A little scared

[Sarah84]

Hey Everyone,

I found out I had crohns on the 20th December I am on a cocktail of tablets at the minute and I am feeling really fed up. The doctor has just signed me off work for a week as the Pred is making me an insomniac. She aslo gave me some amitryptyline to take at night to help me sleep. it seems to have worked last night as I got about 8 hours instead of 4 but its made me feel really drowsy all day. I am also taking buscopan for the cramps but they dont seem to be doing much.

My Dad had crohns but didnt manage thing well and all I keep seeing when I try and get my head round this is how much pain he was in. I know things have moved on and he didnt look after himself and that this can be managed but I still feel like this has all been placed on my shoulders and things will not be the same again.

I am not seeing the consultant til the 26th January and have had little advice in the meantime, just lots of prescriptions. I am hoping the steroids will help the inflamation but I am not sure what happens then. Will I get put on maintenance dose? I have got another 5 weeks on the steroids, hopefully will be able to stop them after that.

If I try and take a step back, i can see all this logically and everything people say about it being manageable makes sense but it just doesnt feel like, maybe I just need to get my head around it.

I've been listening to this song and it kind of sums up how I feel:

http://www.youtube.com/watch?v=B3BF8RmliZw

I know I will find a lot of guidance here and hopefully soon when it settles in I'll feel more positive about dealing about this.

Sarah xx

 

[rygon]

I doubt you will be off Pred after 5weeks as you will need to slowly decrease the amount you are taken. This sometimes makes you feel worse as your body adapts without the medicine.

What other tablets are you on? You nomrally start out with pentasa then possibly go onto azathioprine as well (althought this depends on doctor and patient)

I'd try not to get too stressed about it (stress is very bad for crohns). Youve got it so just concentrate on making life better. Theres threads in the food / nutrition telling you what foods/drink may cause problems, also herbs/speices that can help (peppermint comes to mind)

It will take you about a year to not only come to terms with the disease but understand it a bit better. This place is great for any questions and info though so welcome to the forum

ps couldnt listen to the song as youtube is blocked at work

 

[Angrybird]

Hi Sarah and :welcome: There is a lot to take in when you first get diagnosed and to be honest things will not quite be the same again, depending on how you look a things they may even be better in a strange way. It sounds corny but I like to think crohns has made me a stonger person mentally and I will never take anything like good health for granted ever again. Ideally with the steroids the docs wll try and get you off these, they are really not something to be on long term. They are good for getting things settled down whilst a long term treatment plan is being sorted but to get off them is always the goal. If you are not happy with how you are doing on the current meds contact the IBD nurses before your appt so the can look into alternatives for you. One thing to do with this disease is take control, if you are not happy with somethng tell them, don't feel you have to grin and bare it because they are doctors/nurses - they are not gods. Building a good rapport with your IBD nurse is key, they tend to end up being your advocate in a lot of cases. Anyhow welcome again and I am pleased you have found us

 

[Sarah84]

Thanks for the replies

I am reducing on Pred at 5mgs a week. Thats the first tablet they put me on. I was out for a meal for my friends birthday and the chemist said I could drink, I had one vodka and coke and was really sick, so the first day didnt go too well. I started again once the sickness had stopped but they make me feel lousy, I am exhausted 24/7 but can't sleep. The only other tablets I am on is the buscopan, omerprazole and Amitriptyline. I basically went and had the colonoscopy on the Tuesday, got diagnosed there and then. He then gave me a letter to take to my doctor telling them to prescribe pred but I couldnt get in until yesterday so they just prescribed me the pred without seeing me. Then when I'd been sick they gave me the omerprazole without seeing me and then the buscopan when I had severe cramps. I finally saw her yesterday which is when she gave me the amitriptyline. Maybe the consultant will be a bit more helpful when I see her.

I know you are right about it not letting it get the better of me and that it will make me stronger, I just can't see past it at the minute. It's mad as I've been through stuff before and I know its made me who I am today but at this moment in time all this feels like its not happening to me. Like I am watching from outside this little bubble.

I am trying not to let it get me down and stress is not that easy to avoid with work and uni but I am trying. The doctor said i need to rest to get my head round it but all I keep getting is more pills and I am not sure thats the answer.

Do you guys have any tips on things for stomach cramps? I've been trying buscopan for about a weekd now but they don't seem to do anything.

Oh the song was called Changes by 3 Doors Down.

Thanks again for the advice and kind words

 

[Angrybird]

I know heat pads can sometimes help, not sure about meds - don't want to suggest something that may not help. I would also say you need to ask about gettng your vitamin levels checked, like your D and B12, us crohnies tend to be deficient in these and if they are low they will definetly be attributing to your fatigue along with your sleep trouble.