Hopeless, sad, lonely, frustrated....need help

[suschex]

Well almost 5 weeks now on 40 mg of Prednisone and not really any better...feeling really, really hopeless, sad, lonely, frustrated, scared, etc. Oh, I am starting to get the moom face, acne, insomnia, jitters and bloating...lol!

My doctor wants to start Humira but my TB test came back as "indeterminate" and he is checking with an infectious disease specialits on what to do. It may mean 9 months of TB treatment before I can start on Humira. I would be able to try 6MP instead but he isn't thinking that is going to help since the CD is sever and long standing in my colon...he thinks it will take the biologic meds.

I have never known something to move more slowly in my life. I love my doctor but seriously sitting around taking pred for 5 weeks w/o impromvement is just insane.

And here is the kicker...I am one of those who has C and not the big D. Treatment is based on the big D though so since I have no D he said I don't meet the criteria for putting me back in the hospital for IV steroids since no D or bleeding...but I won't ever have the D b/c I have the C so how the heck does that make sense???????????? He said the only way to know what my CD is doing is to go in and look since i have no D but it's not like they will do a colonoscopy weekly or monthly so w/o D it will just look like i am not flaring even though we know I am based on my colonoscopy 5 weeks ago as well as the symptoms that haven't changed.

Seriously, how do I get some help? How can I be treated based on D when I don't have D?

I feel like just crying and giving up...............................

I normally can keep my chin up, look on the bright side, find the silver lineing, be positive, get up shower, put on make up and get dressed so no one can tell there is anyting wrong but I have to say, 5 weeks in I am not sure how much longer I can do this....................................HELP!!!!

 

[mizgarnet]

Suschex- remember the pred is making the situation worse emotionally. I nearly came unglued when I was on it. I had to take Ativan. I would be sitting at work and look at my office mate- he would point to the door and scream "out now". I would just burst into tears and he could see it coming. I would go home (only 1/2 mile away), cry and then go back to work. It is an emotional rollercoaster. As to the treatment - D vs. C- doctors drive me crazy. I do not have a reply to this that I can post. #$%^&^%% doctors....

Hang in there, kiddo. Keep pushing the doctor. And most of all...go into a quiet room, turn on some music, close the door, and pitch a good temper tantrum or crying jag. I used to jump in the shower and let my frustrations out. *Hugs*

Wendy

 

[lizzy]

hiya!
Sorry to hear you are having a hard time. I bet those doctors are thinking of a brilliant way to sort you out it might just take them a little while to come up with! Hang in there chicken.
xxx

 

[suschex]

Suschex- remember the pred is making the situation worse emotionally. I nearly came unglued when I was on it. I had to take Ativan. I would be sitting at work and look at my office mate- he would point to the door and scream "out now". I would just burst into tears and he could see it coming. I would go home (only 1/2 mile away), cry and then go back to work. It is an emotional rollercoaster. As to the treatment - D vs. C- doctors drive me crazy. I do not have a reply to this that I can post. #$%^&^%% doctors....

Hang in there, kiddo. Keep pushing the doctor. And most of all...go into a quiet room, turn on some music, close the door, and pitch a good temper tantrum or crying jag. I used to jump in the shower and let my frustrations out. *Hugs*

Wendy

Thank you for the kind words! The pred wasn't doing much as far as side effects until the last few days...now it seems the side effects physical and mental are starting up...not sure if this is normal for the side effects to start/increase the longer you are on it. What is Ativan? I take zoloft already and Tramadol for pain and Zofran for nausea.

 

[suschex]

hiya!
Sorry to hear you are having a hard time. I bet those doctors are thinking of a brilliant way to sort you out it might just take them a little while to come up with! Hang in there chicken.
xxx

Thank you for your kindness! I'm just starting to understand that I have been sick for so long and now will stay sick while they sort it out. That is such a strange concept....the chronic, no cure part of this thing.

 

[Emily]

Gosh it sucks that you are stuck on pred, seems like everyone has to "do their time" on pred, but I think it will pay off for you. You gotta wait it out till they clear the TB thing too. Hopefully once that's cleared and the pred is over everything will start to fall into place with Humira and whatnot.

2 things: For the TB indeterminate result, have you ever spent extended amounts of time in South America? My mom lived there for a while and when she got a positive TB skin test result her doc said he would have been surprised if it didnt come back like that! That first skin test they do is very basic and can give false positives for people who have lived in certain places and stuff. Hopefully they'll give you a more definitive test!

Also, I wonder if you could be constipated cause of the other stuff you take? For example tramadol is a pain med and pain meds can block you up. Who knows. Honestly I get blocked up about as often as I get D. It's not so uncommon, don't feel weird for not having D.
Anyway, I'm sorry you're so frustrated, hopefully things are only bad so that they can get better! You won't be on pred forever and your doc plans to get you on Humira which is a miracle drug in my opinion. Stay positive! <3

 

[John D]

I go in for my second surgery this monday and honestly just want to end this pain and bullshit forever.... but im hanging in there for the hopes that i will figure something out to make this go away! Im only 25 and already hate my life because of what this disease has done to me! This is my first time on a forum and it is actually feeling good to know there are others that care but sad to see that there are so many struggling! It does make me feel hopeless, but somehow we have to push on!

 

[Spooky1]

HI, Suschex and John D,

yes, it certainly feels like its life ruining. i understand how you both feel. Must say though, i was on high doses of Pred for many years as this was the top remedy, along with surgery. Times really have changed.

i threw my steroids in the bin and cut them just like that (had forgotten to come off carefully as i had been on them so long). but hey, i'd been awake for weeks on end! i experienced paranoia, yes the whole world was talking about me. of course no human would have anything else to talk about, would they? I never had moon face, i went to the loo even more and only put on weight after i got off them. They did nothing for the pain and D. my bones and joints hurt like hell, and if i dared kneel down on the floor well it took twice as long as the time i was kneeling just to get back up. the lower back and leg pain was disastrous and they literally did nothing for me. they were seemingly just a massive stimulant that i could not handle. i hated me on them so did away with them.

However, do not cut out steroids (i came to no harm that i can recall), but its NOT the done thing, so please don't. but do flumox the docs with the 'can you believe its not working'. prob they will up dose to 60mg. if you have moon face etc, then steroids are having some effect somewhere, but might be very slow to heal the crohns. but if they really aren't working tell doc you want something different (if there is something). i seemed to have failed everything although they not mentioned infliximab yet.

yes, the pain is excruciating. i visited my sister who is going through chemo at the moment and all i did was sit there in agony and visit her loo a great deal, but hey, family understand at least. its great to see her no matter what the pain or D.

Life is definitely one huge struggle, i understand you both entirely. unfortunately i cannot identify with the C rather than the D word. i have no advice there sorry suschex. good luck with surgery John D. i'm thinking of you for Monday.

best wishes to both.

 

[ghostlizard]

time for a second (or third) opinion

Thank you for the kind words! The pred wasn't doing much as far as side effects until the last few days...now it seems the side effects physical and mental are starting up...not sure if this is normal for the side effects to start/increase the longer you are on it. What is Ativan? I take zoloft already and Tramadol for pain and Zofran for nausea.

Hi suschex! I know exactly how you feel. Prednisone is the Devil! But your story suggests that you need to seek a better doctor (or two). My doctors never wait 5 weeks w/o good results before trying something else. Ativan is an anti-anxiety drug in the same class as Valium. It may help with the emotional effects of the Prednisone, but if the Pred. isn't working maybe you should proactively 'suggest' to your doctor that he try something else NOW! And yes, the side effects of Prednisone do worsen with time. I hope this helps. I'm very sorry that you're suffering so much at the moment, but flares do end...this one will, too.

 

[suschex]

I'm sorry I didn't respond until now and I'm sorry I am not replying to each of you individually right now but I will soon. I don't even have words to express my thanks to everyone for the messages...I was at such a low place and it really was what made me able to keep my chin up to know that there were so many of you who cared and understood. I am still feeling so poorly physically but much better mentally and that makes a huge difference.

I am so thankful to have found this forum...couldn't get throught this initial diagnosis and stuff without this place!

Suzanne

 

[robbo87]

Glad to see you are mentally starting to feel better! Keep hanging on in there! Prednisone seems to be a great drug physically in terms of treating inflammation but from my own experiences i know exactly where you are coming from emotionally. And especially being on a high dose for such a long period can only make things worse! and the lack of sleep only makes the depression/anxiety that pred causes even worse! Hope you get everything sorted as soon as possible and can get back on your feet

 

[KaLa]

I don't know if anyone else has mentioned this, but Zofran can give you horrible constipation. I took it during my second pregnancy for terrible morning (all day) sickness. I was so constipated, that I could only take about 1/4 of the normal dose and had to take stool softeners every day. I am never constipated (before or since then). I hope that you are continuing to feel better!

 

[KaLa]

Oh, I forgot to mention. I take about 1/8 tsp of nutmeg mixed in with equal parts pomegranate juice and water. The nutmeg helps tremendously with nausea!

 

[Sunny Gal]

Don't give up

I go in for my second surgery this monday and honestly just want to end this pain and bullshit forever.... but im hanging in there for the hopes that i will figure something out to make this go away! Im only 25 and already hate my life because of what this disease has done to me! This is my first time on a forum and it is actually feeling good to know there are others that care but sad to see that there are so many struggling! It does make me feel hopeless, but somehow we have to push on!

Dear John so sorry to hear all you are going through. Do you consider that what you eat and our coping with stress can also help or make this worse?

 

[Sunny Gal]

what is D and C

wha tdo those initials stand for. i am new here

Well almost 5 weeks now on 40 mg of Prednisone and not really any better...feeling really, really hopeless, sad, lonely, frustrated, scared, etc. Oh, I am starting to get the moom face, acne, insomnia, jitters and bloating...lol!

My doctor wants to start Humira but my TB test came back as "indeterminate" and he is checking with an infectious disease specialits on what to do. It may mean 9 months of TB treatment before I can start on Humira. I would be able to try 6MP instead but he isn't thinking that is going to help since the CD is sever and long standing in my colon...he thinks it will take the biologic meds.

I have never known something to move more slowly in my life. I love my doctor but seriously sitting around taking pred for 5 weeks w/o impromvement is just insane.

And here is the kicker...I am one of those who has C and not the big D. Treatment is based on the big D though so since I have no D he said I don't meet the criteria for putting me back in the hospital for IV steroids since no D or bleeding...but I won't ever have the D b/c I have the C so how the heck does that make sense???????????? He said the only way to know what my CD is doing is to go in and look since i have no D but it's not like they will do a colonoscopy weekly or monthly so w/o D it will just look like i am not flaring even though we know I am based on my colonoscopy 5 weeks ago as well as the symptoms that haven't changed.

Seriously, how do I get some help? How can I be treated based on D when I don't have D?

I feel like just crying and giving up...............................

I normally can keep my chin up, look on the bright side, find the silver lineing, be positive, get up shower, put on make up and get dressed so no one can tell there is anyting wrong but I have to say, 5 weeks in I am not sure how much longer I can do this....................................HELP!!!!

 

[suschex]

wha tdo those initials stand for. i am new here

D = diarrhea
C = constipation


Glad you found the forum...it's a great place!

 

[McStew]

Hi Suschex,
I'm so sorry to hear you've been feeling this way. This disease is certainly a rollercoaster to say the least. Some days I feel like I can handle it, other days I just feel too tired/frustrated/stressed to deal with it. Just know there are many feeling the same way, I suppose what helps is to know that things do get better, even if it's for a few days, and it's completely natural to have all of these emotions, especially when all you want is to feel human again. All the best to you.