Not coping

[NatashaChampion]

Im feeling beyond alone right now and I'm generally not coping at all!

Im fed up of being so miserable and its annoying me that I am having to write on here as all I seem to do recently is moan or complain about something!
I hate that fact all I can think about or seem to talk about is having this disease and its ruling my life.

Everyday I go to bed thinking that tomorrow I can start again, thinking I will be more positive and more motivated! But surprise surprise, by the morning nothing has changed and I'm still my miserable self with no one to talk to but my parents who must be getting bored of me by now!

I cant seem to get off the steroids and am now on steroid suppositories as well which has been mentally traumatic for me this week after another rather disappointing consultants appointment!

I tend to just feel either tired or angry or tearful these days and cant seem to snap out of it or even find things that make me happy. However sometimes I feel that I don't want to be happy and have even started avoiding watching funny program's just so I'm not laughing!

This all sounds so pathetic and even writing it makes me annoyed at myself for being this way! I am really wanting to see the light at the end of the tunnel and I keep reminding myself that I will get through this but right now I just cant see anything good!

Sorry for the rant, just needed to vent my frustration somewhere!

 

[Stevi (:]

Hey Natasha, Not feeling well can really bring you down. I am sorry you feel so alone in this! Feeling sick for a long time can make you feel the way you do, so dont feel ashamed for feeling the way you do. This forum is here for support, so posting here was a great idea! I hope you do something you can enjoy soon! I get tired, angry and teary at times too...but doing something i enjoy even if i dont feel well helps me get back up a little!

 

[afidz]

I am sorry that you are having such a hard time dealing with this disease, I know how you feel. I get into moods where all I can do is focus on how unfair life is or how miserable I feel. One thing that I have found to help is to find an activity that I could pour my heart into. Something else to focus on. For example, I went back to school and took online classes. I found by transferring my focus and attention to something else, I was a lot more pleasant to be around and a lot more fun to talk to.
It also helps me to come on here. I know that I am not alone. I have made quite a few life long friendships on here. We all talk on a daily basis and it helps me to talk to someone in person that gets what I am going through. This is such a strong powerful community and I hope that you can find the same comforts that I and so many others have found in it. Let us know if you need anything or have any questions, there are so many knowledgeable people on here and since its international, you can pretty much find the support you need at any time of day :hug:

 

[NatashaChampion]

Thanks for the quick replies, coming on here does help me to see I'm not alone, just not quite the same as actually having people around you that understand.
All the people that know what I am going through are so supportive beyond what I imagined yet I still feel very alone.
I really want to try doing some physical activity to help me vent my anger but I really struggle doing new things (I always have) as I am not the most confident person and I really worry about what people are thinking of me!
However I feel like I'm going round in circles, I want to do physical activities but I'm so tired all the time from the disease which then makes me more upset and angry and I cant vent it! Just so frustrating!
I am at college doing a foundation diploma in design and media which up until January was going so well! I had 100% attendance and even though I had been in a flare since last may I was actually happy with my life and looking forward to the future! But since being diagnosed at the end of Jan everything has gone downhill! I just have no motivation and my work is definitely suffering for it!

Sorry, I sound so defeatist!

 

[theOcean]

I'm sorry to hear you're so frustrated and miserable dealing with your illness. You mentioned you were on steroids -- are you on any other medications? It may be that you need better treatment to get you feeling healthy.

 

[NatashaChampion]

Im on 25mg of steroids at the moment but cant seem to get any lower as i start getting bleeding again!
I was on asacol which after my appointment on Wednesday they decided to stop and try asacol suppositories instead however after a lot of issues trying to get hold of them im not on it at all at the moment while I wait for the consultant to make up his mind what to do! (I should know tomorrow)
I was going to go on aza but decided to wait for an MRI first!
Other then that I'm on omeprezol and iron tablets.

To be honest I have felt worse since being on the medication than I was before! After putting up with having to go to the toilet a lot and the stomach pain for so long it started to be normal! Its the mental side effects that are truly messing with me now! Just want to get off the steroids!

 

[theOcean]

I had that problem with prednisone back when I was on Pentasa. It turned out that my current medication just wasn't strong enough for me. Whenever I went low enough on my taper I'd just get really sick again.

Imuran will hopefully help you! Just keep in mind it usually takes about three months to get to a point where it's therapeutic, so you may want to talk to your GI about slowing your taper a little until then, as awful as steroids are.

Otherwise, if you still don't notice an improvement with Imuran, it might be worth it to look into a biologic. They're much faster-acting and very powerful, but that would be after seeing if Imuran helps you. I know it's helped a lot of people on this forum get into remission.

 

[NatashaChampion]

I am just concerned about going on to the aza as it has some horrible side effects! I know my parents are worried about it and would rather I tried a different approach first.
We have been looking in to the liquid diets and also being referred to a different hospital with a specialist unit in the hope they will be more useful!
I totally understand where my parents are coming from as i dont really want to spend the rest of my life relying on medication to keep me well however I kinda just want to go on the aza just to get better! I just dont know whats best really.

 

[theOcean]

Imuran really isn't too bad. During the first week I experienced some lightheadedness/brainfog but after that I had absolutely no side-effects. But, I was on Remicade already before that. Once you've already tried the "scarier" medication, it stops being so scary.

And honestly, you probably do need to be on maintenance medication indefinitely. With Crohn's it's dangerous to play around with your medications or go off of them -- and that usually results in flare if you do. So while I can understand not wanting to be on medication for the rest of your life, it's to make sure you don't get even worse, or need surgery, or need to go on even stronger medications down the road because you didn't look after yourself now.