Struggling

[shazamataz]

Hi all,

Me again with probably some similar things to say/ask that I have before, but his is what this place is for right?

It's been 4 months since I was in hospital and got the dreaded diagnosis. I've been tapering Prednisone since then and am now down to 10 mg. Ever since reaching 20mg I have been feeling continually worse in general - unbearable fatigue, achiness, insomnia, anxiety, bouts of depression and general weirdness which kind of freaks me out. This seems to get worse for the week or so after dropping a dose.

I have explained this to my GI via email and suggested dropping in smaller increments and he wants nothing to do with it. he INSISTS that I must go 10-7.5-5-2.5 and then nothing. I am very scared of the way dropping makes me feel and I don't think he is willing to listen to find a solution.

On the good side, my bowels seem to be mostly fine. I get lots of gurgling (painless but annoying) and the odd twinge, but never in the same place (my Crohns is in the ileum, nowhere else that i am aware of).

So, as far as the disease I am mostly asymptomatic and don't have any D or C (which is what I had to start with) - nice regular morning BMs of good softish easy consistency - but lovely and black from the iron supplements.

I have chosen to go the natural route for now and continue with no meds once pred has been tapered. I just can't feel comfortable about taking immune suppressing drugs when i don;t think that is what is happening in my body -DBergy will agree with this. I tried to approach the LDN issue and GI again wants nothing to do with it.

So, I have been seeing a naturopath and am taking a lot of supplements (see my sig). I have also changed my diet a lot, but am getting a bit more slack recently as giving into temptation, especially with sugar - no takeaways though!

My major issue, I think, is that I still can't get my head around this permanent disease thing. I have trouble getting it out of my mind and it feels like a constant burden which, on top of the tiredness/anxiety/depression, is making me feel like I am unable to have much of a life at all. EVERYTHING is a major effort and I am fed up with it all. And my Crohns isn't nearly as bad as some of you here.

I am terrified of what the future holds and feel so despondent.

I guess I am asking how some of you get your heads around this. I feel quite alone, despite having caring family and friends, becaue I live alone and I don't think anyone really 'get's how bad I fee as they don;t see it. They don't see how I can't sleep, they don;t see that I have to take naps during the day just to get through, that I can't concentrate on study at all, that I feel like I am just floating about not getting anything done. People keep saying I look better, but how can I look better when I feel worse!!??

It's almost like I've been sick, in hospital, gotten treatment an dnow everything should go back to normal. But I don't know what normal is anymore!

I am not normally a moody person and I find myself feeling so angry and frustrated and struggle not to snap at people. I even find myself wishing they would get it too so they'd know how it feels (bad I know). I hate seeing everyone else getting on with life and me stuck in limbo, not wanting to make plans because I don;t know how I will feel. For instance, I'm supposed to be going to Pearl Jam in a couple of weeks but I simply cannot do it, I can;t commit and so my friend has organised someone else to go on the trip with her

So, this is getting LONG! I hope you guys can offer some advice/support on how to deal with this and live a normal life, or at least somewhat normal!

I am tired of being scared!

Shaz

 

[beth]

Hmm. This all sounds so familiar Shaz!

Dont really know how to say what I want to at this point. Just so tired I want to go back to bed. But here's some (((HUGS)))!

 

[xX_LittleMissValentine_Xx]

Shaz - about the tapering pred. I tapered in stages of five every two weeks. (I think) So It looks to me like you are already going slowly. And as for other medication, I can understand not wanting to go down the immunosuppresant route. But have you considered Anti inflammatory? Alot of us on here are on Pentasa, and for me I know its the main thing that is keeping me well. As when I stop taking it I can see a difference.
As for getting your head around it. I am going through the same thing at the moment. How can you accept something that will effect your whole life unpredictably. I think the main thing is to look at each day seperately. When u wake up, or throughout the morning think, How am I feeling today? If it is a good day then try to get things done that you would like to, and if it is a bad day then take it a bit slower. And as for the future, maybe it is best just not to think about it too much. You have already gone through so much with diagnosis. The thing is even tho this disease makes us feel week. It actualy makes us stronger. So whatever comes your way you will deal with it the way you did before.
I hope this helps. Trying to accept it is a journey tht u just have to try and make on your own, no one can make u accept it and there isnt guna be a quick and easy answer.
What are you studying?
xxx

 

[kskitt]

i know how u feel hun, when i was first diagnosed and then had surgery - i was pretty depressed and wondered how i could go on - but i just look at my mum. She has had the disease for 32 years, had one surgery and has only had mini flares and is fine 99.9% of the time - so i think to myself "if mum can get through this without any major problems - then so can i"

 

[Guestly]

Oh Shaz,

You poor thing, I have been thinking much the same - is this how life is going to pan out for me now??? Languishing in hospitals and always being tired?

I suppose we have to just keep pepping ourselves up as best we can, we will get there, and we all have each other on this forum.

You are such a great bubbly individual, and you are very genenerous to the people on this site - don't let the crohn's get you down...

Lishyloo x x

 

[D Bergy]

I guess I am just a natural optimist when it comes to Crohn's. I do not think of it as a permanent disease, but one that has not been cured yet. It has a cause, and as far as we know today, the cause may be reversible. We just need to know what the cause is, and that is not an easy proposition, but it
is not impossible either.

It can be controlled in the mean time. Many here have had it under control for long periods of time.

I suppose I am so used to treating disease now, that I feel I have some personal control over the process. Maybe that is why I do not see it as a hopeless situation. When I have no control over a situation, I get very nervous.

I do think that until we have a cure, you either have to go with the immune suppression route or the immune boosting route. While the naturopathic route may help with some of the symptoms, or not, I really do not know, the immune system is still not functioning right.

I found a doctor to prescribe LDN without too much difficulty. Where there is a will, there is a way.

Dan

 

[Cookie]

Hugs, Shaz. I think we all can relate to how you are feeling. When I get down, I always remind myself that just because I have this disease, I have no clue what the future holds for me anymore than anyone else does. I can't compromise the quality of my life at present just because I am worried of what might be. I have found that when my symptoms are acting up, they affect me much worse (mentally) if I let them. It really is a mind over matter thing with me. Not to say that I never let myself get down or worried...I wouldn't ever be on this forum if that were the case (not that you guys aren't great and all, but you know.. ). And, of course, that's not to say that I don't feel awful on many days. I do. But I think Dan B is right, you have to remain optomistic.

As far as your choice of not using any maintanence meds, have you talked to your doc about Asacol or Pantesa? As far as I know, the side effects from either are minimal to nothing and they are very low risk. I took Asacol for a long time and then I convinced myself that I didn't need it and got really lazy about taking it as directed and before long I was in a big flare. Even if I find remission, I won't let that happen again.

 

[vintage-girl]

aww bless i feel the same nothings normal no more its like your not you I think you know wht i mean it is hard darm hard. thinking you girl

 

[fenway1971]

Hugs to my favorite Kiwi! (ok...so you're the only Kiwi I know but if I knew more you'd still be my fave!)

1. We've all been where you are. I know it sucks but if you let it get to you, it will. Focus on the positives. Trust me that once you're off pred you will feel better. Your depression and fatigue is tied to your tapering. It will go away.
2. Look for a new doc...get a 2nd opinion. I can tell from what you write that you don't like him/her.
3. I was in same boat on taper. I tapered too fast and felt like crap. It's withdrawal and you've been on pred for a while. My doc suggested 1mg/week taper once I hit 10. Took me 10 weeks to go from 10 to zero which sucked. But, I got through it. The withdrawal symptoms weren't so bad. Still there but not as intense.

Hang in there. Vent away. This is what we're all here for.

 

[shazamataz]

Thanks guys and (((HUGS)))
The pred thing is a big issue and my GI won't listen to changing the taper to reduce side effects. Unfortunately we only have the one hospital here and so one hasn't much choice in doctors!
I'm sure I will get through it! It's been worse the last couple of days as I am photographing a wedding today and that always spikes my anxiety levels, mostly because I worry i will be too tired to get throuhg it! However, I managed the last two so why sould this one be any different!!??
I know the mental aspect here is HUGE and the pred doesn't help - not sleeping is the worst part. I am alreadt exhausted and in two hours I have to go take photos and be all energetic etc for about 6-7 hours!
I hate resorting to it but thank goodness for valium is all I can say. I look forward to a time where I don't need it.
Weddings shouls be FUN right! This one is for a freind as well so I SHOULD be looking forward to it!
Thanks again for supportive words. Sometimes that can be enouhg to raise my spirits. And I do hope I do this enough on here for others!

Shaz

 

[scrapman]

Hi Shaz. This is the Scrapman's wife. I'm sorry to hear that your having such a rough time. You mentioned that despite having caring family and friends, you don't feel they truly understand what your enduring. You right, they don't. I've been living with a crohn's patient for over and year and until I found this forum did I begin to understand how bad things can get for someone with this disease. Believe me, people what to help but they need to be educated. Tell them how you feel and what you need. The more specific the better. Refer them to this forum and let them gain some insight to the disease. I found this page just a few weeks ago and cannot begin to tell you how much I have learned. Thank you everyone for posting . Best wishes to you and all crohn's patients.


(Hope the wedding went well)

 

[Pirate]

Shaz, the Pred is a pain. I went through the same years ago when I was on it. While tapering off it I also had anxiety and depression. I thought I was going crazy (in a bad way) and this went on for a little while after I was off it. It has to get out of your system.
As far as wrapping your head around CD, most of us have been through that process and it is hard to get use to. I spent almost 10 yrs being pretty much pain free and when it came back I had to learn how to deal with all over again, just didn't take as long as when first diognosed.

Sending you a BIG ((HUG))