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Never get night sweats, just sweat alot during bad attacks which usually happen at night lol. Dahl, I totally get what you mean when you say you are naked and run the taps out of desperation- I have had that feeling many times!
 
Oh no I just saw that :(

Not been well at all myself, feeling very blah, alot of muscle aches, and abdo/stomach pains have been bad. I think it's partly a bad phase and partly that virus I had. Mum is away for a few nights next week so I haven't let on how bad things are, although not much gets past her so she has probably noticed! Will have a neighbour looking out for me (she has keys and i've her phone number) and family who are 30 mins away will be "on call".

Such a lovely feeling of being an invalid at 24!
 
Allie, I saw that on Sunshine's Facebook too. I hope she's okay! Hopefully they can get her some pain relief at least. Sunshine, if you read this, we're all worried and thinking of you! Many ((hugs))!
 
dahl - where you lose weight totally depends on the individual. i've lost 20 lbs thru my ordeal (am hopefully starting to gain it back now, i had 2 donuts today, yay!) and i notice mine mostly in my hips and bust. i look like a 12 year old boy.
alli - i know ERs suck bofa, but if you're in that much pain, it may be the "in" you need to see your dr faster, if that makes any sense.
sunshine -- hope the hospital isn't serious!!! please get better.

on a positive note -- my butt's been feeling a lot better, the fistula is a lot less irritated, and i'm gradually getting less mucus. i went to the beach with my family for the first time in months.
 
ERs always treat me like I shouldn't be there. It is very frustrating. I don't know why they do that to me either. When this illness started I went to the ER three times: one sent me away on pain meds, one diagnosed a hernia without any tests, and the third did a CT, said they found nothing (which is bogus because my previous CT found tons of scar tissue the second one should have found too) and then sent me home with another RX for tramadol. So I avoid ER's at all cost even though I am usually in bad enough shape to go. Thats why we talk about me going to the ER all the time, but I don't go....


I took the max dose of tylenol to break my fever and it did nothing. :( I'm on tons of pain meds tonight so sleep isn't going to happen. My sisters are up and talking so I'm out here with them, even though I guess I should be sitting still in my room, but this fever is driving me up the wall. If I am this bad tomorrow when I wake up...I will probably go to the ER because I wont be able to stand this fever and this pain for very much longer. I need something stronger than Tramadol, and I need to figure out why I have this stupid fever.Ugh...
 
Hey everyone, thanks for your concerns and thoughts! It's been a rough night. My mayo clinic doctor had called today because I called him telling him I wasn't doing well, and he was worried that maybe my symptoms were so bad because I had perforations from the double balloon procedures they did. so he told me to go to the ER and get a scan done, everything is good. that's good news! BUT bad news is, I guess I'm just in another flare... :( can't do much about that, no pain meds. The ER didn't give me pain meds because they don't know what's wrong with me, so they gave me something just to relax my muscles, but the pain is still here... i'm at home now, and heating pad is on high and it's just annoying. I can't get any comfort. And the nurse who did the IV poked me like 3 times before she actually got it in my vein.... and then she pushed the fluid in the IV it gave this horrible pressure feeling in my vein and it hurt soo bad. she obviously didn't put the IV all the way in the vein or the right way or something but she didn't move it, she kept squirting the fluid in the IV, and finally the pressure/tension of it hurt so bad I started crying and getting upset, and she left me alone. I really hate the ER, they never treat you the way you should be treated. But i'm home at least, just have to get comfy or try to... I was suppose to go to the zoo tomorrow with the boyfriend to see my favorite animal, the giraffe! but, looks like yet again my tummy has controlled what I can or cannot do in my life. I hate that. We all go through that and it's really not very fair.

oh by the way I made a Tumblr account, i don't know if any of you guys have it or not. but i made it as a place where people with crohn's or tummy issues can blog on or post about, and i'm going to use it as a personal blog for my tummy. Just trying to help others and spread the word. here's my url if you all want to go to it, or if you have tumblr follow me! :) I just made it, so it doesn't have much on it yet lol.

http://ihaveabadtummy.tumblr.com/

Allie, I know just like me you hate the ER, but if you still have that fever and pain you need to go, they will give you something better than your meds! I'm worried about you... let us know what you end up doing. *hug*
 
Wow Sunshine! What a night. :( I'm glad you didn't have any issues from the previous procedure. I am really curious though, why do you never get any pain meds? Ever? The only reason I am getting by without treatment is my pain meds. Just because they don't know whats wrong doesn't mean they can't give you meds for the pain! I'm really confused. O.O
 
I know!! I don't understand either!! I get a bad reaction to morphine which is what they wanted to use, but then because I couldn't have it, and the dr knew that I possibly had crohns he told me the pain is not going to go away until the flare is done. And gave ne muscle relaxers which is annoying because now I'm sleepy but CAN'T sleep because the pain and cramps and aches are just something I can't relax with.
 
And every doctor does this with you? Every time you go to the ER? And no regular doctor you go to will give you something either, like tramadol? That really makes no sense to me. There is no reason for you to be in pain. You should be comfortable...not in misery waiting for these tests...

I would fight them like hell if they did that to me. The main reason I go is because of my pain, so they immediately give me IV pain meds when I go. The last time I explained I wanted help, I wasn't a drug seeker, you don't have to help my pain, and they still shot me up with diluadid, lol. And they always give me an RX for hydrocodone or oxycodone for the break-through pain until my next doctors appt.
 
Almost a year ago they gave me meds to take home, but for some reason now that everyone knows it's something more than just a "tummy ache" all of a sudden everyones scared to use anything on me, just in case it affects it.... i don't understand. and i'm really freaking out... i don't understand what my body wants from me! I get hungry so i eat a cracker... then my stomach gets angry at me and i get cramping and pains and aches... i don't know what to do! I'm literally so frustrated right now. I don't know what to do! I'm watching Friends on TV, heating pad on high, water, crackers, Emetrol nausea syrup... i've got all the goods that i can have, but nothing is making my body happy and i'm irritated that it's being so high maintenance right now because of this flare. I'm worried that I've had so many flares recently too. It needs to relax so that I can be happy and enjoy my young life!

My pill cam was scheduled though. It's on the 20th, and he said they are going to do the upper endoscopy with the "push" to get the capsule down since he knows i'll be feeling sick the morning of the pill cam, doesn't want to make this process any harder for me.
 
Got my surgery consult for the laprascopy (or however you spell it) on the 11th of November. Can't come soon enough! Although I think only a small chance of having it done this year now :(

Abdo pains are bad, not only that, been getting some really nasty cramps for no apparent reason. Not normal for me. So bad i've even thought of getting some buscopan even though it's 99.9% likely they won't work!
 
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star- congrats on your consult. hope it goes well, and that you aren't too uncomfortable til then.

sunshine - well, at least the pill cam is less than 2 weeks away. trying to look on the bright side. i'm still really surprised they won't give you pain meds. maybe they're just gun shy because of the morphine reaction? even knowing you have crohn's shouldn't have any bearing on that. i've been on percocet (which did absolutely nothing, weirdly enough) and lortab, which does help some.

will they at least let you take tylenol? i take about 3 baths a day. helps alot.

<hugs>
 
Hiya Girls!

I just popped in to see how you were all doing, and not very well it seems.
I wish I could do something to help, I know how you feel. I was undiagnosed for 15 years!
All I can say is keep persisting, and one day you'll get your dx. Big hugs to all of you!
xxxxxxxxxxxxxxxxxx

I also saw my name mentioned!
I just want you to know that I have been headache free for weeks now.
I was the ultimate caffeine oholic! Painkillers, coke, coffee, you name it, I was munching them by the shedful!
It was the hardest thing I've ever done, but with sheer bloody mindedness and determination, I did it!
I slept it off for over a week, then all of a sudden, crystal clear headache free days! Bliss
I've slowly but surely re introduced the coffee back in, no coke or painkillers tho!
If I do get a headache, munching sweets tricks my brain into thinking they're painkillers, the placebo effect! It really works!

I wish you all, all the luck in the world with whatever you're dealing with at the mo!
Take care
xxxxxxxxxxx
 
any ideas

Hi Im new on here and am a bit concerned with my health in general and am really in need of someon who understands
I have already got hashimoto thyroiditis ( under medication control for 15+ yrs)
Sero negative Rheumatoid arthritis ( battling for control still)
Vitilago

so as yet am quite the colector of auto immune disease.
For the past 20 years I have had food intolerances many so my diet is quite limited I cannot eat wheat, soya, oats, red meats, potatoes, these can induce vomiting, diahorea, burping, stomach swelling. I aquire many allergic reactions to drugs even those Ive taken for a while.

In the past year my bowels have been playing up quite a bit I get alot of pain, dihorea,cold sweats, little warning :ywow: and have to stop eating until it settles down as I have had many embarrassing accidents especially as when I have to go I have to go( also my mobility is bad so its harder to get to the loo anyway. My rheumatologist and GP both suspect IBD as It is common with seronegative RA but Im not so sure as it says everywhere you lose weight and I havent in fact although stable I have always struggles to keep my weight down since my thyroid packed in. Despite my restricted diet, diahorea and low volume intake of food in general. Can you be weighty and have IBD?
I just dont want to add to the many tests I alredy hav with my RA unecessarily.
I did have a period of calm when I was trialling Cimzia (biologic) for my RA it didnt hlp the RA but I found by accident whilst on holiday my food intolerances had gone. Unforumatly I had a bad chest infection and whn I went back on the cimzia I had an allergic reaction to it so I came off it earlier this year. I found whn I had a depo steroid to help with my joints whoh always helps them my bowel did calm down.

Sorry I know Im going on a bit here and maybe I shouldnt even be on here but I find the arthritis forum really helpful so thought I would give it a go. Im seeing the gastro consultant on friday morning if anyone has anything useful to ask him I would be very grateful
Theresa
 
Weight loss is common with IBD, but there are several (more and more) that I am noticing on here that are not experiencing weight loss. It depends somewhat on where the IBD is located (nutrient absorption and all that) and how severe it is.

If your thyroid isn't very good then the effects of that could cancel out any possible weight loss, so your weight remains the same.

It could also be IBS caused by another illness- maybe there is something more auto immune going on that hasn't been picked up yet? Diseases like Lupus for example entail bowel issues as part of it.

Best of luck Friday and let us know how you get on :) Gastro tests can be hard but if they give you an answer then it''ll all be worth it.
 
Star, that's wonderful that you have it scheduled! Poor thing, just gotta hang in there! :(

Flowergirl, I think that's what they are afraid of because of the reaction with morphine. I can take tylenol but it doesn't do much, I have Bentyl or however you spell it lol, which is suppose to help for cramping but I can't tell much of a difference. I love taking warm baths, that really helps, it's just comforting. :)

Theresa, you are in a great place here! Welcome! Everyone on this forum is wonderful, and it's just nice to be able to vent and talk to other people who are just as frustrated as you are. It helps a lot! I hope you can get some relief from the RA soon, that must be awful. :( I hope you like this forum as much as I do! :)

As for me, been up and down all night because of the pains, still have heating pad on, and going to use this rainy day to relax. It makes me feel better when it's raining outside though because I don't feel like I'm being left out of anything. I really dislike not being able to do anything when I have flare ups. This weekend I was suppose to go see giraffes at the zoo, but that's not happening obviously lol. I love giraffes though! They are so awesome!

Hope you all are doing okay, I can't thank you all enough for being there for me and understanding when the rest of the world doesn't. :)
 
Sunshine: That still makes no sense to me, lol. Painkillers would only interfere with it by constipating you, and sometimes it is worth it to be comfortable. I would fight that if you want relief, I really would. Especially since they are just making you sit and wait when you have a diagnosis. At least the pill cam is soon!

Star, I'm sorry your laproscopy consult is far away. :( One of my friends just had laproscopy over here, and it was scheduled so fast it wasn't even funny. This is a type of girl that crys "OMG I AM DYING" with everything that happens with her body. When I went to the GI and he said Crohn's or Cancer a year ago, she went because she had "tummy issues" and she thought she must have cancer or crohn's too. She does this with everything and the doctors always listen to her and perform all kinds of tests on her and always find nothing. If something like that can get laproscopy...why can't we??

Thanks for the kind words Astra!

theresa, welcome to our little club. I agree with Star, it could be autoimmune triggering IBS. I have had autoimmune/digestive symptoms for a very long time, and I for sure thought it was crohn's. I have had every test with no sign of anything in the digestive system. So now they are thinking its autoimmune thats causing severe IBS. They actually think its Lupus causing it, but I haven't had any of the blood tests yet to see (I go monday thank god!). Could your RA be triggering IBS? Either way, your new GI should run a number of tests to make sure it isn't anything more.

As for me, My fever broke in the middle of the night. But I still feel very very bad. Tramadol isn't touching my pain whatsoever. I'm going to sleep/rest in bed all day. I sure do wish I had better painkillers, but I just don't think that is reason enough to head to the ER, and urgent care doesn't do painkillers. >.< My husband called and told me to just take the max amount of tramadol every 4 hours and stay in bed until my appt on Monday. I think he has the right idea...I hope it will be enough.
 
Sunshine, I'm glad you're home now, but that sucks that you couldn't go to the zoo. You said giraffes are your favorite animal, so I made this for you (the giraffe is a Japanese food pick - you're supposed to stick it in your food when you pack a lunch so that you get a happy surprise when you open your lunch later on - all the other animals are smiling, but for some reason, the giraffe is frowning! I call him Disapproving Giraffe).

111008-153443.jpg


Hang in there Sunshine, I'm glad to hear that the pill cam re-do isn't too far off into the future.

Star, so glad to hear you've got a consult! That seems relatively quick too, I know you had said you weren't sure if you'd hear anything further until 2012. I hope it goes well, fingers crossed for you!

Hi Theresa, welcome to the club. As Star said, not everyone with IBD (or potential /undiagnosed IBD) experiences weight loss. We're all different and we all have a uniquely different set of symptoms. As Star said, I would try to get the pill cam if you can get funding for it. It's like a little camera that you swallow and it takes tens of thousands of photos of your entire small intestine (the scopes can only see the very beginning and the very end of the small intestine, so the pill cam is a good test to have). I'm sorry to hear that you've got lots of other auto-immune illnesses as well, and as you probably know, once you get one AI illness you're unfortunately more likely to develop others.

Joan, thanks for popping in and saying hi! We're always glad to hear from you! :)

Allie, how are you doing today? How's the fever? I hope you're feeling better, and if not I hope you finally did go to the ER! Keep us posted, thinking of you. My giraffe message for Sunshine goes out to you too (and Star and everybody else too!).
 
Oh yeah, I should add - I have no idea what's going on with my GI or my meds situation. So yesterday when I talked to him, he said to stop taking Asacol and to start this other thing that I didn't write down the name of (stupidly!). I assumed that meant he was sending in a prescription to my pharmacy for this new med. But I've checked with my pharmacy twice now, once yesterday evening and once today, and they haven't gotten any prescription for me. So what's up with that?? I am pissed, I don't want to stop taking Asacol but I certainly can't start this new med until I know what it is and get the prescription for it! So I'm still taking Asacol for now. And I guess I'll call my GI on Monday morning and ask him what the eff is going on!
 
Aww yay!! I love the disapproving giraffe haha :) thank you!! That giraffe is so cute! What a great concept for it. Now I have my giraffe and whenever I do end up going to the zoo I'm definitely taking lots of pics of the giraffes! I will share them when I go! Hopefully soon :)

Been running back n forth to the bathroom today, no fun!
 
Oh Cat that is no good is it!

I didn't expect to have the actual surgery until next year although naturally I hoped to be wrong.

With so long to wait still until the consult looks like I was right :( Things are such a struggle at the moment, feeling so ill. I did confide in the family who will be looking out for me while Mum is away, about how bad things are right now, haven't let on to Mum though and is hard putting on a front. But I want her to go away on holiday and have a nice, relaxing time, instead of worrying about me.

Have emailed Rheumy, asking to be update on the bone marrow biopsy situation, and said if he hadn't heard back from that department, please chase for me!
 
That giraffe is so funny! Awwww....

I'm pretty much the same as this morning, except all my joints have become very stiff and painful. I think its because I haven't moved much today, but my joints have never been this painful or stiff before. I have thought about the ER, but with the Rheumy appointment the day after tomorrow, and the fever gone, there is just little to no point in going. I have no one to take me, so if they gave me pain meds via IV I couldn't drive myself home, which would suck.

I am going to have to make sure I show all of this to the Rheumy on Monday. I tend to hide my pain behind a brick wall, and how hard life has become as well, and I cannot do that Monday. I feel like I'm not polite when I show my pain and complain...but I really think he needs to see the raw misery I am going through. Hopefully that will get me somewhere on some kind of help.

I'm sorry your GI left you hanging like that Cat. Do you have enough meds to get you through the wait?

Star, I'm sorry you are doing so bad too. I understand not worrying your mom. I told my husband everything going on, and he completely broke down on the phone with me. :( He started crying and almost yelled at me saying I need to keep it together and I need to be at my appointment on Monday. He is in the field right now, pretending to be in a war, so he doesn't need that kind of distraction right now. I feel so guilty...

Sunshine, I hope you are feeling better other than the zillion runs to the toilet. I haven't eaten today for that very reason, I do not want my pain any higher and I would like to stay in bed.

Everyone else, I hope you guys are doing alright today, and I hope you all have a good weekend.
 
cat - cute giraffe! love him. and why did your gi take you off the asacol? i thought you were doing well on that. seems random?

allie - tell your dr everything. i mean everything. and don't hold back because you feel like you're "complaining". this is your health, your life we're talking about! honestly, in my experience, letting loose helps. so does crying. believe me. people get on it when you're crying in their office. not like hysterically, just pitifully. sometimes it's all you have left, and the only thing that accurately relays your situation.

sunshine - hope you get to the zoo soon to see your giraffes!

theresa - welcome! this is a great board.
 
Good luck allie with your Rheumy appointment!! I will be thinking of you :ghug:

Have decided to also email GI, these cramps are killing me and then there was that blood last weekend- 2 things going on that are not normal for me.

Thinking of going to GP for some anti-spasm meds, even though i've had 3 different ones in the past and they didn't do a thing. Got to be worth a try though. Or maybe I will get some buscopan first, so if I go to GP can say they didn't work. Did I mention how bad the cramps are :(

And joy oh joy my period is due Friday!
 
When I go to the zoo i'll make sure to tell you guys and show you all pictures!! :) ahh hopefully soon!!

Good luck with your appointment allie, you can't hold back your pain, make sure he knows you aren't doing well and he might move things along faster, which in return would make you a very happy patient. :)

REALLY nervous to start this fat diet thing that my doctor wants me to do for 4 days... I have to do it before i go to the pill cam, so doesn't leave much time! I think I will start with the fat diet on Monday. I'll be dreading that day haha... my boyfriend got so happy when i said i had to do a fat diet. he was like that's great! you can eat whatever you want! I was like uhmm... no, not exactly. fats do not do well with me, so it's going to be tough. For normal people they would love to eat burgers and fried foods, but not when you know it upsets your tummy. Hoping things go well with that and don't irritate my tummy too much. Just gotta pull through this! And then pill cam re-do on the 20th! I have so many bruises on my right arm from all the IV's and needles i've had in my arm the past week, my battle scars! As the nurse told me, I'm a tough cookie! We are ALL tough cookies to be able to go through what we deal with on a daily basis! Stay strong everyone!
 
Thanks everyone. :) Less than 24 hours to go!

Fever is back. Oh joy, right? All my joints are stiff, I feel like I'm 80, not 22 ~.~. I have stuff I have to do today for two of my classes, so I can't just sleep all day, but I am going to try and get things done quickly so that I can go back to bed. I'm suppose to be at dance practice today but that isn't going to happen...they are already very angry at me, I heard them bad-mouthing me in the living room last night, but I'm trying to ignore it and focus on my health. they do not understand how serious this has gotten. :(

Another thing I'm dealing with right now is Thanksgiving plans. Stuart and I decided when I left that I wasn't coming back for thanksgiving, because of the money involved and because it is only a little less than a month away from when I will see him for graduation (23 days to be exact). Well, now I am having major second thoughts. I miss him like crazy, and I want to be in Germany for at least part of the Christmas season...next year we will be packing up to leave. I looked at flights and with a military discount I can get there for $790...not bad, but still expensive. Well, I could also fly whats called "Space A", where I jump on a military flight for free. I would have to fly commercial to the airport that flies to Germany, then wait for a flight that will allow me on. It could take days this way, but it would be cheaper. My body probably couldn't take the stress of Space A, but it would be easier on our wallets and I would get to see my husband. The other thing is my professor scheduled our project presentation the day before thanksgiving break. :( I was going to go over there the entire week...so I am going to try and ask him to move it for me. The same professor moved it for me for the same reason last year. :p I don't know what to do though! I might not get to go at all. ~.~

Sunshine, that's really interesting that you can't do fatty foods and hes making you eat them. :( My trigger foods are the exact opposite: anything fresh (fruits and veggies) or with whole grains or lots of fiber. It sucks! If I had to eat that for four days I would most likely black out. I hope that doesn't happen to you!

I hope everyone is having a good Sunday!
 
Allie, so sorry to hear that they are bad mouthing you that makes me so upset... I have had people say stuff about me too because I can't do things. It's like oh i'm sorry, I just have something severely wrong with me and I can't do everything that normal people can do! lol... like they don't understand unfortunately. If I was there, I would of stuck up for you girl! It's not fair for you to go through any of this. Focus on getting you feeling comfortable at least if possible. <3 I'm getting very nervous about this fat diet, but I know why he wants me to do it... to see if fats are even getting absorbed by my small intestine. but too bad I have to go through the pain just to find out... starting that tomorrow! eeek! :(

I'm so confused, I've gone to the bathroom like literally every 30 minutes like clock work, and I haven't eaten hardly anything the past few days. I'll have been eating is crackers and not even that much. just been drinking fluids... :( Oh and then my dad comes in and says, hey can you fold your moms laundry for her, like it's no big deal... when really i've been trying to do my hair and put on my make up on and off for the past 2 hours, because i literally am just cramping over in pain and then have to run to use the bathroom... my dad will never understand... :( I don't get it...
 
Thank you so much sunshine. :) I'm trying to not let it get to me. I have done a lot for this sorority: I was president a couple years ago, and I have participated in everything over the past four years. My advisor, when I told her I was leaving a year ago, told me that I was the only reason this sorority was still here because of my hard work as President. I have done this dance every year, and it is someone else's turn to do it. I know they want everyone in it...but I am just too ill. I was going to try and do just part of it but they want me at practice for three hours tonight, and every night this week. That just isn't going to happen!

I really hope the diet doesn't hurt you as much as you expect. :( What did you say to your dad? My parents don't understand either. Hell, my husband doesn't either lol. He did that kind of stuff to me all the time. He would ask me to fold the laundry all the time, saying "you are sitting while you do it, it should be fine". Then other times he insists he does all the housework! Crazy man...
 
Yeah you have done more than enough for the sorority! That's why they are probably freaking out though, because they think if you aren't there to keep it together, things may not go right. but you know what, it's your time to take a break from the stress and just relax and get comfy for your appointment tomorrow. That is so sad that people don't see that you don't feel well, or they do see it, but they just don't think it's a big deal. Well, newsflash... IT IS! o_O You definitely can't attend those long hours of dance practice, that is crazy! They are expecting way to much from you. You just focus on you, be selfish for once! :)

I'm hoping the diet doesn't hurt me as much as I'm thinking too, it's just that i've been constantly going to the bathroom, my tooshie hurts now. :( So I know that when I eat real food, it's gonna be like WHOA what's going on! you know?! Ugh just ran to the bathroom again... :( this is not a fun game...
And my dad is just ughh, he just doesn't get it. When he said that to me about the laundry, I just looked at him and hesitated and he gave me this look like why aren't you doing what i tell you kinda thing... and so I just said okay to avoid confrontation with him. Even the morning that I left to go to the mayo clinic, I was crying because I was in so much pain and felt nauseous and he came in my room and yelled at me because he said that "isn't it kinda a coincidence that when you don't feel well you happen to be going to the doctor?"... He thinks it's always nerves... but I told him that morning, I said listen you don't understand, one day I could be fine, and the next be a complete mess. It's just how this illness is, and I can't control it. Then he brought up how the night before i was out with my boyfriend having a nice time, but then the next day i'm in killer pain... he kept giving me this "confused" look like i'm an idiot or something. Like i'm bringing all this on myself... believe me I would never wish this upon ANYONE! He just still is in denial or something. It's very frustrating.
My mom understands because she has been to all the doctors appointments with me since day 1 7 years ago, and has taken care of me when i'm sick.
Boyfriend understands, but I think it's gotten in the way of our relationship, especially now since i've gotten so bad.
How do you deal with your relationships and your illness??

Sorry I wrote so much, just very frustrated from all this. Hope you don't get frustrated reading it all :)
 
You didn't write too much! Thanks for the kind words about being selfish for once. I actually agree! :p

Wow, you dad obviously does not understand. You don't bring this on yourself! Did he not hear what they found in the pill cam? That's pretty severe! Hopefully over time he will realize you aren't over exaggerating or bringing this on yourself...that's just crazy.

As for my relationship with my husband, the illness has definitely hurt it in many ways. He has a hard time understanding whats going on. It started just weeks after we got married, so it was really hard to adjust to married life while being ill. He is very negative about all of it, and always has a negative tone of voice when trying to get me to take medication or something like that. We have been trying to get through it all year, and I just realized a few days ago: he hasn't accepted my illness. I realized it because he said to me "I'm grieving, ok? Its like I lost you. I will be grieving the rest of my life." His grieve has caused abuse in the relationship...he just doesn't know how to handle it. He is reading this book, "the tough and tender caregiver", and its the worst book I have ever read. It is written by these two people who divorced their sick spouses to marry eachother. They are so bitter about it, and they say really nasty things in this book. They say the well spouse should get more than 50% of the vote because they are more "able", they say if they sick spouse can't have sex they should cheat (I am in too much pain when we have sex...oh dear god please don't cheat on me!), and it also says that marriage is a corporation, and that the "sickness and in health" doesn't matter because the well spouse didn't sign up for this kind of misery. This negative book is basically telling my husband he can be negative too. I'm tired of it. I've begged him to change his attitude, tone of voice, and the way he treats me for months, and he says he can't until he feels loved, by me spending time with him or have sex with him. I will not do that until he treats me better. So we are basically stuck.

I don't know if you know, but 75% of marriages that have a sick spouse end in divorce. I completely understand that it can be hard for the caregiver, but there is no reason to take it out on the sick one. Or blame them. I didn't go up to a sign-up sheet and go "yeah, sign me up!" :(

There are good aspects of this, and I'm trying to get my husband to see that. You realize that life is precious, and live life better with that kind of outlook. You have to choose what you do carefully, and you know to live life to its fullest. And the good days are very happy because they are a rare gift. You don't take anything for granted.

I'm sorry, that has a lot of information in it. This illness has done a lot to my marriage! I'm hoping once I have a diagnosis and he gets out of the Army things will get better.
 
the relationship part of this is definitely a challenge. when all mine first started my husband was not the most supportive. he was more concerned with the effect it had on his life, not mine or ours. didn't understand why i couldn't seem to do the laundry or have sex. why couldn't i understand how he was feeling? and that was when my symptoms weren't horrible. then i got the fistula, and it actually took a month or so for me to actually realize it was a fistula, and that was why i felt so piss poor.
then it got pretty bad, and one day i showed him the dime sized hole in my labia, and he started to get it. it was like, whoa, no wonder you feel like garbage. and he's been a lot better since then. he still has his moments of woe is me and stuff, but in general he's been pretty supportive the last few months. especially in light of the sex ban. i can't even think about sex.

the day before my first infusion he was going to the grocery store and he was being all pouty and whiny about having to go to the store. then he couldn't understand why i was mad at him. i'm like, i'm scared out of my mind because i'm being infused with mouse ovaries in the hopes of closing holes that shouldn't be there while praying i don't go into anaphylactic shock tomorrow. i'm so sorry if i'm not sympathetic that you're too stressed out to go to the grocery store!!!

:rosette1:
 
Allie, I'm so sorry that you and your husband have been through your ups and downs because of this illness... I can definitely relate. It's been so hard. because when i'm not feeling well, i want to be alone sometimes, because I feel like if someone even just touches my hand, it's gonna somehow hurt my stomach. Sounds crazy, but I feel like my stomach is so sensitive that it just sucks. My boyfriend is so sweet, but I can tell he's getting frustrated because he said that it's hard for him to see me in pain everyday and whenever he asks how i'm doing i'm always not feeling well, so he just said it's bringing him down to see me so hurt and in pain. but i'm the one going through the pain so it's harder on me, but I understand where he's coming from, but idk. it's just tough... When i do feel well, i want to go see the world! like go outside, go on a drive, do anything, because i'm so used to being inside my house. but sometimes he wants me to just hangout with him and be cute, but I freak out when i'm feeling well, so i just want to go out haha idk it's confusing, but you guys understand i'm sure. I just try to be as happy as possible, and try to be the best girlfriend that I can be through this.
That's crazy about the 75% statistic, goodness, that's not fair at all for us with illness that can control our lives. :( I say, if they can't handle you at your worst, then they don't deserve you at your best. it's so true. Guess we all just have to be strong and try to keep our relationships going well.
and about my dad... he saw the pics of my small intestine, but somehow he just doesn't get it. i don't understand, if i saw those pill cam pics i'd be like... o_O wow. i'm getting another pill cam done on the 20th so i'm sure that will just show more stuff because i don't know how fast my crohn's spreads.
I think that when the mayo clinic does the official diagnosis, my dad will finally believe me, because he talks so highly of the mayo clinic. I hope that your marriage does better after you get your diagnosis and meds started too Allie.

Flowergirl, I guess it makes me feel better that I'm not the only one going through troubles with my relationship. They will never truly understand that doing laundry or cleaning actually uses a lot of energy when your not feeling well... but maybe they will start to sooner or later.
 
I'm sorry everyone is having trouble :/ I do think being chronically ill puts a huge strain on any relationship. While there's always more than one reason, I do think my first marriage was hurt by me being sick. We married two months after I graduated from college. Although I had some issues before we were married, we were young. His mom had MS but for whatever reason we never talked about what illness would do to a relationship. Maybe in our youth we thought it wouldn't matter? or we didn't think about being really sick? I would have never guessed then that I'd feel like I do today :(

Some people seem to be incapable of being the healthy half of the relationship. I'm sure it's a struggle for anyone. Every relationship is work though, right?

Kelly tries very hard to be there and be supportive of me. Sometimes I feel like she asks me to do things that I shouldn't do, but she might be right, you know? When I feel so terrible, ill, and depressed, I may think I can do less than I am capable of. I go through worries that my illness will be the end of our relationship someday, but with Kelly, I don't think I worry much more that the end would be due to my being sick than other reasons.

I hope you guys are all doing okay today. I tried to respond a few times this weekend, but I'm really depressed and it makes it hard to respond to stuff online. constantly questioning myself and what I'm writing. how offensive it'll be, eh I don't even know all the crap going through my head.

And I feel like I was punched in the lung. I have a muscle spasm under(?) my back left shoulder blade, and it feels like I'm constantly being prodded in the lung. ugh.
 
I'm glad I'm not the only one going through troubles like ours. I hope all of us figure out a balance! I think it will just take time. I sent Stuart a text last night that said: " 'oh, my friend, its not what an illness takes that counts, its what you do with what you have left'. Thought of you when I read this. We can see a positive from this, you just have to think positive. I believe in you baby." He replied with "Yes, I need to think about what I can do with my baby doll, not what I can't." So I think we are on the road to figuring this out. :)

My Rheumy appt went well this morning. I explained my history and symptoms, and within 5 minutes of the appointment he was explaining Lupus and why he thinks thats what I have. He said if the blood tests don't show Lupus he is going to diagnose fibromyalga, but he thinks it will be Lupus in the end. He put me on a muscle relaxer at night to see if that would help my sleep, and is keeping me on the tramadol. I will be seeing him again in exactly a month, and I get the blood tests back in two weeks. I know this sounds weird, but I hope I am ANA positive so that I can start treatment. I'm very tired of this!
 
Allie, I hope the rheumy helps. My plaquenil is a lupus/RA/malaria drug even though she's only dx'd me with fibro. Not everyone with lupus is ANA positive. My ANA and RH factors are non-zero but still considered negative. If your ANA is positive hopefully they'll look at the pattern, it can give you a lot more information!
 
Allie, so you had the Lupus blood work done at your Rheumy appt today? How exciting, I hope the next 2 weeks fly by and that the results are able to get you a proper definitive diagnosis. Fingers crossed for you big time, I really hope that this gets you some answers finally!

Sunshine, not much longer for you to wait either. I hope that pill cam re-do gets you a final diagnosis once and for all!

As far as relationship stuff goes, my hubby really didn't "get it" either - until he got kidney stones. He didn't know what they were right away, but his symptoms were LRQ pain and nausea/vomiting that would come and go. He had heard me talk about my LRQ pain and he was afraid he might have Crohn's too (or whatever I've got). He dealt with his kidney stones and the horrible pain and vomiting for about 6 months, until finally his doctor decided that the stones weren't going to pass on their own and that hubby needed surgery to get them out (one of the stones was impacted in his kidney and it wasn't going anywhere). So hubby's now dealt with long-term awful pain and gastro symptoms which came on out of nowhere. He now understands what it's like to feel fine one minute and to feel horrible the next. I don't think he fully understands everything I go through, but to be fair that's probably impossible unless you have this illness yourself. But, now that he's been through such an ordeal with his own health, he understands me a LOT better and our relationship is much improved. He even admitted to me that he knows he was kind of a jerk early on in my illness, and he has said once or twice that he wonders if I put a "voodoo curse" on him to make him have similar pain and problems. Ha ha, I wish I had that much power! It just happened to work out that way. And now, I have been in his shoes too - I have been the caregiver for someone who is so sick that they vomit from pain or just wants to sleep instead of doing anything else. I get it - what he goes through with my illness is certainly no cake walk. It's tough for the caregiver. Of course, it is much tougher for the ill person!

I'm doing blah today. I slept very poorly the past few nights. Just couldn't turn off my brain, you know? And I still haven't heard back from my GI about the medication switch, so I've still been taking Asacol and will continue to do so until he calls me back. I called his office at 8:00 on the dot this morning and left a message with the receptionist, who had the nurse call me back, and the nurse is going to have the doctor call me. Sheesh, I hate going through the hierarchy! So now I'm just waiting on that call back saying what to do. My guts aren't happy, probably because I'm a bit stressed and over-tired. I've been cramping up all morning and my appetite has been poor. It's one of those days where I wish I could just crawl back into bed and hibernate there for awhile. I tried to have a good weekend - went to my grandfather's 80th birthday yesterday and that was pretty fun, but I feel run-down and exhausted today. And grumpy. If my GI calls and says to take another IBS med or something like that, I may just lose it and scream at him!
 
Oh yeah, and I should mention - yesterday was the 2 year anniversary of when I first got sick. It's kind of depressing to have officially hit the 2 year mark and still not have any answers. That's another reason that I'm in a foul mood lately. :(
 
So did you hear from him, Cat? I saw the other thread where you said that he said asacol has long term side effects. Wow, that definitely sounds like a cover your butt move. If he's willing to admit that you have an IBD of some sort, seems like it wouldn't be such a stretch to trial a very mild medication. Pred, I can understand not wanting to use in an undxed situation b/c it does have such a crazy SE list even in the short-term, but I thought those 5-asa drugs were pretty stinking mild, that being one of the reasons they don't work for everyone. Oh, man, I can totally understand your frustration. Why all of a sudden is it a bad idea? He should have said that from the get-go.

Allie, glad your rheumy appt went well. Hopefully you will get your answers shortly.

Hope everyone is having a decent day, in spite of health troubles.
 
No, May, I haven't heard back from my GI yet. I'm going to call his office again in a little bit and remind them that I'm still waiting to hear from him. In the meantime I did some googling and the only thing I found was that in very rare cases, Asacol can cause kidney damage and/or failure over time. Okay, so, if my GI is concerned about that, why not do blood tests periodically to check my kidney function? Yet another thing I'm going to mention to him when he does eventually call me back! Yes, there is kidney failure in my family - my grandfather has been on dialysis for 5 years now - his kidney failure is due to diabetes though, which I do not have. And he's the only one with kidney issues. But I don't even know if that's the side effect my GI was worried about, because he still hasn't called me back. Urgh! Frustrated and pissed off!
 
Allie, I'm glad things with the hubby are going to get better!! :) yayy! And I'm glad your appointment went so well today, looks like your almost there to your diagnosis! He seems like he knows what he's talking about and what he's seeing. Today is a great day for you! :)

Cat, that's good, well not good, but fair that your hubby had to go through some tummy stuff, so you got to know how it was to be the caregiver (which your right, it's just as hard to see someone else in pain), and also he got to know how it was like to be in pain and have trouble for a long period of time. I'm sure it makes it easier now when you're not feeling well. I'm sooooo sorry that you have been sad because of the 2 year mark, and you have a right to be upset! I told my mom when I was in a lot of pain during all the preps and stuff that I was in so much pain that I couldn't be strong anymore, I had to cry and be upset, because it's been too long and my young life which I'm suppose to be out having fun, has been spent in the bathrooms at home. She told me it was okay to be upset, and that I have every right to cry, because I've been strong for so long. So let out those tears and be angry if you are! :) *HUGS!*

My fat diet starts today! eeeeek! :( Hoping for the best and not for too much pain and cramping! Can't wait for this diet and pill cam thing to be done and over with. I REALLY want to go see giraffes! And all this stuff is just getting in the way! goodness! :p

I uploaded a picture I found and it's just a reminder that if you want to cry, it's okay! We all have a right to let out those tears every once in a while. :)
 

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I went to the chiropractor today for this spasm in my shoulder. Since my GP left a year and a half ago or so he is the only doctor I've had longterm (ie: 7ish years). He knows something is wrong with me. He said my body shape has changed, my curves are mostly gone :( I knew this but it's something else to have one of your doctors notice and comment. Especially when the treatment the endo gives me for metabolic syndrome is supposed to improve my shape not make it worse. He agrees with my intuition that this is auto-immune in some way, and he gave me some suggestions for a new GP.

I'm just really really depressed today I guess. Everything is making me feel worse. I took 4 tramadol already and my stupid back still hurts. oh.. but my D is finally back. it finally broke through the painkiller constipation. maybe my migraines will go away now. I swear being constipated makes me sicker in some ways. darn crazy mixed-up body!
 
Carrie, so sad to hear about how your D is back. but I agree SOMETIMES it's better than be stuffed up, just because it gets out of your system faster and you don't get nausea from it and stuff. I know it's not good that another doctor realized that something was going on, but at the same time maybe it's kind of a good thing. He now has given you new GP's to look into who may be able to help you better. Keeping you in my thoughts! Hang in there! :)

Soooo... I just realized that my fat diet, I have to ingest 100 GRAMS OF FAT EVERY DAY FOR 4 DAYS! And you may be thinking... that doesn't sound like it would be very hard. But for a girl who just eats like 1 hot dog and macaroni for the whole day is a lot hahah! o_O I was like oh my goshhh, that's gonna be making me 1) eat more than I have ever eaten, and 2) ingest a lot of fat that normally never enters my body. I don't think my body is going to know what to do with all of the food and all of the fat. They gave me a chart of foods that are popular, and for example 1 hot dog is only 15 grams of fat, a medium milkshake is only 10 grams, 15 french fries is only 10 grams... lol So, looks like I'll have to eat breakfast, lunch, and dinner with many snacks in between. So i'm going to start the diet tomorrow, and get up early so I can do this. Today I woke up too late because tummy was hurting last night till early this morning. Just decided I would share my interesting realization of this fat diet with you all! :p
 
Sunshine, I have to tell you that every time I think or read about your fat diet I feel immediately nauseous. I hope it goes better than you are expecting it to. I found it interesting that you're going to have to do a fat diet. The first time I ever read about one it was in reference to recalcitrant weight loss. If you are extremely obese and seeing someone for it, there are a variety of diets they can try. Apparently, for some morbidly obese people who aren't losing weight even under medical supervision, they can try a fat diet. It sounds a little different than yours though, because it was low carb/high fat.

Have you thought about meals and snacks that you're going to try?
 
Sunshine, are you able to eat stuff like mayonnaise, olive oil, avocado, peanut butter or almond butter? Or even salad dressing or regular butter? Stuff like that is high in fat but might not upset you as much as something like a burger and fries would. I just googled, and it looks like one medium avocado contains about 30 grams of fat. So one of those would be almost a third of the fat you need in a day on this diet. Read some labels and see if you can't make this a little more easy on yourself! It doesn't matter what you eat, right? As long as you get 100 grams of fat daily?

Carrie, I know the feeling, I've been depressed since my GI said to stop taking Asacol. There's been other stuff going on lately with me too - I think I told you guys about how hubby had a job interview for a really awesome full-time job doing animations at a laboratory? His interview went super well, he thought. But a couple days later they called him and said he didn't get the job. So he and I have both been bummed about that. And, at my grandpa's birthday yesterday, when he blew out the candles on his cake he told us his wish - his wish is that my grandma dies first, because he said that he would rather bear the burden of being alone without her, than her being alone without him. Sweet, but also really sad. So yeah, stuff's been getting me down lately. I went to the gym and felt somewhat better for a bit, but am back to feeling very blah again.

Oh, and my GI still hasn't called me back. I called his office again a little while ago and was told he's only in the office 2 days this week, but that the nurse is trying to reach him ASAP. (I think he's at the hospital or other locations the other days of the week so she should be able to reach him via email or phone, I hope.) So yeah, I'm just going to keep taking Asacol until I hear from him! I've been racking my brain trying to remember the med he wanted me to take. It was something salicate or salicyte. But there was a word before that. I did some googling and it might very well have been bismuth subsalicyte - which is fancy talk for Pepto Bismol. And if that's the case, I'm going to cry and scream. It's like, hello, I've been ill for 2 years now. Do you think I haven't already tried Pepto? I've given it numerous chances and no, it does not do a damn thing for me! Yes, I have read the studies that says that a long-term high dose of Pepto can help microscopic colitis in some cases. But frankly, I kind of doubt that I have microscopic colitis and part of the reason why is because Pepto doesn't do a thing for me! Arrrgh. I so hope this is not the case. I don't even want to humor my GI and try Pepto for a week because I know it won't do anything. I will most likely burst into tears and beg him over the phone to please just let me stay on Asacol. I am just so sick of this!

Oh, and even if he does make me do a weeklong trial of Pepto (assuming it was Pepto that he was talking about) before I am allowed to go back on Asacol - he never actually told me what dosage or how many times per day etc to take the Pepto. So I still need him to call me back before I can do anything! *grumble grumble*
 
@Sunshine - Do they want you to eat certain types of fat, like unhealthy ones? Or any fat will do? Just curious. I would be in the toilet all day with that diet, unless I only ate really healthy fats - like EVOO and avocados and stuff like that.
 
LOL Cat, looks like we had similar ideas about the fats. Must've been posting simultaneously. :)

There is no way he meant Pepto Bismal. If that is what it ends up being, I will come yell at your GI for you.
 
Ha ha, May, you and I both posted about olive oil and avocados at the same time. Great minds think alike! :) And I'd be in the toilet all day too (with my head in a bucket probably) if I had to eat 100 grams of fat in the form of greasy fast food type stuff.

Edited to add: Ha! And then we both posted about how we both posted the same thing. Thanks for the laugh, I needed that! :D
 
haha I get immediately nauseated as well when I think about it. Ugh.. :( I have lost a lot of weight, about 20 pounds now in the course of 2 months... he thinks that my small intestine might not be absorbing the way it's suppose to. So by doing this fat diet, I will collect all of my D (eww gross!) and then they will find out how much fat was thrown right to my waste as D as oppose to being absorbed. And that is suppose to tell him if my intestines are absorbing fat the right way or not. In the chart they gave me, it says to eat hamburgers, milkshakes, fries, cheese, popcorn, any dressings, etc. Basically fast food gross stuff and junky foods. The only thing out of all the fats that I am usually good with is ice cream. but everything else whenever I've eaten it in the past has sent me straight to the bathroom. So I think I'll be having to stay close to home for the next 4 days of doing this diet. Maybe my boyfriend can bring me a milkshake! :) mmmm yum. Everything else just sounds icky but I have to do it to get the best results for the doctor. I will definitely keep you guys updated tomorrow about how my diet is going. My dad of course since he doesn't understand me, was like "GOOD! You can eat like a normal person!" I was like.... uhmm, yeah but my intestines aren't like a normal persons, so this could get ugly... :( Oh well, I give up with my dad, he doesn't understand. maybe eventually he will when the mayo doctors tell him what's going on.

I'm thinking of starting by easing the fat diet a little by eating something fatty for dinner so that tomorrow my intestines aren't like WHAT IS GOING ON lol... but I don't know. We'll see. I think no matter what my intestines aren't going to be very happy campers. I'll just hope for the best though.

I added an album on my crohn's forum page that is called "inspiration", I always look up inspirational quotes and pictures when I'm not doing well or upset, and it seems to brighten my day. Just thought I would share those pictures and quotes with you all if you wanted to look at them they are there for you too. :) I'll keep adding more when I find good ones.
 
Cat, I'd totally keep taking the asacol as long as you have some. I'd also press the GI for more discussion before he switches you. Do you have refills?

Sunshine, I've never had them, but I've heard pork rinds aren't too bad.. if you're going to attempt crispy junk food at all.
 
Carrie, unless my GI cancelled them, I have 2 more refills of Asacol. I also have a little less than half a bottle of Asacol at home. So I'm set for the next couple of weeks at the very least.

Sunshine, can you do potato chips? I can do potato chips really easily (as long as they're potato, not corn chips, and make sure you get MSG-free ones - Lays and Sun Chips are both MSG-free). That'd be junk food but might not hurt your tummy so much, if you can handle chips. That's one of the only greasy junk foods I can handle. I tend to get low sodium, especially when I'm having a lot of d, so I eat a fair amount of chips to replenish my sodium and get some calories in me when I need it. Anyway, whatever you end up eating on the fat diet, good luck with it and I hope it's not a (yet another) miserable experience.

I just remembered that one time you said all you were having for dinner was cake. That sounds like a high-fat junky food to me. Could you have cake on the fat diet? Oh, and popcorn??? Whoever put popcorn on your list should seriously be beaten! Ouch!
 
You know, I am not that excited over how this morning went, lol. The reason being he didn't go over all of my symptoms, like my hair loss, and the abdominal pain, rashes, etc. Another one being he wants to diagnose me with fibromyalgia if the ANA comes back negative. I'm not trying to be mean to others that have that diagnosis, but I see it as another diagnosis like IBS. I would stay on the tramadol, but it wouldn't explain a ton of my symptoms and why my body seems to be deteriorating. So I dunno, I'm kind of indifferent about this morning. Maybe since I'm not getting my hopes up this is actually the test that will show something lol.

My hubby has been really sweet today. :) We have only been able to text lately because he is in the field, but he asked me all about my appointment. I gave him a blog entry about someone with lupus and how they went to disney world, and how awesome their hubby was at keeping them ok and knowing when to go home, and he said he loved the article and he wants to do that for me. :) Things are getting better and it is making me very happy. :)

Sunshine, that sucks with the amount of fat you have to eat. that sounds disgusting. :(

Carrie, I have heard of that drug before. I saw on your picture album that it has helped your hair loss. Have they figured out why it helped it? I would love if I stopped losing my hair.

Cat, I'm sorry you haven't heard from your GI. >.< That's weird that he would tell you that and then leave you hanging! I'm also sorry you aren't feeling your best today.
 
Allie, I've heard similar things about fibro, that in some cases it's kind of a "catch-all" diagnosis for people with chronic pain, kind of a generic diagnosis when they really don't know what's causing the pain. Just like what IBS can sometimes be for gastro symptoms. From what I've read, they really need to do more research into both fibro and IBS. These illnesses are misunderstood (obviously since most if not all of us here have been diagnosed with IBS at some point!) and the treatments aren't great either. I'm not sure what the treatment for fibro is - is it just pain meds? If so, obviously that's not working for you! I hope you don't get stuck with a fibro diagnosis on top of IBS. It's clear to me that there's a lot more going on with you, and I hope the blood tests shed some light on what it is!
 
Yeah, I agree. I think they do a catch all with fibro because they really don't have an illness that explains just chronic pain. I have heard that your body can be in pain from a pre-existing injury for no reason. If that is the case, they need a diagnosis for that and how to treat it. Also with fibro, from what I have read on the mayo clinic's website, there are certain spots that hurt, and upper abdomen isn't one of them. I obviously have more going on, but I just don't think my rheumy absorbed that in the little time he saw me, other than the fact he thinks its Lupus.
 
Allie, I totally know how you feel about the fibro diagnosis. I accept that I have fibro, but I do not believe it's the big issue. I'm not going to stop trying to figure out what that bigger issue is. Lupus isn't the be all end all of auto-immune illnesses either, there are sooo many that have overlapping symptoms.

No one tries to figure out why a drug works! And it's all subjective anyway. If I tell my rheumy I think it's still working we keep on with it. As with any other medication, the further I get from first taking the less able I am to determine if it's "still working". too much going on.

Cat, fibro has progressed a bit more than IBS. There are some drugs other than pain meds, but they're essentially psych drugs. There's been more research going on with it as well. Some doctors believe very firmly in fibro and some don't. There is a similar disorder called polymyalgia rheumatica which, to me, sounds just like fibro with an inflammatory component.
 
sunshine, you have my sympathy. I don't mind some fatty foods, but overdoing it is gross, and eating that way because you have to is just awful.

If you like ramen, one package is usually about 20g of fat. That might help out at the end of the day, if you don't feel up to eating chips or donuts.

Also, if you like spicy food, Nong Shim is a korean company that makes fantastic instant ramen and udon. Lots of spice, lots of flavour, and actual bits for the soup - like dehydrated kimchee or bits of fish cake and shredded carrot - that make it a much more satisfying experience than just a bowl of noodles.
 
Thank you everyone for the thoughts and concerns about what to eat. I think it's absolutely gross and cruel to have to purposely eat fatty foods but he's making me do it for a reason to get more info about what's going on, so I understand, just not excited to do it... :( I'm still up right now and it's 4:30 in the morning... Gotta wake up at 9 to start my first fatty meal.

Hope everyones doing okay.
 
Sunshine, I hope it goes better than you are expecting.

I didn't have a migraine yesterday! I really think being constipated gives me more migraines. not that I can explain that. I did also go to the chiropractor yesterday, but after the migraine would have typically started. So that could also have helped, but I still have a painful shoulder.
 
sunshine - i was going to suggest same as cat. mayo, olive oil, avocados, peanut butter all have tons of fat.
donuts seem to be really easy for me to eat too. pancakes & syrup? the white bread base should make it a little easier to go down.
good luck!
 
Hi all, my performance on Friday went well, I was able to stay for the whole show! I was really bummed since last week I was in a competition that I had to leave before it even began because I hadn't taken a tramadol and... well you all know how it is. So I'm glad I was able to go to this show, especially sine a lot of people said my poem was the best of the night, woo!
I'm so frustrated with my situation. I've waited 4 months for treatment and finally I get a script, and my insurance won't pay for it. Finally I got a call back today from my GI's office, and they said that my script needs a pre-authorization, or something like that, I don't know what it means, but they seem to be working on it. Hopefully I will be able to start Entocort soon and see if I respond.

I slept awfully last night, too much pain to sleep in, and I'm being stingy with my tramadol since I don't know if I will be able to get a refill without my insurance refusing again. Ugh! This isn't fair. I should be able to get the treatment I need, diagnosed or not.
Also, Allie, or anyone else on tramadol, does it help for your joint pain? Tramadol will take the edge off the adb pain but will do nothing for my joint aches. Rheumy appt is still 2 mos away.

About the relationship thing, it was helpful to read everyone's experiences, since I'm still so new at this illness. My honey and I aren't married, but we've been together almost 6 years (anniversary is the 20th) and living together for 4. I feel really guilty about getting sick. I know neither of us signed up for this, and he now makes all the meals and does all the cleaning. He's been supportive, making sure I eat, asking how I feel, but I know this is just the beginning of it. Does anyone else feel this guilt? I can't help it. I am sorry for feeling like this, which makes it even worse. I refuse to worry about statistics though. There's some giant number for high school sweethearts that end in divorce. But we aren't the normal high school sweethearts either. We are inseparable, pukey, perfect-for-each-other, kind of couple. I don't really know where this post is going. Sorry about that.
 
dahlface, is your insurance refusing the tramadol or just the entocort? tramadol is a pretty common painkiller nowadays. they shouldnt be refusing it :(

I can't take enough tramadol to get complete or near complete relief. It does help a bit though.

I feel terrible guilty all the time.
 
As far as I know, just the entocort, but because I'm on my dad's insurance, they've been saying we've used all our benefits for the year, already. I just have to call and find out, but I'm nervous they will yell at me, or think I'm a druggie or something.
 
if they yell at you, yell back. who cares what they think? the person you're going to be talking to is an insurance rep. They don't know your history or why you need the tramadol.
 
That's really weird they are refusing the Tramadol. I don't know how common it is, but it is a synthetic narcotic, so you HAVE to be careful with it. I have learned you can't use it like Tylenol (which I have been doing lately). It worked better for me when I took it once a day, and on the really bad days a couple times. Carrie, I think you have built up a tolerance. I have as well, and even when you add more, it doesn't help. When I have built up a tolerance in the past (where one doesn't take the edge off), I have stopped taking it for a couple days. It usually helps. Right now I'm just limiting myself to a couple a day, even though I pretty much have unlimited access to Tramadol...my Rheumy's new RX for it for me was 90 PILLS....but that doesn't mean I can abuse it.

Have you guys tried other methods of pain relief? Menthol gel, heating pads? It would help to use other things to keep the Tramadol tolerance down.

The tramadol does NOT help my joint pain. I use menthol gel for that. I rub it on my wrists and any other joints that hurt. I think its because my joint pain is inflammation (arthritis) so it doesn't help that, even though my rheumy didn't feel inflammation yesterday in my wrists.

As for me, my first night with muscle relaxers was last night. I took it at 9pm, and within ten minutes my ab pain was gone. It was pretty cool. After that it kind of came and went, which was weird. I fell asleep at 11...woke up at 7, 8, 9, 10, and then kind of got up at 10:30. The groggyness was unreal. I took a tramadol bc my ab pain was back full force, and drank a 5 hour energy (we have a whole box of them in the house for no reason)...and I started crying, then I was laughing, then I was cleaning my room. It was so weird! I feel somewhat normal now.
 
Allie, I get 90 pills a month too. I use a menthol type gel as well for topical use. It doesn't do anything for my joint pain though which I also think is inflammatory. my big issue is that I'm in so much pain all the time, that I just don't know how to treat it all. I haven't taken any tramadol yet today but I feel like hell.

muscle relaxants help me a little bit, but I have to take multiples. I'm very medication resistant. :/ last night I needed 4 and it put me to sleep before helping with the spasm. sigh.
 
This is the first time I've gotten more than 30. I don't even know how to use that many in a month.... in Germany 30 would have lasted me 2 months, at least! I'm glad I'm not worrying about using them though, because running out was one of my fears before.
 
I stock piled mine when I was on a tramadol vacation. I can easily use 8 in a day on a bad day, but I try to stay between 1 - 4.
 
Yeah, on Saturday I used two every 6 hours, it was bad. I was trying to stay pain free and stay still in hopes I would have a better week. Today I took one at 11 and that's it.
 
I've been doing 2 a day or so, on good days I can get away with 1. I have to take one before work, I can't deal with all those kiddos and the pain. Lately, I haven't gotten much relief out of 1, but now I'm down to my last one, which I will save for work on Thursday. Took one at 12 today, about to head off to work. My dad doesn't approve of me taking pain killers though, and I know it really isn't the best option, but I don't have a choice.
 
Arrrggh! #$%&*!!! I got a call back from my GI's nurse this morning. She talked to the doctor and he said that the bismuth salicylite stuff is what I should be taking. The nurse assured me that it's not exactly Pepto Bismol, but it's a similar formulation. So, I went to my pharmacy, and they hand me... a box of Pepto Bismol. Seriously.

I called my GI's office and said that frankly I'm insulted and that I want to go back on Asacol. The receptionist I spoke with must be new, she was pretty slow pulling my name up in the computer and she didn't sound familiar, but I like her. When I told her about the Pepto, she was shocked too! She said she's pass along my feelings to the nurse & doctor and one of them will call me back. I wonder how long THAT will take! In the meantime I guess I'm just not going to take anything. I was doing mostly okay before Asacol, so if my choice is Pepto or nothing then I'm just not going to take anything (except for what I was already taking, Amitriptyline, Prilosec and Zantac). I'm frustrated, pissed, insulted, outraged... there aren't enough words!

So, anybody know of a good GI? Cause I think I need a new one...

Enough about me. Allie, I've done heating pads for pain, both for my hip and my tummy. I was told that ice is usually better for arthritis, and it's probably better for IBD as well since it makes swelling go down - but heat feels soooo nice. Hot baths are lovely too. For the arthritis/joint pains, exercise is great. Walking seems to make it worse, but strength-training and aerobic type exercises both seem to make it better. I've been meaning to do more yoga too and I'm sure that'll also help. Sometimes just meditating seems to help too, at least it gets my emotions under control for a bit. I get super emotional in a flare, and sometimes just shutting my eyes and taking deep breaths while trying not to think about anything can do a lot of good. (The good thing about that is I can do it on the toilet, ha ha.)

Dahlface, I really hope you can get something worked out with the insurance company. If not, is it possible your doc could try you on pred instead? Pred is a similar medication to Entocort, it's just that pred is systemic and Entocort is not - so there's a lot more potential side effects with pred. It goes into your blood stream and zaps inflammation wherever it is in your body - Entocort only works on the terminal ileum/right colon area of your intestines. But, pred is very cheap whereas Entocort is very expensive. Perhaps your GI could give you a low dose/quick taper of pred? I've been on both 10 mg and 20 mg for short times, and both dosages worked really well for me.

Carrie, I'm the same - I stockpile meds even when I'm not taking them, in case I need them in the future. I got all my refills of Entocort even when I was told to stop it. You never know when you'll need to take something like that again! I also have a bunch of pred at home and obviously now I have a pile of Asacol that I'm not allowed to have (I'm really hoping I can change my doc's mind on that one!). I guess I'm on an Asacol vacation now so I may as well stockpile.

Sunshine, how's the fat diet going? I hope you're not in too much distress from it and are able to get some enjoyment out of eating all the naughty foods we're not supposed to have.
 
Cat, If I were you I would stay on the Asacol rather than stop taking anything. I know I'm not a doctor so its just what I'd do. Why stop something that works especially if you're about to try to make your doctor keep you on it?
 
Carrie, I thought the same thing - but I also thought, if I come off of it for a bit during this Pepto drama, and especially if I get worse (which is likely to happen due to the stress and frustration of this situation) then I can argue that obviously Asacol was working great because now I'm off of it and now I'm worse. Plus, I'm supposed to take it with a meal, and frankly I have barely been eating the past few days in addition to barely sleeping. I did get 9 hours last night but am still a little bit exhausted. So yeah, I guess I really don't know what to do. I'm hoping my GI calls me back SOON so we can get this silliness resolved.

On the plus side, I'm pretty sure I'm losing weight again, and I've still got a bit of an Entocort tummy to lose so there's that. I was discussing this with my Crohnie bestie, and she's the same - we don't eat when we get stressed, instead we pretty much stop eating in response to stress. She's been on Seroquel for 2 months which has apparently caused her to gain 20 lbs in water weight, even though she's not been eating much at all. She's stopping that med and will be taking something else. So both she and I are hoping that at least our stressful situations will allow us to lose some weight now (she's getting married in exactly one month so she's got me beat on the stress thing!).
 
cat - what is wrong with your GI?? pepto? my GI's in Florida, so probably not a good reference.

allie - epsom salts are good for arthritis. followed up with ice. i know that sounds weird. stretching is good for it too.
 
Cat, I cannot believe they want you on Pepto. What the hell?? As for the pain stuff, yeah, I use cold stuff for my pain, heat just doesn't help. I put that menthol stuff on my abdomen and my wrists, and it hides the pain. I like it!

I have heard that exercise is good for chronic fatigue too (they have an article on the lupus foundation's website about it). They talk about Wii fit, which I have in Germany, but not here. :( I'm scared to exercise because it usually makes my pain worse.

I had an OBGYN appt today. I completely forgot to get a refferal for it, so I have to pay for the entire bill. :( I called Tricare and begged them to approve it while I was there and they refused. All I was there for was a couple questions and a birth control RX. I talked to the OBGYN about whats going on with me, and he was really nice. He said my symptoms sound more autoimmune, and to go that route. He told me to let him know how the blood tests turn out, and if nothing shows up he wants to do laproscopy to look for endo, but that probably wont happen.
 
Cat, again I agree with everyone else, pepto... that's just ridiculous! The pharmacist talked to my mom one time and she gave my mom pepto and I took so much of it, and it never worked and the pharmacist was so surprised. I was thinking, how can you be surprised? Zofran doesn't even work for me for nausea and upset stomach! lol only through the IV does it work for me, which is kinda weird. but the nurses at the ER seemed to understand that. But anyway, I hope you get that figured out, Cat. You need to get back on the stuff that actually works for you. Must be so frustrating... so sorry for you. :(

This diet sucks!!! :( I don't wanna play this game anymore... no fun at all...
I'm eating more than I ever eat, and all this food is just disgusting, I can't imagine eating this for the next 3 days after today, but I have to... I had a cheeseburger and fries which met more than half of my required grams of fat, so that was good, but I just still feel full and gross, I don't want to eat anymore, but I HAVE to which is killing me. After eating half of the burger I was running to the bathroom already, it's crazy. I already got a sample done! haha I guess that's good news! I just feel ewwww. :( Now i'm drinking a medium milkshake for 10 more grams of fat, and then I'm going to snack on some chips later for about 20 more grams of fat if I eat 30 chips. And then to finish it off for today I think I'll try to eat Ramen. And that will be my 100 grams for the day... wooooo. :( Glad day 1 will be over soon.

I'm really getting worried about my relationship with my boyfriend. We disagree a lot and get frustrated very easily since all of this tummy stuff has gotten worse. A lot of this is my fault probably because I get irritated easily by some things when i'm not feeling good... but I have fixed that lately but sometimes it's hard when you don't feel well. :( And I get upset sometimes that he doesn't stay up with me or even try, or that he's so busy with working and working on his car and such, and sometimes I feel like a last priority kinda. Even though he does a lot for me. I still wish he was there for me I guess MORE when I'm needing it the most when i'm not doing well. But I feel like I'm alone a lot when i don't feel good. and it's hard for me. And I know it's hard for him to see me so hurt and in pain, but it's just frustrating. I keep telling him he doesn't understand, but then he tells me that I don't understand what his point is, and he told me today, "I can't do this my whole life, be up with you every night, you have to be able to take care of yourself too, Kelly." And I understand that, but ughhh things are not going to be easy because this will always be something I'll be dealing with or battling. :( I didn't choose to have this illness... it's not fair to me, and I know it's made me harder to be around as a girlfriend, but I'm trying... Sorry had to vent. I just don't know how to make things better. :(
 
I'm sorry the fat thing isn't doing well with you. :( As for the relationship stuff, I understand what you are going through. Stuart doesn't stay up with me ever. When I'm in Germany I'm always up on my laptop with him sleeping next to me. He also tells me I need to take care of myself more often...I think they don't understand that we don't want to be taken care of, we just want support and comfort. I'm not looking for him to feed me my meds, I'm looking for him to keep me company and make me feel better. I wonder if there is a way we can explain that to them?
 
Allie, that is EXACTLY how I feel... and exactly word for word what I want as well. We can get our meds, drink water, ginger ale, use heating pads, do whatever to help ourselves, we just want the comfort and support more. It's so hard to be alone, because we already are alone with the illness because they don't have it. And even though they are "with us" they are sleeping, it's not the same really. They don't get it lol... I wish they would understand better... Our situations sound just alike, that's crazy.
 
Hello Cat,
Is it possible that your GI prescribed De-Nol which is bismuth subcitrate and used for H.pylori and upper inflammatory condiions.
Sometimes it gets confused with Peptobismol which is bismuth subsalycilate and which action is quite different in that it is not effective against H.pylori.
I share your upset and concerns about your treatment and hope it will soon be resolved
for you, so that you can feel better.
Some GI s are so oblivious to the suffering they put us through, especially when they are so inaccessible to us in a timely and caring response.
Trysha
 
Thought I would check in, sorry things are not going well for everyone :(

I'm quite depressed at the moment, really not fair I have to pass yet another month sick while waiting for my surgery consult... I really hope that email will lead somewhere.

Just sick of being sick. I can't live a normal life, or any sort of life, in the meantime.

I am loving having the house to myself while Mum is on holiday, but you know i'd love a holiday too, and I actually have a little money I could use, but no you can't do anything when you are sick :( Just get to watch everyone else enjoy themselves. I would give my right arm for a break from all this.

Would have liked to have friends round one evening while I am alone but haven't felt strong enough to do so.

Good news in the cramps went Tuesday, I really hope they don't come back! Bad reaction to dinner last night so I won't be having that meal again. And since it looks like I am having surgery, I need to lose weight. As I am overweight and need to minimise the risks of surgery. But the only way I can think of is to stop eating the wrong foods, which seem to make up 75% of my diet right now, since I can keep those things in.

Before I figured being able to eat and keep food in was more important than what I was actually eating, but the surgery changes things. And that leads into worry about having different foods react, since I may have to eat out of my safety zone. Oh well, needs must.

Got to confess to Mum how bad I have been too, that is a scary prospect! I mean the morning she went, I could not get out of bed until 11:30am, as I had alot of pain and felt so very weak. So I laid in bed and watched tv via laptop, and got up to see her off and deal with gardener which was midday.

I've been waking up with horrid pains too which is never a good sign. And sleep, i've been sleeping alot in the past year but the amount now is just getting silly.
 
allie - low impact exercise would be best. i wouldn't do running or weights or elipticals or anything. anything in the water is great because it takes the stress off your joints. yoga is good. maybe some light bicycling.

sunshine - the relationship stuff is hard. but don't blame yourself for everything. you didn't ask for this. if someone could take it away you'd gladly welcome that. and you need him to understand that this won't be "forever". yes, you'll have the disease forever, but they have treatments. that's why you're going through all these tests. so you can get better. he just has to know that there's going to be some times where you feel great, and sometimes not so great. right now it's not so great.

star - good that your cramps are going. try to stay positive!
 
Thanks all. When I got home from work yesterday, I burst into tears telling hubby about the Pepto debacle. He calmed me down and said not to fire Dr. S until I at least hear back from him and talk to him about all of this. I took a nice bath last night and just relaxed. Slept like a rock, too. But in spite of all that, I feel like hell today. All the color has left my face and I'm quite nauseous. I haven't been eating much at all and that usually makes my guts upset - oddly enough, my guts get worse when I skip meals or don't eat much. So I'm sure it's partly that, and also possibly partly that I had my flu shot yesterday, probably part stress, and it may even be partly due to the fact that I haven't had any Asacol in 24 hours now. I am going to tell my GI that I've been feeling worse since stopping the Asacol. If I don't get a call back this morning then I will be making yet another call to his receptionist saying that this is just unacceptable treatment.

Trysha, thanks for the thought, but I really do think my GI probably meant Pepto. I don't have upper GI issues except for GERD, and I haven't had H Pylori as far as I know, so I'm assuming he didn't mean that other med that you mentioned.

Sunshine, I'm sorry to hear the fat diet is kind of miserable. :( And I'm sorry to hear that things aren't going so well with your boyfriend either. Hubby doesn't stay up with me either when I'm up all night and flaring, but honestly I don't mind so much. When I'm flaring it's hard to carry on a conversation with me because I'm in and out of the bathroom every 10 minutes or so and I also cry a ton - I'm not the easiest to talk to in a flare! When it comes down to it, I know he'd stay up with me if need be, like if I was in the ER or something. I stayed up with him when he was in the ER with kidney stones and I know he'd do the same for me.

Star, I'm sorry to hear you're feeling so down. Is there maybe one understanding friend you could have over, just to watch a movie or something? My Crohnie pal and I have lots of movie nights and nights where we just play bingo on the Wii (we both joke that we feel like old ladies so we may as well play an old lady game, and bingo is it!). It always makes me feel a lot better to have my friend over and just veg on the couch and watch a movie. I watch so many movies by myself when I'm not feeling well, somehow it's different to have somebody there. Sometimes we watch really bad movies on purpose, just to be silly and make fun of it. Stuff like that, I'd just be annoyed by if I were alone, but having someone else there makes it fun. Anyway, I hope you're able to find a way to have some fun and cheer up, it sounds like you need it. Feel better soon!
 
Yeah, that is smart, Cat, to talk to him first before you do anything drastic. That way you can see what in the world he was thinking. Maybe there is some logic to it. Even though it seems absurd to all of us. Worst case scenario, he was just being dumb, and you gave him a chance to explain himself.

Sorry everyone seems to be doing poorly. Maybe by the weekend things will be looking up.
 
My boyfriend actually talked to me last night and he was being really sweet, and I think that we are going to get through all this. He texted last night and said, "Baby, I truly love you with all my heart. I want the best for you and I want you to know that no matter what happens what you have to go through I will be there till the end. You mean the world to me, it's just a tough time for both of us right now. I will be the strongest I can if you do the same." I thought that was sweet, and basically reassured me that everything will be okay. :) yayyy!

Now, I'm off to go eat more fatty foods for my day 2! wooo... :( I just feel really full and icky and crampy... and after I eat like a couple bites I'm running to the bathroom, and no one better get in my way! haha :p They could get hurt! Trying my best to bring humor to this situation, because it sucks. But I'm already in day 2, so that's good.
 
Thanks May. I'm getting more upset by the minute because I still haven't gotten a call back regarding this Pepto bull$#%&. I'm going to call my GI's office in a bit and remind them that I'm upset. I am feeling quite a bit better than I was this morning, have managed to eat which really seemed to improve things - in fact, I ate a lot! Of course after eating I got some LRQ pains. I hadn't had any pain the whole time I was on Asacol, so it figures that they'd come right back once I'm off of it. Oh well, that's yet another thing to discuss with the doc, whenever he bothers to call.

Sunshine, I'm glad you resolved things with your boyfriend. So what's on the menu today for the fat diet? I had a sandwich earlier and it came with a little packet of mayo, and I took a glance at it - the nutritional information says that in one little packet of mayo, there's 10 grams of fat! So whatever you eat, maybe just add some mayo and that'll make things easier?
 
I'd start the Asacol again, and when he calls, play stupid, like you couldn't believe that he wanted you on Pepto, so you figured there was some mistake. I can't stand when doctors take their sweet time calling people back. That is utterly inexcusable. You have had this happen a few times, right? You should ask him for a more direct way of getting in touch with him. B/c this going through the nurses and receptionists is crap when it takes this long. My GYN gave me his cell-phone number, and just recently my husband's GP did the same. I'm sure that isn't something they do for just everyone, but still - to me it shows a level of trust that certain patients aren't going to abuse the privilege, and also an understanding that sometimes messages can get lost in the shuffle of daily life. That was exactly why my husband's GP gave him his - b/c my husband needed to know some results of a blood test, and the doc knew that the staff would be busy, and there might be some chance of the message not getting to him. My GYN gave me his b/c he is just top-notch. :)

How many days left, Sunshine? Just one? Or two? In any case, day 2 is almost over. I'm sorry you are suffering. Yeah, there is more fat than most of us care to realize in a lot of stuff we eat. :/ I think I could definitely use an excuse to eat milkshakes multiple times a day. :) Good that you're keeping a sense of humor. I'm sure that makes it easier.
 
Cat, yeah I had a burger and I added mayonnaise, so just a meal of fries plus the cheeseburger with mayonnaise was like 60 grams of fat! so I only have 40 for the rest of the day. I'm drinking a milkshake again to add 10 more grams, and then later I can snack on chips again and get that done for the day!

May, i have 2 more days left after today! Friday is my last fat diet day, thank goodness!!
 
May, I *do* have what I believe is my GI's cell #. That one time that it took him a full week to call me back, he ended up calling me at like 9:00 at night on a number I didn't recognize and I don't answer numbers I don't recognize, especially late at night (long story - hubby used to live in Chicago, and he got his first cell phone back then when we were dating, and he's never changed the number. When I got a phone on hubby's plan, I also had to get a Chicago # even though we don't live there - and apparently a lot of Chicagoans dial wrong numbers late at night!). So anyway, my GI's number ended up on my caller ID and I think it's his cell, because it's not his office #. So I do have a way to contact him more directly, but he didn't officially give me permission to call him on that line. Still, it's a thought! I'm sure it's still in my phone, that wasn't super long ago and I know I didn't delete it. And it would serve him right for the fiasco of the past few days. Hmmmm... I think I'll give it one more day and will call him on that line tomorrow if I haven't heard anything by then.

Sunshine, I'm glad only 2 more days on this awful diet! Can you believe some people eat like this all the time - my dad does! Yuck! He eats horrible crap all the time and then he complains that he feels old and crappy. Well duh! He used to be the kind of person who would go to the gym and work out, then hit the drive-thru on his way home to "reward" himself for all his hard work at the gym. He'd literally get like 6 cheeseburgers and totally negate every calorie he burned at the gym and then some. And, after awhile he just stopped going to the gym altogether but of course still hits the drive-thru regularly. I keep telling him, take care of your body because there's IBD in your genetics! (His grandfather, my great-grandfather, had UC.) Anyway, I'm rambling, but I'm glad you only have to do this a couple more days.
 
I have no idea how I found this forum but I am so glad. I am beyond frustrated with the medical system at this point.

For me this started three months after my son was born. I got violently sick where me and the toilet became best of friends for two days. Thinking it was nothing but a stomach virus I let it go. Only to have diahrea on and off for months until I finally gave up and went to my PCP. She ran the gammit of blood test and FOBT. I had a few blood anamolies and FOBT came back negative. So immediately I had IBS. She put me on metamucil which did nothing for my symptoms. She also added Vitamin D and Calcium symptoms because I wasn't absorbing them properly. So she refers me to a GI who says I have infectious IBS. She prescribes me 3 months of rifraximin and 2 things of activia a day.

I could only get a hold of 10 day supply before my insurance said no way, we won't pay for more. I didn't have diarrhea after taking the drug, but I continued to fight for the drug anyway, which now 4 months later has been officially denied 3 times. Frustrated I decide to make an appointment with the GI doctor. During this time the diarrhea has been MIA but I have become exhausted, I have joint pain, and headaches; then the scariest part is I now pass gas thru another hole :O. Then just 12 days ago it was back and full bore. It wakes me up at night and keeps me up and all the other symptoms have gotten worse, which now makes me glad for making that appointment, but I have still two more weeks to go.

I am ready for more testing because I somehow doubt that I have just IBS, but we shall see.
 
I was put on Rifamaxin and yes, it is a terribly expensive drug. I have been on it twice, and had very few abdominal issues since about January of this year. One acute attack in May, but that didn't last as long as they used to. Other than that, just the stray loose bowel, so I consider it a great success. The first time I took Xifaxan, I had met my deductible, and so insurance reimbursed the entire cost, but the second time, this was not the case, so I complained about the cost to my GI, and he gave me all the samples they had and a discount card for Xifaxan (Rifamaxin). So I only had to buy about 12 or 15 pills and the card took a lot off. I think I still had to pay around $100 but it was worth it to me b/c it worked so well.

If you are passing gas through another hole, then it sounds like you have a fistula. IBS definitely doesn't cause those!! What is a FOBT by the way? Have you had any of the scopes?
 
Cat, I'm so upset for you! I can't imagine how upset you must be, especially if you LIKE taking Asacol and he won't even speak to you about the side effects!

As for the pred, my GI specifically prescribed a trial of Entocort to avoid pred, I presume. He didn't say it, but he did say that he thought Entocort was safe enough to try to see if I respond, (I'm assuming to determine that I do in fact have CD) without the side effects that come with more aggressive drugs. So I'm pretty sure he meant pred.
I think my GI is being very sugar coated about everything. I think he is trying to protect me because of my age and because he knows my history of my mother dying. I can't blame him, he's probably my dad's age and may have a child my age, who knows. I do wish he would be more up front, I'm a big girl, I promise. Though I don't think that excludes me from being able to kick and scream every once in a while.
 
@Mayflower, no scopes yet...just speculation about infectious ibs and nothing further. Hence with all the pain and new symptoms why I made an appointment to go back. Hopefully they will come up with something.
 
SpaceC06, we are both burquenos! Welcome to the forum! Sorry you are having these issues. Who is your GI, I have a great one if you don't like yours or want a second opinion. I would push for some scopes in your next appointment, for sure.
 
@dahlfacepoet, I am currently going to doctor Virkins. I am not sure about her yet unfortunately. I would love to know your GI doc, is there a long wait time to get in? Do you know if they take pres? Well if they come recommended and they aren't covered by pres then I will probably use them for a 2nd opinion depending on how this next round with Virkins goes.

Are there any support groups etc around the area?
 
Space, welcome to the forum. I'm sorry that they diagnosed IBS without doing thorough testing for IBD. I also was DXed with IBS with no tests, not even blood tests. You have never had a colonoscopy, correct?

Sunshine, I hope you are doing worse with the fat diet. :(

As for me, I just got in a huge rift with someone in my sorority over my illness. Like I have said before, we have this event coming up in a week called Goat Night...and to leave out a ton of details, it includes a dance competition. They only started practicing two weeks ago, and at the beginning I tried to participate. Well, This past weekend I decided I wasn't going to do it at all, because I had spent the entire weekend in bed trying to get my pain down/ energy levels up for the week. Well....one of my sisters came up to me after a meeting and said to both me and another sister who is sick, who happens to be the President, "you guys haven't done anything for this dance. You must come tomorrow night to watch out for the gamma phis or press the play button on the computer". She completely blew me away. When I said I had class, she said "we are practicing till ten. you are coming." When I said I am too sick and I just can't do it, she didn't care. She just kept telling me I was coming whether I liked it or not. I lost it. I yelled at her, telling her I left this school on doctors orders a year ago, and I am not doing well now. And she told me people are pushing their limits, I can push mine too. Excuse me? Just being in school is pushing me OVER my limits. Now the entire sorority is on edge and I'm to blame (according to them). Oh, by the way, I'm not going tomorrow. I'm not going to be treated like that and have her expect to get her way. I walked away after I tried to have my say and came in my room and bawled. You know, the loud ugly cry. She really hurt my feelings tonight.....

One of my sisters tried to come in and fix things, and I tried to explain to her that I'm not doing well, and that I know its hard to see because its an invisible illness, but they just have to try and understand. Her reaction was "um, Alisa, you are visibly sick. You are super thin, sickly thin, and you always have bags under your eyes. We know you are sick." That kind of scared me...I didn't know I LOOKED sick.... :(
 

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