Hi

Hi Everyone,

ok here goes...

My problems began back in March this year, i was wrongly diagnosed by sigmoidoscopy as having hemerroids after some painful toilet trips involving varying amounts of blood. I had the stomach cramps and bloaty pains but just put them down to bad diet and lifestlye (10 - 12 cans of redbull a day, eating junk and a high stress job which has me on the road a lot).

The most recent episode ended up with me being taken to hospital after a visit to the GP. I was put on Oromorph for the pain and started on IV Hydrocortisone.

Eventually diagnosed with Crohn's Colitis after the hospital admission. I'm struggling to get to grips with this problem. I've gone from never stopping and being full of energy to being really tired all the time. I have alternate nights of insomnia and sleeping for 12 - 14 hours. My eyes, stomach and joints hurt all the time, im irritable with my Fiancee who has been amazing throughout all this. I can feel myself slowly sliding into depression and i would like to know if this is a common reaction to the disease or if its just me being stupid.

I'm booked for a barium follow through tomorrow morning which is going to turn into a very long day due to despite not having been to the loo for 3 days not being able to go. (Or will the Barium sort that???)

I'm currently on a 40mg taper of Prednisolone. Also taking 4g Asacol, calcium tablets, Alendronic 70mg and Dihydrocodeine for pain relief.

I would like to take this opportunity to thank All the Staff at Arrowe Park Hospital who looked after me during my week there.

Thanks for reading.

G

PS Currently on an insomnia night as its 4am in the UK

Hi Graham, welcome to the forum.

Sorry to hear you are having such a hard time right now. I often feel like I am either energetic or exhausted, like there is nothing in between. I fell into depression with the onset of the disease. I am still on medication to combat anxiety. I feel that anyone that has long term pain can become depressed. Your body just can't be happy with all that turmoil going on. Many take meds, others go to counseling, some find other activities that help. Personally I have a low dose med as well as exercise and do yoga to relieve stress. Unfortunately I was a stress ball even before the disease...now I really have to take care of it.

Don't feel crazy or like you are being dramatic, all of us here can understand what you are going through. Your fiancé sounds awesome for being there for you.

Good luck with the barium! My only recommendation is to walk around, sometimes it helps move the barium through.

Hi Graham

Welcome to the forum. Good luck with the barium, let us know how you get on.

Welcome to the forum Graham!! I think you will find that all your symptoms are very common here. I'm glad you added that last sentence because I was going to have to ask where in the world was the Wirral then someone would have called me a stupid Yank!!! Good luck, hope you stick around!!

Hi Graham and :welcome:

Good to see you here. There are many people here that understand what you are experiencing and the feelings you are dealing with, along with what effects the drugs can have on you. Believe you me, you are not alone! Good luck with the test tomorrow and please keep us posted on how you are going.

Welcome aboard!

Take care,
Dusty

Hey fellow Brit.
Welcome! Sounds like your having a hard time, most of us know how you feel and your def not being silly far from it ! I suffered with depression and anixety with my Crohns and still on medication 10 years on for it. All of us find it hard to cope with and when your new to the illness it can be quite scary. Just make sure you ask lots of questions, sure someone on here would of been through the same thing.
Pred is a devil when it comes to sleeping.

Jo xx

Thanks for all the messages everyone it means a lot! Barium follow through went well just waiting to speak to a Doctor about the results.

The sleeping thing is really beginning to bother me. i sleep for 12-14 hours one night then an hour the next. I'm hoping this isnt going to be how it is until i'm off the Pred. Are there alternatives?

I had never heard of Crohn's until i was diagnosed i am spending a lot of time reading lots and lots of info some of which is terrifying! I'm hoping i get into remission soon so i can get back to semi-normal. I've started keeping a diary of drugs, foods etc to see if there is any pattern to what im doing which sets me off again. I felt great last week when i got out of hospital but i feel appaling this week. Guts are killing me!

Anyway... Enough whining. Hope you've all had a good day!

Best regards

G

welcome graham

Hi Graham
and welcome fellow Brit

we have another member, Petebp from your neck of the woods!
Insomnia is a killer with Pred, I used to take mine at 5.30am then go back to bed! I found that the speedy feeling reduces around midnight if taken early! Then I'd have 2 Nytol at bedtime.
Pred gives you the munchies, so watch what you eat! I stick to the low residue diet whilst flaring, it works for me, gives my bowels a rest, find this in the diet section on here.
glad you found us, lots of friendly peeps on here
lotsa luv
Joan xxx

Hi Graham!

I feel ya on the Prednisone. I was up to 60 mg at my worst! I didn't sleep for longer than 2 hours at a time for about a month.

The side effects will let up as you taper down, though, so hang in there. I agree with Astra about the low residue diet - it helps me a lot, and hopefully it can help you too

-Cally

Thanks!

The insomnia is doing my head in, i'm not a great sleeper at the best of times but i've been up since Wednesday :/ pretty sure i should have shut down due to exhaustion by now.

I know what you mean about the munchies ha ha. But i lost about 20lbs in the week leading up to going into hospital so i need to put a bit of weight back on.

I spoke to one of the specialist nurses at Arrowe park Yesterday, i asked her about diet etc and she recommended that i carry on as i normally would until i find my triggers. When i find them i can exclude them from my diet or substitute for Gluten free etc.

About the only things i can keep down which dont seem to send me running for the loo are crumpets/muffins and yoghurts. I have constant pain at the minute and im not sure if its due to the flare or if its what im eating... Any suggestions? I'll have a look at the diet that you've recommended and see how that works out.

Hope you're all having a good weekend

Cheers

G

Hi Graham and welcome!

Prednisone - we all love to hate it but it does work wonders! Maybe you can talk to your doc about a sleep aid. Sometimes I just take Benedryl when I am having trouble sleeping. You need your rest so I hope you get that part sorted out soon.

Explain to your fiance that one of the side effects is irratibility and mood swings. It really can turn you into a monster. When I was at 40mg I was a nightmare! I thought I shouldn't even be driving a car because I had such bad road rage!

Hope you start to feel better soon. You'll find lots of good advice here, and don't get too freaked about what you read. Crohn's is different for all of us. There are a lot of success stories as well as people who have had a really tough go of it.

Take care of yourself! - Amy

PS I hope you have given up those Red Bulls!

Hello Graham, it's lovely to have you here. Welcome to the forum x

Hi, I just wanted to say I know we all have different reactions, different pains and different varying flare-ups and being in remission
but, I was awfully depressed when I got diagnosed, I thought that was it, I used to be well, now I was tired, depressed, in pain, needed to constantly be near a toilet etc etc
but...there is light at the end of the tunnel
when I'm well, I'm well, once on the tablets they started to work and I was almost back to my usual self

Welcome! Like you I have periods where I feel like I could sleep forever and other nights like this one I haven't slept at all. Just try to take it day by day. I also get irritable with my loved ones. I try to make them understand everything the best to my ability. Hope all goes well with the barium.