No improvement help?

[loubybooby19]

I was diagnosed about 6 weeks ago now and even though I have been on my steroids and everything else I just don't see much of an improvement to myself.
I am still bleeding and my BM have been loose and its starting to sting and itch when I pass anything, I have still had stomach cramps non stop and just generally in a foul mood about it all...
I haven't been back to work since it all started as I have been told to let myself heal but there is no improvement and I can not financially afford to be off work any more, I have to go get a fit note from my doctor tomorrow so I can return to work...
Unless they hospitalise me which I highly doubt they will have a reason to, I will have to return to work in a foul mood and feeling terrible as I see no other option... Any help or suggestions offered would be very appreciated.... This disease sucks -_- ale: ale:

 

[edentenley]

Are you on any other medications, or just steroids?

When I was on just steroids, after initially being diagnosed, I still had horrible stomach cramping pains. My doctor prescribed Dicyclomine for the cramping pain and it did help me quite a bit. The best thing ever was being put on Humira. It instantly helped with my abdominal pain and symptoms.

Just wondering if you need more or different meds? I too had to work through the whole process...but I was just very open with my coworkers about how I was feeling that day and that I may be running to the bathroom and that I may be in a terrible mood. Fortunately they were all very supportive.

Hugs!

 

[valleysangel92]

Hello,

I'm sorry you're still having difficulties can I ask what dose of steroids youre currently taking? And what other medications they have you on?

Unfortunately this is still pretty early days with crohns disease, usually steroids are fast acting and will help with the symptoms but they don't always eliminate them. It might be that there's a large amount of inflammation to tackle or that your dose isn't high enough.
A lot of the other medications for crohns take a longer period of time to work, some of them are very mild and don't really help everyone, others just don't suit some people. Crohns is a really individual condition and so the treatment is also a reqlly individual thing which can take a lot of trial and error to get right.

What (if anything) are you on in terms of symptom control? For example, I take a medication called buscopan which is an antispasmodic and helps enormously with my stomach cramps.

As for your work, how long have you actually been off? And how long have you worked there? In the UK, you are entitled to statutory sick pay, you will need a doctors note stating you cannot work, but it will entitle you to a reduced amount of pay for a period of time (I think it's up to 6 months but I'm not sure) .

If this is not available to you or it has run out, you are entitled to apply for employment support allowance. You will need a doctors note for this, but it can be paid into your bank by the government and it isn't just for people who don't have jobs, it's for anyone who is currently unable to work due to ill health.

You can be on it for up to a year before you are required to complete a physical assessment, as long as you keep providing doctors notes.

I hope this is some help to you.

 

[loubybooby19]

Thanks guys,
I am currently on Prednisolone for three more weeks and Lansoprazole to help stop stomach cramps and let me eat, as it used to be at the point I couldn't eat properly cause it hurt too much.

This is the end of my 6th week off work, week one was hospital and diagnosis and the remaining weeks have been told to rest to help get better but it's just not working. I'm feeling boxed in at home as I can't do much other then visit the shop with me being on sick. I receive statuary sick pay but it is a huge reduction from my wage with it only being £80pw.

Work is also stressful at the best of times with my manager not exactly enthusiastic about the time I've had off so I'm feeling very much forced to go back but that and wage loss has made me more stressed and knowing I need to go back to work but also knowing that I really don't feel like there is much improvement going on...

This makes me feel pants

 

[valleysangel92]

Okay, it sounds like you need something else added in. I'm assuming you're lowering your dose of steroids? It could be that you weren't on the higher doses long enough for it to have a good chance to work, this is unfortunately a guessing game and being on steroids for a long period isn't always a good idea either so it's trying to get the best compromise.

There are lots of other options for medications, including a different type of steroid called budesonide which is less aggressive than prednisolone and can be used for a longer time but it only works on certain areas (as it's topical not systemic) .

Your first option might be an anti-inflammatory type medication like pentasa which works by treating the inflammation in the gut. Or you might be offered an immunosuppressant like azathioprine which calms the immune system and therefore reduces the inflammation.

I can completely understand how you feel boxed in, I have now been out of education /work for a total of almost 3 years. This is through crohns and fibromyalgia and just unlucky circumstances. So I really do get that, but going back too soon could actually mean you end up having more time off in the long run.

If you go back when you aren't ready, your body will have less energy to use on healing and the stress could actually cause things to get worse and land you back in hospital. I know this isn't what you want to hear, but if there is any way possible to take just a few more weeks off then that really is what's best right now.

As far as your manager is concerned, they can't do much about it if you've been given medical notes.

If you really can't stay off work then your doctor can give you a fit note which demands 'reasonable adjustments'. This means they can ask for things like reduced hours, a phased return to work, more/ longer breaks and access to a toilet.

Ive recently converted from claiming ESA to JSA because I was sick of not working and wanted to at least try. I ended up with a hospital admission but haven't had to stop looking, I've just had adjustments made to what they expect me to do and they've put in that I can expect certain adaptations from a job before I have to take it. These adjustments include the ones I've just suggested.

If the employer can't make these adjustments then you are entitled to stay off work until they have been made or until you are feeling better.

I know it's frustrating feeling like you don't have any improvement, but unfortunately this condition is difficult to control and it can take time to get the correct treatments worked out. There are no straight forward answers and sometimes it's a case of having to just wait and see what works.

 

[loubybooby19]

Yeah I've been lowering from 40mg a week by 5mg since I left hospital.
I am back at the GP tomorrow so I will see what he says about any different steroids, I know last time he asked he said to wait to see what my specialist says in a few weeks...

Thankfully I have my MRI next week then seeing my specialist two weeks after so I know it's not a long wait but it does feel like one.

I just felt like my GP looked at me like I was trying to get off work and when I see him he just says ok well what do you want, what do you suggest? and I just sit there thinking shouldn't you be the one to give me more of an example. I had a different doctor last time I went and he was more caring and listened better and ordered more blood tests unfortunately I couldn't get him again this time round.

I have been in the process of trying to move shop as it is too stressful where I am and I would like to request reduced hours at a different shop but until I am back at work I can't do anything as my area manager wont talk about it till I return to work, this has been in the pipeline well before my diagnosis. So that makes me feel more urgency to go to work but I know of I push myself I will end up back in hospital...

Still waiting to talk to dieticians too trial error and time, such a loving disease always giving... thankfully I came across the prepayment prescription certificate or I would of been in big trouble!!

 

[valleysangel92]

Yeah generally it's better speaking to your specialist. When you see them, ask if there is an IBD nurse working at your hospital and if there is ask if you can have the contact number, they can be a direct point of contact when having difficulties and can give advice over the phone or liase with consultants.

Any wait feels like a long one when you're feeling unwell, it's hard waiting for answers.

Some of the doctors at my GP practice are exactly the same, they always expect me to know what to do and what I expect, even when I was very newly diagnosed and didn't have a clue. Thankfully you do learn over time and get to know what will or won't help you. If they ask you that this time, say you'd like to know if you should slow your steroid taper as your symptoms are still severe or if there is any way to contact your consultant in the mean time.

With regards to your transfer, if you can get a medical letter stipulating that you need less hours in a less stressful environment then that may work in your favour. If they refuse and you end up needing more time off then they would be in the wrong if they tried to take any action against you as they would not have met the terms of you returning to work

 

[valleysangel92]

Oh as far as diet goes, most people find that a lower fibre diet with things like rice, potatoes, fish, chicken etc help them, it can be a little bland but sometimes it helps to reduce the work the gut has to do.

 

[loubybooby19]

I've got two specialist nurses who never seem to answer the phone or get back to me they are permanently busy which makes life a little more difficult, but there aren't many specialists or dietitians in the area so I let them off just a little, I can imagine the huge work/people load spread between two members of staff. with two weeks till the Gastro specialist I think I can hold on with just my GP for help till then.

I never thought about asking the doctor about reducing work hours and transfers, I was aware he could suggest light duties and such but not such massive adjustments, this will help! I learnt when I get stressed I get a very bad stabby pain in my lower left abdomen, I haven't had this since I left work except when they called me when I was in hospital asking when I was due back, that stressed me to no end, I'm aware I'm management but no one wants to receive a phone call whilst being injected in the stomach -_-

Thank you so much for all the help and answers, I feel a little less lost now its a good feeling to have after so long, I really appreciate it <3

 

[valleysangel92]

Ah right, sounds a little like mine, she's always got 1001 things to do, but when I can get hold of her she is an absolute star so keep trying them. They might not actually be aware of you yet. We don't have many dietitians either, although I actually don't find mine much help anyway ( she usually ignores my crohns and only wants to talk about my coeliac).

It's definitely worth asking them, my advisors at the job centre have said that asking for a less stressful environment is a reasonable request so it might well be something that they can help you with.

Remember that we are all here at any time, there isn't anything that can shock us, we've all been there so please dont hesitate to come talk to us.

 

[loubybooby19]

Oh I do keep trying and I feel for them having so much to do and so little time, I have met one of them and they are so nice

I will speak to the doctor tomorrow when I see him, fingers crossed he can help me sort it

I'm glad there is such a big group of people who are so helpful and not bothered about talking about all the nitty gritty stuff and sometimes the suggestions are better then the doctors haha This forum has been bookmarked on my computer since I left the hospital :')