Sooo frustrated someone please help:(

[tigertown00]

sooo frustrated someone please help

Hi everyone, my story is kind of long but i would greatly appreciate someone willing to read it all and maybe help me out or at least let me know that i'm not the only one who feels as if no one cares or can help me!!!!!!
Well here goes: A year ago i was having real bad stomach pains in my abdomin it started in one spot but i was never the type to go to the doc all the time so i let it go thinking it would go away and it got much much worse.The diareah and nausousness and vomiting then came and i still managed to go to work everyday(swing shift) but of course i didn't do too much work because i was always in the bathroom. anyway in december of last year my mother came to my house knowing that i had been ill for quite some time and called of work that night and made me go to the er. well they ended up admiting me and i was dehydrated and all sorts of stuff i think if i remember corectly i only weighed 90 some lbs!! They did my first colonoscopy the next morning and said my intestines looked like raw hamburger and were severly inflamed.. I ended up stayin in the hospital for a whole week and they tried asacol and man is that some bad stuff. It made me nausous to even smell food and apparently i am alergic to it so they put me on pentasa which i'm still taking today. After all that i kind of got a little better.. well i went to a gi and for 6 months i payed them good money for absolutly nothing!!!!! they did another colonoscopy( this is a dif dr, the new gi) and according to them they couldn't decypher between crohns and uc. Needless to say after 6 months with no help OR answers, and no money AT ALL cuz i couldn't work and i was paying them for what i thought would get me answers, I found a dif gi on my own and started seeing him. I thought because he seeemed to genuinely care that i would finally get somewhere. He did my 3rd yes my 3rd colonoscopy(in less than a year:voodoo: ) resently and decided that i have crohn's.Well yea right?? not so much. they have me on soooo many meds and yet i'm still in pain and the vic they were giving me just didn't cut it. I'm also seeing a reuhm because i have so many symptoms and evryday it seems like i have something else wrong with me!! I have been in severe pain all weekend so i decided to make a trip to the er last night. I've been there so many times all they did for me which is weird was give me morphine for my pain and ran some blood tests. My wbc was slightly elevated said that wasn't to big of a deal . I've been there so many times that i know he didn't run all the right tests.No sed rate test no ct scan or anything.. I'm confused he's the doc why should i know more than him???????? ok i hope someone is still reading my story i'm very sorry it's sooo long but i'm very frustrated and don't want to leave too much out. anyway they sent me home and told me to contact my gi this morning. So i did and his nurse pretty much told me that they can't give me more pain killers because they might cause constipation. THen she proceded to tell me that she can't get me in until fri. and also if my pain gets worse to go back to the er!!!!!GRRRRR!!!!!!!!! I don't have the money for that and it seems like they are just pushing me off. I just don't know what to do they seem like they are giveing up because they can't help me. I am to the point where i wanna call her back and tell her where she can shove the apt. and i want to go out of state or something somewhere where they can help me be normal and NOT IN PAIN! I guess i'll leave it at that for now because i think i just wrote a book and no one is probably still reading. The meds i'm curently on are:
orthotricyclen lo
prednisone-40mg(was60) been on high dose for way to long gained 30 lbs
protonix-40mg
dicyclomine-20mg
neurontin-600mg 3x/day
pentasa-1000mg 4x/day
reglan-(for nausea) as needed
calcium pills-500mg 2x/day
6mp- 50mg
trazadone-100mg at bedtime
albuteral
and of course i used to be on vic for the pain but i'm out and still in pain

I am not sure what i'm asking by posting this. this is my first time doing this i guess i just would like someone to tell me that they have seen numerous dr's too and havent had any luck... Oh and by the way i'm only 25 wtf?? It's just not fair

 

[tigertown00]

ok so apparently my story was too long for anyone to read the whole thing and help me out.... I guess thats the story of my life and i should be used to it but i'm not.. if anyone cares my rheum just told me that i am going to start getting the infusions of remicade.. I should be nervous but for some reason i'm not imagine that. I also found out that i've gained over 30 lbs thats JUST WONDERFULL!!!!!! sorry i just needed to vent a little i'm having an aweful day

 

[D Bergy]

It takes awhile for people to respond on this forum sometimes depending on the day. It is Monday and most people have their plate full until later on.

That is quite a laundry list of meds. I would have trouble deciphering what is doing anything and what is not if I was taking it myself.

I am going to try LDN aka Low Dose Naltrexone. I can not recommend it because I have no personal experience. I also do not know what you have already tried that has not worked. I guess all anyone can do is to keep trying different things to try get relief. There are others here that know much more about the traditional Crohn's medications. Hopefully they will have some ideas. I am more of a do it yourselfer, and that is not for everyone. Probably a riskier approach, but it suits me.

I hope you find the answer, but it often is not easy, as you already know.

Best Regards

Dan Bergman

 

[tigertown00]

Thank you for responding and explaining that it takes a while for people to respond on here, i was having an extremely aweful day and just everything imaginable was goin wrong or making me angry. I guess i just figured everyone got back kinda quick on here lol but my day is goin a little better now i got to talk to my mom's uncle who also has cd. Thats the first time i've gotten to actually speak to someone else with it. it was a relief.. Finally able to have a conversation with someone who understands alot about what i'm dealing with.
I have never heard of the LDN...lol thats pretty shocking seems how i'm on or have been on just about everything out there lol not really it just really seems that way... i do feel way over medicated but don't really know what to do about it. i thought it was normal until i got on here and noticed that most everyone is on a lot less med's than i am. Thanks again for getting back to me

 

[Ilysha]

Remicade works really well for me. The infusions are no big deal at all..especially compared to colonscopies and ER visits, they are a piece of cake.

I truly hope that helps you feel better and get off the prednisone. I have moderately severe crohns and am on remicade, pentasa and 6mp and that combo does the trick.

Best of luck to you and hang in there!

 

[Mazen]

Maybe you can try to change your diet so you can use less meds. For suggestions check the book "The New Eating Right for a Bad Gut" or for a more radical approach "The Specific Carbohydrate Diet". You can also check the SCD diet on the net.

I'm not on SCD, but more or less follow the diet in the first book. Good Luck....

 

[kskitt]

blimey mate, i kinda know what ur going through. When i first got sick they just put me on anti sickness pills, which didnt work because i managed to still be sick on them.

Unfortunatly i cant give you any suggestions, but i do help that you do get sorted and that you can use less meds

 

[Kev]

Hi tigertown00... Welcome to the forum.. Think u managed to introduce yourself and have a rant all on your first day.. Imagine, being able to multitask while have crohns.
Anyway, welcome to the forum... don't take offense if some of us have an offbeat sense of humour. Just our way of coping with this disease. I can understand where you are coming from... 2 yrs ago or so, my pains were just off the scales, and didn't respond to anything.. I kept having multiple scopes, seeing doc after doc, and none seemed to be able to diagnose me correctly. They tried...
I was at a point where I maxed out my pain meds, literally only had a few hours of pain relief a day, like maybe 1 1/2 hrs give or take 3 times a day. When the meds wore off, I'd sit and count the minutes to my next dose. That was sheer torture...
I finally got into the habit of doing something, anything, to take my mind off pain..
That worked... it wasn't a 100%, but it was better. Then I finally got dx'd right, and started on the right meds, diet, and supplements, etc., to turn things around..
I wouldn't want to go back and revisit that period in my life for anything, or yours.
Guess what I'm trying to say, in my own long winded way, is that things will turn around for you too... Meds., rest, diet, exercise, supplements, all of those are part of the process. you have to figure out what works for you, more importantly what doesn't... and avoid the latter. Then you'll be able to put these trying days behind you.. Anyway, you aren't alone, we've all pretty much been there and done that...
Here's hoping that things turn around for you PDQ, and to seeing you here often..

 

[tigertown00]

thanks for the advise mazen on my diet but honestly i've been eating a high protien low fiber diet thats what they told me to do but it seems to not be working. My mom's uncle (who has crohn's) told me yesterday that his doc told him just to eat what he wants and he'll know what he can and can't have. I am thinking about trying that out.Of course i really just don't want to eat at all just because of this stupd steroid weight lol. but i'll try your suggestion if this doesn't work.
How do they put the stint in for the remicade infusions? does that hurt? and they leave it in right?
Haha kev yeah i'm pretty good at multi-tasking lol i honestly am proud of myself because my story kinda made sense once writen out. I have been having trouble concentrating and paying attention and remembering. I'm assuming it's from all the meds. I had the worst day yesterday and just wanted someone, anyone to talk to me and know what i was going through and to telll me all this wasnt in my head . lol I hope your right about stuff turning around i could use it. I think the depression pills aren't' workin anymore lol hahaha Do they put everyone on supplements? i noticed that when i was looking around in here and none of my doc's have said anything to me (except my reuhm) and the only one i'm on is calcium

 

[Kev]

Welll, as to eating what you want when you want, that's OK if you are in remission or at least in a state of control... at least it's sort of a calculated risk. Recent evidence seems to say that folks with IBD of some form or another are like allergic or sensitive to certain foods... Some are definitive triggers (you'll learn that if you diary what you eat N how your body reacts).. I think other foods are more sneaky, or at least risky..

Anyway, the docs I've dealt with are either old school (think that food isnt' a factor) or more cautious (not sure either way, jury is still out) but they arent' food experts. for that, you either need to go online and research, teach yourself ELSE see a nutritionist or dietician who specialize in IBD.. Thats' what I did. It worked, I turned around. It didn't cure me, in fact I'm slowly deteriorating... but i'm not back where I was 2 yrs ago.. Our diets are pretty similar.. I'm hi protein, low fat, low fibre, low residue, low lactose... and I take vitamins, calcium, Vit d, acidophillis, and Digestive advantage containing lactobacillis cultures... + meds pred & salofalk

i'm hoping this week my GI will OK LDN... else my other option is metho injections..

Anyway, good luck. Work towards stabilization, then towards a remission. Once u get to that point, the tuff part is staying on track for longterm maintenance, okay?

 

[tigertown00]

it's really nice to hear that someone has remotley the same diet and everything, i think i'm really to the point where i just want to give up. I'm frustrated. I have an apt on fri to talk about remicade, My father is going with me and neither my mother or father want me to get it because of the possibilities of the infections and everything else. I don't blame them but i don't really know what to do.... Every winter i always get sick all winter long, so it kinda seems like i would be setting myself up for hospitalization or even death if i decide to go ahead with it.. plus i also read somewhere that it's not good to be on 6mp and taking the remicade and i'm on the 6mp also...... Anyone got any input or advise or anything for me??? Kev you have been a big help i really appreciate it i'm bad at writing lol i always go from topic to topic and more times than none it really doesn't make sense lol but anyway i wanted to make sure i said thank you!

 

[Kev]

Well, you have to ask yourself a few questions.. Like, am I prepared to step up and fight this disease? Otherwise, it's in control, and it can go to some rather nasty place you probably won't like. Another question.. Is it my disease, my life or my parents? I have kids, I hope they never run into this, but if they do..how they deal, what they do or don't... that's their call. I can't live their lives for them, or decide their fates. Its a part of the growing up process. I can offer advice, opinions, support, but thats it. A last question Do you trust the doctor you are dealing with, their training, advice? If yes, then listen to him/her, get all of the info, make a decision in conjunction with what the doc says. If not, find one you trust! Make that the top of your to do list. You can't fight this disease without a lot of help from the medical community. You need drs, surgeons, diet counsellors, etc..
If you do, you should make real progress, AND that sure helps with frustrations...

 

[Sojourn]

Welcome Tigertown, or I should say, sorry to see you are here. Sorry to hear of the complications you are having with this animal. If you have the opportunity to go with Remicade I think it would be worth a shot. I may be going to it soon. It works for a lot of people but not for all. Then there's Humira. I do what a lot of other people here do with diet on low-residue, low lactose, take probiotics, Digestive Advantage, and eat small meals.

Eventually, you will find a system (medicine&diet) that helps reduce symptoms and pain. But it is an unknown that you will have to live with for the rest of your life probably. That's what we're all dealing with. Unexpected hospitalizations, surgery, losing work, changing careers, etc. But many find a way to deal with it where it isn't that bad. Just hang in there and keeping looking forward.

 

[Chowe]

better than remicade

Hi, first time post but I was on Remicade for a while and it only worked for 4 of the 6 weeks in between infusions. I have now been on the HUmira injections every two weeks. I feel much better, only 1 minute to inject, and you dont have to waste a day of work. It also usually has less side effects than Remicade becuase it was cultured from human cells not animal.

 

[merrywidow]

cheer up

i did read ALL your message!!! yes we all have bad days(weeks) and yes we all have doctors that are as good as a chocolate fireguard. so of your words i didnt understand because your in america (i think) and i am in england.
i have a ileostomy and have had it for 4 yrs now, i never regret having the operation either. things will get better, i promise, kind regards sharon x

 

[TeenageStephanie]

Believe me I can sympathize. I had to go on medical leave at work because i am just sick all the time. Best of luck with Remicade. Remicade has worked yet it hasn't for me. Medication will be declared a failure in 12 days, then I will have to go to surgery after 8 months of suffering. Nothing has worked for me and I've been on every drug. I've seen so many different doctors. My nausousness is the worst part of everything. I can not make it go away and the doctors have no idea what to do to make it stop. You are not alone. Do not worry.