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Sunshine, I do not think that is awful at all! I have forced myself into a flare so many times right before tests to try and get answers. What worked best for me was eating my trigger foods....spinach, raw fruits/veggies, and whole grains/high fiber.

Today is weigh in day for me...and I have lost more weight. :( I am now at 112, the lowest I have ever been. I lost 1.3 pounds this week, which is better than weeks prior, but still not good. My husband is very worried...he says I look really sickly because every bone is protruding out in a weird way. I have been eating as much as I can, and all of it has been high calorie foods. I really don't know what to do at this point. Its the connective tissue around my intestines that's inflamed, and I bet its affecting my absorption of nutrients and calories. :( Its affected my absorption of B12 for almost a year now, and it started to affect my potassium absorption a few months ago, so maybe since the pred is being dropped its affecting more. Hopefully my GP will have better ideas on how to combat it on Wednesday.
 
sunshine - you shouldn't feel awful about wanting to get in a flare. when i had an appointment at shands with the oral medical clinic about my mouth i completely stopped the only thing that was helping at the time so i they could see me at my worst. because otherwise they'd just say, oh, it doesn't look bad. why are you here? i couldn't eat for 3 days, but they gave me a great med that has really helped, even when remicade hasn't.

i went to the endo on friday. he (of course) thinks i just have severe PMS. but i haven't had my hormones tested yet, so won't really know much til then. i just know, for me, that hormones are at least a big factor in my case. i can feel great for the first 2 weeks of my cycle, hardly have any fistula drainage at all, then i hit ovulation, and it all gets worse. luckily i have found that chamomile 2 or 3 times a day almost completely stops the mucus in the last half of my cycle. and i read that chamomile can raise your estrogen levels. coincidence?? i think not. course, i think i'll lay off the next week so i can see what my levels are like when i'm not taking anything to curb the symptoms. i don't have much faith in the medical community anymore, so i'm not expecting much. but at least i am doing my own research, and maybe i can get myself to a point where my body can heal itself.

hope everyone is having an okay week.
 
Thanks Allie and Flowergirl. My appointment is in 2 weeks! I hope time goes by fast! and I hope my flare comes within that time... (Never thought I would say I HOPE for a flare lol but desperate times come with desperate measures haha).

Allie, I'm worried about you, that's not good about your weight!! What you said about your intestines is probably what is happening, I wonder what they do to check it out? maybe another endoscopy??? I don't know. :( I'm worried about you.
 
aww sunshine, you have enough to worry about! I have no idea if there is actually a test they can do to check inflammation of connective tissue...it doesn't show up on CT scans or scopes. You can feel it by hand though. I'm hoping at this point they will just treat! Two more days till my appointment!
 
Ahhh Allie, I hope you don't get any worse in 2 days. Hopefully they can just start treating you! :(

Why do we all have to always go through SO MUCH just to get attention with doctors?!!? it just really freaks me out lol... i don't understand! There's this girl at my boyfriend's work that has stomach problems and she said she's been through shands, mayo clinic, and like 10 doctors and no one can figure it out. and my boyfriend said at work the other night she was in so much pain she was crying and when a customer came in she put on a happy face and then when they walked away she was like on the floor crouching down in pain... I'm like.. goshh what's going on!!! :( that makes me worry because that's how people get in EMERGENCY situations... like all of a sudden someone will have an abscess or something that went through their abdominal cavity and it's like a life or death situation. and THEN they find out what's happening.. it shouldn't be like that... doctors should keep going and researching or finding a doctor who can help the patient in order for their health and safety BEFORE it gets bad...
 
@Allie...Yikes. I hope you feel better soon. I am sure it is discouraging trying to get your weight up. Hang in there, something is bound to work :)

@Cat...No test were done. I have a GI appt soon and I am going be demanding because that is what the nurse told me to do...lol.

@Sunshine...good luck over the next couple weeks. I agree with you that it shouldn't be an emergency situation that solves the problem.

@Shan, thanks for sharing about your diagnosis. I learned a ton!
 
Hi everyone! I've been a bit MIA on the forum lately, but I just wanted to pop in quickly. Life is very hectic at the moment. Work is very busy. Also, my hubby is starting his doctoral degree, and I am reading along with him to help him have someone to discuss things with and help keep him organized. Needless to say, it is VERY overwhelming. He's is enrolled in 2 classes at the moment, and there is just so much work. He's done several assignments/papers, and of course, hundreds of pages of reading and it's only week 2! It's going to be a long 4 years.


Luckily, my GI problems have been pretty well behaved lately. However, I have been fighting a bug. I had to leave work early last Friday, as I was feeling fluish, and I was pretty much in bed all weekend.


Talk to you all soon!
 
Hi all, well, I had intended to post over the long weekend, but had bad computer issues at home. I apparently got anywhere between 3 and 7 computer viruses - how, I have NO idea! I try to be safe, don't click on weird emails or go to iffy websites. I do have an anti-virus program but it seems to have let quite a few things slip through the cracks. All of a sudden my computer crashed on Saturday morning and said it couldn't locate my "C" drive (my brother said that if my C drive really were done for that I wouldn't have even been able to boot up my computer, so apparently that was just one of the viruses talking). I was able to get the viruses off and had to re-install Windows so I lost everything (fortunately there is a way to get all your music off your ipod, so when I reinstalled itunes I was able to get all my music back - I also back up all of my photos onto CDs, so photos and music were saved, but everything else is gone). My brother helped me with my computer for a little bit, as he knows a lot more about computers than I do, but then he went out to his car for something and he found that somebody had smashed his car widow! The bad part is, his door was unlocked - it appears nothing was taken either, so somebody apparently just busted out his window (in January in Wisconsin, thanks a lot, jerk) for the heck of it. So yeah, it was an eventful weekend but not in a good way. My guts weren't too happy about the stress of all that. Stupid jerks who smash car windows and create computer viruses!

Allie, I hope they can put you on some good long-term treatment so that you can gain some of your weight back. At my lowest with this illness I had dropped down to about 115 lbs (I'm 5 foot 8 and currently I've been hovering between 135 and 140), so I feel for you! It's no fun when you just keep losing weight but you're trying to gain. The worst is when people compliment how "good" you look and you feel so horrible and sick. Good luck with your appointment tomorrow!

Flowergirl, that's interesting about chamomile affecting estrogen levels! I try to drink 2 mugs of herbal tea every day, usually one is ginger and one is chamomile. (I don't do caffeine and I avoid peppermint because it can worsen GERD, so my tea options are limited.) I might try doing 2 mugs of chamomile daily for a few days before my period and see if that has any effect.

Sunshine, that's really scary about your boyfriend's co-worker, I can't believe she's in such pain and nobody can help her. :( I hope your appointment in a couple weeks goes well and that they're able to do SOMETHING for you, flare or not.

Jill, wow, your husband's schooling sounds very stressful! Does he not have any classmates that he can discuss and study with? It sounds overwhelming and stressful for you to study with him like that. I hope you can be relieved of your study-buddy duties! And I hope you feel better soon.

So my aunt was chatting with me on facebook yesterday evening after I got my computer back up and running again - she's got Crohn's (she's related by marriage, not blood - the only blood relative I know of with IBD was my great-grandfather who has been dead for many years). She's had Crohn's for years, was diagnosed recently but had symptoms forever. She thought she was doing pretty well, but she was just told her Crohn's is severe and active, so she's apparently in a flare although her only symptom right now is blood. No pain nor d, she's actually been feeling really well lately. Her doctor wants her to try one of the biologics but she's not too keen on that idea. I felt kind of cool that I actually knew some stuff about those meds and could chat with her about treatment and symptoms and other stuff. I wouldn't have known any of that if it weren't for the forum! And I swear I learn something new on here every day - so thank you guys! We may be ill but we sure are knowledgeable!
 
@Cat - He's doing most of his degree online. So, no, he doesn't have anyone to study with. And, though I much rather go home an relax, I want to be able to help him. His degree will be furthering both of our futures, so I want to do what I can. And I know he's stressed, so I am trying to lighten the load a bit. He's pursuing his degree in Education, and being a teacher (though not teaching at the moment), it's kind of my thing. He's not too good with the K-12 stuff, as he works in higher ed, so my perspective on things really helps him. To be honest, I like being helpful, but it is stressful. I miss having free time. When I used to be able to relax or hang out on the forum, I now use the time to read. No fun...

It's scary how your Aunt feels well, but has "severe & active" Crohn's. I have read about this before, and I hate to think Crohn's can be running rampant without us even knowing!
 
Jill, with regard to my aunt's Crohn's - she went gluten-free a year or two ago and has been feeling so well since then. She wasn't feeling all that unwell to begin with, but going GF made her feel very well. It is definitely scary that the illness can be so severe and actively inflamed & doing damage without causing symptoms. (It seems like the opposite can also be true - I think that must be the case with a lot of us in the club, a lot of symptoms but few or no signs of active disease.) So for those people who tout certain diets as "curing" them or putting them in remission - definitely take that with a grain of salt. As my aunt has shown, diet can make you feel very well but that doesn't necessarily tell the whole story.

Oh, and I didn't even know that a doctorate could be gotten online! (Well, I'm sure there's shady websites that promise doctorates, but I didn't know there were real doctorates available online too.) This whole online school idea is so new, I'm not *that* old (32) but there was nothing like this when I was in school. My cousin just started online high school, he's a high-functioning autistic and has some issues with getting overwhelmed in regular school. He's thriving at doing his schooling online so I'm glad that option is available for kids like him. Anyway, I'm rambling again, but I hope you and your husband can figure out a way where you and he can be study buddies but still have some free time and not be so stressed. Good luck with it!
 
Hey everyone....Well, when it rains it seems to pour! EEK!! Dan called me home from work on Saturday because Claire was throwing up all over the place. :( She was sick all night, then I woke up with severe D on Sunday. Of course, I assumed it was from all my issues, but then realized I had whatever bug she had. Managed tow ork through it Sunday, but had to call in sick yesterday and today. The whole family is a mess, C's bee throwing up, lots of D, Dan and I both have D and horrible nausea, and now my stupid sinus infections are back. ARGH!

I got another blood test result back, a weakly possitive P-ANCA? Not really too sure about it, but it seems as though it may indicate some sort of Autoimmune disease. So, i'm kind of happy, between that and the increased Rheumatology panel, maybe they'll take me seriously? MRE isn't back yet, but I have an appt. with my GP next week, hopefully we can discuss them all then, and get some sort of a game plan.

Sunshine, hoping if no flare comes between now and your appt. you will at least not be in too much pain!

Allie, How was the appt? Or do I have my dates wrong, is it tomorrow?

Cat, sucks about the stress! It's amazing what stress can do to our intestines, of all things!!

Jill, wow...sounds like tons of work!! Hard enough to do your own work, let alone someone else's also!! I'm glad you're able to get something out of it as well though. :)

Space, Keep us posted! I hope they look further into things for you, and figure it out.
 
@Cat - I am not sure if there are many doctoral programs online. My hubby works fro higher education, so he knew of the program. It's with a pretty well regarded school in New England. And it is pretty inexpensive for doctoral programs; under $500 per credit.

Online classes are great if you are responible and driven. I took a few while pursuing my bachelor's degree, and I loved it. However, there is a lot of independent work. They say you should devote at least 8 hours a week to an online course being that you aren't spending any time in an actual class. But I think hubby is easily spending 20 hours on each of these classes!

@tamesis - Did they explain what possitive P-ANCA means? I have no clue what that is.


I am not having the best day today. To be honest, I have had 2-3 days in a row of no symptoms at all. It was amazing. However, my stomach is hurting a bit today. Also, I have weird symptoms that are unexplainable starting around the same time my GI issues began, but docs say they aren't related. My tongue/mouth feels swollen and my right leg does, too. When the right leg pain set in a few months ago, I thought I might have had a clot. Luckily, I don't. Anyways, coincidence these symptoms start up the same day my ab pain returns? I think not.
 
I'm sorry you aren't feeling well Jill and tamesis!

My appointment today didn't go as well as I had hoped. They looked at my rheumy's recomendations, put in a refferral for both the GI and Rheumy at the military hospital 3.5 hours away, and refilled my meds. I am now on plaquenil, but they said it is probably the wrong dose because they had no idea on how much to put me on. Then for the meds I have been taking for months...they got it ALL WRONG. I didn't notice until a few minutes ago when I went to take them. They prescribed XANAX instead of XANAFLEX...so they replaced my muscle relaxer with an anti-anxiety med. ~.~ On top of that they only gave me 1/3 of the amount of tramadol that I need in a month. Needless to say, I'm fuming. I'm out of my muscle relaxers, and have been for about a week, and I was really looking forward to having that help me sleep tonight...I really hope they can fix it when I call them first thing in the morning.
 
@tamesis stomach bugs are the worst! Especially when you keep passing it amongst each other. I hope you all start to feel better soon.

@Jill that is weird that you get the symptoms at the same time. I would think they would be connected, but heck I am not medical professional :p

@Allie that is not good! How could they mess it up that bad?! So are you going to have to travel 3.5 hours to get treatment?
 
So I didn't make it to my GI appointment on Monday due to circumstances outside of my control (aka weather trapping me in a different state). They rescheduled for 1 March! *smacks forehead*

I just can't believe how little they actually care for the patient, it just amazes me. At any rate I called the nurse and told her to at least give me something for the pain (other than the last med which messed me up)...I just don't want to go on vacation and suffer the whole time! We will see what she is able to come up with.
 
hey cat - i totally understand about the acid reflux and exercising now! i went bouncy housing with my son the other night and had this horrible pressure in my chest. not a good feeling. then today i went for a power walk and had the same thing. i thought my heart was just worn out from not exercising. then i started belching like a sailor and started to feel better.
that is not a nice feeling. guess i'm going to have to start taking zantac before i go for a walk! :eek2:
 
Space, that sucks that they can't get you in until March! Do they have a waiting list for sooner appointments? If not, try calling back every so often to see if they've had any cancellations. In my personal experience, sometimes they are able to fit you in sooner if you cry on the phone (I was so frustrated at one point that I broke down into tears, and the nurse was sympathetic and got me in the following week instead of in 2 months). I hope everything works out and that you're still able to enjoy your vacation!

Allie, that sounds like a disappointing appointment all right! I hope you can get the meds straightened out. I hope those referrals come through quickly too. At least you're on Plaquenil now and I hope the dose you're at does something for you. I remember Carrie saying something about how she's on a maintenance dose of Plaquenil, so I'm guessing that means there must be some sort of standardization with the dosages. Hopefully they gave you the Lupus/MCTD dose and not the maintenance dose!

Speaking of Carrie, if you read this - hope you're doing okay! I saw on your blog a little while back that you were really ill but on the mend, so I hope that's still the case and that you're feeling better.

Jill, I remember you talking about leg pain a while back, in fact I think you've talked about it several times in the past - how frustrating that it's back again! Personally, whenever I get a new symptom I just naturally assume it's somehow related to my gut illness. I wouldn't be surprised if your leg pains are related to your gut illness too, although I haven't a clue what the leg pains could be. It's good that it's not a clot - but then, what is it?? I've heard of stuff like erythema nodosum which is common with Crohn's, but I believe that causes red bumps or a rash on the legs. I'm assuming you don't have a rash or bumps, and I can't think of anything else that I've heard of that causes leg pain like that.

Tamesis, you poor thing! Not fair to get a stomach bug on top of already having tummy issues, that just seems so wrong. :( I hope you and your family get over this bug quickly! And, also not fair that you have to work on weekends. Good luck with your GP appointment next week - I hope those MRE results show SOMETHING useful!

I've got an appointment next week too, I see my GI next week Thursday. I'm going to ask him about my reflux issues, and tell him I'm doing well on Asacol but am not 100% sure that I'm actually in remission (probably will ask for my CRP to be tested again). I've still been having some issues with frequency - my poo is usually nice and firm thanks to Asacol and I rarely have d anymore, but sometimes I still "go" 5, 6, 8, even 10 times per day. All that going and going means I've got hemorrhoids and I'm generally irritated and sore back there - I might ask for some sort of healing suppositories or enemas and see if that helps any. My tummy itself usually feels fine as long as I stick with safe foods (which I don't always do) but even with safe foods, I find I still go with more frequency than I'd like. So yeah, just going to talk about that kind of stuff with the GI. I doubt that he'll run any other tests besides bloodwork - I've gotten the impression from him that I won't get another scope or other "big" tests until I flare again. Don't want that, so the focus of the appointment will be me continuing to try to feel better and better. Wish me luck!
 
Flower, just saw your post - oh yeah, I can definitely relate to the belching and that special chest pain. Sometimes it gets pretty bad and I feel like I can't breathe, which is obviously a bad thing when you're exercising! I take Zantac before I exercise too, and I take Prilosec at morning & night. Oh and I take Tums too! Ha ha.
 
@Allie – I am so sorry to hear your appointment went so badly. How could they be so irresponsible?! If I were writing prescriptions, I think I’d be a bit more careful. I don’t even like having a spelling error in an email at work – and no one’s life depends upon it!

@Space – Oh, I hope you’ll be able to enjoy your vacation. Hopefully, a little rest & relaxation is going to do you good. By the way, what island(s) are you going to? Hubby & I are headed to Maui in May for our 5th year anniversary. We honeymooned in Oahu, Maui, & Kauai, but Maui was our favorite, so we decided to just go there this time around. I can’t wait to return. And like you, I am crossing my fingers I will be well to enjoy it all!

@Cat – No, I don’t have any rashes on my leg. My GP was confident it wasn’t a clot, which after all this time, he’s obviously right. He thought it could be a baker’s cyst, but I don’t feel any lump behind my knee. And it’s hard to describe how it feels. It feels tight around my knee and through my calf.
Solid BM’s 5+ times a time! I wouldn’t doubt you’d have hemorrhoids. Poor thing. Obviously, Asacol is helping, but I wish you had less BM’s a day.
 
Shands appointment in 12 days!!!!!! hope they can help!

I'm going to my GP tomorrow just to mention a tender spot on my abdomen and see what she thinks it is.

Been really busy with my online class, sorry I haven't posted in a while!!
I feel so left out of everyones conversations! but i do hope that you are all doing well and that things are too rough out there for you guys!! <3 *HUGS
 
So this morning I called my GP's office to get the whole med thing fixed. a few hours later my GP herself called me back, saying they don't carry tizadine, and I am basically SOL. She hung up before I could ask her for something else to help me sleep. :( I guess I will discuss it with my new rheumy, whenever that appt may be.... ~.~ I am never seeing that doctor again.
 
@Flower I have horrible bleching almost every night. I was told it was due to SIBO and I have been on probiotics for months without much success of getting it under control. As if everything else isn't bad enough then you have to have it come out the other end too :p

@Allie, that is so frustrating! I hope that you find a better doctor soon so that they can give you some relief.

@Jill, we are heading to Ohau, Kauai, and Big Island. We will be there for 18 days total.

@Sunshine, we are cheering for you and your trip to Shands. It is great to be so close to a good hospital.

Myself, the GI nurse called. They want me to try a drug called Lotronex. I have to go in to sign a waiver and talk to the doc about the side effects. I am bit concerned about it, but I am not sure if it is unneccessarily. Anyone else dealt with this drug?
 
hi! I'm reading. I just got over some kind of respiratory cold, and finally did my 24h urine collection for cortisol testing. I'm constantly having reflux type issues, pukey nausea issues, etc.. none of that has changed even though my gastritis and ulcer are healed. I took a bunch of tramadol and flexeril last night, so for the first time in ages my legs aren't killing me everytime I take a step. I'll probably make it through the day without a nap as well.

Allie - I take 200mg twice a day of plaquenil, ask them for that dosage and see how it goes?
 
Thanks Carrie, that's the dose they put me on. She got out a book that said to prescribe 300mg, but they only had 200mg in stock. They expect the rheumy to change it.
 
Hi, Space. My doc considered putting me on lotronex before he knew the Xifaxan had worked so well for me. I believe that drug is rxed for women with severe diarrhea prominent ibs. All I know is that the nurse had this huge binder out with info on that drug so apparently there's an extensive list of possible side effects. Probably to get first hand experiences from ppl you'd need to talk to ppl on an ibs forum. Whatever you choose, I hope it works for you.

Sounds like everyone is having ups and downs... Hope everyone feels better soon. I'm not on here as much anymore but I do read from time to time.
 
Jill, I hope you can get your leg issues figured out! It took me awhile to get my hip pain figured out. Initially it was diagnosed as arthritis and I was sent to physical therapy to strengthen it - after 7 months of that, the arthritis diagnosis was thrown out and it was re-diagnosed as being bursitis. Unfortunately the physical therapy for bursitis is different (stretching as opposed to strengthening the joint), so I had to start over. I didn't go back to PT as I decided to try stretching it myself, and that's been going better than I expected. Last winter I would limp at times because the hip pain was quite bad. This year, I am usually in no hip pain at all (when I am in pain, it's mild and goes away with stretching and Tylenol). The cold weather seemed to aggravate it last year so I must be doing something right with the stretches! Anyway, long story short, maybe you could try gently stretching your leg daily and see if that helps any? Bursitis apparently doesn't show up on xrays so it was kind of a diagnosis of exclusion for me - they decided they didn't see arthritis after all so therefore it must be bursitis.

And yeah, 5+ solid bowel movements a day is my normal lately. Yesterday I think I went 6 times and the day before that it was even more. Today just one so far. I keep a tube of Tucks hemorrhoid cream with me at all times. I have been using it more than Calmoseptine lately. Calmo is great, cooling and soothing, but it doesn't seem to reduce anal inflammation. Hemmies or no, when I'm going that much my anus gets angry and swollen after going all day, and Tucks is the only thing that I've found that helps. (It seems to be stronger than Prep H - that stuff does nothing for me.) I might look into a sitz bath too though as I've heard those are good for this type of thing.

Carrie, sorry to hear you're still having the vomiting and nausea issues. :( Those are my two least favorite symptoms. Not that any symptoms are fun but vomiting in particular is just the worst. I hope your doctors can figure out why you've been vomiting and finally put an end to it!

I've got to keep this short (well, short for rambly old me). Hope everybody else is doing okay! Have a good weekend all!
 
thanks cat. the first in the morning vomiting has to be the worst. I have to think very carefully about what I eat. the thing that bothers me about the morning vomiting is that it's not always dinner from the night before, it could be part of a snack or lunch. maybe my stomach only partially empties? meh.
 
Hi Sunshine,
Hope you will soon be diagnosed and receive optimal treatment to make you better.
Re: the T shirts--"-Deceiving" would be the correct spelling---"i" before "e" Except
after "c". Hope you won't mind me mentioning this.
Hugs and Best wishes
Trysha
 
Trysha! Thank you so much, I hope Shands can do the trick for me! :)
And thank you! I"ll fix that :) I don't mind at all! THANK YOU! <3 *hugs
hope you are doing okay!
 
Hello Sunshine,
Compared with so many of you I have a lot to be thankful for, an exceptional family doc, Gi specialist and a diagnosis since 2009.
Currently have a few problems and the GI wants to do a colonoscopy urgently, set for end of January---took me by surprise and it is not something I am looking forward to with undiluted pleasure! However just get it done and over with. My crohns is in left colon,and there is concern in case it has progressed from there. Wish there was a permanent cure!
Thank you for thinking of me
Hugs and best wishes
Trysha
 
Hi I just found this place last night I am 26 from Australia, I've had bad symptoms for at least 5 years now and finally my new gp thinks it's chrones and has put me on pyralin en tablets which are helping a fair bit. See a new gi in March so hoping for a diagnosis then but won't hold my breath as I've had 2 gi's and 2 sets of colonoscopy and endoscopys so far but no diagnosis besides ibs so far.
 
AND now I have a UTI. Fricking dang rotten miserable bloody life of mine. :( I'm having a woe is me day. Got my ANA result back, positive speckled pattern, often associated with Lupus, Connective tissue disease....That, the high Rheumatic factor, the positive P-Anca....They freaking dang well better do something now! Soooo done...Can ya tell? Sorry for the lack of positiveness and not being supportive today...I'll try tomorrow. :(
 
Phear, welcome to the club. Don't get discouraged, it can take a long time for crohns to get bad enough to show up on scopes. One of my GP's over the years explained that the ulcers can be too mild to scar, and when you do a colonoscopy if you aren't in a flare it might now show anything. It sounds like your doctors have good faith in you, hold on to them and be patient, thats all you can do!

Tamesis, it sounds like you have what I have! I have GI issues with my Lupus. That kind of ANA would not show up with crohns. My inflammation is the connective tissue around my small intestine, and it causes the same pain and D that crohn's causes. It also causes malnutrition because the connective tissue helps absorb the nutrients. I hope your doctors take that ANA seriously and get you some proper treatment.

How is everyone's weekend going? Mine isn't going so well. Stuart left last week for training and I haven't handled it well. I feel like I had just gotten him back, and the drama has started. The stress of it hasn't helped my spoons. I hate being alone with nothing to do. ~.~ I did gain some weight back though, thank goodness, 1.8 pounds since last week. Stuart will be gone until the beginning of February (they are talking about staying longer actually....) so I'm really hoping it goes by fast, because I really hate this. :(
 
Hey, I made it through half the weekend and my computer still works! (Knock on wood!) Ha ha. ;)

Phear, welcome to the forum and the club. I think you might be the first Australian to join the Undiagnosed Club. (There's lots of Aussies on the forum though so you're definitely not alone.) I'm not familiar with the tablets you've been put on - that's not uncommon though because it seems that a particular med will have a different name in different countries (a med called Remicade in the US is called Infliximab in the UK, for example). At any rate, I hope the meds continue to work for you and that you can get some relief and hopefully some answers too.

Tamesis, I've had many UTIs and they're pretty miserable so I definitely feel for you! If they tell you to drink cranberry juice, get cranberry supplement capsules instead. Cranberry juice is usually full of sugar which isn't going to help the infection, and capsules are just easier to do than drinking a lot of tart juice. I'm glad you've finally gotten somewhere as far as test results, and I agree with Allie, it sure sounds to me like you could have the same illness that she's got! I can't remember, do you see a rheumy or just a GI & GP? I would think that a rheumy referral is in order if you don't already have one. Good luck, I hope this finally points you towards a diagnosis!

Allie, I'm sorry that your husband is away for so long, that sounds really difficult. :( Hopefully your pets and crocheting will keep you at least a little busy, and I saw on facebook that you got a part in a play? So that's good, I hope it makes the time go by more quickly. I'd send you a few of my spoons if I could! Hang in there.

How's everybody else doing? I'm having a good, productive weekend. I don't want to leave the house because the weather is cold and crappy (freezing rain today, yuck). So I only left to walk the dog yesterday and I plan on doing the same today. I did some sewing, some crocheting, colored my hair (got the greys out!), cooked, and did some other projects yesterday (transferred some old home movies from VHS to DVD). Today it's laundry, more crocheting, and possibly a bit more sewing. Probably cleaning too. And video games, ha ha. I've been playing the Sims 3 a lot lately. Had to reinstall it on my computer after it crashed, so I had to start all over with a new Sim. It's an oddly addicting game.

Hope everyone else is well and having a productive weekend too!
 
Cat, I am doing the same thing with my weekend! How do you manage to walk your dog everyday in this weather? I am so grateful my dog seems to understand, because I seem to only have the strength to take her every few days. The other day I asked her if she wanted to walk when I got home from play practice and as I was putting her reflective gear on (it was dark outside) she gave me the sweetest look and licked my face. It was literally like she was saying to me "thank you so much I love you!". Its amazing how animals can love you more than you can imagine, and understand so much.

Thanks for the kind words. I should be used to this separation by now, but it never gets any easier. The hard part about it right now is that he is deploying later this year, which is why he is having the training. The army is the most dramatic organization I have ever dealt with, and they have put us through so much over the past few years. When I first got ill they told me to drop out of school and meet Stuart in Germany, so I did. Once I got the flight they sent him to Afghanistan saying "if she is well enough to fly she isn't sick enough for you to stay in Germany". We are in the middle of getting out of the Army, and we have no idea when they will send him home from Afghanistan to get ready to move. So he will be gone anywhere from 3 months to 6 months. Before that he has almost 2 months of training (split into two parts). I absolutely hate it. They even mentioned the wives moving to Italy by ourselves and having the soldiers meet us there once the deployment is over. Absolutely ridiculous. Nothing is ever stable, and the stress of it drives me insane.

Oh, and remember my crazy MIL? She emailed my husband and said that she wants to pay for him to come home for block leave (they get two weeks off before the deployment to spend time with their families). Yeah, JUST HIM. They are insane. Block leave is for the wives and children, not for crazy helicopter parents. My husband emailed her back saying he wasn't going anywhere without me, that block leave was for me, not them. Thank god he agrees with me!

OK, I'm going to stop ranting now. :p
 
Allie, I can somewhat relate - my hubby and I dated long-distance for nearly 4 years before we got married. He was going to art school in Chicago and I was going to college here in WI, so it was a minimum 3 hour drive to see each other on weekends (a much longer drive if traffic was bad). Sometimes we had to work weekends too so sometimes it'd be 2 or 3 weeks before we got to see each other. It was tough, but it definitely made our relationship strong! I'm glad your hubby stood up to his crazy mother. He sounds like a good guy.

As for walking my dog, well, my hubby walks her on weekdays (I work Mon-Fri, he works Sat & Sun plus other random hours during the week but he always has time during the week to walk her). So I only have to walk her 2 days a week, and if I'm feeling really unwell she seems to understand that there will be no walkies that day. Today the weather is crappy and I haven't walked her yet. We walked yesterday, it was freezing cold but no wind and sunny skies, so not awful conditions - today it's cloudy, windy, and freezing rain which just makes me want to stay in! So I gave her a rawhide bone which is keeping her entertained for now. We're under a "winter weather advisory" so I'm guessing the weather won't improve, and today will probably be a no-walkies day.

Do you have a treadmill? I've been trying to find a cheap or free one on craigslist. I've seen online videos of people who just train their dog to walk on a treadmill. I'm thinking that Lily is smart enough to learn that, and then on bad weather or bad guts days I could just walk her on the treadmill inside instead. Here's a cute video of a corgi on a treadmill, so I know it can be done!
http://www.youtube.com/watch?v=RhLNVuphfBE&feature=fvst
If you're not always able to walk the dog, a treadmill might not be a bad idea - but if they're making you possibly move to Italy, would they move the treadmill with your other stuff?
 
Yeah, we have been on again off again long distance since six months into the relationship. It never gets any easier, which is why we are getting out. Its just too much with the illness.

HA, dog on a treadmill...that is so funny! Kallie LOVES to walk, so this might actually be a good idea. :p We probably won't move to Italy because we are leaving the army in the middle of the deployment, but yeah, when you move they move everything for you on the Army's dime. When we move back to the states everything will be boxed up by a set of movers (With me watching like a hawk because we had stuff stolen last move) and taken by a moving company by boat. They will even ship 1 car back. Once the movers come we move to a hotel the rest of the time we are here, then go to the states and spend some time in a hotel there. Its quite a process!
 
I HATE my computer. :p I just typed a long reply, got ready to send, and lost it. And now Claire's up. :( I'll try again later, sorry!!! ARGH, that makes me so mad!@!!!!
 
Alright....Maybe it will work this time! LOL.

I've slowly been coming to terms with the most recent test results. It's interesting....Even though no disease is pleasant, or easy to cope with, I feel like Lupus is just so much worse. I know that's not the case....Each disease comes with it's own issues, complications, etc., but it's almost as though I was so sure that it was Crohns, that I was ok with and had accepted it? I know so much about it.....Was prepared for that? But now....It could be something new, and scary, that I know nothing about, and no nobody with....So it's just a whole different kind of scary, if that makes sense?

I'm slowly compiling a list of all sorts of different weird body things i've had in the past couple years. Little things i've never mentioned to my GI, but kind of make sense now....It's funny, I remember telling my GP back last year around this time I was having excruciating pain in my finger joints, and her saying "A great GI will figure this out, it could be arthritic manifestations of Crohns"...but I never really even mentioned it to my GI! Anyways....I'm expecting a Rheumy consult, so will have a huge list for him/her! I'm just hoping this brings more answers, and in a sense, feeling like some sort of progress has been made? I see my GP on Tuesday, so we'll see what she has to say about the new results!

We had a great weekend, UTI and sinuses are starting to clear up, and my girlfriend took Claire last night so we could have a date night. :) It was great to have some one on one time without having to worry about Claire, and actually have s.e.x.!!!! For the first time in months. :p

Allie....I can't believe the galls of your MIL!!! WOW!!!! I'm glad your hubby stood up to her, what an awful sounding woman! Has she always been this way, or just recently? I mean, yes, it must be hard for her for him to be in Germany, but it's not YOUR choice, and you shouldn't have to be the one to suffer! I have the utmost respect to service wives and all they put up with for their country. I hope you give yourself credit for all you do by being supportive of him!!

Cat, that video was priceless!! What kind of dog do you have? I really, really want a dog, so bad....we're waiting until we can fence the yard in the summer, but sometimes i'm just so tired of waiting! :( There's nothing like the love of a pet. :) summer will be good too because Claire will be a little older, hopefully a little easier to deal with (HAHAH, as if! :p), so it's just better timing. Glad the computer was good to you this weekend...I hope that keeps up!!

Phear, welcome! Good for you for stinking too it. We all understand how goshdarn frustrating it is when you just KNOW there is something wrong with your body, but nobody can seem to figure out what. :( Very, very frustrating and a long, tiring journey. Keep with it though, and hopefully you will get some answers soon!

Sunshine, how are you doing? Hope your weekend brought a horrible flair! (I feel awful just typing it, I'm sorry!!!!) I can't see the shirts....but i'd love to!!

I'm sure there's something I missed, and I'm sorry! I have a long work week....6 days straight....Hoping things are nice and quiet, and i'll try to check in after my appt. Tuesday. :)
 
Thanks for the nice welcome messages. It is great to have people to talk to that understand lol. I just hope that my new gi finds something. Would it be a good idea that when I have my next cameras when ever it will be to stop meds and eat my trigger foods for a few days before to have a flare and it may show something?
 
Tamesis, I felt the same way when we went from "its most likely crohns" to "you've tested positive for Lupus". I freaked out because you are right, Lupus can do a lot more damage to you over all. It can attack your kidneys, you heart, etc. I'm actually now in high risk of a heart attack and other heart problems because MCTD can cause inflammation of the connective tissue around your heart...I would much rather deal with just my guts going haywire. You're right, all disease have their challenges, but Lupus can be much more challenging, which makes it have a higher risk of shortening your life and causing more issues down the road. The good news is they have really advanced their understanding of Lupus in the last 20 years. Thats the one fact that calmed me down. 20 years ago if you were diagnosed with Lupus doctors would highly suggest you get an abortion if you get pregnant, because they believed it would kill the mother because of the disease. They also believed you wouldn't live that long. I'm really glad I don't live in those times!

Yeah, my MIL has always been that way. Its a constant struggle between my husband and I, because he just lets it happen, saying she was worse when he was a teenager. The issue is she still treats him like a teenager even though he is in his mid-twenties and married. She treats me like a teenager as well, like she just pulled in another daughter or something. I try and take it one situation at a time, because she tries to take over everything. Thanks for the kind words, its always good to hear that. :)

Phear, what meds are you on? If you are on crohn's meds, it might hide any evidence that might get you a diagnosis. Many of us here have tried eating trigger foods before a test, myself included, and it doesn't always help. I actually blacked out from the pain of eating a spinach salad at one point, and my small bowel follow through the next day showed nothing!
 
Yeah im on pyralin luckily I just found a new gp that suggested trying it even without a diagnosis otherwise ide still be in the hell I was before them and after telling him that they are helping he is convinced it's some form of an ibd! I plan on stopping them before my next cameras tho. And im also on protein digestive aid tablets from the health food store as I had a fixative stool test which picked up that im not processing protein. I guess we all just have to take it day by day with these sorts of things.
 
Tamesis, we have the same kind of dog that's in the video (different color though, mine is a "tri color" so she's mostly black with some white and a little orange) - a Pembroke Welsh corgi. Lily Pooch is 3 years old and is the best dog ever! You sound like we were before we got our dog - we really wanted a dog, but we wanted to wait and make sure we were ready for a dog and that we could find the right dog for us. When we bought our house, we started casually looking for a dog (our house is like 1 block from a huge dog park). We really like corgis, but hubby didn't want a purebred, so we were actually hoping to find a corgi mix (like what Allie has!). Then Lily kind of fell into our laps and we couldn't say no. A co-worker of mine couldn't keep her and neither could any of her friends or family, so she put out the word at work, and when I heard through the grapevine that there was a purebred corgi available for free I couldn't say no! We met Lily to make sure she was a good fit for us, and she's just the sweetest and smartest dog, and she became ours just over a year ago. I hope you're able to find a great dog too. She's so silly and smart, she makes me smile even when I feel crappy. The only real problem is that corgis shed like crazy, but otherwise they're fantastic dogs.

Allie, that's good that the army will pack and move your stuff for you. Let me know if you try the treadmill thing, and I'll keep you posted if I'm able to find a treadmill too. That's crazy about how little they knew about Lupus 20 years ago! Yikes! I'm glad they've learned a lot since then and I hope they continue to learn lots about the illness so that you can get really good care and treatment and look forward to a long and relatively healthy life. And I hope your m-i-l comes around. My in-laws always seemed to think I was kind of a goofy kid too and they treated me like a kid. In fact I was always convinced that they didn't like me (case in point, when we got engaged, we told my parents first and they were ecstatic - when we told his parents, they were watching TV, and they said we should be quiet for now and tell them more at the commercial - seriously). When I got ill there was of course that episode where my f-i-l got drunk and told me I'm not ill and I'm faking and my marriage will fail, etc. My m-i-l stood by me through that incident and she was actually really caring and nice. My f-i-l eventually came around and now they both treat me like I'm an adult. It took quite awhile (hubby and I will celebrate our 10 year wedding anniversary in September) but it did happen. Give your m-i-l some time, maybe she'll finally grow up and realize that you're a grown up too. Maybe not, but stranger things have happened.

Phear, you said it - I think we all take it day by day, every day! That's just how it goes with an illness like this, especially when you're undiagnosed and the illness is out of control. Now that my illness is somewhat controlled, I do find it much easier to plan for the future - but I also am well aware that a flare-up could happen at any time. It's sometimes hard to be optimistic. I think taking it day by day is all any of us can do. Hang in there!

I'm doing okay, I feel good after resting and staying in all weekend. (I only left once to walk the dog.) I did some crocheting, worked on some sewing projects, and just did little stuff around the house like laundry. I watched some movies and played some computer games and just generally hung around the house and relaxed. It was nice! Unfortunately though yesterday I developed a new hemorrhoid and it's a real pain in the butt (pun intended). Yuck, I hate hemmies! The sad part is, I only "went" twice yesterday so I'm not sure how I got a new hemmie from only having 2 BMs. Hmph! Not fair!

On that subject, I've been applying Tucks hemmie cream every time I go to the bathroom, whether I poo or not (I feel like just the act of wiping hurts my hemmie so I put the cream on every time). But, the bottle of Tucks says to apply a max of 5 times per day. I've already applied it more than that today. Does anyone know, will I do any damage if I apply it like 10 times per day? I know that stuff like Bengay shouldn't be overly applied as it builds up in your system (there was a story in the news a few years back about a girl who was a track runner and slathered Bengay on her legs after every run, she used tons of the stuff and one day she collapsed and died essentially of an overdose of the stuff). I'm guessing it'd be really hard if not impossible to OD on Tucks but just want to make sure! Anybody know?
 
Afternoon everyone! Cat, Lily sounds precious! I really can't wait....But, have to, and will, and it will just make that little puppy so much more precious! Sucks about Hemmie. Jerk. I'm not sure about the Tucks....Might not hurt to check with your dr. next time you see him/her....I don't think you'll die of an overdose...It may lose effectiveness over time though? What are the ingredients?

My inlaws are overall pretty good, but interesting at times. When I first got sick my FIL told me to just dose up on meds and go back to work, because I mentioned they made the pain manageable. I asked him if he would like a doped up nurse, and he kind of second thought that. They just don't understand why I would ever need to not work, they're go to work unless the world falls in around you kind of people. And honestly, those kind of people actually piss me off, because they're often the reason other people get sick!!! It must be hard as a MIL to see another woman being your baby boy's sole "Caretaker"......but you'd think that would be all the more reason to be extra nice, so that we take good care of them!! ;)

I got a call from the GI this morning, they're running a bunch more bloodwork, including an 8am cortisol. I, being the nurse I am, googled what an off cortisol could mean, and I don't like it!! Feeling scared now, honestly....Again, it's like I was ready for Crohns, but now it could be all these bigger, scarier things, like a pituitary tumor, and I don't know I can handle that. But...I have no choice! So, going for that tomorrow morning, and we'll see what it says! And the washer guy came today, stupid busted motherboard, so looks like another week without a washing machine for me. :( BOO!!
 
Tamesis, fortunately I see my GI on Thursday so I'll ask about Tucks then and see what he recommends. Maybe there's a prescription hemmie cream that's more effective? Tucks works pretty well, I'm just slightly leary of not following the instructions of 5x max applications per day. The active ingredients are: mineral oil 46.6%, Pramoxine HCI 1%, and Zinc oxide 12.5%. I'm not sure what Pramoxine HCI is but the other things don't sound toxic. I will do some googling after I post this message and investigate further.

As for the cortisol testing, try not to freak out too much - maybe they're testing you for Addison's disease? I was tested for that myself. It can mimic Crohn's symptoms - nausea, diarrhea, abdo pains, etc. And, it responds well to pred. Right after I first tried pred, and it worked wonderfully for me, my GI had a brainstorm that maybe this is Addison's (that would have explained why I respond to pred AND why nothing had shown up on any of my scopes or scans). So my GI ordered some tests. I had a cortisol draw which was borderline low, so then my GI ordered a full ACTH test (they inject you with this stuff that makes cortisol rise in normal people, but in people with Addison's it doesn't rise or just barely rises - then they draw your blood every hour for a few hours to see where your cortisol levels are at). My result was on the low end of normal, and both my GI and GP agreed that although it was a bit low that they don't think I have Addison's (I don't have the other Addison's symptoms such as skin darkening either so it makes sense that I don't have Addison's, but it was good that they checked to be sure). Anyway, try not to be worried, your doctor is most likely just trying to either confirm or rule out stuff like that. I don't think ANA rises in Addison's, but not 100% sure. They didn't test my ANA until I was (mis-)diagnosed with arthritis, and then my GP tested my ANA to see if it was rheumatoid arthritis. That was well after I had been through the Addison's testing. So I'm assuming that means that ANA doesn't rise with Addison's.

My other thought is, if your cortisol goes the other way then it could be the opposite, Cushing's (cortisol is too low or nonexistent with Addison's and it's too high with Cushing's). So again, a cortisol draw would likely just mean that they're trying to rule that type of stuff out. I can't recall if Cushing's includes gastro symptoms or not - I believe Addison's can involve weight loss and Cushing's can involve weight gain, but other than that I'm not sure what all Cushing's involves. Anyway, I'm rambling on again. My long roundabout point is that you should try not to worry too much about cortisol testing - it's probably just a precaution and it'll likely rule some stuff out. That's all it ended up doing for me.

And that sucks about your washing machine! My Roomba died recently and I don't know if I can fix him this time. As I mentioned, my corgi sheds a LOT. My roomba has broken down several times before. When I opened him up to see if I could find the problem, I sure did - dog hair everywhere! Including jamming up the gears inside his gearbox. Gross! But now he's got some sort of a microchip problem and there are very complicated instructions online on how to replace it, and I just don't know if I'm up to it. I have this strange fascination with robots but I just can't wrap my head around all the wiring and chips and boards. I look at a circuit board and I just cannot understand how that can make a robot work! So, I don't know what to do. I don't even know where I'd find the chip that I need, but new Roombas are expensive. But I really like having a Roomba! And I hate vaccuuming! But if I buy the chip I need on, say, ebay - how do I know I'm buying a good chip and not just another dud? What if I put the chip in and it doesn't work - is it my fault for not knowing what I'm doing, or is it a dud? Argh! So confusing! Anyway, I hope you get your washing machine fixed soon (and that you don't have to put in the motherboard yourself!).
 
Hi Phear!

@Allie & Cat You guys are too funny with the dogs. I wish I could say that my two dogs would be that disciplined to stay on a treadmill. On the one hand I have a husky that loves to pull my toddler around on a sled, so I guess it works out in the end :p

@Tamesis I think it is a good thing that they are testing you for other things. I say the more test the merrier (assumming they are not that invasive). Of course I am engineer so I say nothing points to a valid conclusion except for truth data which unfortunately is test. You may be one step closer to the answer and we will support you through your diagnosis.

I was supposed to have a GI appointment about the Lotronex. I have no idea how I can be prescribed that since I haven't been fully tested for all the other possibilities, especially when the consequence is so severe! None the less through a communication error I missed the appointment, now its back on for the 27 Feb. I have had enough of this doctor, so much so that I am considering a second opinion even if I have to pay for it. Nothing like taking matters into my own hands. :p
 
Tamesis, I know how scared you are right now, I had lots of Cortisol tests looking for very scary things, some were not normal, some were not, and it was eventually decided the normal outweighed the abnormal, which was a huge relief.

But I am seeing in about 5 weeks an Endocrinologist and i'm pretty sure that will come up again- and be another dead end like everything else lol.
 
hey everyone sorry haven't wrote much, just been stressed with this waiting game. because even though i'm not in "flare" im still not feeling well... :( but i'm seeing a doctor at Shands in a week! so I'm anxious/excited to meet her and see what she has to say.

I hope you are all doing okay, but by what i'm reading it doesn't look so well. *hugs for everyone!* <3
 
Cat.. I've got some haemeroid cream from the doc not sure of the name but it's a stearoid based one so it works pretty quick.
 
Phear, yeah, you will want to get off the meds way before your scope. It will most likely interfere. I would talk to your doctor about it so you guys are on the same track!

Cat and Tamesis, my MIL did the same thing...actually she is still doing it lol. Her sister has IBS, and shows a lot of the same symptoms as me from the outside, like can't eat salads. My MIL talks to her sister all the time about me and what I should do for my health. Then she comes to me and tells me I should get off the pain meds, get on the IBS meds, and just get over it basically. We were staying with my husband's parents when I got the MCTD diagnosis, and it took a lot of courage to tell her, and she didn't even look at me when I told her (she had an ipad on her lap). Our relationship is so weird and complicated. They do things for me that my parents would never do, so I treat them like my parents, but at the same time they ignore me a lot too. My husband and I had a really rough patch last year because of my illness, and they told me it was all my fault when I tried to go to them for help. They told me I wasn't brought up the same way, so I was way too dramatic, and Stuart couldn't handle it. Things have been weird ever since. Over the holidays I had a really bad pain episode, and got in a fight with my husband in front of my FIL. I was crying, couldn't see straight, etc. It was plain awful. I couldn't look my FIL in the eyes...I was so embarrassed. I am a very private person except with my best friend and husband, and I didn't want my in-laws to see me that sick, but I was staying with them. They see my privateness as stand-offness. Maybe one day it will get better.

Cat, Kallie is a shedder too! I would love to get a roomba, because if I want to keep these floors dog hair free I have to clean the floors every day. Right before my in-laws came to visit last year I bought this stuff to make our hardwood floors shinier, and it said to clean the floors first. I did, but I STILL ended up basically gluing Kallie's hair to the floor in places. We are going to have to strip the floor to get it out. >.<

I hate Hemmies! I've had one, the same one, since I was 17. I've never tried anything for it though..no cream or anything. Does it really make a difference?

Lately I have bled heavily every bowel movement. Its bright red, which means near the anus, right? But the thing is it is ALOT of blood. One day I know I lost at least a cup of blood. It covers the stool, stains the entire toilet bowl red, soaking the TP, etc. When I try and tell my doctors they don't care. Maybe I should take a picture!

I'm 25% through this stupid training excercise....it is driving me crazy! I hate being here a lone. Stuart gets really mean when he leaves me...he puts up a wall so he wont get hurt, and it hurts me. It takes a few days of begging to get him to take the wall down. Its one of the reasons we are getting out at the end of this year. I told Kallie she was sleeping with me last night and she ran straight to the bedroom and lept onto the bed..so cute! She helped a lot since she kept me distracted. I just hate I'm getting dog hair in my bedroom!
 
Good news is I finally got my MRA appointment for next Thursday. Bad news is I have a cold and feel rotten.

Spoke to the complaints service last Thursday, they told me complaint response was on Cheif Executives desk for his approval and should be with me yesterday (deadline) or today. Surprise surprise no letter has appeared yet!
 
Phear, thanks for the info - I am definitely going to ask my GI about a better hemorrhoid cream. Tucks works okay but I'm guessing a prescription/steroid cream would be better.

Allie, I've tried various hemmie creams, wipes, cures, etc. The first hemmie I had stuck around for months. Prep H did nothing for it. Calmoseptine made it not hurt, but didn't shrink it or make it go away. The vitamin E treatment (take a gel capsule of vitamin E, poke one end with a pin, and squeeze the gel directly onto the hemmie) worked so-so. It shrank my hemmie about halfway but didn't make it go away completely, plus it's really messy (wear a pad if you try it! Vitamin E gel leaked through my undies and onto my khaki pants and made a big ugly oily stain right on the butt and the stain didn't come out after several washings so my pants were ruined and it was embarassing). Tucks cream works fairly well, I had a hemmie a few weeks ago that I put Tucks on every time I went to the bathroom, and that hemmie went away in about a week. I'm doing the same thing with this hemmie and hoping for the same results. If you've got a hemmie that has stuck around for years though, I don't know if anything will make it go away - you can try Tucks and see if it helps any, but I think I've read somewhere that really stubborn hemmies sometimes require surgery and don't often go away on their own.

Oh, and if it were me I'd definitely take a picture of the amount of blood you're passing. It can't hurt (if it does gross out your doc, I'd take that as a sign to get a new doc ASAP as any doctor should be well past the point of blood grossing them out) and it could help. I remember you had a big fissure awhile back that bled a lot - does this seem to be a fissure too? Internal hemmies can often bleed a lot too - I haven't had internal ones myself, only external. Apparently the external ones hurt but don't bleed much, the internal ones don't hurt much but can bleed a lot.

And your m-i-l doing "research" on IBS and then trying to give you advice based on that - sounds like my mother! When I first became ill, she mentioned it to one of her cousins. Well, apparently that cousin has celiac disease in their branch of the family tree. My mom freaked out and decided that I must have celiac - and therefore, she must have given it to me and so she must have it too. Nevermind the fact that breads & pastas are some of my safest foods, or the fact that I've had both the blood test and the upper endoscopy w/ biopsies and it's all come back negative for celiac. So my mom told her sister and my cousins and they all freaked out too for no good reason and decided to all go gluten-free. NONE of them have had any testing, not even the blood test for celiac. But they're all quite sure they've got it. And for awhile all of them, especially my mother, pressured me quite a lot to go GF myself. I was reasonable and explained why I don't have celiac (not to mention that I'd be pretty much only eating Ensure and bananas at every meal if I went GF because of all the other foods that do trigger me). It finally took an angry email from me to my mother stating in no uncertain terms that she is NOT to mention gluten or celiac around me again because I don't have celiac and all the lecturing about celiac is driving me $%&*ing nuts! She finally got the hint and I haven't heard any more about gluten or celiac since. You might just have to put your foot down with your m-i-l too and tell her you DON'T have IBS and don't want to hear anything further on the subject!

Star, glad to hear you finally get to have a test! After all your testing requests being denied, it sounds like that streak has finally been broken! I hope it can find something that leads you to a diagnosis (hopefully nothing scary though - this one is looking at your heart/arteries if I'm remembering right?). And with the way you were treated last time, I'm not surprised either that the complaints dept is still not following through with their promises. Who do you complain to when the complaints dept doesn't do their job though?? :( That's got to be so frustrating.

Sunshine, good luck with your appointment! I hope they're MUCH better than the Mayo Clinic and can figure out what's going on - whether you're in a flare or not. You're obviously not well even if you're not actively in a flare, so hopefully they recognize that and can do something about it. Good luck!

Space, that sounds so cute about the husky pulling a toddler on a sled! :) My dog is short, but she's considered a "large" dog (she wears a size large doggy life preserver, and when I got her some size large doggy pajamas they were a bit snug on her). She's currently 43 lbs (down from 50 lbs as she's lost a bit of flab lately) which is kind of big for a corgi - they're supposed to weigh about 35 lbs max. My hubby and I sometimes joke that she could probably pull our youngest nephew on a little sled, but we never actually tried. How cute that your dog actually does that! :)

I hope everyone else is doing okay. As for me, I'm feeling blah today. Didn't sleep well last night, tummy has been crampy and upset all day, I've been having the "skinny poos" today which can't be a good sign, and of course the hemmie is still being a pain in the butt. :p Oh, and I can't lie down at work anymore when I'm feeling ill, at least not for the time being. There used to be a little "sick room" at work - basically it was just a cot set up in a dark empty office (I brought in my own pillow and blanket too). Well, now it turns out that someone was promoted and is moving into that office, so there's nowhere to put the sick room anymore. :( I was promised that something would be worked out and there will be a sick room set up "somewhere", but there's no empty offices anymore and I don't know what will be done. That's not good. I don't use the sick room often nowadays, but if my tummy feels crappy (like today!) or if I get a migraine or something, I can't go lie down. Just have to work through it or go home sick. :( It sucks.
 
Oh, and Allie, I meant to add - have you tried one of those Furminator brushes for the shedding? It gets the undercoat which greatly cuts down on the amount of shedding. Those brushes are really expensive in stores, like $60 minimum, but I found one on Amazon awhile back and it was only about $15. It's definitely worth that amount. My cat even loves it! I'm lucky that both my pets like being brushed, ha ha.
 
Star, thats good about the appointment! I wouldn't get yourself too worked up about the complaints office...you have been trying and trying, and they just don't seem to listen! I wouldn't waste too many spoons on it.

Cat, thanks for the advice! I've pretty much figured it is here to stay. It swells and shrinks depending on my flares, but it has never gone away. And you are probably right about the fissure, but the pain doesn't seem the same. I feel like I have a normal or D like poo and there is ton of blood in the toilet...weird!

I'm sorry about the sick room situation! I have a few jobs I could apply for here in Germany (none related to my degree at all, but simple or generic enough that I would be qualified...hotel clerk, secretary, etc) but I can't get myself to do it because of my health. Today I took a bath and when I stood up I saw stars. I'm scared I will just fail at a job because of how bad this has gotten! I hope they are able to set something up for you somewhere so that you have that option! And I hope the cramping and other yucky stuff goes away too. :)
 
Yeah, I love the furminators! I worked for PetSmart for three years actually, and quit because of this illness. I swore by furminators before I even started taking care of Kallie! They are amazing little tools. We her shedding is at its worse we use it at least once a week to keep the shedding at bay. :)
 
Oh, I love PetSmart! Lily won't let hubby or I trim her nails anymore, so we take her to the little grooming salon at PetSmart and she gets her nails done while we shop. We buy her a nice treat and she gets it when she's done. I never thought I'd be the type of person who takes my dog to a salon to get her nails done, ha ha! It's worth it though because the stress of trying to hold her still and clip her nails is just not worth it (she won't sit still and freaks out). I'm happy to pay a trained professional to do that for me. :)

Allie, do you have low blood pressure? I get dizzy sometimes too when getting out of a hot bath, and it seems my BP is at least partly to blame. I have low sodium which in turn causes low BP. When my sodium levels are good, I don't get nearly as dizzy. This is a bit gross, but try a teaspoon of soy sauce (very high in sodium) next time and see if it helps any. Soy sauce was kind of a miracle drug for me for awhile when I was really ill and my BP was dropping too low. Even now that I'm (supposedly) in remission, my BP is usually 90-something over 60-something, so it's still much lower than what is considered normal, but I don't get dizzy spells as often anymore.
 
That's actually pretty normal about the dog thing! My dog hates it too, but I still do it anyway, lol. I have no one to take her to here, its just me and the clippers! We have a vet on post but they don't offer that service.

I actually don't have low blood pressure. My father has high blood pressure, and I test normal. I'm only dizzy like this during flares. Its when I've done too much or I'm really weak...it literally looks like glitter is falling from the sky. Its really weird! It gives the term "seeing stars" a whole new meaning. When I'm not in a flare, it doesn't happen. So I just try and take it easy if it happens. Doctors have always said it is weakness from the illness.
 
Oh wow, Allie, that sounds awful. :( I didn't know you could get the dizzies like that and have a normal BP! I get the dizzies much worse in a flare too, but that seems to be because my body is losing sodium through all the d. Wow, I hope this Plauqenel stuff works for you and can get rid of some of these scary symptoms! When do you see the doctor next?
 
Thanks ladies. My next tests are standard ones so not holding out much hope, I have had so many come back normal, and the next stage tests are being denied me.

There is a place or two you can complain about the complaints service, I meant to last time but there were just too many other things going on and it didn't get done. They have been more through this time I will say which were my grounds for complaint last time (they got ex-GI to reply to my letter, which is fine, but apparently that was the final response, didn't have the deceny to write themselves and tell me that was the end of the matter, only found out when I phoned to ask why they did not meet their deadline).

The MRA is just an MRI (which I have had 2 before) with an injection, easy peasy. The heart test involves exposing my chest (I thought I could wear a bra, apparently not) which I am more bothered about but it has to be done. I have made sure I will get a Female Dr in any case.
 
Aww Sunshine,
Sorry to hear you are under the weather and hope you will soon feel better.
Hugs and best wishes
Trysha
 
Hey all. Sunshine, i'm so sorry you're unwell. :( I hope that it is either a flare that gets bad soon so that you can get some answers, or something that passes quickly. You've got WAY too much going on to have to worry about some other sort of additional illness. :(

Allie, those dizzy spells worry me! Do you have someone close to you that you talk to daily, that will make things happen if you don't get in touch for a while? And especially with the blood loss with stooling....I would really feel better if you would get in to see your GP, or someone....Just to make sure that you're not loosing so much blood that it's what is making you see stars. Just be careful, and keep a phone nearby at all times in case you were to pass out and not be able to get to one. I'm sorry...Not trying to be scary, just worried with S being out of town. :(

Star, I'm behind on the whole complaints thing, but I hope whatever is going on gets settled quickly! It's frustrating.....Doc's can be such dicks, makes you want to do what Allie's dad did and recite their oath to them!! They need to get better at looking at all the pieces of a puzzle as a whole, instead of looking at each different symptoms individually.

Cat, that really sucks about the sick room!! I would LOVE something like that!

Work sucked bologna today, i'm having some issues with a co-worker that are really stressing me out. Plus I had a bad lab experience this morning, so it was really just a bad day all around. The doc is running a multitude of weird tests....ACTH?, Cortisol, CBC, Lytes, Gastrin, immunogobulins, a 72hr fecal fat test (EWW! I have to collect ALL my poop for 72 hours, while on a high fat diet! They gave me a PAINT CAN to collect in. LOL.), stool for Sodium and potassium, and a couple other things I forget. I got my CBC back, and yet again I have high RBC's...Most everything is normal though. I've got to find a way to stop thinking about things, i'm getting myself all freaked out and convinced I have pituitary cancer and am going to die and leave my toddler motherless. :(
 
Sorry to hear everyone is feeling pike crap. I am too I've just received a hermi too :( and what sucks even more is its 37-38c here and I've got a cold lol so it's very hard to get relief from the heat when u have a fever damnit oh well that's my vent for the day.
 
Thinking happy thoughts for everyone!

Tomorrow I go see my gp...I am going to figure out how to second opinion. No way am I signing up to a drug that is so expensive and has such severe side effects without a second opinion, especially since I feel like I have been undertested! You guys talk about test all the time. I haven't even had a blood test since May!

I just wish the medical system wasn't so messed up and I am sure the rest of you have struggles with it too!
 
Sunshine, I'm sorry you are feeling so bad! Hang in there!

Tamesis, I have people I can call! I can even call my husband if I really needed to (he is still in Germany, and he has his cell on him). The seeing stars thing has always been a part of this. The worst episode was in a gas station. I was trying to pay for something and right when I swiped my card I passed out. I had told my husband seconds earlier that I really wasn't feeling well. It was snowing outside, and I was happy to get out in it because I had a fever! >.< If it gets that bad I would call someone for sure.

Tamesis, all those tests they are having you do, most are for Addison's disease. Have they spoken to you about it? Addisons can cause GI symptoms, but I don't know whether or not it throws a positive ANA. As for the fat test, Sunshine had to go through that test twice. Fat isn't her safe food, so it really sucked! Maybe she can give you some suggestions. Have they spoken to you about what they think about the positive ANA? That is HUGE evidence that something is wrong. Its the reason I have a diagnosis and treatment today.

Phear, sorry about the hemmie! I have had a fever today too. Under blankets I'm hot, out of blankets I'm cold, and chills all the time. ~.~ Is fevers one of your symptoms? My lupus causes my fevers, which are usually low grade. Tylenol really helps, and boosts pain meds too!

Cat, I completely forgot to mention this yesterday, but Dr. Oz had a special on Celiac disease that you reminded me of yesterday. It was insane, and made me so mad. He had really good advice, but he was giving this advice to people that weren't even tested for Celiac disease. One woman was tired all the time, one was having joint pain, and the other was having migraines. And he told them they probably had celiac and needed to try a gluten-free diet. What a croc! Those women could have SO MANY different diseases. Going gluten-free is not easy, and they shouldn't try and do that unless they have to! Ugh. >.<

I've had an alright day, about the same as yesterday. Like I said I've had a fever, and my pain is pretty high. Just took max dose of pain meds to relax tonight and try and not worry about it. I have to be careful with how many I take...I'm used to taking 90 a month, 3 a day, which was perfect, but I was only given thirty by the GP that didn't listen very well. She gave me two refills after that, but not 90 in one Rx. So I'm trying to take the least amount I can, which is causing me to be in pain more than I would like. I am going to clearly ask my rheumy to do an RX for 90 a month for at least three months like my specialists have done in the past.

Hope everyone is doing well! You guys keep me company while my hubby is away, thank you so much. :)
 
Yeah, Dr. Oz strikes me as kind of dramatic. I find their newspaper column reasonably informative, but I think his show borders on ridiculous. I guess it IS a talk show when you get down to it...It's funny to me how many people go around spouting his advice like it is the gospel truth of medicine.

Sorry everyone is out of sorts.

Tamesis, I hope your tests go well. That fat test sounds horrible. LOL at the paint can collection container.
 
Hi everyone! Hope you're doing well (or as well as can be expected).
I finally got the results back for my 24hr urine cortisol test. I'm having a hard time understanding the results, but I'm pretty sure my 24hr cortisol is pretty low. My most recent blood test connected with this test have all been hidden from my view online which is annoying. I should have printed them out.
 
Thanks Allie...Yeah, that's kind of what i'm scared of! I see my GP tomorrow, and hopefully we can talk it all over....I haven't seen anyone since I got the positive ANA< they just called and sent me all these requisitions for all the bloodwork. Bah! I wish I didn't look into them, because it worries me more I think than if I just blindly did the tests.

Phear, Ick!! I hate the heat...I live in the pacific NorthWest, so thankfully, we don't ever really have overwhelming heat or cold....Just right! Hope you feel better soon.

Carrie, Sometimes I think online test viewing is my worst enemy! LOL. That sucks that you can't see them....Hopefully the low cortisol gives them something to work with.
 
They should show back up in a day or two, but if they don't I'll call and ask them to be re-released. I expect my endo to call me in the next couple days though now that he has all the results. .. he better call.
 
Hi all! Well, very oddly, I'm feeling quite well today. I slept great last night. Hemmorhoid is still there but has definitely shrunk since yesterday. Tummy feels well, no more cramps. My frequency issue was bad yesterday (I probably poo'ed 10 times yesterday and it was kind of loose stools). Today, I only went once and it was a nice firm solid poo but didn't hurt my hemmie. I went to the gym and kicked some butt and my reflux was quiet as a mouse (I belched once and that was it - no repeated belching, no nausea, no feeling of acid or stomach contents starting to come up). Very unusual, especially my reflux being so calm during exercise, and it's very nice to feel this well! I'm always a bit suspicious of really good days. Like, I know this won't last long, am I going to feel terrible tomorrow to make up for this? But I'm trying to enjoy it as much as I can.

Carrie, low cortisol could be Addison's and that can certainly cause IBD-like symptoms. I don't know if it'd account for your waking up to heave/vomit issues though, but at least you've found something on a test result so hopefully this will lead you to some answers. Have you only had the urine cortisol test? That's one I haven't had. I had a blood draw to check my cortisol and then the ACTH test to look more closely for Addison's. Anyway, I hope you can figure some things out and get some relief! Especially from the vomiting!

Allie and May, it's funny, I've only ever seen one episode of Dr. Oz (I was in the tire shop waiting for my car's tire to be repaired and it was on the TV in the waiting room there so I didn't exactly watch it by choice). Oddly enough, the episode I saw was all about celiac and gluten too! He wasn't outright saying people should go GF if they have any symptoms that *could* be celiac, he was mostly just saying stuff like most people who have celiac don't know it, and here are some of the symptoms, and if you have any of these symptoms then you should get checked by a doctor. Sounds like he's gotten more reckless since that one episode I saw! Allie, you're so right, going GF is really hard. My cousin swears that she gets stabbing pains in her lower abdomen whenever she eats gluten - but in spite of these pains, she cheats all the time on her GF diet (she ate stuffing on thanksgiving, and whenever she goes on vacation, which is like 5 x per year, she eats gluten every day of every vacation). So even with pain it's apparently very difficult to stick to being GF! I know I couldn't do it. I mean, if I had been diagnosed as celiac then I would have to figure out a way, but since I know I don't have celiac there's just no way I would go GF. (I'm eating a sandwich as I write this, BTW! Can't even give up gluten for 5 minutes, ha ha.)

Sunshine, I'm due for my "monthly gift" in a day or two as well. That reminds me, I am going to try drinking more chamomile tea and see if it helps! Hang in there. Drink tea, take hot baths, use a heating pad, do what you can to make yourself more comfortable.

Tamesis, a paint can?? Yikes! I'm glad I haven't done that test yet. I already know I don't digest fat well especially when I flare so I don't know if there's much that test could tell me that I don't already know. Do you ever get like this weird orange-colored oil floating on top of the toilet water when you poo? I get that sometimes and it's apparently just undigested fat. The fat turns to liquid from the heat of your body (I don't know why it turns orange though).

Phear, it's summer in Australia right now, right? It's winter here and I wish it were summer! It must be miserable though if you have a fever. Do you often get fevers? My understanding is that some Crohnies get them and some don't. I never get fevers. Even in a bad flare, I'll feel feverish - I'll have horrible chills, bad night sweats, achey to the bone - but when I check my temp, it's always either normal or a little below normal. That's just my normal I guess. Anyway, make sure your doctor knows about the fevers if it's a recurring thing. Fevers can definitely be a symptom of Crohn's or colitis, but they are not part of IBS.

I hope everyone else is doing well today. Hugs to those who aren't feeling well!
 
Space, I just recently got access to my lab results online too - my GP signed me up for the online thing the last time I had an appointment, I think it's a fairly new thing to put test results online. The online test results are how I found out that I had my ANA tested, and that it was normal. Sometimes my doctors will send me for multiple blood draws and I forget to ask what each of them are (such was the case with the ANA). So it's great that I can see online what all I've had done and what the results were. I hope your doctors join the digital age soon too and get lab results online!

Another high tech thing that's brand new here, at the local hospital, when you check-in you just swipe your palm over a reader and it knows who you are based on your palm print. No need to talk to a receptionist, just swipe your hand and it knows who you are. Kinda cool, kinda freaky!
 
Allie, I hope you are okay, that's awful about the dizzy spells! :(

I'm always worried about everyone on here, it's not fair for any of us to be going through this stuff but remember, at least it will only make us stronger..

Thank you everyone!
I'm still feeling pretty bad from my "monthly gift" but i have my heating pad on my tummy, drinking tea, and TRYING to do some school work, but it's not really working out too well because i can't concentrate when I'm not feeling well...
I have had D yesterday after I ate and again today. I don't think this is a flare I think it's just my time of the month messing with things, but who knows.
I'm anxious and ready for my appointment on Monday! ready to know what a new set of ears is thinking.
hopefully we can get to the bottom of this sooner than later, but i'll keep just hanging in there.
 
I know this sounds gross but I need to tell someone who understands!
My D that I just had today was all watery with lots of mucus and I'm thinking Fat floating in the water of the toilet (orange-ish stuff)
normally this is how my "normal" was, but i'm kinda thinking it COULD be the start of a flare... since i haven't had this since before the steroids i was on. but i really have NO idea!! But anyway I'm just going to not worry about just see what happens, and my appointment is monday so maybe all this is happening for a reason. Just gotta make it to monday, but i'll keep you guys posted if i get worse.
thanks everyone for always understanding.
 
good luck, Sunshine!

Cat, my blood cortisol was technically in range - if my cortisol follows the proper cycle which I doubt it does. My sleep cycle is too fractured and chaotic. My 24 urine cortisol is the one I think is low. I'm usually better at interpreting the results, but these are kind of confusing. My ACTH was high I remember, but I don't remember how high. It wasn't the challenge test, just a normal blood test. The 24hr urine also tested aldosterone. my level was 3, the normal range is 3-25. The last one was metanephrines and those were all solidly in the reference ranges. This is the cortisol result:

UR, Creatinine mg/dL 80
UR, Creatinine mg/day 1345 Reference range: 700 to 1600
Ur Cortisol Free ug/L 7.17
Ur Cortisol Free ug/d 12.1 Reference range: <=45.0
Ur Cortisol ug/g crt 8.96
(NOTE)
Reference Interval: Cortisol ug/g crt
Female 18 years and older: Less than 24 ug/g crt

Ratios to creatinine may be useful for evaluation when the
urine collection is random, other than 24 hours, or the
urine volume is less than 400 mL/24 hours.

Low urinary cortisol concentrations may be consistent with
adrenal insufficiency.
 
Hi everyone! Sorry to hear that so many are having a rough week. I got a call today that my pill cam is scheduled for Friday. I had a pill cam a few months ago but it did not make it through the small intestines during the 8 hours of recording. I hope to get better results this time. I have been having a lot more pain lately. Not bad pain but its always there, mostly lower left abd. No diarrhea for a few weeks. When I do have a formed stool, it is really thin and flat. I'm still running a low grade fever most days. I'm just really tired and achey feeling. Can't sleep.
 
Balancing act being undiagnosed

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Join Date: Jan 2012
Posts: 2
0 Thanks in 0 Posts Balancing act being undiagnosed

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So ive been ill for about three years and no confirmed diagnosis. Ive had three colonoscopies ,various xrays scans and two many blood tests , you know the drill. I started with a sharp pain probably every couple of day s with diahorea and then turned into full time right side pain, back pain and pencil shaped pooh, or glue ,blood ,general mess and alot of fevers. Pain is roughly between my navel,appendix and under my right rib cage.
Shortly after I eat I get ill and it continues like a vicious circle. The only thing the doctor says is that during test the right side had a lot of spasm and the left side of the lower bowel was very red. Lots of biopsies no result.
Sometimes when i eat it feels like the food aint goin down as if from the stomach down is closed ? I get sores form my ass to my mouth and when its bad my eyes are sore.

Ive been on Asacol 800mg three a day for six months. It has made a difference and stools are more solid but the pain is pretty intense at times( problably cause the stoolis more solid)

Ive increased water intake and now I am actively sorting out which food is noticably making me feel worse.

So Fizzy drinks, sweet stuff, fryed food,steak or red meat and of course spicey foods. this isnt hard to figure out ,when your raw inside.

I do feel that taking an active role in this condition is helping in that in keeps you positive and that can only be good. However I have almost lost my job over this illness and have had to stop my musical career as i cant bring a loo onto the stage can I.

Started taking wheatgrass capsuels to see if they will ease the symptoms.
Everyday I have several very bad times and the pain and discomfort are pretty unbearable. I sleep 4 hours maximum before pain wakes me up.
So where do I go from here as the future is not so inviting ,being undiagnosed means no treatment .

I think I have an Inflamatory bowel problem and that it is progressing despite the Asacol and diet changes. I remain active and try to figure it out to get through the day at work. How long this will last i dont know So thats my story
 
I hope everyone starts to feel better soon. Yeah I just wish it was like 25c at the moment so it's more comfortable. Oh well just gotta get over it. Yes I do get alot of colds and flu's! And sinus infections and always everyday have a slightly funny feeling in my throat, like the reeling u get before u get a cold...

Do u guys mean that your whole stool is a yellow / orange colour as mine is virtually every time I have D!
 
cb323, Sorry your first pill cam didn't go well, but I do hope that this friday your pill cam makes it through your entire abdomen and gets you the answers you need to get treatment! Good thoughts are coming your way and I'll be thinking of you on Friday! Good luck!! :)

PVail, we all totally understand what you feel being undiagnosed and not having a real solid diagnosis. I hope all of us here can help you feel okay and know that you are not alone.
 
I just had a random thought lol do any of u have this too or it may be nothing related... When I sit on the loo my right leg goes numb and then pins and needles to the point I have to lay down till it goes away it's so excruciating.
 
space, I go to Cleveland Clinic, they're pretty hardcore about being connected online. All of their main clinic buildings use it, some of the ones merging in from other hospital systems can take a while to get on board. I still get some prescriptions on paper but most are transmitted electronically, and I can request refills online.

phear, I had to have back surgery a few years ago because I had a disc that had ruptured and was putting pressure on my sciatic nerves that was a lot like that. On the other hand, sometimes when I feel really icky, and I'm there one of my arms will go a little numb. its weird.
 
you're welcome, but I have to tell you that you're probably damaging the nerves. If you start to have issues with incontinence or legs not cooperating you will really want to see someone. a lot of the nerve damage won't heal itself, the rest tends to take years.
 
Hi everyone, I just got back from my GI appointment. It went pretty well I think. He's keeping me on Asacol and I'm happy about that. I told him about the frequency issues and the hemmorhoids, and he's asked me to track for 10 days exactly how many BMs I have each day and if any of them wake me in the night or anything like that (I'm sure they won't, I only get awoken by the urge to poo when I'm in a bad flare). So I'll call him with that data after 10 days and we'll figure out what to do about the frequency from there. And in the meantime while I'm tracking my poos, he prescribed some sort of suppository to help with the hemmies.

I also told my GI about the reflux issues, so he's switching me from prilosec to nexium. Apparently they're essentially the same drug, but Nexium is a higher dose and it's an extended release capsule so it should work all day - he explained that prilosec will have peaks and dips in effectiveness because it's not extended-release. I'm going to continue taking the zantac as well so we'll see how this all goes! Hopefully I can exercise without as many reflux issues and I can stop taking so many Tums too.

Phear, I believe orange-ish stools can indicate inflammation. I usually get orangey colored stools too when I'm in a flare. But what we were talking about in regards to undigested fat is an orange-colored oil that is separate from your poo, it floats on top of the toilet water just like oil. Your stool might be a normal consistency or d, it might be a normal color or orange, but the orange oil is separate from the stool. And that oil is undigested fat (it turns from a solid into a liquid from your body heat, which is why it looks like oil).

Hi PVail, welcome to the forum. I'm on Asacol too. It's a very mild drug, it's usually used for maintenance of remission. It sounds like you might need a stronger med as Asacol might be too mild to keep your symptoms under control. What's next for you? Are you going to have any more tests? Have you seen the same doctor this whole time, or have you gotten a second opinion?

Cb323, did they tell you why the pill cam didn't make it through your small intestine last time? Some people have issues with their stomach emptying very slowly, I think it's called gastroparesis? I'm don't have it myself and am not too sure of the details, but it's something you might want to look into. Best of luck with this pill cam! Let us know how it goes! Hoping you get some answers from this one!

Carrie, I'm not sure how to read those test results, it's all greek to me! Hopefully your doctor can shed more light on that. I would imagine that if your cortisol levels are out of whack that they'll further investigate you for things like Cushings or Addison's? Fortunately the Addison's tests are just blood tests and I would imagine the Cushing's tests are too so there shouldn't be any icky prep or anything like that involved. Good luck! Let us know when you do find out more about your cortisol!

Sunshine, I will say that hope it is a flare so you can get some tests (but I really hope it isn't a flare because I wouldn't wish that on anyone!). Good luck on Monday! I hope the new doc is wonderful and can FINALLY give you some real answers! In the meantime, I hope you don't feel too awful and can get through the next few days with a minimum of pain and symptoms.

How's everybody else today? I had a great day yesterday but am back to feeling kind of blah today. My hemmie hurts and I've already poo'ed 4 times today (I haven't picked up my prescriptions yet so I'm still just doing Tucks, I will get the suppositories whenever I can get to the pharmacy). I want my GI to know how many BMs I'm having on a not-great day, so I'm thinking I might be a little more risky with my diet over the next 10 days while I'm tracking my poos. I also have a pizza craving so I'm thinking I'll have that for lunch! Wish me luck, it might be a rough 10 days, ha ha. :p Oh, and Zofran seems to slow things down a bit and can constipate me sometimes, so I'm not going to take any Zofran for 10 days if I can avoid it because I don't want to skew my data towards less poos. So I'll be eating risky foods and not quelling any nausea... I am living dangerously! Eek!
 
Update: I just picked up my prescriptions. Holy cow, Nexium is expensive! There seems to not be a generic version either? It was $58 and that was after my insurance had paid $177 (so total cost without insurance would be $235!). Also, the pharmacist said that some people respond well to it and some don't. She specifically said that some people respond well to Prilosec but not Nexium and vice versa. Well, I respond fairly well to Prilosec - does that mean Nexium may not work for me? I hope I didn't just throw away $58! I'm willing to try it for awhile, but when I call my GI after 10 days to give him the poo data I'll also tell him about the cost (he mentioned there's other reflux meds I can try that might be cheaper but he wanted to start with Nexium because it's so similar to Prilosec). Generic prilosec is $10 per month so I'll go back to that if I have to - I can't afford this, with the Zantac I'm now paying about $75 per month just for my reflux meds. I pay $75 per month for Asacol so it now costs as much to treat my reflux as it does my probable IBD?? That's just wrong. I need my reflux controlled but I need to not go broke buying prescriptions!

I also got the suppositories, they're hydrocortisone suppositories so I believe that means they're steroid-based? Hopefully that'll help with the butt issues I've been having. The good news is, those were cheap. :) And my doc wrote me 12 refills so hopefully they'll work well.
 
I'm sooo confused haha. I don't know if i'm in a flare or not. I don't think I am... but I kinda wish I was so i could show something and get tests done and get this all finished with. but i guess things will happen when it's the right time just gotta hang in there...
so frustrated.
 
Sunshine, you poor thing. That would suck if you're feeling awful but aren't in a flare and can't have any tests! :( And of course it would suck to be flaring too. Either way, I'm sorry you're feeling so unwell. Only a few more days until your appointment, just try to take it easy until then. Sit in a hot bath, light some candles, listen to soothing or happy music, or just do some deep breathing - whatever you can to make yourself feel a little better. Cuddle those pets too! Sending you a big hug. Feel better soon!

I just found out there's a prescription savings card for Nexium - good news if I do stay on the stuff, the card says I'll be paying $18 per refill instead of $58! Wish I had found this card earlier today, but oh well, I'm glad I have it for the future at least. If anybody else is on Nexium, here's the link to the savings card - it says all you have to do is print it and show it to your pharmacist:
http://www.purplepill.com/taking-nexium/purple-plus-savings-card.aspx
 
Cat, I hope the new meds are helpful and glad you were able to find a savings card to help out. The doctor has mentioned a slow motility issue. Seems strange when you are having diarrhea and feel like food goes straight through you! The CTs show wall thickening. I don't know if that is why the camera was slow or not. Makes me a little nervous!

Sunshine, I hope your appt. Monday goes well. Hopefully a fresh look will get you some answers.
 
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Wow! I've been reading along about everyone's stories. I can't believe the price of the meds, that's crazy! I'm not there yet with having multiple daily prescriptions...but Cat, i'm glad to hear that you found a prescription savings card. I know it's not the same thing, but I spend quite a bit on alternative remedies each month...trying to stay as 'healthy' as possible; it adds up fast.

SunshineSmile...i'm sorry your having such a poor week. I am hopeful that this new doctor will run tests and won't give up till you get some answers. I can definately empathise with you about the monthly. Mine's due end of the week too...not looking forward to it. I am thankful that my endo's under control at the moment. I don't know how I would deal with both a flare & endometriosis acting up at the same time. I feel for you!

I met my GI this past monday. He was great! I'm getting the 'deluxe treatment plan' lol. I'm scheduled for a colonoscopy & a biopsy. Might as well...both ends...kill two birds with one stone. My blood test for Celiac was negative, but b/c my sister has it, he wants to be 100% sure that's not one of my problems.

I too have just finished the 24 hr pee test...what was it...to check stress hormone levels? More blood tests to check my Ig's etc. In another week I also have a date with the neurologist. I don't recall my dr mentioning that he was referring me, but apparently he did b/c i just got a letter. I'm thinking it's to look into my complaint of pressure behind my left eye. It got really bad the last time I 'purged' (uncontrolable puking & pooping for hrs on end).

Happy to say i'm having a pretty good week...just started a new 'natural' product...moringa olifera tree. Did some research on it & thought it couldn't hurt to try it. Might all be in my head, but i've felt a difference in my energy level. Time will tell. I've got nothing to lose, that's for sure! :duh::duh:

I have a question; is there anything else you guys use for nausea? The med I have gives me the blues, so I really don't like taking it. I have tried ginger gravol in the past and that's helped a bit. Is there another trick that you guys know of that might also work?


Tomorrow is a new day...my wish is that it is a better one for each of you! Take care all! My thoughts are with you.
 
Just thought of something else...I used to be in constant pain; it would travel from my upper abdomen to lower left and lower right side. I took concentrated aloe vera juice for two and a half months. The pain stopped for the most part. Aloe vera juice is supposed to be very good for healing the stomach and innards (among a long list of other stuff like hair, skin, yada, yada). It also lined my gi tract so that when I had D, it didn't get as irritated as it had in the past. And with the constipation, it was a little easier to 'get out'.

I wanted to pass that on b/c I remember reading about Cat's reflux issues. I know and respect that not everyone believes in the natural approach...I don't want to push it, but did want to mention what my experience has been in case anyone else may also benefit from this too. And please don't get me wrong; I believe in a combination of both approaches...Western & Holistic.

Please take care all!
 
hi everyone. hope you are all doing well. or as well as can be expected.
sunshine isnt your appt next week? hopefully they'll find something.
ever - isn't mint supposed to be good for nausea? i find that sipping gatorade or flat ginger ale is good.
cat - i was on this board, and my 3 year old is sitting beside and keeps saying, ohhh kitty cat! i'm thinking what is he talking about, we don't have a cat? and i realize he's looking at your avatar. anyhoo, he likes your kitty.
 
Heart test went fine, should get the results of that and next weeks MRA when I see Rheumy again at the end of the month.

Got my complaint response, what a joke, a very brief letter that fails to address many of the issues I raised, apparently they are satisfied with the care I have been given (different story I bet if it was them or their loved ones :voodoo: ) and to top it off a different story about why the Pill Cam was cancelled (I have both in writing now, their bad hey! :hallo3: ).

I shouldn't be upset but I am. After the last unsatisfactory complaint response I didn't take further action because there were too many other things requiring my attention and energy. But is it going to get me anywhere if I press on this time?

Have emailed MP anyway to register my dismay. He just wrote to the PCT (funding approval people) about the denied PET scan on my behalf.

I am quite low after this very nasty cold, tummy is very delicate and it's always so hard to get my system back on track after "everyday" illnesses, such an uphill battle. :yfrown: Which doesn't help my mood today of course and I am still a bit stuffed up.
 
Hi Everhopeful, welcome to the club and I am sorry you had to join us!

I am glad your GI seems to be on board with you and you have some tests planned.

I also find mint helpful at times, by sucking a candy mint, sometimes that eases the worst of it (although touch wood nausea hasn't been such a problem for me lately).
 
@Cat isn't it insane how much they get for prescribtions. I talked to my insurance about the med my gi wants me to take. My copay is $105 for a 30 day supply :O

The GP can't give me a referral for a second opinion :/ She did put me on Bentyl for pain, so far its not helping. I will be fighting for my right to a second opinion upon my return from vacation.
 
Ever Hopeful, I actually have tried aloe vera in the past, at the suggestion of my aunt who has Crohn's. She swears it works wonders for her, and she also recommended probiotics. I tried both - I didn't notice any difference with the aloe vera, and the probiotics actually seemed to worsen my reflux (upon googling, I found some info that indicates probiotics can worsen reflux in some people so I guess I'm one of those unlucky ones). I do take a fair amount of vitamins & supplements too in addition to the meds I'm on. Supps I currently take are: vit B12, vit D, calcium, cranberry, biotin, ginger, folic acid, bromelain. I also drink an Ensure daily which is full of vitamins and I consider that to be a multi-vitamin of sorts.

Oh, and Ever, you asked for recommendations for natural nausea relief - ginger is the best one I've found. I take ginger capsules every morning, I drink ginger tea, and sometimes I eat a bit of pickled ginger. Peppermint is good too - but if you get acid reflux or have GERD, it's actually best to avoid peppermint. It relaxes the entire gastrointestinal tract, which is good if you've got angry guts, but not so good for reflux because it can relax the valve between the stomach and esophagus which lets more acid & stomach contents come up.

Star, it's always so tough fighting a cold on top of having chronic health issues, I feel for you! It's just so unfair. And with me, a cold always makes my IBD-like symptoms worse too. When I had bronchitis it was extra-miserable because there was mucus dripping down my throat into my stomach, and my tummy did NOT like that and it was causing quite a bit of pain and nausea. Not fun! And of course every time I coughed or sneezed it was quite a painful jolt to the tummy. So I feel for you, I hope you feel better soon! As for the complaint process, it's so frustrating that they just essentially blow you off every time. I don't suppose your MP can help in that regard? Especially the thing about how they gave you two different excuses for the same denial?

Space, the co-pays for meds, even with insurance, can be just insane! My aunt who has Crohn's was just prescribed Entocort. For those who don't know, Entocort can cost over $1000 per month without insurance. She got the call from her pharmacy that, after insurance, her co-pay cost for Entocort would be $950 per month!! Did her insurance only pay $50 towards a thousand dollar medication?? That's just ridiculous. Fortunately she called her doctor and he put her on pred instead which is a really cheap drug and she didn't have to spend the $950. Her doctor apparently wants to put her on a biologic drug as well (probably either Humira or Cimzia). I know the biologics are really pricey - Remicade costs something like $4000 per infusion - so I'm hoping my aunt won't have to pay too much if she does go on a biologic med. It's just crazy how much the name-brand drugs cost. I try to do generics whenever possible because they're much cheaper, but unfortunately I'm on Asacol and Nexium and there isn't a generic version of either. :(

Oh, and Space - they put you on Bentyl for pain?? Bentyl is an anti-spasmodic and might help some with abdominal cramping (I take it sometimes during my period as the menstrual cramps seem to cramp up my guts also), but I don't know if it'll help with actual pain, it's really just for cramps. And it's an IBS med so it probably won't do much if you've got IBD. It doesn't do much for me although I do take it ocassionally.

As for me, I'm doing okay today. I think the steroid suppositories are working, my hemmie doesn't hurt as much today in spite of me having 7 BMs yesterday. It's probably too soon to tell for sure though if it is working. I took my first Nexium this morning and hope it works too - I plan on going to the gym in a couple hours, so that'll be the first test! I am thinking I might also really tempt fate and have Mexican food for dinner (eek!). The only Mexican food I've had in the past 2 years was a couple of refried bean burritos. I ate one burrito and it sat fine in my tummy and didn't cause any issues. So a few weeks after that I had another burrito - and my reflux went absolutely haywire and I had to sit with my heating pad on and a bucket next to me and I was popping Tums and Zofran the entire night. So, I will avoid refried beans, but I really want a quesadilla with veggies. Yummmm! If it causes awfulness, I have the weekend free to rest and recover. Wish me luck! I most definitely will need it!
 
Cat, I pay about $78 for my prilosec (because of the dosage). I wonder if I should see how much nexium would cost. I have too many drugs that push $100 a month in costs, it's ridiculous.

Ever - I've done two different 24hr urine collections. One was for Histamine, this was for cortisol/creatinine and metanephrines. The histamine one was when we were looking at potential mast cell issues. This one I just did is for potential adrenal issues.
 
I'm excited! I just got back from the gym and I think Nexium is working - during my workout I experienced NO belching, no refluxing, no nausea, nothing. I *did* take a few Tums before hitting the gym as a precaution, because I don't know how quickly Nexium kicks in and I didn't want to reflux. But even so, I usually take Tums before I hit the gym, and when I was on Prilosec I would still get a bit refluxy. I could time it - there are 8 weight machines, and around the time I got done with the 4th machine I'd usually start burping, and then the nausea would start to hit after I finished on the 6th machine. I felt fine through all 8 machines today! It was wonderful! :D

Carrie, what dosage of Prilosec do you take? I was on 40 mg (2 20mg pills, one in the morning and one before dinner). I thought my GI said that the Nexium was going to be at a higher dose but it's 40 mg too (just one pill though, first thing in the morning as it's extended release). That's really expensive for Prilosec so I'm guessing you're at a high dose? It was $10 per month for me to be at 40 mg - of course I took the generic too, so technically it was Omeprazole and not name-brand Prilosec.
 
Flowergirl, I must have missed your post earlier. How cute that your son likes my kitty picture! :) Reminds me of something. When we used to live in an apartment, we were on the ground floor and had a sliding patio glass/screen door. Our cat loved to sit by that patio door and look outside. Sometimes the little neighbor girl from the next apartment would come over and talk to our cat through the screen door. Our cat normally dislikes children, but I guess she felt safe with the screen door in between her and the girl. One day, the neighbor girl brought her little brother with her when she came over to talk to the cat. The little boy was probably about 2, and I heard him ask his sister, "What that cat name?" She said, "Her name is Angel because she's an angel!" I couldn't help it, I laughed out loud when I heard that. My cat is many things but she's no angel! (And her name is Lydia!) Too funny!
 
Cat, I'm on 80. 40mg twice a day. everytime I pick it up they ask me why I don't get the OTC box, and I'm like, look at the dosage :p its barely a savings though. My insurance is testy about drugs with OTC versions and barely covers any of the cost.
 

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