I just want to give up!

[Sam07301985]

Today the pain is really bad! I feel like the life is being sucked out of me. Im working two jobs and going to grad school and batteling this damn disease. Im at work now and i just want to cry because the pain is so severe. Ive tried everything im on medication ive completely overhauled my diet i dont understand why i cant stop the hurting. I guess i just needed to vent i know all of you undersand how I feel. Nobody around me has crohns and doesnt undersand why im always hurting and i hate being the person I am now the person thats always in pain and no fun to be around. I just want to be normal again.

 

[j.bug]

Hi Sam. I am sorry you're having such a miserable day. I know how you are feeling. Having this disease aids in losing a lot of friendships, and you certainly find who your real friends are. up until this last month, I was taking Dilauded for my pain. I have CD in my terminal ilium, and esophagus...I cant explain the pain with words. My GI docs wanted to taper me off the narcotics due to dependency. I never wanted to live a life where I am constantly stoned in order to not be in a ball crying in pain, and so I did it. I now can only take Gabapentin, Ultram, and OTCs like tylenol. It barely touches the pain. I have come across so many people that tell me that crohns should not hurt me like it does. So many think its nothing more than needing the restroom all the time. I am currently waiting to get into a pain clinic...I am desperately hoping they will be able to help me.

About a year before I was diagnosed, I was working two full time jobs, and was separted from my husband. My schedule was working an overnight shift until 7:30am, and heading straight to my day shift at my other job. I would usually be done with work at about 5pm, which left me very little time to sleep. I was under so much stress at that time, that I began my worst flare to date. After I had scopes done, I was told that I had more ulcers than they could count, going from my throat, down my esophagus, into my stomach, and through my small intestine. They thought that I had AIDS.

I spent about 3 weeks in the hospital after that on iv steroids, flagyl, and one other antibiotic that I cannot remember. I lost both jobs. My roommates were great in helping me out, and I took to selling things like my tvs, and clothes and such...but the stress was still great, and I yet again landed in the hospital. This time it was the Mayo hospital in Rochester MN. I was there for nearly two weeks.

Thats when my husband stepped back in. He hasnt left my side since. I am still flared, but on remi and pentasa and protonix and etc etc etc...but I AM slowly getting better.

So i guess, after all that rambling, lol, I am trying to say, KNOW that you are not alone. And please, for the sake of your body, and your mind...try try TRY, to slow down a bit. You need to rest, and minimize stress as much as possible. Its clear you are very determined, and working towards a major goal in your life, but once you reach that goal, you should be healthy enough to enjoy it!!!!

 

[Ihurt]

Hey Sam,

I am sorry you dealing with all this. I have not had a diagnosis yet, I am still going through all the testing. But I do know what it is like to have severe pain daily. I have other health issues as well as GI issues, some very debilitatingly painful. I cannot even tolerate pain meds, I have MCS(multiple chemical sensitivities) so I am either allergic to most meds or have really bad adverse reactions so I have to usually just suck it up and take the pain. I know that heat is a good friend of mine. Have you tried a heating pad or even one of those portable heat items like therma-wrap. When my gut is killing me I am glued to my heating pad. It does not cancel all the pain, but it takes an edge off at least.

Oooh yes, I lost most all my friends( well, or so I thought they were my friends), after I got sick. I still have a few friends, but again , they are sick with something or another so they know what it is like to be chronically ill. I have realized that the chronically ill people are not very well accepted among the healthy people for some reason. They just do not understand or get it. My own family( my brother and SIL) do not get it. They tell me stupid shit like " oh you would feel better if you wanted to"! I mean seriously!!! People are so ignorant sometimes.

I wish I had some worde of wisdom for ya. Just want you to know you are not alone out there. Are there any support groups in your area??? When I was diagnosed with IC ( a severely painful bladder disease), I searched the different sites online and found a support group that meets every month or so. I mean at least it got me to meet with people who also have my disease. I did not know anyone with IC before I went to that group. It is worth a try looking into it. Hang in there. Things will get better. Maybe try hooking up with a pain specialist. Maybe he/she could help you manage your pain better... Noone should ever have to suffer.....

Today the pain is really bad! I feel like the life is being sucked out of me. Im working two jobs and going to grad school and batteling this damn disease. Im at work now and i just want to cry because the pain is so severe. Ive tried everything im on medication ive completely overhauled my diet i dont understand why i cant stop the hurting. I guess i just needed to vent i know all of you undersand how I feel. Nobody around me has crohns and doesnt undersand why im always hurting and i hate being the person I am now the person thats always in pain and no fun to be around. I just want to be normal again.

 

[Perfer]

two jobs and school? thats hard for anyone! I have no idea how you manage that with crohns :O

its totally understandable the way you feel, I am really impressed you are able to do it at all.

 

[Sam07301985]

J.bug-I think one of my major problems is that I get no rest at all and it wears me out extremely bad. Thanks for the encouraging words.

Ihurt- I have been laying on a heating pad for most of the day that is one thing that does help me. Pain meds never really help at all. ANd i havnt lloked into local support groups but I think I will.

Perfer-Thank you for the kind words. Somedays I dont know how Im going to make it through the day but I keep going on and try to do the best I can. Its really hard Im not going to lie but I just keep looking to the future and I hope its going to pay off. And IM going to listen to your hyperlink on the piano music. Ive played Piano since I was a kid so I love piano solos. : )

 

[moogie]

God dang plague...

Sometimes we have to wonder what life would be like if we were not in pain all the time.

You should cut back on your activities. The stress of everything you have to do must not be helping you and the pain.

Good luck to you

 

[PlutoCronie]

J.bug-I think one of my major problems is that I get no rest at all and it wears me out extremely bad. Thanks for the encouraging words.

Ihurt- I have been laying on a heating pad for most of the day that is one thing that does help me. Pain meds never really help at all. ANd i havnt lloked into local support groups but I think I will.

Perfer-Thank you for the kind words. Somedays I dont know how Im going to make it through the day but I keep going on and try to do the best I can. Its really hard Im not going to lie but I just keep looking to the future and I hope its going to pay off. And IM going to listen to your hyperlink on the piano music. Ive played Piano since I was a kid so I love piano solos. : )

Hi, Sam ------ Yes, for me slowing down and getting enough sleep was very important while I was initially trying to get my CD under control. And since you like music, I can tell you that even though I always listen to music anyway, I now choose certain types that seem to be effective in healing. Oddly enough, certain types of jazz, especially the Latin Samba (syncopated) genre, have proven to help people who have a variety of ailments. Also, the more traditional types of meditation music, especially those that have a "drone" (sitar), are very good for balancing the body's energy centers. Interestingly, some classical music is not always the best because much of it conforms to the regimented, restrictive, 4/4 meter, and you need to be in a looser, dreamy zone (its called a "reverie" state, i.e. Debussy, Ravel), to really relax and heal; however, any type of music that helps you to feel good, is helpful. Lots of luck to you, PC:ghug:

 

[j.bug]

Like I said, don't give up on your goals...but you do need to heal, and to rest!! The longer you are flared, the more damage your disease is doing to your body. I worked around the clock, and found time to be with friends and family as well. My body was screaming at me daily! I refused to listen, and I still struggle with listening to it. Since I lost those two jobs, I have worked again, but I have found that my health, my disease, is so severe due to ignoring my body, that I am unable to work at all. I actually just got home from a 5 day stay in the hospital a couple of days ago. You know your body. I fully understand not wanting to listen to it. You want to live your life, and not let your disease run it for you. But please rest! Without rest, and time to heal, I know all too well, your disease will be able to take over and run your life...I don't even remember feeling well anymore.