Can't Take This Anymore!!!

[Georg]

:ymad: I swear. I can't. I feel so horrible right now: Nausious sick, Crohn's pain, that sharp pain and aching, feeble, diseased, mushy pain (if you can relate.) While picking up some blood test kit for Methotrexate, I stopped my doctor and asked him if this is just pushing my luck with all these drugs and their possible side effects and if I'm just putting off the inevitable surgery. I told him I can't live like this anymore. I'm to the point where I almost just want to have surgery and move on with my life. I asked him if he'd ever seen anybody come back from this much inflammation and he said yes.

He recommends continuing the Remicade, 6MP, and start Methotrexate before we give up. He seems to think that I should be getting some major effects from the 6MP here soon since I've been taking it for over 3 months now, and adding the Methotrexate to the 6MP will hopefully help. I explained trying to get off the Prednisone means more pain killers, but he wants me to continue what I'm doing.

I just want to feel better. I hate this disease. The problem with the balancing act is that the less Prednisone means more Hydrocodone. Too much Hydrocodone makes me nausious and not feeling ready to go, it just takes away the pain, but doesn't necessarily make me feel "better". At this point there are many times during the day where the "quality" of life SUCKS!
:
Enough of this complaining. At least I have good times during a day too. I'm not bed ridden and I'm not bleeding out the rear. So, I must remember things could be worse.

Thanks for listening.

Georg

 

[mikeyarmo]

Geog,

I know there were times when I was not doing too well that I just wanted a quick fix with surgery also. The thing is surgery is permanent, and there could be life changing effects from it. While surgery is safer now than ever, there are still risks involved. These should be taken into consideration. There are some things after surgery that have changed with me forever. I still seem unable to eat the skins of fruits and peels. I think it was due to the scar tissue that remained after surgery, which may be causing some sort of blockage or is just causing problems for indigestible fibre to pass. I do not know what it is, I just know it means that every now and then when I try and eat the skin of fruit I pay for it with a day of pain.

A lot of people have no problems after surgery though. The thing is that what seems like the easy way out is not always. Surgery is possible and it will likely mean a total removal of disease and all symptoms, but you should not give up trying to defeat the disease yourself. Stay strong, as this disease has a way of changing direction very fast. There is no reason to be negative. Try and stay positive and in time everything will be fine. Even if that means surgery it will mean a recovery and life returning to normal. At least you know you gave it your best shot, and did everything you could to stop the disease otherways.

Stay positive and stay strong. If you do not keep your head strong than will be unable to take control of your disease. The mind can have a role in healing (as is found with the many people who take placebos and find their symptoms go away).

Good luck and feel free to look to us for help. I for one have been where you are, and made it out to the other side. You will overcome the disease too, so please just be patient.

 

[Jeff D.]

Try to relax if you can. You seem to be very tense/nervous so if you can just take a minute and relax. Close your eyes and think of all of the good times you have had. Try to meditate and look up lucid dreaming, it is an awesome experience. If these things don't help then I would ask your doctor maybe about something for anxiety as to me you seem to have a fair bit of it.

I hope you feel better soon and I know exactly what you are going through. I hav enot been on too many medications but I have had the same feelings you have had. I take 6mp as well and if you have any questions never fear to ask.

Good luck

 

[Cara Fusinato]

I know the feelings too! The first 8 weeks were just horrible. They wanted to do surgery, I refused and wanted to give it time. In time, I ended up doing pretty darned good. But there were 8 weeks of days when I just wanted to crawl in a hole and pull it in after me! I literally curled in a ball and cried. Hang in there!

 

[GNC Crohn's Man]

Surgery doesn't always mean an end to the problems too... I had surgery in March of this year had a flare twice then became hyper-senstive to prednisone.... Now the crohn's is ok but I am having to juggle 100+ pills a day to feel somewhat normal and healthy.... Granted if you looked at my supplement list and at my prescription list by all rights I should be dead (either in a coma, heart explode, kidney failure, liver failure ) but I'm not... Granted I've done my homework and I'm doing a very very very very fine balancing act.... If I didn't take my pills properly I would be horribley dead....

Lucky for me I know how to take my pills right....

Best thing is to find a good doc (one that listens to you) and try to balance your meds with a few supplements... Do your homework research your meds what they do how they work.... Learn about the disease... Listen to your body and react accordingly.... You have to work with your body not against it.... Otherwise you will continue to have flare ups.... Trust me I know... I've learned the hard way...

Once you find what works for you stick with it.... So long as it is not killing you slowly.... (A lot of the meds for IBD will kill you from cancer in 20 years or less down the road if you do not balance them out with supplements)....

It may seem dark now.... But trust me things will get better if you focus on making yourself better by working with yourself and not by forcing yourself better... Yes the forced healing works for a time but then you will always have a flare further down the road because you will not have listened to what your body is saying to you....

Okays pill time....

 

[Ruthg]

Georg,

I can totally relate to what you are feeling right now, it took me almost 18 months after I was first diagnosed to move into remission. I had tried several meds, had several periods of hospitalization, pain was intense and my weight plummeted to 7 stone. I also had terrible problems with urgency and endured several "accidents" which just added to the whole anger thing, I also felt ashamed and dirty. I too had serious anxiety and I think the pain just makes that worse. Could you not take another pain killer, there are plenty to choose from. I tried to sleep as much as possible, difficult though if your pain isn't controlled. I eventually went into remission after loads of rest, patience and lack of stress. Doing too much will also make matters worse. Have you tried massage? that may relax you. What you could do with right now by the sounds of things is some real TLC, do you have great support from your family (so important) do thay know how you're feeling right now? Could you get more help?

It's important to put things into perspective and try and chill more.


Remission will come eventually, as others have said, be patient

Hope you're feeling better soon, keep us posted

 

[bayguy13]

I agree that remission will come eventually, but if you have a relapse - you will need to consider whether your quality of life would be better with or without surgery. I remember my last resection surgery. After many visits to the emergency room for partial blockages, I finally decided that I just couldn't take it any longer and persuaded my surgeon to go ahead and do a resection. After amost 16 years, I have a 1.5" stricture that is starting do drive me a bit crazy. I am now considering whether surgery is a viable option again.

 

[kskitt]

i know how u feel.

when i was ill and the docs didnt know what was wrong with me, i just felt so terrible and depressed that i just wanted to end it all, i dont actually know what kept me going.Its hard to be on so many pills, but if they can help me stay sane and well, then so be it.It took them over 7 months to find out was wrong with me, and i was ill for a while before i could admit to myself that something was wrong.

I really hope things go well for you and your condition improves.Just hang in there, you will get to the other side

 

[kskitt]

gnc chrons man - god how can you cope with 100+ pills a day, i think my combination of 10 a day is bad

 

[T kegin]

George,

I just posted something very similar. I have only had 2 Remicade infusions, and it is not working yet.

I agree, all the drugs just cause more problems, which means problems at work. It's a vicious circle.

 

[Mazen]

Yeah. I'm just in the middle or a recent flare after almost 3 years of somewhat of a remission. It's a wonder how easily you can drift back to that depressive mood again. In the ER I just wanted to scream and tell them to remove my diseased ileum at once; I couldn't stand the pain. Now I'm back on 5 meds (Prednisone, Cipro, Flagyl, Pentasa and Imuran) and feeling sooooo crappy. Today I had to also go back to work, but I can't even stay awake to do anything. I'm sooooooooo tired. Luckily I have an understanding manager, and I will leave early to sleep,


I know it's hard to have a positive outlook when you are flaring, and believe me I'm in the middle of it now, but I'm just trying to hope that remsiion will come again and try to see a light at the end of the tunnel.......

 

[Jvstin]

I'm just gonna throw this out there, and I wont be offended if nothing is said in reply to it or if it is trashed, but my girlfriend has RA pretty severely and last year she and a few others started an online forum and now they do regular chats via AIM where they all get together and vent with each other and became friends.
I'm still new here, so I don't know if that sorta goes on or not, but I think it would be nice for us to be able to chat together, perhaps make chat dates fro us to meet up and just talk. whine a bit and also talk about what we did that day.
the reason I bring this up is before my girlfriend really had no one but me to vent with, and I don't understand all of RA and how she feels, and she needed people who did, and now she has this little community they all seem to help each other without knowing it and gives them something to look forward to. plus it's always nice to care for more people.
sorry for this being a ramble guys, I like to talk if you haven't noticed.

 

[Kev]

Hey Jvstin... There are a few of us trying to do just that.. check out the old thread on when do people chat.. It seems to be one of those things we can't kickstart. I dunno why.. congrats to your GF and her RA group. The fact of the matter is that the more you're willing to put into a community, the more you can also get out of it

 

[TammySue62]

George
This really isn't you talking. Its the prednizone that makes you mad and depressed and multiple mood swings. It's a nasty drug but we are all stuck to it. I bet every single one of us have felt or been in your shoes several times. I just think to myself sure we go through hell and back several times but there are many people in this world alot worse off then us. When I get down like you which has been happening alot I just try and think of the good times and all the people I have helped and still am.
Venting is positive and a stress reliever.

Goodluck TAMMY