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A place to talk Support Group

I'm 19 and on Humira, have been for 2 years. I find it works best done on the abdomin. I switch sides every times. I do mine weekly. Though they worked great for the first year, I've been so ill for the second. I haven't eaten in 3 days, I've been to the bathroom 10 times already today. I just want this to be over. My past 5 years have been hell and I'm never going to be happy 😞
 
I'm 19 and on Humira, have been for 2 years. I find it works best done on the abdomin. I switch sides every times. I do mine weekly. Though they worked great for the first year, I've been so ill for the second. I haven't eaten in 3 days, I've been to the bathroom 10 times already today. I just want this to be over. My past 5 years have been hell and I'm never going to be happy 😞
Are you on a liquid diet? I hope you get some relief soon. Does your doctor know what is going on right now?
 
Are you on a liquid diet? I hope you get some relief soon. Does your doctor know what is going on right now?
No I'm not on a liquid diet, I wouldn't know where or how to start. Yes my doctor is aware, but they don't do anything but book me an appointment and I just have to sit and wait. If it gets real bad I go to emergency obviously, but they don't do much but give me pain relief.

Tomorrow I'm getting a 3 hour infusion for Remicade, my doctor thinks it might work better than Humira on a higher dosage. I also have an ultra sound and an MRI coming up. I recently had a colonoscopy and my results came back that I'd be needing a sigmoid colostomy. I'm so drained. This disease is ruining my life and there's nothing I can do but sit and wait...
 
No I'm not on a liquid diet, I wouldn't know where or how to start. Yes my doctor is aware, but they don't do anything but book me an appointment and I just have to sit and wait. If it gets real bad I go to emergency obviously, but they don't do much but give me pain relief.

Tomorrow I'm getting a 3 hour infusion for Remicade, my doctor thinks it might work better than Humira on a higher dosage. I also have an ultra sound and an MRI coming up. I recently had a colonoscopy and my results came back that I'd be needing a sigmoid colostomy. I'm so drained. This disease is ruining my life and there's nothing I can do but sit and wait...
Humira worked great on me until I became allergic. It works so well on so many I pray it works on you.

I do a lot of smoothies it helps with calming down my runs. More cheese helps. If find that diet makes a huge difference to me. If I have oils or dairy it is bad. Create a food diary and only change one change at a time. Take care kiddo.
 
Humira worked great on me until I became allergic. It works so well on so many I pray it works on you.

I do a lot of smoothies it helps with calming down my runs. More cheese helps. If find that diet makes a huge difference to me. If I have oils or dairy it is bad. Create a food diary and only change one change at a time. Take care kiddo.
After 2 years in a humira it doesn't seem it's working. So changing to Remicade.

Thank you will do ☺
 
Just got out of a month long hospital stay for a pretty bad crohn's flare,infections and pg wounds.So much fun.
 
Glad I found this Hell crohns has got the better of me. Laid up in the hospital for about two weeks for bring malnourished and develop edema cause of it and now I have a bowel to bladder fistula. Now what else is going to happen. Crohns is so very cruel.
 
Man I am glad that I found this just spent about two weeks in the hospital for being malnourished and developed edema in both legs and hooked up to TPN for one week. And now I have a bowel to bladder fistula with Leakey poop coming out. Crohns is evil to me right now.
 

cmack

Moderator
Staff member
4ever,

As another member put it to me, "Crohn's is war and war is hell!" I think he was right. He also said "Getting knocked down is nothing, getting back up is everything." I believe in these words.

cmack
 
Hi Tubes,

Must be nice to be back home. I always felt like I was in jail or something while in the hospital. Hope you feel better.

Wishing you well,

cmack
It's been about 5 years since I had to be admitted but the 15 or so years before that I practically lived at the hospital with stays averaging 6 to 8 weeks at a time then be out for 2 or 3 days and then back in the hospital for another month.I wasn't allowed out of my bed for pretty much all of my stay seeing I was hooked up to a lot of stuff but hospital wifi has improved a lot in 5 years so that was a plus.Looking forward to actually sleeping tonight.

Thank you for the well wishes.
 
Thanks y'all I will look at crohns like being in war,everyone gets knocked down a few times in life but you still get back up onto your two feet again. Thanks guys.
 
Same here ronroush7 supporting you to bro, that's what I like about this form we all support each other in times of hard ship. Hell y'all are my friends on here I don't have any at home cause they got scared when I got the diagnosed with crohns the ran off never heard from again.
 

fuzzy butterfly

Well-known member
Me too... what a set of wimps 😠. Guess you find your true friends when things like that happen.
Well i say they were not worthy of your friendship in that case.
Best wishes πŸ’•
 
Yeah I don't cause they wasn't really truly friend's true friends stand by each other through thick and thin. Oh well there loss not mine you know.
 
Your very right GI Jane, now I always keep my guard up when I meet new people. I have been hurt so many times, sometimes I don't won't to tell them but always find out in the long run cause you can't go out all the time to chill. But the best friends you can gave have is family, my mom and pops has been by my side through thick and thin and they always available. But thanks for the song gi Jane, and thank you for your service for our wonderful country... peace.
 
That's my kinda dance music back in the day bro. I always had it on my mind but could not figure out what the song was. Thanks go Jane.
 
Cmack
Are you doing good today buddy? Hope you are ate a good lunch and watching a movie untill time to go to the pain clinic, my gi is sending me to a pain clinic. Have you ever been?
 

cmack

Moderator
Staff member
4ever,

I'm hanging in there bud. I just had some vegetable soup. I'm glad you are going to the pain clinic. That was the kind of music that I danced too as well bud.

Keep your chin up,

cmack
 

cmack

Moderator
Staff member
Me too... what a set of wimps 😠. Guess you find your true friends when things like that happen.
Well i say they were not worthy of your friendship in that case.
Best wishes πŸ’•
That's right Fuzz. I couldn't agree more. Been there before. As soon as you are no fun anymore you get dropped like a dirty shirt. I learned quick who the real friends were.
 

cmack

Moderator
Staff member
4ever,

No I saw a pain specialist when I was in the hospital. Pain clinic will be similar. It makes a big difference once you see the pain specialists. A nurse of mine suggested it to me. I hope you tell them how bad it hurts and where because they will help you better. Make a list of your pains and when and how they affect your life. Then you won't forget anything when you get there.

cmack
 

cmack

Moderator
Staff member
The only thing wrong here is I have a sick old dog. She has irritable bowels right now so I'm like a nurse to her. Takes a lot of energy. She has been on Gatorade at the advice of the vet. Also white rice as well with little pieces of roast beef all diced up very small.
 
Glad to hear your dog is doing ok buddy, I lost my two ferrets a year ago from old age it hurt like hell bro. Cryed my eyes out, but loads of good times with them.
 
Pain clinic was ok they wanted to treat my edema legs so I can have a comfortable way of life until my protein, and ambion levels come up so the Eden goes away. That's cool I guess.
 

fuzzy butterfly

Well-known member
That's right Fuzz. I couldn't agree more. Been there before. As soon as you are no fun anymore you get dropped like a dirty shirt. I learned quick who the real friends were.
Yep me too bud... still you will have real friends here. Well in virtual reality lol πŸ˜†πŸ˜†
But seriously we are here for you always and we do understand exactly how you feel as we have /are going through the same. Iv been in remission for just short of 3yrs but i sure as hell is hot remember how bad it can be. Keep smiling my friend πŸ’•:hug:
 
Yep me too bud... still you will have real friends here. Well in virtual reality lol πŸ˜†πŸ˜†
But seriously we are here for you always and we do understand exactly how you feel as we have /are going through the same. Iv been in remission for just short of 3yrs but i sure as hell is hot remember how bad it can be. Keep smiling my friend πŸ’•:hug:
Agree
 

fuzzy butterfly

Well-known member
Aw sorry to hear your feeling rough my friend. Hope the doctor can help you feel much better very soon. Sending love n hugs πŸ’•:hug:
 
I tried to get into a pain clinic that are so backlogged they wouldn't even make me an appt. I'm contemplating finding a acupressurist as I can't do the acupuncture any more. Maybe hot stone massage if I can find one safe to handle spinal injury people too.
 
I tried to get into a pain clinic that are so backlogged they wouldn't even make me an appt. I'm contemplating finding a acupressurist as I can't do the acupuncture any more. Maybe hot stone massage if I can find one safe to handle spinal injury people too.
Accupuncture is weekly for me and I don't get the swelling in my legs I used to get.
 
Yeah buddy o really don't know how my doctor got me in so quick, cause they were slammed in there it took me one 55 minutes just to get to see a pain doctor and the another 35 minutes of talk time and then out the door. But I would keep trying to get into one bro.
 
4ever,

No I saw a pain specialist when I was in the hospital. Pain clinic will be similar. It makes a big difference once you see the pain specialists. A nurse of mine suggested it to me. I hope you tell them how bad it hurts and where because they will help you better. Make a list of your pains and when and how they affect your life. Then you won't forget anything when you get there.

cmack
I have never once... heard about a pain specialist. Are you meaning to tell me that thise times of agony... they could of been avoided? Or helped?!
 

fuzzy butterfly

Well-known member
Iv never had one either. Maybe i should look into that. Painkillers dont really cut it anymore. Do they offer anything other than painkillers ? πŸ’•
 
About 4 years ago I had never heard of a pain specialist and it took me almost a year to make an appointment but once I started going there it was really helpful.Everytime I go it's super packed.
 
Yeah this is my first time going but it is very helpful, cause doctors don't like to prescribe pain meds cause of so many people abuse the system, so if they think you need something they will give you a referral to the pain clinic, I was surprised how fast they got me in.
 
An epsom salt and baking soda bath very hot helps with my pain.....if I could only invent a space suit that keeps that fluid around my body all the time lol.....but at least it helps for awhile.
 
Sounds great GIJane I will try it out after I get back from my GI doctor appointment. I know that people have used that for many different things. So yeah I will try it out thanks bro.
 

cmack

Moderator
Staff member
chronicallypositive,

I never knew about it either until a nurse told me. They can help a lot. I think they offer a lot more than just opiates. Anybody out there suffering in pain you should ask the Doc you see for a referral to a pain specialist. I'm not on anything too heavy duty or addictive. They had me on some pretty good stuff while in hospital though. I had a button that I could press to give me a direct IV shot of morphine. The machine is preset by the specialist and will only allow a certain safe dosage. I never did max it out but it was really helpful after surgery.

cmack,
 

cmack

Moderator
Staff member
GI Jane,

Have you ever tried magnesium bisglycinate supplements? The epsom salts are high in magnesium and as I understand it that(and the heat) is what helps with the aches and pains. My chiropractor suggested the Metagenics brand and she said we are almost all deficient in this. It regulates calcium levels and deposits that can be in your joints. It makes a lot of my aches and pains go away from taking it. It helped my father as well. Maybe ask if it jives with your meds. It's called Metagenics "Mag Glycinate" and says, "Helps to maintain proper muscle function and tissue formation" on the bottle.

Just a thought,

cmack

P.S. It is one of the most easily absorbed types of magnesium. Not all magnesium supplements are so easily absorbed.
 

fuzzy butterfly

Well-known member
I have a ibrofen gel to apply topicaly also along with my painkillers. The thing is its not really severe most of the time just an annoying dull constant ache. Though some days its pretty bad . Today is one of those days...i have a pretty heavy strenuous job and that does'nt help. May be my GP can refer me amd see what comes of it. ☺
Thanks for your help πŸ’•πŸ’•
 
I am currently on magnesium supplements, been on them for about on week, yeah as for pain I am morphine 15mg just for my legs. Cmack what's up buddy after supper I hit you up with some news that my gi gave me today.
 

cmack

Moderator
Staff member
4ever,

I'm good thanks, be sure to fill me in. I'll be back and forth. I'm not going too far so yeah any time pretty much works for me. Hope you are OK buddy.

All the best,

cmack
 
GI Jane,

Have you ever tried magnesium bisglycinate supplements? The epsom salts are high in magnesium and as I understand it that(and the heat) is what helps with the aches and pains. My chiropractor suggested the Metagenics brand and she said we are almost all deficient in this. It regulates calcium levels and deposits that can be in your joints. It makes a lot of my aches and pains go away from taking it. It helped my father as well. Maybe ask if it jives with your meds. It's called Metagenics "Mag Glycinate" and says, "Helps to maintain proper muscle function and tissue formation" on the bottle.

Just a thought,

cmack

P.S. It is one of the most easily absorbed types of magnesium. Not all magnesium supplements are so easily absorbed.
I will check into it for sure. Most magnesiums will cause the runs with me but if it's easier it's worth a shot for sure.
 
Cmack Yeah buddy your right about 30 mins after taking magnesiums tablet I get the runs, but I get the prescription kind. Can you get them OTC bro?
 
I have been reading up on the probiotic VSL #3 deffently going to ask and see if I can take them. I should be able to when u finish these darn antibiotics.
 
Thanks cmack definitely going to copy the link and watch the video on it. You know it's like all medicine out cause a lot more problems then it is treating. LoL...
 

cmack

Moderator
Staff member
Probably the food was to blame. If I ate turkey I might have an issue. The grain they feed them is full of glyphosate. Also known as roundup. It is systemic. It says on the bottle not to consume it. Why do they spray it on GMO crops? It is still there when we eat it. It actually is a very powerful antibiotic. Or it can cause leaky gut syndrome. Which I think was a factor in my very first serious bout.
 
Cmack is right when I used to eat turkey in the ready to eat, tv dinner I used to have horrible stomach pain just like a flair up. But now I can eat whole turkey just like you fix for the holiday it all right... just my two cents buddy. Hope you get to feeling fine bro....
 
Do you have pain ronroush? Or do you just have to run to the bathroom a lot buddy. Hell I ate some chocolate two days ago a boy I had to run buddy, I thought it was the antibiotics untill I figured it out. Hey buddy look up God under stands so he won't hold it against you for missing church.
 
Heard that buddy I know that running to the bathroom sucks. I remember going like 30 times a day. Deffently hope you get back on your feet buddy.. sending a good prayer your way.
 
Thoughts and prayers for you. Turkey doesn't upset me as long as it's in a small amount. Now vitamin water you can drink too much of and make yourself sick my son in law was doing that so careful on that one.
 
Me to I was drinking a lot of vitamin water about three years ago. Man I got so darn sick you wouldn't believe. Ron hope your feeling better this morning bro...
 
How are you feeling today ron? Hope your feeling somewhat better today. Hey Ron I need to ask have taken immune modulator IV therapy before? They are starting me on that along with remicade in the morning. Just wanted to see what to expect I never heard of immune modulator befour.
 
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