Bad days

[kittyp]

Hi everyone,

I'm struggling so much this week I've been really unwell since the start of August, feel like I can't even call it flaring as I'm still not fully diagnosed. I'm on budenoside 6mg a day at the moment and my GI wants to keep me on that dose rather than reduce as I still have so many symptoms.

I had a good week a few weeks ago and I managed to go out three times that week but it just feels like it's all unravelling back to how it was at the start [emoji22]

I've been on Modulen (exclusive enteral nutrition) for 8 weeks and started reintroducing food last week but my pain is so much worse and now I find I just don't want to eat and have even started limiting my Modulen drinks and water as I noticed that I go to the toilet less then (it wasn't like that at the start I would go so many times even with nothing going in). I know this isn't good and I know I need to eat and drink so I'm making myself again.

I just can't keep going on like this forever. I feel like I need an answer and I need to know I'll be well again. I can't just stay off work sick forever (and don't want to) and I want to be able to care for my family again.

Sorry for ranting I just can't cope this week and I feel like I can't just keep moaning on to my family and friends and they must be sick of it by now.

Any helpful hints on how you keep yourself going when you feel awful would be really welcome.

My main issues are diarrhoea, pain, no appetite so no desire to eat and absolute exhaustion. Plus my mouth really hurts this week too.

Kitty x

 

[ronroush7]

Hi, Kitty. Know that everyone on this forum is for you. I hope you feel better soon.

 

[CeeCeeGo]

Hi Kittyp
I feel for you hun. You are entitled to vent especially with what's been happening recently.
When was the last time you had contact with your GI doctor? If not in the last couple of weeks, it maybe time to contact them again and update them.
Do you have an IBD nurse at your hospital? I have found mine to be very supportive and have been able to call them for advice as and when it is needed.
The other thing to think about is that this condition can really affect you. My GI doctor referred me to Health Psychology who were really helpful in helping me to process what was happening to me. About 6 months after my emergency op, I would not leave my house in case something happened. By talking this through with Health Psychology over a few weeks, I managed to get back to 'normal'.
In my experience in the UK there is a lot of support - sometimes you have to search it out and sometimes you have to ask for help.
Please don't think I am trying to tell you what to do. Just sharing with you some of what has helped me during the last few years come to terms with living with this condition.
Take care and lots of hugs.
Carol

 

[kittyp]

Hi Kittyp
I feel for you hun. You are entitled to vent especially with what's been happening recently.
When was the last time you had contact with your GI doctor? If not in the last couple of weeks, it maybe time to contact them again and update them.
Do you have an IBD nurse at your hospital? I have found mine to be very supportive and have been able to call them for advice as and when it is needed.
The other thing to think about is that this condition can really affect you. My GI doctor referred me to Health Psychology who were really helpful in helping me to process what was happening to me. About 6 months after my emergency op, I would not leave my house in case something happened. By talking this through with Health Psychology over a few weeks, I managed to get back to 'normal'.
In my experience in the UK there is a lot of support - sometimes you have to search it out and sometimes you have to ask for help.
Please don't think I am trying to tell you what to do. Just sharing with you some of what has helped me during the last few years come to terms with living with this condition.
Take care and lots of hugs.
Carol

Thanks so much for the support Ron and Carol.
You definitely don't need to worry about telling me what to do, I'm so grateful for any ideas that might help me feel better. It's so hard right now.

I saw my consultant last night and have some more bloods and another faecal calprotectin test to do tomorrow too. It's so hard as I feel like I can reach out to local Crohn's groups as I'm not yet diagnosed and it leaves me stuck not knowing where to go for help.

There are IBD nurses at my hospital but I've still not managed to get hold of them, I'll give them another call tomorrow and see if I can get some support there. Just feel a bit of a fraud as I still don't know if it's idb or not at the moment.

Hope you are doing ok xx

 

[CeeCeeGo]

Hi Kittyp
Even though you don't have a definitive diagnosis, I am sure your local Crohns groups would still offer support as would the IBD nurses (if you can get hold of them!). Whatever you have sounds serious and you need some help to get you feeling better.
In my darkest times, I just tried to keep going, step by step and day by day and things do get better.
There is always someone on here that will listen.
Hugs
xx

 

[CeeCeeGo]

Some hints that work for me:
Play my favourite songs and sing my heart out
Strangely have a good cry, it seems to help me
Colouring or Lego (having to focus on something can be a good distraction)

Have you tried sucking on an ice cube for your sore mouth?
Also acid reflux is quite common with these gastric/bowel conditions and that can make your mouth sore.

 

[kittyp]

You are so lovely, thank you for the ideas. I love lego! Maybe I need to try and get some of my favourite sets out.
It's just so hard at the minute as I struggle to concentrate and the last few days my eyes have been hurting lots too (that's a new one)
I'm so tired and I'm so fed up of my insides hurting

 

[kittyp]

And now I've just got my blood results from last week and even though I'm feeling so bad they are all normal.
Although they couldn't test the faecal sample as it's too liquid so at least it shows I'm not lying about the diarrhoea.
No idea what to do next or how to get well. Starting to think I need a psychiatric referral as I must just be mad and inventing it all.

 

[ronroush7]

You are so lovely, thank you for the ideas. I love lego! Maybe I need to try and get some of my favourite sets out.
It's just so hard at the minute as I struggle to concentrate and the last few days my eyes have been hurting lots too (that's a new one)
I'm so tired and I'm so fed up of my insides hurting

I hope you feel better soon.

 

[kittyp]

I feel like I just can't keep on like this.
My insides have hurt so much the last 24 hours, I've struggled to stay awake today and couldn't even get out of bed until 11am.
I applied for a new home last week so me and the children would be settled (and have an extra toilet) and have missed out on it.
It feels like nothing goes my way and there is no end to the pain and misery. Can't remember my last pain free day and it's just existing right now not living.

 

[ronroush7]

Sending support and prayers

 

[kittyp]

Thank you Ron. Just feels never ending and truly dreadful. Hopefully it'll be a brighter more manageable feeling day tomorrow. Hope you are doing ok x

 

[CeeCeeGo]

Hi Kittyp

Sorry I haven't been around the last few days. We have just moved home and things have been a bit hectic!

Hang in there Hun. One step at a time. From your post, it sounds like there are too many issues for you to deal with all at once. Just take one at a time.

Get a Lego set out and even if you only do a little bit each day, you are distracting yourself and building something good.

Have you spoken with your GP? Are they supportive of your situation? There is a helpline that the NACC run which may be an option. I'll see if I can find you a link.

Take care and we are all rooting for you.
xx

 

[CeeCeeGo]

Here is the link......

Call 0121 737 9931
Crohn’s and Colitis Support is available from 1:00pm-3:30pm and 6:30pm-9:00pm, Monday to Friday, except English bank holidays. There is no answerphone for Crohn's and Colitis Support. If you are unable to get through, please try again during the opening hours.

- See more at: https://www.crohnsandcolitis.org.uk/support/emotional-support

They are a really good organisation.

 

[kittyp]

My gp isn't really there for much, they issue my repeat prescriptions when I need them and my sick notes for work but they've not once asked how I am.
Was thinking about that the other day as I got really tearful when the diarrhoea first started in August and my gp started me on fluoxetine (it's been over 2.5 years of being ill now and I just couldn't cope with it any more) and hasn't once checked on my mental health since then. Think they must be scared to ask with me still being ill and undiagnosed!

 

[ronroush7]

You might need to go to another doctor.