Taking Pred 3 weeks in!

[Gemmajoy]

Hi everyone

Finally been diagnosed with Crohns and severe bile salt malabsorption.

I was given a six week course of Pred along with pentsa to see how things go.But I've been having a bit of a roller coaster of a ride. All in all the pain and diarrhoea has improved really well but I'm going from having a really great day feeling normal again to a day where I feel terrible again and completely no energy.

I have three children under 5 and I'm so exhausted. I'm now also on anti viral meds too as doctor thinks I may have shingles or some other viral infection. Currently sporting some lovely scabbed over blisters on my chin.

I think I'm at the stage where I'm thinking am I ever going to feel normal again ? Im meant to start work again in a couple of weeks following maternity leave but so worried about how I'm going to be and I don't want to let anyone down. But again I'm looking forward to it as it's only for 2.5 days and it gets me out of the house for a bit to be me and use my brain other than just mummy.

Sorry for my long rant!

 

[scottmyster]

HI Gem, welcome to the forum , I am sorry you have been diagnosised with Crohn's but i am glad you found this site. Have you had your blood levels checked for B12 and Iron defienicies? because this could cause fatigue. I have had Crohn's for 21 years now and it's been a real rollercoster ride. I believe that if your still feeling terrible, in which i really feel sorry for, it's unlikely you will be able to return to work feeling like that, you really need extra time to recuperate. You owe it to yourself and your family. But, you can try it and see out it turns out and if you feel to sick then you will have to stay off work for a while longer. I know it's easy for me to say that but i have been where you are today and it's a very difficult decision to make.But you need to get well first, your health is more important.Here at the forum will find support and there is a great world of knowledgable people who been where your at today. It will take some time to get use it. but now that you've diagnosised and it can be treated quickly. and hopefully your pain will cease very soon. best wishes.

scott

 

[Jeffer]

Taking pred

I too have been taking pred for about 8 weeks now and the ups and down stay with you. It is the tiredness that has caused me most distress. I feel better when I have to do something but then feel rotten afterwards. I find it difficult to get a good balance.

I started on 8 tablets and reduced each week but unfortunately when I got to 1 tablet the pain was so bad I had to increase it to 4.

Hopefully next week I should get sorted.

Take care as you need to get well for yourself and your child.

 

[Crohn's 35]

Hello and welcome to the forum. Sorry you have been diagnosed with Crohns but you will learn alot here. NO worries of rants, we fully understand them, trust me..

I have my gallbladder gone and have acid and bile salt absorption as well. The one thing that I can suggest is Cholestyramine, (Questran) your doctor has to prescribe it but will calm things down and you can absorb nutrients which is needed in this disease. Another suggestion is when we have Diahreah, we lost one of the most important vitamin is B12, that will make you feel tired and run down so have your blood work tested. Dont want to overwhelm you, if you have questions we can help as best we can, we are not doctors but we have been there. Welcome aboard!

 

[Gemmajoy]

Thank you everyone.

I'm so pleased I found this site. I feel so much better knowing that I'm not alone and that there are people who understand how you feel.

I've come to realise that this disease can make you feel very lonely as it is so hard for others to understand if they have not been through it.

I am a person who is normally very strong willed and I have learnt that when I do feel bad I must say so and let people help and to try and rest rather than try to solider through and make myself worse.

Which today I have done for the first time. I don't know whether it was my body reacting to taking all the new meds or the fact I may have over done it yesterday but in so much pain today the D was back so hubby has taken the kids out and I'm back in bed. On my mash potato diet ( the only thing I know I can stomach when I feel like this).
Hopefully this day of rest will sort me out.

 

[robbo87]

Hi gemma and welcome to the site Hope you are starting to feel better, there will be times where things aren't working and you will feel crappy but i promise you things can get back to normal. You've just gotta find what's right for you. Don't let it grind you down as it can be just as torturing mentally as it is physically. but a day of rest certainly wont do any harm!! imo stress can be a big factor with crohns which i can imagine wont help you if youre ill and putting up with kids and all the rest of it too!

Have a speedy recovery
Martin

 

[Gemmajoy]

Thanks everyone

It's crazy enough with three kids let alone with crohns too. Lol. Feeling a bit better today but still in a bit of pain but I'm not sure if that's the anti viral meds. I have been given codeine but trying to stay off it.

I'm meant to be going for dinner with friends on sat and been really looking forward to it and getting out of the house, fingers crossed I feel better.

Hope you all have a great weekend too.( though it is only Thursday)

 

[Jeffer]

Hi Gemmajoy

Don't worry about trying to stay off the codeine it is better that you are pain free than not tasking the tablets. That is as long as they don'y upset you. Being in pain only increases the tiredness and then you get into a vicious circle.

Take care and hopefully your night out will do you good and keep your spirits up.

 

[archie]

Hi Gemma hope you feel better before too long, like you last year I was running around after a 1 yr old and a 3 yr old, a full time job and a new diagnosis of crohn's and I thought I'd never feel normal again. I was always energetic before I got ill and found the fatigue overwhelming TBH.

After 6 months of pred and 10 months of pentasa I actually did start to feel pretty normal and able to carry out all my roles sucessfully and even have a few nights out along the way!!!

Eventually I needed surgery but thats a different story but you will feel normal again i'm sure and I hope not before too long. Def get your vit B12 levels checked and take time for yourself to recover don't try to do too much when you feel bad it'll only make you worse.

 

[Gemmajoy]

Thanks Archie!

I'm definately learning to listen to my body and when it needs rest. Just hope this constant exhaustion doesn't last too long.

 

[Natalie38]

HI there,

I do not blame you for ranting..Thats all i did for the month of July. Like you, it was one thing after another and i was very sick. Was left emotionallty and physically drained. THANK GOD for family..They really helped support me.
I hope your dinner on Saturday is fantastick! and of course I wish you the best. We are all in this together..

 

[Gemmajoy]

Ah thank you Natalie!

I've woken up this morning and my joints are really aching but my mum is here to help with the kids today so I'm less stressed to go out tonight

Hope everyone has s great weekend. Thanks again for all help and support this site really is great and very helpful!

 

[scottmyster]

HI Gem, this crohn's can really drain you, i would advise to take some B complex vitamins and some multi-vitamins as well. because Crohn's tends to deplete them quite quickly and if not hungry try some type of nutritional drink like ensure to keep you energy levels up. and the aches and pain are coming from the predisone and your crohn's somehow they are connected. i hope you have a great weekend and dinner too. best wishes.

scott