My story dealing with crohn's and where i am now

[cam129]

Hey Everyone,

I am writing to tell you my story and how i am really struggling.

I was diagnosed with Crohn's disease around 4 years ago when I was 19. Over that time I have tried a number of medications, but started with steroids, which did ease symptoms on a high dose but when the dosage was lowered, I had another flair.

So I had to come out of work and I was out of work for around 2 years, While I tried many courses of steroids (12 week course), then tried Azathioprine, that didn't work either. Then I proceeded onto Infliximab (infusion) which I had every 8 weeks, the infliximab worked and I was able to go back to work.

Although treatment began to be less effective and symptoms started to come back around the 6 weeks mark, so in every 8 week period I had around 3-4 weeks of symptoms, which made working very difficult.

My consultant decided to put me on a drug trial, which I started just recently (around 2 weeks ago) The drugs haven't started to work yet, I don't know if they will. I have had to have the past few weeks off work as I feel terrible. Horrible pains, aching all over, no energy, loss of appetite and going toilet around 8-15 times a day (I am also taking prescription Co-Codamol).

Last time when I could not work I did not claim any benefits, I did apply and was asked to come for an interview, but after looking around forums, it seems very difficult to get any help, so I had to struggle and my mam had to struggle.

Also since going back to work, I have had to use at least half of my days holiday on hospital appointments and when I feel to ill, I have had to use my holidays otherwise I would not be paid, which would be at least 10-15 days of the year loss of earnings, at least.

I have been off work for the last few weeks, so by now I have eaten through all of my holidays, plus I don't know when I will be able to go back. If this drug does not work and I resort back to Infliximab, then I still feel terrible for 3-4 weeks every 8 weeks.

I am just so tired now and sometimes just thing what is the point, In a world of pain most of the time, feeling rubbish, don't really get to go out anymore, can't have a holidays as I have to use most of them, probably won't get any help/benefits while being off work.

On top of that I hate my job, I started an apprentice in Engineering, as I didn't know what I wanted to do when I was 16, the collage had trouble finding placements, so they just stuck me in a hell hole, which has no Health and Safety at all, which is hard to believe that the college would put you in a place like that, especially when the majority of the Engineering course wad about Health and Safety. My boss even jokes about if the Health and Safety officer comes to check the place would be shut down on the spot.

I have struggled finding job, within Engineering due to I was already in a placement and not many people was hiring, plus because of the Crohn's, the amount of time I had off work ect..

I did want to go on another course, open university, maybe even work in the Health sector for supporting Crohn's patients, as I do love helping people or IT based/SEO as I love tech, But after I was on the road to recovery (Sort of) with the Infliximab, I was 22, which makes it hard to find any funding.

I am just stuck here in this rubbish place, I feel like a spider trapped in a bath and I just can't seem to clime out. I am just so tired, in pain, feeling rubbish and top it off with a job that I hate. I have also considered a business of my own, something which a could run from home, which would be amazing as I feel rubbish and don't feel like leaving the house most of the time anyway. or maybe even a job which is a lot less labour intensive, in a office, so at least when there is pain I don't have to be moving around all the time, but it requires training, and money.

So once again I am the spider, I have squirmed, tried to climb, tried to get out so many times that I am just on the verge of giving up.

Right now I am taking the study drug and Co-Codamol (30/500) to try and ease the pain.

My symptoms right now are what I mentioned earlier in the story, plus a fever (feeling hot/sweaty and sick), I also feel quite dizzy as well. Just wondering has anyone got any advice on Sepsis, as this fever and dizziness are not that normal for me.

Anyway that's my story,

Cameron

 

[valleysangel92]

Hey cameron, welcome to the forum. So sorry to hear that you've been struggling.

I understand it is difficult having time off work, but by the sounds of it thats the best thing for you. Its a well established fact that crohns and stress are a bad combination, so having to deal with a job like that when you're already so sick cant be helping things.

Have you looked into financing a new business, sometimes there are grants available to help you get established. Also, If your concerned about sick pay, contact the DWP and get a sick note from your doctor, you can also contact the national association for Crohn's and colitis UK (www.crohnsandcolitis.org.uk).

How long do you have to use the trial drug before you can switch back to infliximab? Maybe you need to use a combination of immuno-supressants and biologics to bridge the gap between infusions or you need to ask if theres any possibility of having the infusions more regularly.

When did the dizzy spells and fevers start? have you been able to take your temperature? Iron, potassium and vitamin deficiencies can be causes of dizziness too. Have you had any vomiting?

 

[rollinstone]

sorry to hear your struggling bro, my only advice would be to additionally try supplement with diet if you haven't already, sometimes a combo of a restricted anti-inflammatory diet may give the meds the best chance of working effectively

 

[cam129]

Thanks for the replies

Yes I do want have time off and your right it is probably the best move. I will contact the Crohnsandcolitis.org.uk and ask them about sick pay ect..

I don't know how long I have to try the new drugs before resorting back to Infliximab, they wouldn't tell me, at first it is a 12 week induction trial. That is what I was on, Infliximab and Azathioprine, then they put me on a double dose of Infliximab, which I have been on for around 8 months.

I started feeling a bit dizzy/lightheaded yesterday, I couldn't take my temp, but I felt hot/sweaty. Feeling sick and muscles all over are sore.

It may be that I am deficient and dehydrated.

I don't know if there is any other drugs to try that may work better than Infliximab for me.

I just really don't want surgery, as then that would mean I would be fitted with a bag wouldn't it?

I see you alleysangel92, had surgery, how come? what went wrong? I ask because I noticed that you was only on Steroids and another drug, how come you didn't try Inliximab?

By the way, I am sorry if there are spelling mistake, but I have no energy to double check lol

 

[valleysangel92]

Try to find out how long you have to take them for, as its a new drug they might not know all of the side effects so some of the symptoms you're experiencing could be a side effect. I would get in touch with your GI or the IBD nurse at the hospital and tell them how you've been feeling.

I would also go to the GP and see if they are willing to run some basic blood tests to check your vitamins and inflammation, just to get an idea of how your body is coping.

It may just be a case of fiddling around with dosages and combinations, sometimes its hard to find the perfect combination.

I had surgery and I don't have a bag, generally it depends on what surgery you have and the extent of the damage. Sometimes a bag is only fitted temporarily to let the bowel rest and heal and its then reversed at a later date. For me, the only time a bag was even mentioned was when they were talking me through all the risks, and they said about risk of perforation post op, but my surgeon has never had that happen to him .

I had surgery because it had been left too long before I started treatment really. I had pains in the same place for 4-5 years before I was diagnosed. It was complicated by me already having coeliac, which can cause all the symptoms that I was getting. So my specialist just kept saying I wasn't controlling it well enough .
My GP eventually got fed up and sent another referral to the hospital and I saw a different GI who got me tested and started the steroids. I was on them for a long time, entocort is a steroid too. Only the very highest doses were helping my symptoms at all.. so I got referred to a surgeon just to chat and they decided they wanted to do something sooner rather than later.
I wanted a chance to go back to university and stay there, and the best way to give me that was surgery...My hospital reserves drugs like infliximab for the very worst cases and you have to really fight to get it.

Turns out I had inflammed lymph nodes as well as a stricture and on inspection at the lab, the inflammation wasn't typical for crohns, and they don't seem sure what it is, so its been sent to a hospital in England (I'm in Wales) for a second opinion.