortly...and get this, because i have actually paid my taxes and national insurance and worked since the age of 16...i don't qualify for any help with housing benefits!! I have nothing, feel extremely isolated and the last few weeks have been just so ill and crying all the time, which is not me at all. I just feel so lost

I am sorry for going on for so long and writing so much, just wondered if anyone else on here has been or is in the same boat. I feel like this is destroying my life!

 

[ronroush7]

I am so sorry for all you have been through. You will find a lot of support here.

 

[Red Rabbit]

Wow you are having a tough time. My personal experience with Crohns and work has presented issues, with some people with absolutely no idea basically telling me I had caused Crohns myself and that it was my fault. I actually changed jobs after that. I think that your employer has treated you despicably and I don't know if you have a case for unfair dismissal.

There are good doctors and bad doctors, good health policies and bad ones. It seems to me that medical decisions are becoming more financially based than what's best for the patient. The plus side is that you got some access to a drug that works for you. If your infection is gone you or your fiancé need to make a real fuss to get the treatment you need.

It took over a decade or so and a medical emergency before I got an operation and then was diagnosed with Crohns. Doctors forget that people know their own bodies and when something is wrong. Unfortunately it's the people who make the most fuss who get sorted out.

You need to reach out to as many people as you can and accept as much help as you can. I have experienced what you are going though to a lesser degree, but the support of my wife and family has been the key for me in getting the medical and financial support that I needed when I was off work for 9 months and very ill.

I am sorry I have no magic answers but am sure that there are many other more experienced and wiser people here who maybe able to help further. Wishing the best of luck

 

[MizzSarah]

I was diagnosed in 2014. My father has Crohn's as well he's going on 30 years. What I can say from my experience and watching my dad's battle is you know your body better then anyone. You need to advocate and educate yourself. Try till you find something that works.you may need to try many interventions. And you need to find a gastro that really listens and looks at you as more then just a patient. I was luckily enough to have my dad's doctor become mine as well and let me tell you how refreshing it is to have someone that is invested in helping you succeed. find that person.

Take any medical intervention seriously as without treatment your condition can worsen. We are all aware of the probability of surgery and for me that is my motivation to find anything that works. Naturopath. Acupuncture. Explore all your options.

Best of luck. As Dory says in finding nemo, "just keep swimming"

 

[valleysangel92]

Hello, welcome to the forum. I'm sorry that you are having so many problems. It's horrible the way the system abandons people in this country.

I'm a little confused about their attitude to your infliximab treatment, the whole point of it is to lower inflammation, so I don't see their logic in saying you can't have it because you have too much inflammation? It is common to halt treatment when someone has an infection as it can make things much worse and cause the infection to spread, but it is usually resumed about 2 weeks after anti-biotics are finished. Is it possible they meant that you have high infection markers rather than inflammation? I would question them as to why high inflammation is a cause to not give the drug.

If they refuse to give the infliximab, you could ask about a short course of steroids to bring the inflammation back under control.

If they keep messing about, I would advise that you ask for a second opinion, as it is really unusual to take someone off medication in this way. The issue is that if they don't restart it soon, you risk not being able to go back on it at all because you can build antibodies to the drug over time. If this happens, I would suggest talking about the use of humira, which is a self inject medication, it works in much the same way as infliximab but with the benefit that you are taught how to self administer and then you do it yourself at home, so you are not reliant on them giving it to you.

As for the money situation, I'm sure you've already thought of this, but you could try claiming ESA, its not perfect and at first would be contribution based, but it could give you a little respite while you are working out what suits you the best.

Also, if you had already been diagnosed with Crohns when your work place dismissed you and they knew about the condition then they may have been in breach of the disability act as chronic illness is covered if it is having a big effect on your ability to do daily tasks.

 

[ronroush7]

Amen