I need support like a pair of double D's :(

[25times]

This might be long. I apologize in advance. I need to write. And I need people to read it. Who understand. I'm feeling very emotional from the pred, and I'm having a bit of a rough time. But let me tell you about the good first.
I just turned 21. My birthday party was incredible. I was surrounded by my family and close friends, tons of food, and I felt relatively good all day.
Also, my disability was approved. I'm literally thanking god right now. Perfect timing, amazing birthday present, and what a weight off my athritic shoulders lol.
Now the bad. I'm definitely flaring again. My pain is through the roof, and I have two painkillers left. My GI's office won't be open until tuesday. I can not legally get any more percocet. I'm so scared. All I can think about is how bad tomorrow is going to be. And the next day. And the next. All my other symptoms are back, too. I'm currently on 30mgs of prednisone and 150 mgs of imuran. I'm pretty sure I just need to increase my pred back up, because I felt incredible on 40mgs. Like I didn't even have crohns.
So now, I'm sick again, and there's nothing I can do about it for two days. I could go to the hospital, but I've been in there every month since April. I hate it so much. I will go if my pain gets any worse.
I'm also a little depressed. I'm so sick of being sick. I'm sick of you guys being sick too. I'm sick of sickness in general. I hate this. I hate what my life has become. Everyone asking me how I'm feeling. I've started to lie and say "I'm good" so that I won't have to explain how I'm feeling and having people fuss over me. "Are you sure you should be eating that?" Watching everything I do, flinching when I stand up.. It makes me feel like shit.
I know, I'm rambling on. I'm sorry. I haven't slept since Friday. I hate prednisone. The thought of having to increase my dose again just sucks so bad. I don't wanna look like a chubby, red, sweaty butthead anymore. No one understands what I'm going through, as cliche as it sounds. I wish I knew someone in real life who's going through the same kind of thing. I love this website, it has really helped me through alot of things. But talking to someone one on one about it would be nice too.
Ok, I think I'm done for now haha. Again, sorry for rambling and being a lame depressed debbie downer. I'm sure you guys will bring me back up to a positive penny attitude
Hope everyone is feeling alright today!

 

[Lydia]

If I were you I would take more pred. I would go back to the dosage I felt good at. I am guessing you havent been on imuran long enough to do anything for the crohns. Remicade was a godsend for me. Not so much now, but it really did work some miracles in my body.

With pred I always feel good at high doses but turning into a bipolar maniac when I start tapering.

I live in Alberta, PM me if you want my number to talk to someone IRL. I have free long distance.

I'm so sick of being sick. I'm sick of you guys being sick too. I'm sick of sickness in general. I hate this. I hate what my life has become.

Me too lately.

 

[Jefferson]

Hey Samantha,

I wish I had words of wisdom to snap you out of your downward spiral. I can offer you my support and a hug. I think it would help immensely to talk to someone so hit Lydia up for some conversation. Plus look at that lil one on Lydias post, that has to induce a smile!!!!

Happy belated birthday! Sending good karma your way...

Lots of support too!

Jeff

 

[allieinwonder]

I am so sorry you are feeling so down. Don't feel bad about ranting, we all need to do that every once in a while! As you know from my thread I'm not doing well either, so know that someone else feels the same way and is your virtual shoulder to cry on if you need it.

I agree with Lydia, I would up the pred if I were you. I know the side effects suck (I get insomnia from my tramadol) but sometimes feeling better is better for you mentally than sleep! I would also call your GI and tell him how you are doing.

As for the pain meds...that really sucks. I actually get bad anxiety about running out of pain meds, because they are the only reason I have survived as long as I have. The last time I got down to a couple left I ended up asking my GP to give me more at an appointment that wasn't for my undiagnosed IBD, but for a pap smear, lol. Do you at least have any tramadol left? I know that isn't as effective, but it could at least take the edge off.

I completely understand feeling tired of all this. I am in the same boat right now....but we will all get through this, we just have to take it one day at a time!
:hug:

 

[Nico85]

When i feel as bad as you i just think of people in a worst state than you, at this time i bet your thinking your the sickest person on the planet but your really not. you have a dodgy bowel, but there are people out there who have lost limbs, blind, wheelchair bound and are dying of cancer.. people much younger than yourself that have had there lives basically taken from them and are now just a shell!

Just man up and go to the hospital and get some pain killers and stop feeling sorry for yourself. We have all went through what your going through but you will get better with your meds.

Chin up!

 

[bluedrops]

I feel for you! I am on 150mgs of Imuran and was originally on 40mgs of Pred. I am weaning off and did great till day 2 after stopping. My pain went through the roof and I was miserable! I started the prednisone again at a very small dose..like 1 mg! Lol Believe it or not that helped! That tells me my body for now still needs some steriod until we figure out whats going on. Also, I realized I took the medicine for granted eating unfriendly foods because... well I could finally! I took Remicade and it was wonderful but on my 5th infusion I had a severe allergic reaction. I am waiting on Humira but with fear. I know it seems this stuff will never end but it gets better and then worse then better. As cheesy as it sounds I love to tell myself on bad days that I have this disease and it doesn't have me!!! Feel better and your in my prayers.

 

[25times]

Thanks everyone. I still feel like crap today, but I think I'm gonna try to to wait it out until Tuesday, call my GI, and possibly go back up on the pred. If it's gonna make me feel better, I can deal with the side effects. I just wanna feel better.

 

[25times]

Happy birthday Andi! I hope you do something awesome this week.

I just left a message for my GI, letting him know my pain has reached an 8, I'm having stomach pain, joint pain, and what feels like bone pain (though I'm sure that's my joints, too.) Also, the diarrhea just started up again. First time since the beginning of july. That sucks. I've been feeling it coming for the past few days but I think I was a little backed up from eating badly. I won't hear back from the hurse until tuesday, so I'm hoping I can tough it out til then. I don't want to be admitted to the hospital again, and if I go to the er, they will want to admit me. My bloodpressure is either waaay up or waaay down, and my heart rate is super fast. Plus I have a low grade fever and chills. They always admit me when I'm having those symptoms. I was retested for c-diff last week, and I get the results this week. I think it's positive, because my GP's office sent me a letter saying that I had to come in to discuss my recent test results. Plus I have the worst smelling gas and bowel movements. And left side pain. Ahhhhh this is so lame. I guess I should start downloading movies to watch while I'm incarcerated

 

[Nico85]

Pull yourself together, if you were that ill then you wouldnt be able to type out such a dramatic story for us all would you

 

[allieinwonder]

Hopefully they will get back to you soon!!!

 

[25times]

Pull yourself together, if you were that ill then you wouldnt be able to type out such a dramatic story for us all would you

Lol you better be joking. Like I said, I had two painkillers left. So I took them. Obviously, I'm feeling better now. But once they wear off, that's it.
I'm gonna see how it goes, but if I know my body, I'll be heading to the hospital tonight. That's what my GI's office is going to tell me to do anyways. Hopefully I can see my GI while I'm in there, he can up my dose of pred, test for infections, and get me on remicade within the next few days. He has really high hopes for remicade and I, so I guess I do too.

Sorry if this thread turned into a "woe is me" type thing. That wasn't my intention. I like to write when I'm upset or scared, and nobody reads my blog haha. I'm not looking for pity or anything, just somewhere to get my feelings out and have someone actually read them. I'm feeling better (emotionally) and I really appreciate everyones replies. Except yours, nico. hahaha just kidding, I appreciate a good (metaphorical) kick in the ass every now and then. We all need that sometimes.

 

[allieinwonder]

You have no reason to be sorry! Crohns can be so painful, and it gets really tiring to go to the hospital again and again and again. I personally know that this forum has helped me a ton getting through it, since my husband and family, even though they love me and try and understand, they will never understand what it means to go through this.

 

[Nico85]

lol trust me when i say this... you will get nowhere by feeling sorry for yourself and everyone feeling sorry for you, you dont want to be the 'ill one'! Just give yourself a kick up the backside and tell yourself that its not gonna kill you or shorten your life. You have a dodgy bowel and a bit of pain. yes its not great but your alright! OK?

 

[Jer's Girl]

Congratulations on your birthday and getting your disability approved! That can be an incredibly hard thing to do with Crohns. I am happy for you, and a little jealous!

I’m so sorry you are flaring. When this disease hurts our bodies, it goes for the whole thing, even our spirits sometimes! It is hard not to be sad sometimes.

I’m so glad that you have decided to go to the ER. It is awful, but at least you can get pain meds there.

I HATE when people try to tell me what to do or eat with this disease too. They just don’t get it. I know my body, and I know what is going to hurt, and what is going to help, and I also know that sometimes everything is going to hurt, but that doesn’t mean I can just not ever eat again!

Have you looked into support groups in your area? I met a girl with Crohns for the first time this year, and I felt as if I was meeting a unicorn. You know, something I had heard of (another person with Crohns), but I never actually knew for sure existed! It was so helpful! You should look on line, or ask your GI for ideas.

Good luck honey. We are all here for you, and we have been through it all too. Thinking of you.

Nico, your comments are not helpful. Everyone has different symptoms with Crohns and just because you haven’t been in incredible pain and almost died from it as some of us have, doesn’t mean that others haven’t. Crohns isn’t just a dodgy bowel okay? We all need a place to vent and be heard without being made to feel like we are whining. We get enough of that from people who don’t have this disease and there is no place for it here.

 

[scottmyster]

hi there, i have had crohn''s for 21 years now and recently in flare up stage and on predisone. There is nothing to me sorry for your pain is real if it gets bad enough go to the hospital and try to get a prescription for more pain meds. The doctors there should know the pain your in. tell them the perc's work for you and you need a prescription temporally till you see your gp.

 

[25times]

Thank you, Jers girl. I agree. Crohns is not a "dodgy bowel" and I'm not just having "some pain and diarrhea." I would kill for just "some pain and diarrhea."
I'm glad that alot of people don't have to deal with the systemic symptoms of crohns, but I do. I have strictures, which cause IMMENSE pain when anything passes through them. I have rheumatoid arthritis, which makes my bones, muscles and joints feel like they are trying to crawl out of my body. It is also causing my joints to rapidly deteriorate. I'm severely anemic and allergic to iron infusions. I get eye inflammation, perianal ulcers, fissures, I've had a rectal prolapse.. I get terrible heartburn, bloating like you wouldn't believe, and I also have a condition that could cause my spine to fuse together and put me in a wheelchair for the rest of my life. So I understand what you mean when you say pull yourself together. But I spent my entire life being sick with this, and being told to "pull myself together." Maybe I need a little time to dwell, have a pity party, and whine. I think I deserve that. I think everyone deserves that. Other than this disease, my life is relatively good. And I thank god everyday for that. I'm so grateful for my family, friends, boyfriend.. But I'm a very sick person. And it took me a long time to admit that. Please don't try to make me feel guilty for feeling bad for myself. I'm 21 years old and my entire life has changed over the course of 6 months. It's alot to take in, and alot to be ok with. I'm doing my best, but sometimes I just need to vent, and worry, and express my feelings.

I phoned my local crohns and colitis foundation chapter, and left a message. Hopefully they have some group meetings coming up and I can meet some people like us. We are pretty awesome, after all. haha

 

[Nico85]

Thank you, Jers girl. I agree. Crohns is not a "dodgy bowel" and I'm not just having "some pain and diarrhea." I would kill for just "some pain and diarrhea."
I'm glad that alot of people don't have to deal with the systemic symptoms of crohns, but I do. I have strictures, which cause IMMENSE pain when anything passes through them. I have rheumatoid arthritis, which makes my bones, muscles and joints feel like they are trying to crawl out of my body. It is also causing my joints to rapidly deteriorate. I'm severely anemic and allergic to iron infusions. I get eye inflammation, perianal ulcers, fissures, I've had a rectal prolapse.. I get terrible heartburn, bloating like you wouldn't believe, and I also have a condition that could cause my spine to fuse together and put me in a wheelchair for the rest of my life. So I understand what you mean when you say pull yourself together. But I spent my entire life being sick with this, and being told to "pull myself together." Maybe I need a little time to dwell, have a pity party, and whine. I think I deserve that. I think everyone deserves that. Other than this disease, my life is relatively good. And I thank god everyday for that. I'm so grateful for my family, friends, boyfriend.. But I'm a very sick person. And it took me a long time to admit that. Please don't try to make me feel guilty for feeling bad for myself. I'm 21 years old and my entire life has changed over the course of 6 months. It's alot to take in, and alot to be ok with. I'm doing my best, but sometimes I just need to vent, and worry, and express my feelings.

I phoned my local crohns and colitis foundation chapter, and left a message. Hopefully they have some group meetings coming up and I can meet some people like us. We are pretty awesome, after all. haha

Your not a 'very sick person' ... a very sick person who has lost mobility and cant do anything for them selfs... a very sick person is someone with a disease that will eventually kill them.
You have a crohnic illness that can be treated and managed.

Ive had a killer sore back for 6 years and my doctor also said i had athritus and gave me meds for it. Then a year later i went to a bone specialist who said there was nothing wrong with my back and i just needed more excersise lol!

You sound like a bit of a hypocondriate

 

[Grumbletum]

Nico, either you have a very sarcastic sense of humour or you are being totally insensitive. This is a support forum, not a place where someone should feel under attack when they are obviously very unwell and need some empathy.
You have made your point, now leave it be - stop hijacking this thread. You have made other, more valuable contributions to the forum, so I don't know why you are doing this, but if it continues, then I'm afraid I feel that this type of behaviour needs to be reported to forum admin.

 

[Nico85]

Im sorry your so sensitive, im actually trying to help her in the way i was helped. I used to sit every day and night feeling sorry for myself and everyone feeling sorry for me being ill etc. until one day my gran said to me "listen.... there are people that are paralysed from the neck down and people that are brain dead and you are sitting moaping about your sore stomach and running to the toilet... get up of your arse son and stop feeling sorry for yourself"
After that day i did that exactly and before i knew it my whole thinking changed and never felt sorry for myself and started having a normal life again. i believe this way of thinking and the fack my gran came from a generation of people who got on with thing, actually helped me get myself my life back and into remission.

I was trying this tactic so that someone else would also benefit from it.

Its not that im insentitive, if anyone knows what shes going through its me.

 

[handle]

(Hey Nico85 - I think Grumbletum has expressed very well what many of us are feeling about these posts of yours. We are all pretty tough on here, and have been through hell. The old 'stop feeling sorry for yourself' stuff is not useful, it's actually hurtful in this sense since we're already doing our utmost to survive.
I think it was the well directed and personalised love from your gran, and your love for her, that inspired you more than the simple words themselves! That's something to treasure between you and her.)

Hope you feel better soon Samantha. Take care.

 

[scottmyster]

hey samantha, i know how you feel i went through the same process when i first got diagnosed with this terrible stuff. i felt like crap i could eat anything. couldn't go to WR. Normally and it got me down i have also got BP(manic depression) so, it's a challenge and a up hill at that, but don't let it get you down it will only make you worse. your not whining, your just tell us how you feel and there is nothing wrong with that, we are here for you every step of the way and i hope you feel better soon. get you feet planted and stay strong. best wishes

 

[DustyKat]

Your not a 'very sick person' ... a very sick person who has lost mobility and cant do anything for them selfs... a very sick person is someone with a disease that will eventually kill them.
You have a crohnic illness that can be treated and managed.

I don't know that illness can be categorised so easily. It is too simplistic to say to that to be very sick you must die. It is more than possible to be extremely ill and not have death as an eventual outcome, you instead have a living hell.

Chronic disease is a very debilitating illness in its own right. It produces co morbidities that only add to the stress and despair that people feel each day. Crohns disease is chronic and yes it can be treated and managed but it can also kill. Just bear in mind that CD comes in more than one form and of course affects people in varying degrees. Both of my children have fistulising ileal crohns, it tends to hit hard and fast and if not for the advent of modern surgery they would both be dead, in fact my daughter did almost die.

I understand what you are saying Nico and what you have been able to achieve is commendable but for many people here it is not as simple as getting up out of a chair and pressing on. If it was I have no doubt what so ever they would. We all know there are people worse off than ourselves but that doesn't stop the pain and suffering a person feels and a little bit of compassion and support goes a long way in a time of need.

Dusty. xxx

 

[Nico85]

(Hey Nico85 - I think Grumbletum has expressed very well what many of us are feeling about these posts of yours. We are all pretty tough on here, and have been through hell. The old 'stop feeling sorry for yourself' stuff is not useful, it's actually hurtful in this sense since we're already doing our utmost to survive.
I think it was the well directed and personalised love from your gran, and your love for her, that inspired you more than the simple words themselves! That's something to treasure between you and her.)

Hope you feel better soon Samantha. Take care.

Handle - you dont have to start a witch hunt against me, i was only doing what i thought might help the girl. If your in a bad way, the last thing you need is people wining and sympathising trust me. You need to be told that its not that bad and try get up and live your life.

I appologise if i have offended anyone

 

[handle]

Nico85, I started no witch hunt against you. I find that an offensive statement. Four people already tried to tell you, in a kind way, that your remarks are not helpful, including the original poster. And then you repeat the offensive remarks, followed by an apology!

 

[Nico85]

Handle - whats offensive? are you sure your not being a little over sensitive?

 

[Nico85]

I don't know that illness can be categorised so easily. It is too simplistic to say to that to be very sick you must die. It is more than possible to be extremely ill and not have death as an eventual outcome, you instead have a living hell.

Chronic disease is a very debilitating illness in its own right. It produces co morbidities that only add to the stress and despair that people feel each day. Crohns disease is chronic and yes it can be treated and managed but it can also kill. Just bear in mind that CD comes in more than one form and of course affects people in varying degrees. Both of my children have fistulising ileal crohns, it tends to hit hard and fast and if not for the advent of modern surgery they would both be dead, in fact my daughter did almost die.

I understand what you are saying Nico and what you have been able to achieve is commendable but for many people here it is not as simple as getting up out of a chair and pressing on. If it was I have no doubt what so ever they would. We all know there are people worse off than ourselves but that doesn't stop the pain and suffering a person feels and a little bit of compassion and support goes a long way in a time of need.

Dusty. xxx

Dusty - I was just trying to help because that approach helped me when i wasnt feeling great. I thought maybe that tactic would help others, but not everyone reacts the same way to certain things. But handle is making out im a worse person than i am lol :ywow:

 

[RFarmer]

Im sorry your so sensitive, im actually trying to help her in the way i was helped. I used to sit every day and night feeling sorry for myself and everyone feeling sorry for me being ill etc. until one day my gran said to me "listen.... there are people that are paralysed from the neck down and people that are brain dead and you are sitting moaping about your sore stomach and running to the toilet... get up of your arse son and stop feeling sorry for yourself"
After that day i did that exactly and before i knew it my whole thinking changed and never felt sorry for myself and started having a normal life again. i believe this way of thinking and the fack my gran came from a generation of people who got on with thing, actually helped me get myself my life back and into remission.

I was trying this tactic so that someone else would also benefit from it.

Its not that im insentitive, if anyone knows what shes going through its me.

I totally get where you're coming from. BUT, most of us on here have a chronic disease. While we can force ourselves to be optimistic, we can't force our bodies to behave appropriately. So it isn't really a matter of getting up and getting along with our lives: we can't, because we have chronic disabilities. That is the problem with what you are saying: you're assuming that we can all just push through the pain and such, when that really isn't the case.

No offense, but I'd suggest always avoiding the "get of your ass" routine, because generally it requires a level of ignorance towards what the person is experiencing.


Samantha: Sucks to hear you're not doing very well. I noticed you have both RA and CD... Ouch. What a dreadful combo. My prayers go out to you. Get well soon

 

[David]

Nico85 has been banned.

25times, I hope you feel better soon, my dear.

*hugs*

 

[handle]

well done David.

 

[Mountaingem]

:hug:Sending gentle hugs your way Samantha! I know how rough it is when you're in so much pain-just know we all support you, and you vent away any time you need to Sweetie!

 

[Jer's Girl]

How are you doing Samantha? Are you feeling any better? Thinking of you.

 

[AndiGirl]

Hi Samantha! This is still a very supportive and caring forum. Please feel free to vent when you need to. I hoping you feel better soon sweetie.

 

[LindaS]

First of all, happy belated 21st birthday, Samantha.

I hope you were able to get through to your doc today and get the pain meds you need. And don't feel bad about coming here to vent or look for support. I think most of us have felt that kind of hopelessness and pessimism from time to time. I am usually a "glass is half full" kind of person, but recently it is seeming more empty than full. Crohn's is a horrible disease, especially when you are trying to find that magical combination of drugs to tame it.

 

[25times]

Wow haha I just read all that and was a little shocked. Thank you ALL for your support. Some people deal with these things differently, and I didn't appreciate Nico's comments. I HATE being called a hypochondriac. My parents called me that all my life, because I was always complaining about my crohns that i didn't know I had yet haha. Anyways, I can't say I'll miss him.

I ended up in the emergency room this morning, not by choice. I started having very bad pain around 4am, so I went to lay down in bed. My boyfriend found me on my hands and knees in bed, clutching my gut, puking and unable to breathe. The pain was unbearable. I haven't cried like that in years. He scooped me up, put me in the car and drove. While being assessed in triage, my heart rate was 160, so I got a bed within 5 minutes, saw the dr within 20, and was having an ultrasound within an hour. Turns out I had a partial obstruction right at the beginning of a very, very long and twisty stricture. They decided not to do surgery, since it was only a partial block, and the stricture is so long they would have had to remove ALOT of bowel. The stricture is very low in my pelvis and causing me alot of pain. They upped my pred back to 40mgs, gave me some kind of laxative, and sent me home after 16 hours. I was so glad not be admitted, although they wanted me to be. The plan is to see how I'm feeling later this week, and start remicade within the next couple weeks. I'm negative for c-diff, as well. So I'm feeling a little better, with the help of painkillers, but I hope the pred gets me back to "normal" fairly quickly. I'm going to be seeing a chronic pain specialist, so I'm really excited about that. I wish I wasn't in enough pain to have to see one, but I want to deal with it in a different way.
So, all in all, I'm feeling better. A bit shaken up (never had an obstruction before) but I'm glad it's treatable without surgery. For now, anways. Thank you everyone for your kind words and support. I love you all

 

[Grumbletum]

You poor thing, but I'm so glad that you got treated quickly and hope the Pred starts it's magic soon. Rest up, love, and know we're all rooting for you to get over this hurdle xxx

 

[AndiGirl]

I hope you are being pampered by your loved ones Samantha. The Prednisone should be kicking in soon. Warm wishes to a speedy recovery are coming your way from Alaska.

 

[25times]

Well, just a dodgey stomach... I will never forget, I went to see my consultant and he was out sick so I had some new guy. He told me to give up smoking (I was 17 at the time, and no I still haven't given up), so me and my Mum started laughing saying do you want me to put on another 20 stone? ( I was on a high dose of Pred and put on about an extra 2 stone which I was Very concious about!!) And he went nuts at us for laughing, saying "Do you know you can die from this Disease, it is not a funny matter, start taking it seriously!!" Well, being an emotional 17 year old, recently diagnosed, some stupid Doctor telling me all I knew anyway, I burst into tears and my Mum shredded the stupid man. Obv I know all this but it's laugh or cry. Laugh that I'm on the loo at least 20 times a day, laugh that I have no qualifications, laugh I have arthritis at the age of 21, laugh that I'm walking around like a pensioner and have no life. If I didn't I'd have days like today. Sometimes pull it together works. I live alone and when I'm at my worst crying to myself, I imagine my Mum telling to pull myself together and I do stop crying but you need that cry to let it all out!! I would prefer a punch bag but hey =] I know kind of what your going through Samantha. But I don't have the boyfriend or the friends sadly, they couldn't deal with my cancelling all the nights out. But I have a good family and some good drugs!! And a good bed and comfy toilet seat =] You might cry everyday for the next 10 years but they will fix you one day, hopefully. So sit tight and cry and moan and bitch and feel sorry for yourself, you have every right. So you arn't the worse off person in the world? You feel bad and whats wrong with that. If you didn't have the bad times, you wouldn't know if you were having a good day =] all the best! x

Your attitude reminds me of my own haha. Most of the time I just laugh at my "misfortune" and get on with it. But sometimes it gets too hard and that's when I come on here. Whether I read other experiences, give advice, or start a thread to get a little support, it really helps. I will never let anyone make me feel ashamed for being sad, scared or worried.
I'm so sorry that you don't have many close friends. Neither do I, to be honest. I stopped getting invited out after I was diagnosed. Everyone assumes I'm too sick to do anything. They're still there, and I see them sometimes, but it's not how it used to be. I've been best friends with one girl for 10 years now, and I see her maybe once a month. She likes to party hard and drink alot, which I can't really do. So we've drifted a bit. But seriously, I'll take what I can get haha I really appreciate the time I do get to spend with my friends.
On a good note, actually, make that a GREAT note, my first disability payment came through tonight. They sent me double what I thought they were going to. What a fricken weight off my shoulders! Especially since I'm flaring again and really can't work at all. This money is a serious godsend. I was about 2 days from being evicted, having to sell my car, and move back in with my parents. Which would definitely take a toll on my relationship, and cause us to break up. So I'm very, very happy right now. I'm sending good vibes out to all you lovely people on here. I hope some of my good fortune rubs off onto you (minus the health issues. I want you all in remission!)
Hope everyone is having a good week!

 

[Astra]

Hiya Samantha

Only just caught up with this thread, so glad you went to A&E! It's what I would've suggested that you do.
I was in hospital last year with a blockage, very scary stuff, but I avoided surgery and Pred and Metronidazole saved my life.
Here I am 18 months later and in remission, it's possible that one day you'll get there too.
Hope it all works out for you hun, take each day as it comes. Try not to fret about others, it's not worth the effort, it's something that I gave up years ago.
My saying to others?
'I'm sorry, but you've mistaken me for someone who gives a shit'
That soon shuts peeps up!
Just carry on being your own health advocate, it's your body, you know the score!
I wish you all the luck in the World, you're gonna be ok, I promise
Take care
Joan xxx

 

[Jefferson]

Hey Samantha...
Glad to hear you're on the mend! I've had several partial obstructions, the latest in May this year. I'm happy to hear you weren't admitted too, each time I was admitted with an obstruction I ended up with the dreaded NG tube for a day or two:shifty-t:

Take it easy of the next few weeks! Thinking of you!

Jeff

 

[25times]

I feel ya! On all accounts. I hated pred tho. It worked like magic, but I broke out all over, was sweating all the time (and I'm normally cold so that was wicked weird) and could not sleep at all. And when thet were trying to figure out what I had they all thought I had an eating disorder. It was bad. Took them over a month. I went down to 80 pounds. I just found this site and felt like I really understood what you were saying. And I hope you are feeling better. I'm here if you would like to talk! Not to be creepy or anything but ppl keep telling me it might help to talk to others effected.

Yep, sounds alot like me haha. And it definitely does help to talk to people going through the same thing. How are you doing now? Is your crohns (I'm assuming that's what you have) under control?
I have a love/hate relationship with pred. I would rather deal with the bad side effects than be in pain though. My stomach is still killing me, and every single thing I eat causes me pain. So I think I'm gonna stick to liquids for a day or two, see if that helps. Even my usual "safe" foods are really bothering me. It's weird. But they did say I was flaring again, and it takes a couple days for the pred to start working. I'm being optimistic though haha

 

[Crohn's Mom]

Samantha I am happy to see you are strong enough to not let one bad seed chase you out of here ! BRAVO !
Hoping you get better quick, but don't be afraid to vent about it here if you don't!

hugs,
~T~

 

[allieinwonder]

Oh goodness! That is so good that you went to the ER! I hope by now the pred is helping you feel better!

 

[Brit]

Oh yeah sry I have crohns. And it's doing ok, thanks. I'm sorry to hear that you can't eat anything. =( idk if this might help but when my stomach hurts I eat sorbet usually lime or watermelon. It seems to settle/soothe it. Hope the pred kicks in soon! And glad to hear your staying optimistic, just keep smiling!

Although in my experience that sometimes leads to people thinking your crazy! But then again I don't think I have ever seen a sad crazy person so why not just go for it! Sorry I'm a little weird some times. Lol

 

[25times]

Thank you everyone. I wish I could say I'm doing better, but I'm not. When I left the emergency room on Tuesday, they gave me 6 painkillers. When I asked what I'm supposed to do when I run out of those, I was told to find a dr who could prescribe them. Oh, ok, I'll get right on that. The problem is, I can't find a dr who can/will prescribe them. My GP and GI don't have a triplicate, so they can't prescribe anything stronger than tramadol, which does nothing. The doctors who prescribed me percocet in the past can't do it anymore. The emergency GI didn't have a triplicate, either. So I'm sitting here, in awful pain again, and nothing to get rid of it. I could go back to the hospital, but there's nothing they can do except give me some pain killers for a few hours and send me home again. We're waiting for the approval to come through for remicade. I've been told it "should" be within a few weeks. The prednisone either isn't working, or hasn't kicked in yet. I don't know what to do right now. It's so unfair, and disgusting that I can't get any pain relief unless I go to the hospital. This isn't an emergency. I don't need to be in the hospital right now. All I need is painkillers to get me through these next few weeks until I can get remicade. Why don't doctors understand any of this?! They have no problem giving me drugs that cause cancer, heart failure, liver failure... Yet when I ask for painkillers it's like I just asked for a jug of heroin and a dirty syringe.
My stomach hurts. And my butthole. And my joints. And my head. But mostly my stomach. And I can't stop pooping. I feel helpless, and I don't like that feeling.

 

[SdN]

25times I'm so sorry for the pain you're going through. It really is a shame the docs aren't able to give you some painkillers or something to make things more bearable when you obviously have so much to deal with. I'm really thankful for you though that you were able to get the disability money that is seriously awesome. :thumright: Hopefully that will allow you to focus your efforts on getting a decent quality of life back rather than worrying about losing your place.

 

[25times]

I was able to get some tridural 200mgs, so I think I'll be ok for the time being.
I am so grateful that I was approved for disability. I know that 90% of people get denied the first time they apply. I consider myself seriously lucky, and I will not take this for granted. I already have a job lined up for september, so I will probably only be on disability for July and August. I'm not going to stay on it longer than I need to. I'm not like that. I just hope I get approved for remicade soon. My doctor has really high hopes for it, so I hope it works.

 

[mayhavecrohn's]

dont let the rude comments get to you from Nico85

This might be long. I apologize in advance. I need to write. And I need people to read it. Who understand. I'm feeling very emotional from the pred, and I'm having a bit of a rough time. But let me tell you about the good first.
I just turned 21. My birthday party was incredible. I was surrounded by my family and close friends, tons of food, and I felt relatively good all day.
Also, my disability was approved. I'm literally thanking god right now. Perfect timing, amazing birthday present, and what a weight off my athritic shoulders lol.
Now the bad. I'm definitely flaring again. My pain is through the roof, and I have two painkillers left. My GI's office won't be open until tuesday. I can not legally get any more percocet. I'm so scared. All I can think about is how bad tomorrow is going to be. And the next day. And the next. All my other symptoms are back, too. I'm currently on 30mgs of prednisone and 150 mgs of imuran. I'm pretty sure I just need to increase my pred back up, because I felt incredible on 40mgs. Like I didn't even have crohns.
So now, I'm sick again, and there's nothing I can do about it for two days. I could go to the hospital, but I've been in there every month since April. I hate it so much. I will go if my pain gets any worse.
I'm also a little depressed. I'm so sick of being sick. I'm sick of you guys being sick too. I'm sick of sickness in general. I hate this. I hate what my life has become. Everyone asking me how I'm feeling. I've started to lie and say "I'm good" so that I won't have to explain how I'm feeling and having people fuss over me. "Are you sure you should be eating that?" Watching everything I do, flinching when I stand up.. It makes me feel like shit.
I know, I'm rambling on. I'm sorry. I haven't slept since Friday. I hate prednisone. The thought of having to increase my dose again just sucks so bad. I don't wanna look like a chubby, red, sweaty butthead anymore. No one understands what I'm going through, as cliche as it sounds. I wish I knew someone in real life who's going through the same kind of thing. I love this website, it has really helped me through alot of things. But talking to someone one on one about it would be nice too.
Ok, I think I'm done for now haha. Again, sorry for rambling and being a lame depressed debbie downer. I'm sure you guys will bring me back up to a positive penny attitude
Hope everyone is feeling alright today!

hey 25times dont let the rude comments get to you from Nico85

i am also here to listen 25times if you need someone to talk to and here to listen and i say went way dont have to say your sorry hope you feel better soon

 

[allieinwonder]

Mayhavecrohns, Nico is gone so you don't need to worry about him anymore.

Samantha, I'm so sorry you are stuggling with trying to get painkillers. I hate how hard and stressful it can be to keep pain at bay...whenever I get to the end of my RX for tramadol, which takes awhile bc I only take it when I absolutely have to, I panic because I know I might not get more. We shouldn't be judged or treated like drug-seekers...the dangers of these pills makes it so stressful because the doctors sometimes don't understand that some people need them despite the risk. I'm glad you were able to get some to help you right now, and I really hope you are able to find a doctor who can prescribe you the right meds without having to go to the ER...that is way too much of a hassle!

 

[Ravs23]

25Times--
I celebrated my 24th birthday at the doctor's, getting a ct scan with a tru-close drain (which are cumbersome and IMPOSSIBLE to hide under clothing) hanging off of my sweatpants to drain a particularly nasty abcsess. I completely understand what it's like to feel like you are never going to get better. I feel like everything they (docs) give me (meds) make me worse before they make me better. Or else the side-effects (pred) are worse than what it's worth.
You are completely allowed to vent/rant. I am still coming to terms with this myself, mostly because I try to hold things inside and put up a strong front. But that accomplishes nothing but hurting myself more in the end because I allow things to fester until I explode. I understand the desperation about running out of pain killers. Literally one day I didn't leave my bed except to go to the bathroom because I was in so much pain. I spent the entire day waiting for my doctor to call in pain killers only to be told to take tylenol. I'm sure all of you know that by now tylenol is about as effective as popping M&Ms.
I am in the early stages of being diagnosed and treated (I just had my 1st round of Remicade last week), so I can't sit here and tell you that things will be better because they very well might get worse before they do. But I can tell you that the few things that I have that I'm thankful for I hold onto for dear life. You seem to have that same attitude and can recognize having a strong support group around you-don't let go of that!
They say what doesn't kill you makes you stronger, and we aren't dead yet
Keep as positive as possible, but if you need to be negative/rant/rave/vent/whatever don't ever let anyone make you feel bad about it. This should be a safe place for you to share what you're feeling. And some days we feel like SHIT! (no pun intended) so don't ever apologize for the way you feel!

 

[Goldfish]

Hi Sam. Just read through this thread and am sending you wishes. What a rotten time. I think you are really strong and you sound like a fighter. We cant fight all of the time, sometimes we need to give in for moment and let it all out and I am glad you are able to do it here. Keep us posted hun. You know we are all thinking of you.:hug:

 

[25times]

Thanks everyone. Not having a very good day
I'm in a pretty good amount of pain, all over. Right now I'm researching massage therapy and chiropractors in my area, and if any of that will do anything for my conditions. I'm getting fed up of being in pain everyday. The tridural I've been taking works decently, but I still have alot of breakthrough pain and it makes me more constipated than percocet. I would love to be able to just sit with my GP and discuss a pain management plan that works for me, but he just won't listen. As soon as I bring up the word "pain" it's like "I CAN'T HELP YOU SORRY."
I'm so frustrated. But other than that, the prednisone has started working, I'm in the process of all the paperwork to get remicade, and my GI agreed to call in a presciption for tylenol3's for the breakthrough pain. Hope they work.
Have a great week everyone!

 

[allieinwonder]

I'm sorry you're still in pain, but it sounds like you have made some progress! I'm really glad the pred is starting help, hopefully it will help with the pain overall soon. I also hope the Tylenol3's help too when you need them!

Have you ever had an appointment with a pain management doctor? I'm considering going to one myself, maybe they would be able to figure out a way for you to deal with the pain that doesn't cause as much constipation. I HATE the amount of constipation my tramadol causes! I wish there was another way to be able to feel human enough to have a regular life.