Tired and lost

I am so tired and lost and needing to vent

These past few weeks I feel as if I am on a roller coaster. I can't stop thinking negatively and wanting to cry.

Over the past few visits at my doctor he keeps telling me I don't have it bad and shouldn't be worrying so much. But I can't get off the steroids, I was down to two entocort and wasn't doing to bad, now on Friday had the worse pains on my right side and yellow/orange diarrhea. Had to bring it back up to 3 entocort, and going to try to see him on Tuesday. I am just really tired I know he had mentioned if I can't get off the steroids I will need to go on something stronger - and that idea scares the shit out of.
I don't know what to do - ask for surgery with the possibility of it coming back and getting worse, Or taking the stronger meds and getting cancer and dying. Or staying on Steroids will all those lovely problems that could come from them. I was thinking of asking him to put me back on 3 entocort and add a full course of pentasa to it than slowly dropping the entocort again to try. But something tells me that will not work neither
My husband said to me that I shouldn't be so worried about the medication because not everyone gets cancer, but from what I have been reading the chances of getting it cancer are pretty high. What made me feel worse is when my husband said you can walk out one day and get killed by a car or lightning. but hat is not the same, I have no control over those situations, butt this time I am the one that has control, I need to make a choice. I know the choice is not all mine alone, and the doctors will help - I am terrified.
Before anyone mentions it I do realize that even with surgery some are placed on the scary drugs as a prevention methods so no matter what I feel completely defeated, I feel like I screwed no matter what

doesn't anyone else feel this way or am I really over reacting

Your over reacting take your meds feel better soon I hope.your husband is dead right take them these leaflets irritate me a million to one chance of a side effect or a good chance of them helping,I know my choice,just remember your like me I,d guess loads of blood tests and other stuff which will pick up anything going astray with your medication listen to your husband and doctor.its not an easy path we'd,re on listen to the experts and people close to you.good luck.

Daunting, I feel ya! I was the same way. Then I finally decided, "this isn't living", and I decided to take the Meds I needed to make me feel better. There are risks, they are low, but they are there. For me, the benefits outweigh the risks. I've been on Remicade, Entocort, Lialda, Omeprazole for YEARS (and was on a bunch of other junk before that).
I want to live and try to embrace the day not dread it and struggle through.
I'm rooting for you.

I understand what you are saying about needing to feel in control and that by taking stronger meds you are actively choosing to live with the side effects. By not controlling your disease with medications youre actively choosing to let it progress...

I know that is a harsh reality but not treating this disease can be just as serious as some of the potential side effects. When you are on these medications you will be monitored closely for any side effects.
Talk to your doctor voice your concerns but please also remember a lot of the side effects are listed to cover the backsides of the doctors and manufacturers of the medications that doesn't mean it happens to every one, youll see horror stories more than success stories because were the first to complain when something goes wrong as the last to promote the people who help us.

I hope you find some way to come to terms and make a decision that will control your disease and above all I hope you feel better soon

Remember if you are reading the side effects and it says say... a certain cancer risk is doubled over the norm. and the norm is one in 500,000. That means it is now two in 500,000. When you actually break it down to figures, it doesn't sound as much of a risk compared to the damage that can continue to happen uncontrolled, or the possible quality of life that may become a factor.

Thanks everyone.

I think my major thought process is I feel like I am screwed no matter what.
I really don't want to die, I don't want to feel sick, I want my life back. I feel like everything I have ever wanted is now lost to me. There is even a part of me that is thinking of starting a bucket list.
2 in 500,000 is still a lot, I was doing some reading on it and there are so many different results, and even some say is 1 in 10000.
I am only 34 and I want the rest of my life. I love my husband my family, my life.

AuntiieEm your are so right a tiny chance of complications or the almost certainty of your crohns,Ibs making you really ill,not to mention the worry on your nearest and dearest that alone makes these meds worth taking.i know a lot of people worry about all these meds we have to take,it doesn't,t me happy but I,m sure I'd be a lot unhappier not taking them and I,m like everyone else(hopefully)we regularly get check ups if I get anymore bloods done I,m telling them to fit a tap.cheers

But can cancer be caught early with monitoring, or once it is caught - you now have and it and ah well, one less crohns patient to deal with. Or do they stop you off the medication as soon as they find something odd in the blood work. Can the long term side effects from prednisone and entocort be worse than them.
I don't know if I want to do this or if I can. I am so terrified.

Why cant they come out with a medication that is more safer, something that will really help us - I don't want to die before my family does.

Reading on the CCFA website and they say the odds are ( For perspective, the average person’s risk of cancer is 2-3 in 10,000, whereas a patient being treated for IBD with these immune suppressant medications has a risk of 6-9 in 10,000)
Scary shit

just be thankful you have a choice. living is doing what we need to do to survive for ourselves family and friends. it is scary. i hope you will find something to help soon.,maybe you can find something to you like to do to take help you relax. its hard i know but stressing can make it worse. good luck.

hi daunting....

going up and down on prednisone and entocort, changing the dose etc wont help.

you sound like you are high as a kite and all over the shop....which is how i was when i took entocort every day for about 5 years.

i got to a place that was aware there was a risk with remicade, but the risk of it causing me problems or killing me, was a risk i wanted to take....because i had no quality of life at all.

I would try surgery before taking the heavy meds...

but seriously, 10 in 10, 000 - risk of developing cancer etc.......so what?
i know people who are as fit as a fiddle and get cancer and die or get run over by a bus.


i think coming to terms with death and reality is really something we all need to come to terms with....the sooner, the better.

hi,
I am not really high more like I am spiraling, life has been a rollercoaster lately, one that I want to get off, or at least take a break from..

Hi there,
I understand why you are emotional about saying yes to more treatment that scares you! I was too and remained on steroids a long time, until I agreed to Infliximab infusions. I am in hospital just now, on my drip! Nothing else worked for me. I am well. It is preferable having your life back,than stopping meds and strugglingeach day!!! So go for it. I hope you feel better soon.

honey

why are you in the hospital, and hiw did the remicade make you feel weren't you scared of cancer.
I am so terified of it.

Hi there,
I am having my Infliximab infusions for Crohns. I am here every 8. week's. I was well enough to have a holiday this year, got tired bit otherwise able to eat. I was afraid of developing M.S. The advantages outweigh the risks and they monitor every time they see you. Bloods,etc So go for the treatment and feel a lot better.

4

Thanks All.

I have scheduled an apt with my Gi tomorrow night, I think I may need are prednisone to help bring it down right now because I honestly feel worse this flare than I have on my previous ones, I think that is my big issue for irrational thinking, because I feel that I am getting closer and closer to having to take the BIG MEDS as I call them. I know than can help so much, but the side effects for Cancer are scaring me alot.

hi daunting...sorry if my message upset you. What i was trying to say is that taking prednisone can cause the spiralling emotional rollercoaster. I was on the drug for years and it was only when i got off it i realised exactly how bad the ride had been....

Hi Happy poo poo.
Nah your message didn't upset me too much. I know I am spiraling. Were you on Prednisone or Entocort. I was only on prednisone once, than right to entocort. But I do think I will need to go back on Prednisone at the moment to get in check. But for me its the idea of the medications, I am so scared to get real sick or even worse get cancer from the medications
The way I think of things is, do I really want a quality of life for 2 to 3 years, than I get cancer from those meds and die within 3 months. Or live 15 years with suffering but have my family close by with me. I know these are fictional numbers - but these are my real thoughts

i was on entocort until my teeth started to get brittle....then i had bone desity test and my bones were thinning so i had to get off the entocort.

It is natural to be scared of the meds and of course cancer and death....i think we all are! You are not alone in those thoughts and concerns. Everyone has to make a decision themselves, given their circumstances...for me it was take remicade or have another surgery and potentially die....it wasnt a hard choice at the time because i had no life.

Hi Happy poo poo

How long were you on the Entocort, were you taking calcium supplements. I have always had brittle teeth even as a child, basicly my dentist calls them milk bone teeth. So that for me is no indication as of yet. I am presently taking calcium supplements daily to try to help with the bone density. How do they test for bone weakness. My family doctor said I am too young to show any sign of it at the moment, maybe I will ask my GI.

i was on entocort for 6 years....

I KNOW...

no i wasnt taking supplements, but i was surfing a lot.

they can do a 'bone density test'...its just an xray sort of thing....

I was just wondering if your calcium has vitamin D in it? I think that helps to make it work better. Mine did when I took it. I am just taking the Vit. D now because I get calcium in my diet and I heard that too much can cause kidney stones, but not sure if it's true. Maybe look on the supplement part on here and see what it sais.

I was diagnosed at 17 I'm 28 now I've been on remicade and entocort and flagyl. I've worried my self sick for years every time a new symptom comes up or I get a bad flare or start a new med. but after coming to the conclusion this is my life I gotta do what I gotta do to be as healthy as I possibly can while I'm here to take care of my family properly. The happiness of my family greatly out weighs the risk of meds That I have to take to stay healthy. Find a good balance between Faith in GOD and healthy living and exercise and I promise it will get easier. And here's the biggie stop googling!!!!! That's the worse thing u can do just like the news there's very few success stories or happy ending stories. Give ur worries to GOD and realize it's not ur life to worry about JESUS paid the price for our lives so make the best out of the life GOD gave u and remember there's always a reason for our sufferings u don't know how it may affect others if u endure with faith and give GOD all the glory!!!

I've drove myself and my family crazy with worry and that's not fair of us to do and trust me there's much more serious disease out there that take a lot more maintaining than Crohn's be thankful u don't have one of those.

I'm not trying to be harsh but this is coming from years of knowing I have this disease it's 30% phyisical and 70% mental so what if at the end of ur life ur 90 years old and have a few less intestants than what u started u want need them in heaven anyways. Try and find a few people who have had this disease for a while and pick there minds it's good to see people living with Crohn's and having a good life and there ain't no shame in a Prozac if needed but only if u go to GOD first!!!

I like the 30%physical - 70%mental theory....

the problem is, most people who are sick (with crohns or other) just want to take a magic pill and everything goes away....they dont want to, for one minute, entertain the thought that it is partly themselves and their lifestyle, thought patterns and conscience that are affecting their body.

The intestines are intrinsictly linked to the emotional body......get happy!

I meet so many people with crohns and/or colitis who just think they have been dealt the bad cards of life...they still smoke and drink, take drugs and eat shitty food and think the wrong way about life........

crohns can offer you an opportunity to change and change for the better and actually have a more complete life in some ways.

I feel today that my life is more complete than if i had not had crohns and all the CRAP that is threw at me.....surgeries, the loss of dignity from having things shoved and prodded into you, the tests, meds, etc....the toilet time! crikey, the toilet time.

go HAVE A SIT AND A THINK and rememeber....what you eat and think today, walks and talks tomorrow!!!!

Amen happy poo poo it's took me a while to realize this I still struggle every day with negative thoughts usually about getting some awful diagnoses about terminal disease or something like that but it's because I'm so happy with my life I have GOD and a wonderful family and I'm scared to think that I may have to live them one day for some irrational reason. But I hardly worry about my Crohn's I guess partially cause I've had it for so long now but either way I find that positive thinking and a belief that there's a better life than this makes the world of difference in my mental and phyical condition. Also I'm taking in a new attitude I'm gonna start exercising 20 to 30 minutes every day get my heart rate up then stretch a lil being active even when ur flaring is a good way to remind urself it's just a temporary problem and it well soon pass ur not dying get up and get over it as soon a possible type mentality. I don't wanna rely on drugs to keep me moving and happy I wanna do my part as well cause my family needs me as happy and productive as I can be and harboring negative thoughts debilitates me and I any have that. I know there's done things that well come my way that's out of my hands (praise GOD HIS in control though) and I'll have to address them when they get here but until then I'm gonna work everyday I'm gonna enjoy my life and family and I'm gonna stay positive because that's the only way!!!! Also no googling symptoms that's a big no no no even a sinuses infection can kill u if u google it!!!! Lol

Thank you everyone for your wonderful posts

I know a lot of you turn to spiritualism for help and assistance during these tough times, I have never been one to turn to a higher guidance for help. I wasn't really brought up around it too much, and sometimes don't know where to turn or start. I did see a psychologist a few years back and she said that a lot of people turn to spiritualism when they have no one else to turn to or when all options have failed. I do agree a lot of if is 30/70 body and mind, but I think its more 50/50.
What really brings me down is I seem to never feel better than 2 weeks at a time, I know I should be happy its not a few days.
But even today, I am wondering if I have he stomach flu or another flare.

I may take everyone's advise and try spiritualism it can't hurt Hopefully there is some up there looking after us

I dont know if you have to turn to spiritualism...i think it is more a realisation that there is more to your body, mind than flesh and blood...that there is soul and that soul yearns for connection to the universe to feel content. There is nothing surer than if you take one step towards God he will make it feel like two. Good luck

WOW another vent from me, was going to post another thread but figured, this post was more for me getting it off my chest.

I start with a psychologist in about 3 weeks, my family doctor has sent me for a referral to our hospital as I am starting to fall back to where I was a few months ago, I am starting spiraling.
I am getting really scared that I may not have a life anymore. Probably over reacting again but this is insane.
Let me explain, in he past few years the doctors have bounced from IBS and Crohns and finally this doctor says, it could be a touch of crohns with the most of it being IBS.
Since my colonoscopy in Septeber of last year, I have been put on 2 courses of prednisone, entocort, pentasa and salofalk. The only time I felt reasonably well was when I was on prednisone. I have been put on 9mg of entocort since sept 21 and and have had 2 flares since, taken pentasa for 3 weeks and switched to Salofalk as of last Wednesday because I cannot swallow the stupid pills, which ofcourse causes me anxiety.
Tonight I had my first meal around 730 and started gurgling a lot, feel like I will be running to the loo sometime soon and fierce.
If I am so mild why am I having so many issues. I am so frustrated.
what is next for me. I know that Imuran maybe my next step but if I am this mild why do I need this and I am so terrified of getting cancer from this medication and all of the .
There is a part of me that thinks to be honest, if I take Imuran I am signing my death warrant.
Why is Enotocort and salofalk not working, I don't understand - I really don't
Could I be in a more serious flare where the medication I have been taking aren't strong enough to calm it down.

I just want to scream from the top of my lungs.

I've been on everything you've listed plus methotrexate, Imuran, remicade (8years), Tacrolimus, and currently Humira.

I've also done TPN infusions each night for the last year and a half and for a year before that. I have a port in my chest that I use for the infusions. And 2 years ago ended up in the ICU and was septic from a blood infection from my central line.

There hasn't been one time since iwas diagnosed have I thought about what could happen to me down the road. I want to feel good now, I want to work, and afford things, I want to go out for dinner, movies and hockey games. If my parents didn't have the option of remicade when I was started on it I probably wouldn't be here. Nothing worked for me and predisome gives me the worst side effects ever. Nothing currently works for me besides Humira.

I know is a ridiculously difficult decision to make. But image getting yourself to a place where you felt 100%. I bet you've forgotten what that feels like. We all seem to hit a place where we just except the current symptoms as being our normal. If you felt better you're anxiety level would decrease. You may not need biologics forever just to get you back on your feet. Then who knows maybe you could control it with diet and vitamins?

I am so sorry to hear what you have been through. Those are the things I am most scared of that happening to me, I do not know if I am strong enough for that. I hope that I am but I feel that I am not.

i think it is important to realise that there are people with crohns that feel a lot worse than you might be feeling right now.....to put it into perspective. When i have had a 'flare' it has lasted for months and months and months and eventually required surgery...i have had years where I cannot eat without pain. Taking Imuran, or any other drug was a very simple choice as i was lying in hospital with no life at all....it was like the drugs offered hope. Yes one gets scared of cancer, but what is the point of living if you just feel like shit all day and night for months on end?

I would suggest that if entocort isnt working to calm it down a little bit, then go back to prednisone. entocort gets released in the small intestine, whereas prednisone gets released in the stomach...if the crohns is active in your upper tract or near your bum, then entocort isnt really the right cortisone to take? You probably know from your colonoscopy where the crohns is? sometimes it can be in two places at once and sometimes it can be from the mouth all the way to the anus.

most importantly is to try and calm yourself down......

anger is very normal, screaming at top of the lungs is probably a good thing to do.

As with every one of us that has to come to terms with this horrible disease, it is a process of denial, anger, fear and a lot of pain and heartache......not a walk in the park.

the bright side is, it can go away and it probably will go away.........you just need a few days where you feel alright, then get the meds right and try and move in the right direction....

good luck!

Thanks for the support it really isnt that bad. It could be worse. I can work, I have a very supporting partner we go out and I mostly have a life. I had to leave an event early last night because there was only one small shared bathroom. But thats how it goes.

I honestly think you would be able to do it if you really need to. Like happy said, decisions are easy to make when your in a hospital bed.

And it really just becomes natural once you start feeling well. Youll continue the treatment because it makes you feel much better

Hi Daunting

I have read through your posts and the replies. I think the fact that you are shortly seeing a psychologist is a very good thing for where you are right now. I too, have really struggled with the mental/emotional/psychological aspects of this condition and having some counselling has helped me to start to deal with those aspects.

Like you, I didn't want to do the 'heavy' meds. I am now self injecting Methotrexate and it isn't (yet) as bad as it could be. I tried Imuran and 6mp but reacted badly.

All I can say to you is that in my short experience with this condition, stress is the worst trigger for me. I have really struggled the last few months with stress and this has aggravated my physical symptoms. I kept resisting going on the heavy meds but my GI persisted and now I am on MTX jabs (which are really easy to administer).

Give yourself a break. At times, you are going to feel low and at other times you will feel better - that's life.

I hope seeing the psychologist helps - give it a chance.

Take care and try to find something every day that makes you smile.

Carol :ghug: