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Cat, okay sounds good about the request! :)

I have a question if anyone can try to answer. A lot of us have Gastritis, but I thought that they medicine that coats your stomach (Carafate in my case) is suppose to get rid of the nausea. I've been staying up late the past week or so of nausea and indigestion feeling... is that just the Gastritis still you think?? Just wondering if anyone else has this too. Thanks!

By the way, never read The Spoon Theory before, and just read it last night. I absolutely love it! It's a great way to explain to friends or family for any illness. It's wonderful. :)
 
the carafate seems to help my nausea a little, but not all the time. I'm not sure why that is. I really think its the gastritis/ulcer because my whole stomach is very tender when I'm nauseous.

I do also get nauseous from bad D, but thats a different thing alltogether and passes when the D does.
 
Yeah you would think that carafate would pretty much heal tje gastritis and wouldn't cause nausea to happen. But I guess it's still possible. The nausea keeps me up usually and wakes me up in the morning. :(
 
Yeah it stinks. It's been 2 months for me. I think it helps me during the day. But for some reason at night and in the morning it's no good. I hope it's healing it too! It stinks that you really can't tell if it's helping or not unless they actually go in and do An endoscopy to look.
 
yeah. my follow-up endoscopy should be in ~two more months. he wanted to check at three. I wonder if the carafate does anything for the rest of the digestive tract or if it ever makes it that far. I don't fully understand what's happening when its taken.
 
Oh I don't even have a follow up lol. He just told me that I will probably be taking it forever since the gastritis is so severe. He did explain to me that the carafate does nothing to the rest of your digestive tract. Just the first couple weeks it may cause constipation. But then your tract gets used to it and it only affects the stomach.
 
I hope that your follow up appointment shows improvement. If not I'm sure they can give you a higher dosage of gastritis medicine probably.
 
I looked at the dosing info for carafate, and 4 times a day seems pretty standard. I didn't see anything where taking more did anything.

I don't know think he expects to see improvement in the gastritis, but he is hoping the ulcer will be gone. My prescription for carafate is for a whole year so I don't think he's planning on taking me off of it :p
 
Haha so is my perscription!! I'm so glad I'm not the only one who suffers from gastritis. It's nice that we can all share tips and stuff on how to manage it. It's frustrating though because with gastritis you have to have something in your stomach but then you get an upset stomach when it's trying to digest. It's like a never ending circle lol. I hope we all get diagnosed soon!! I think we have all suffered enough! And the D and racing to the bathroom with no warning is so tiring with the cramps and bloating! I'm always trying to buy baggy clothes so that I have room to still be comfortable if my stomach bloats and is hurting. Because like you said before, the slightest amount of presure on the abdomen is uncomfortable when you're not feeling well. We have to all get fixed!
 
you know what's ridiculous? I have these stretchy yoga pants from Old Navy. They're not tight at all, but sometimes my lower abdomen is so bad I have to roll my pants down below my hips and try to hide it with a shirt! I don't even try to wear my button up pants anymore.
 
I don't have gastritis but I agree...We REALLY have been suffering enough!!! *nods*

I'm at the point where I have completely given up on this stupid pill cam. With the way they just pushed me aside, they must not think its important. So I have a feeling it will come back normal just like every test. :( I guess good things are suppose to come to those who wait though, right? :/
 
I'm sorry you're not feeling good still allie :)

I think it was so bad of your GI to promise you he would view the images in a few days. The majority who have had them seem to have had a few weeks wait.

It sucks they won't let another GI look. Did they explain why this was, and were you satisfied with the reason?

Look at it this way, if it shows up CD, they are going to be in alot of trouble right!

I know how you feel though, even though once they figure out what is wrong with me, I am going to sue for malpractice and negligence, sometimes even the thought of that is not enough to keep my spirits up.
 
Yeah, I've even made a list of stuff I need to gather for the ER, because I'm not getting any better. If I get even a tad worse I'm driving myself over. Its just really hard for me to do that..I really don't want to!

I don't think I could sue them for negligence, but I definitely have a case for it. I'm the kind of person who never wants to hurt anyone else, and I kind of understand where they are coming from..only kind of though. I understand test results should show something in a normal case. Just the way I've been talked to and treated is the issue. Which is the main reason I haven't gotten in my car to go to the ER..they seem to treat me the same way.

As long as I take my Tramadol and chill as much as I can I think I will inch my way to September 1st without going to the ER. I would have been in the ER days ago without these pain meds...I'm on double, sometimes even triple the dose right now since my inflammation is severe and its digging into my left rib. I can feel it and its warm to the touch!

I'm sorry I seem like such a downer right now! I've been the same way with my husband..I feel like maybe if I keep talking about it I will figure it out and get to feeling better. Too bad that won't help, lol. I'm just so frustrated! I keep asking him on the phone, "what the h*ll do I do?!?!" and he just tells me to keep taking it a day, even a few hours at a time...
 
Its been warm to the touch like this during many flares since April, and when I was hospitalized they didn't find an infection. That's why I'm not too worried about it! I have had crohn's patients on Twitter tell me theres gets warm to the touch as well.

Don't be too worried, everything will work out ok! If it is bad I will end up with a DX for sure. So there is good to it. I just have to let down my walls and show it!
 
Carrie, I know exactly what you mean about the stretchy pants. I need to buy more!

Allie, I wish a doctor would just look at your pill cam results. If it shoes something then that's so good because you could get a diagnosis. And if nothing shows, it would be so disappointing but like you said maybe things do come to those who wait. I hope that's true since we have all been anxiously waiting. I really hope that you are okay. And don't worry about being a downer because you aren't. You are frustrated and hurting. We all understand and we are always here for you! We all have complaints and it's good to vent especially since we all understand each others situations unlike talking to our patents who don't necessarily understand as much. Hopefully you can wait it out until September for your doctor to get back to you and tell you what to do after. Maybe you can even get into the hospital you were talking about that is like the mayo clinic. Hope you feel better. I've been having tummy trouble all day today as well. When I think I'm done I gotta run back to the bathroom again. But, it'll be ok. Just inconvenient and makes my tummy unhappy.
 
You are very right Sunshine! Its not the going to the bathroom all the time that bugs me, its the pain! Even on all this tramadol I'm in and out of the bathroom all the time, no stool softeners needed. I don't know if its because I've gotten worse if it my body has gotten used to the Tramadol.

I love your new siggy btw! so inspiring. :)
 
Aw thanks Allie, I love inspiring quotes. It helps lift up my spirits and be happy especially through the tummy issues and the frustration of no one knowing what's wrong. On facebook I'm always posting quotes and stuff lol :)
 
I took everyone's advice and propped myself up in bed last night - It worked! That and eating almost no dinner. I slept for six whole hours!

Tonight I had a big dinner, so I'm drugging myself to sleep.

@Cat-a-tonic, you can get ginger chews here in east asian grocers and candy stores, as well as natural foods stores. Brands include Chimes, GinGins, and Ginger Boy (the east asian brand I found which is much cheaper than the other 2, but was probably produced in the same factory as Chimes). It is the consistency of a toffee chew, but tastes like a gingersnap.
 
Hey all... just wanted to update you guys on my appointment... or lack of appointment as it stands right now. :(

I have NO insurance... haven't had any for as long as I can remember. I was considering getting the insurance that is provided through my university. But now representatives are telling me that they won't cover my GI appointment/procedure because it's an "existing condition". Is that possible? I haven't been diagnosed yet... so how does that work? Does any of that sound like crap to you? I have only been to my physician for "abdominal pains".

Anyway, I am currently not scheduled for an appointment since the GI visit & colonoscopy will total to about $3000 if I am not covered by anything. Think of me you guys... I really hope that I can get in soon. :(
 
Entwined, I think maybe you should challenge that. I would want to talk to a higher-up and get their reasoning.

Also, remind me not to move to the US if it turns out that they can do that. I would never get coverage for anything at all.
 
That really sucks Entwined! :) I agree, I would figure out what happened.

Colleeny, the US doesn't have universal health care like you guys. :) Its really hard here to get taken seriously if you don't have insurance to pay for it...it sucks!
 
Ok so I've realized I can't eat whatever I want to eat. My stomach just hurts and I get an upset tummy. I don't know what I should eat from now on? I feel like I don't want to eat anymore, but I know I can't do that. Should I just eat Ensure!? What foods do you guys have luck with??
 
It took me months to figure out what I can and cannot eat. It depends on you unfortunately. Everyone is different. Keeping a food diary with your other symptoms help! I'm still learning new dos and don'ts every day.

Can eat: Pasta, diary, well processed/non chewy meat

Can't eat: fresh fruits and veggies (spinach, grapes, celery, apples, and watermelon are the worst), anything with fiber higher than 1g, corn (popcorn too), caffeine (was allergic to caffeine to begin with), eggs

I know my can eat list is small, but most everything gives me a hard time. Lately even my safe foods make me sick. I drink ensure as meals every once in a while to give my tummy a break! I have lost a ton of weight since I got back to the states, I can't afford to lose any more.

I hate when my parents ask me, "we are buying breakfast/lunch/dinner, what can you eat?" I always tell them that is a stupid question because its easier to tell you what I CAN'T eat!
 
Yeah definitely. Usually when my boyfriend and friends/family would ask what do you wanna eat? What's good for your stomach? I just answered, well anything I eat is going to probably upset my stomach, so I'll just eat whatever. But, the cramping hurts so bad. I just don't want to keep eating whatever I want anymore, I think it's just making things worse for me. Sometimes ice cream actually makes my stomach feel better lol. kinda weird that a dessert would make me feel better, but it does sometimes! :p

I think I'm going to buy some ensure and some little snacks like crackers and such to eat through out the day, instead of eating whatever I want. I really do not understand that right after I eat that I have to use the restroom, I don't understand that AT ALL. I guess we are all in the same boat though when it comes to that!
 
I personally find ensure to be very difficult to drink. I burned out on the chocolate and vanilla, could never drink the strawberry ones (bleargh), and can now only handle occasional butter-pecan and mocha. Instead, I put yogourt, pulp-free orange juice, and vanilla in the blender for a low-fibre smoothie. I also drink rice or almond milk when all else fails. And, although some people say that tea with milk will give you D, it doesn't do that to me. I practically live on tea with milk and honey.
 
Ice cream is technically good for a liquid diet, maybe that's why it doesn't hurt because it liquefies in your tummy. :) When I'm tired of going to the bathroom right after I eat (which now happens whenever I am off my tramadol), I go off solid food for a couple days to let my intestines rest. The cramping pain goes away, but not the swelling pain on my left side. I live off ensure, jello, chicken broth, pudding, ice cream, yogurt, and non-carbonated drinks. I never drink ensure for every meal because it is hard for me to just drink a whole one a day! They make me really nauseous for some reason.

I wish I liked tea to be able to drink that colleeny! My German GI who did my colonsocopy insisted I only drink tea the day before my colonoscopy, and I tried to down it because I hate the taste of any tea. I then threw it all back up! YUCK! So glad american GI's let you drink a lot more things, and eat non-red jello! So much easier!
 
I am currently not scheduled for an appointment since the GI visit & colonoscopy will total to about $3000 if I am not covered by anything. Think of me you guys... I really hope that I can get in soon. :(

Hello Entwine,
Sorry to ear of your illness and other problems.
Hope you will soon be feeling better.
I have sent you a PM (private message)
Hugs Trysha
 
Yeah I'll try ensure and see how it goes with me. And I love that ice cream does well because it's yummy :) lol. By the way for the past week I've been having a discomfort in my left wrist and elbow and a little bit in my left thumb joint. It's kinda weird cuz it's only in my left arm. Does anyone else have that discomfort?
 
@Sunshine when I get that discomfort in my arm, it's usually because I'm leaning to my left side and my arm is getting pressed against a chair arm or desk. I do that a lot when I'm sore on my right side.
 
My colonoscopy is tomorrow morning so I started on my liquid prep diet today. (well, after eating a piece of white bread so I could take my pills). Man, I feel like crap. I'm nauseous, and I can't stop hiccuping!
 
aww, Carrie the prep is the worst part! Hopefully today will fly by for you and you can get that colonoscopy over with!

Sunshine, I get pains like that, but in my right hand. My right thumb will get tingly, and my right wrist will hurt! My GI suspects carpel tunnel, since I work with computers, but I haven't gotten it officially diagnosed. My left wrist has started to hurt too but not the thumb.
 
I have pains, tingling, and numbness in my hands. I went and had an EMG to check for carpal tunnel, but nothing showed up. go figure, right? I never thought it was carpal tunnel though, I think it's arthritis. my knuckles and hands get swollen and my bones hurt to the touch.

allie - thanks! I ended up taking half a vacation day and coming home, because I can't even concentrate. I'm waiting to hear back from the doctor on whether or not I can take the carafate. I'm tempted to take some phenergen too.
 
Yeah, I agree Carrie, it could definitely be arthritis, especially when there is suspected IBD. That's why I haven't gotten mine officially checked!
 
Yeah, wasn't sure why my left arm feels weird. I was like really... what now lol :p. But hopefully it'll go away soon!

Carrie, I hope your day goes okay with the prep. I hated the nausea, I'm sorry you are feeling that way. :( So uncomfortable. Maybe the colonoscopy will show something though! Keeping you in my prayers!
 
thanks Sunshine :)

I had a lemonade bar which helped a little. I tried to make campbell's chicken broth, but the smell makes me want to die. I'd love to try something savory, but I can't think of anything.
 
Carrie, best of luck with the colonoscopy! Keep us posted! And as Allie said, the prep is definitely the worst part. Once you're done with the prep though it is pretty easy from there. Hang in there, just think of the lovely nap you get to take under sedation tomorrow. :)

Oh, and Carrie - I tried to friend you on facebook, but for some reason I wasn't able to? I think you might have the security/privacy settings dialed up too high or something. I can PM you a link to my facebook if you want to friend me.

With regards to arthritis, it's really common to have arthritis with IBD so I wouldn't be surprised if you guys all have it! I have arthritis too, it's been confirmed in my right hip. My GP wasn't able to confirm whether it's related to my gut illness though (but I'm sure it must be - I'm only 31, too young for regular old wear-and-tear type arthritis). My GP was able to diagnose my arthritis with a simple x-ray, so if you guys suspect you have arthritis, talk to your doctor and see if you can get it checked out. Mine was caught early enough that I'm treating it effectively with tylenol, aspercreme, and physical therapy. PT seems to help especially.

I had an interesting weekend. Went to see my grandparents. My grandfather is turning 80 in a few months, and his health has been terrible for about 5 years now. He feels like he is nearing the end of his life, and he asked me to help him with a project that he wanted to do before he dies. So, I brought over my digital camcorder, and made a video of him reading children's stories (Winnie the Pooh) aloud. He read those stories to his kids, his grandkids, and even now a couple of little great-grandkids - and he wanted to still be able to read to everyone after he's gone, hence the video. It's really sweet, but also bittersweet. I hate to think that he doesn't have much time left and is preparing for the end. I'm glad I could help him, and I'm sure everyone in my family will appreciate getting DVDs of grandpa reading stories from their childhoods, but it is really depressing in a way too.

So anyway, while I was at my grandparents house yesterday I learned a little about my grandpa's health, and we're scarily alike! My grandma was making us lunch, and she asked if I wanted any veggies with my chicken and potatoes. I said no, I can't really do a lot of veggies. My grandpa piped up and said, "Yeah, we don't like 'em! When I eat veggies they make me go to the bathroom 8 times in a row and I don't like that!" I hadn't realized my grandpa had digestive issues too - I already knew that he's got diabetes, heart problems, and vein issues. But the digestive thing is a new one on me! It became very clear after lunch though, his stomach was making more sounds than mine was! I've heard crohnies on the forum say that their stomachs make loud sounds, and mine does occassionally, but my grandpa's was super loud and it went on for a long time, it put my gut sounds to shame! So, I wonder if he's got an undiagnosed IBD or something like that??? I would think he doesn't have IBS since veggies (fiber) are no good. I don't know though. We also have the same kind of migraines - he gets the weird visual stuff too - and we both have arthritis in the right hip, although his is far worse than mine is and he uses a walker most of the time now. I didn't know any of that stuff until yesterday. So yeah, apparently I'm my grandpa's girl! Gut stuff, migraines and arthritis oh my!
 
aww I totally understand that feeling. Is your doctor allowing you to take your Gastritis medicine at all? Mine didn't, and I really think they should change that rule because it's killer when you can't take the medicine and can't eat. Hopefully if you're not allowed to take your medicine, the pain won't get too bad. Eating a cold popsicle seemed to help a little if you have any of those. The cold sensation going in the tummy kind of calms the gastritis down a little bit. :)
 
I do have my security settings up high. If you PM me, I will definitely add you :)

I just had another lemonade pop, and then the nurse called and said I can take some carafate. I'll take some in a little while, but I think I'm going to go lie down first. I took some and then went to bed the other night, I felt terrible. ugh
 
Cat, that's so sweet about your grandpa making the video. Sorry to hear he's getting older, but that's wonderful that you have so much in common that you didn't even know! I can just imagine you guys sitting at the table eating and all you hear is growling, like little monsters in both your stomachs! :p Who knows, maybe knowing the history about your grandpa can help figure out what's going on with you!

My mom's dad had colon cancer, but they did a colonoscopy with me and of course I didn't have anything showing that, thank goodness. But, that's really all of the family history that I know about that deals with digestive issues. Wish I knew more!

I found this online, and I wanted to share it with you all, because I know that we have all heard these things at one time or another and are tired of it!

10 Things NOT to Say to Someone with a Chronic Illness

10. You can't be in that much pain

9. Stop being lazy and get a job.

8. You just want attention.

7. Your illness is caused by stress.

6. No pain, no gain!

5. It's all in your head.

4. If you just got out of the house...

3. You're so lucky to get to stay in bed all day!

2. Just pray harder.

1. But you LOOK so GOOD!
 
Carrie, I'll PM you tonight when I get home from work (facebook is blocked from here). :)

Sunshine, that top 10 list is so true! And, my mom's dad had (and died from) colon cancer as well. He had a "sensitive stomach" all his life but was never formally diagnosed with anything except for the colon cancer. It's my suspicion that he had an undiagnosed IBD. It's my mom's suspicion that her dad had undiagnosed celiac. Nobody knows for sure though.

As for my grandpa, in addition to the health problems he and I share, like I said he's also got heart problems, vein problems, and diabetes. Oh yeah, and kidney failure too, I forgot about that one. I hope none of those are in my future as well! My grandpa did once tell me that I should either take really really good care of myself, or if not, that I should make sure I don't live as long as he has. He said age 75 should be the maximum age limit unless you take super good care of yourself. Age 75 was when his health took a turn for the worse, he had a cardiac arrest and then had to have heart surgery, and the anesthesia from the surgery made his kidneys go from failing to totally failed, and also made his diabetes worse. It was a snowball effect, the heart in turn made everything else worse. I don't want to go through that, don't want to live long enough to deal with that kind and amount of health issues, but I also don't really want to kill myself if I find that I'm still alive at age 74... so for now, I'm just trying to take care of myself the best that I can. (That still seems to involve candy though so age 75 still isn't looking super promising for me. Oops.)
 
aww the nausea is the worst Carrie. :( Zofran was the only way I get through prep without throwing everything back up!

Cat, thats uncanny that your grandfather is having issues! Just this past Saturday my grandmother called me to tell me...you'll never guess..that she is having a pill cam procedure next week! They think she has a blockage or a digestive issue they can't see. Her issues are constipation, but still! My entire dad's side has issues with their digestive system...gout, diverticulitis, stomach ulcers, etc. My dad's and uncle's gout has gotten out of control. I always wonder if anyone has IBD or Crohn's that just hasn't been found yet. Oh, and my sister's issue turned out to be stomach acid issues, not her gallbladder. She relies on pills to keep her stomach acid in check!

As for me...I seem to be getting worse. Which really sucks, because sorority recruitment starts tonight. I have a fever (and the lovely chills that come with the fever), extreme nausea, and in the past 3 hours I've gone had 5 watery bowel movements. The weird thing is, they are BRIGHT GREEN. Like I drank lime koolaid and it ran through me. I haven't had anything green colored to do this! I did a google search and they say bright green stools are caused by bile not being absorbed and changed because the stool is moving too fast through the large intestine. And guess what they list as a possible cause? Crohn's disease. Woohoo...*insert sarcasm*. I just went to walmart and got a ton of stuff to try and keep this at bay...over the counter anti-nausea medicine, a heating pad, biofreeze (some pain goes away with heat, some with cold..fun huh? :p), and a thermometer. I took the anti-nausea, a tramadol, 1000mg of tylenol for the fever...its all helped a little bit, but I'm still getting back in bed until class and recruitment. My little sister in the sorority asked me how I'm doing and I told her, and she told me she was going to get our advisor to ground me to my room tonight. :p And they are keeping me sitting during the entire event. I'm just praying this either gets better or I somehow scrape by until my pill cam results, which I should get at the beginning of next week...
 
Allie, have you gone to the ER yet? I've had various rainbow colors of poo but never bright green! If you're getting worse, it sounds like you urgently need to be seen. Don't wait a week for the pill cam results (that's only when your GI gets back, right? He will still need to find the time to look at the results after he gets back?). If you're going to try to get through the recruitment event tonight, can one of your sisters take you to the ER afterwards? A fever is not a good sign either, I was always told that if I develop a fever that I should be seen right away since it's not one of my normal symptoms and could indicate an infection. Will you please go to the ER? I know you've been talking about it for awhile, it sounds to me like it's time!
 
Allie, Cat is right. I think it's time you go to the ER! We are worried about you!

I'm not doing very well today either. :( I tried to eat a little bit of food, but took 3 bites and was doubled over not doing well. Had to run to the bathroom and had D, and I noticed I had DARK GREEN mucus... never had that before. :( I guess today is a green day for Allie and I!
 
Sunshine, yikes! Did you eat anything that was dark green? I've noticed that when I eat spinach, my poo turns the exact same color, medium-dark green. If you didn't eat anything that color though, then I'd be a bit worried. I'm not sure what would cause that if not spinach. I'm worried about both you guys! I hope you both feel better soon, and that your poos turn a less worrying color soon too. Keep me posted! Sunshine, if this gets worse, then you too please go to the ER or at the very least call your GI and let him know what's going on. Maybe now he'll be a little more receptive to trying to help you (if not, please do go to the ER!).
 
Sunshine, are you taking any iron supplements, chlorophyll or chlorella? Also blueberries? Other than dark leafy greens, that's all I've ever eaten that has turned my poo dark green.
 
Allie, I'm sorry you're still doing awful. I agree with Cat. If you're getting worse, I don't know if you should wait for your doctor to get back to you either. He doesn't even get back until the 1st, right? So that means several days probably until you hear one way or another. Pill cam results don't seem to be on any doctor's urgent list. Please take care of yourself.

Carrie, I hope your scope goes well. Let us know how it turns out. What time are you scheduled for?
 
Cat and Mayflower, I haven't had anything to eat like that. Yesterday all i ate all day was 2 spoons of soup for lunch and for dinner. Today I tried eating and had just a few bites and was bent over in pain and then had to go to the bathroom. :( and it was weird... I had D and then (this is going to sound gross, sorry...) I got up to wipe and without my control dark green mucus came out...
 
Yeah, you guys are right, its probably time to go to the ER. I'm really disappointed that it came to this. I don't want to go now because I'm on all kinds of meds, so tomorrow morning if I'm the same I'll get out of bed and drive to the hospital. I don't think it will do me any good to go late at night either.

My GI's boss told me they are making him focus on my case as soon as he gets back...and yeah he gets back on the 1st.

Sunshine, I'm sorry you are feeling bad too. :(
 
Allie, I really hope you feel better! I hope that your GI looks at the results RIGHT away when he gets back and calls you immediately!
 
the countdown has begun. at least the prep is easier to drink the more you drink it. I have no idea how I'm going to drink all this.
 
It's green and soft not exactly formed. but i haven't even ate anything today. just a few bites of soup and then i felt sick so i stopped. and have dark green mucus.. :(
 
Yeah, I called the nurse but I don't think she'll call me back till tomorrow. I'll call again tomorrow morning if it's still like that though. It just made me nervous because I've never had dark green mucus, but maybe the green stool will be gone by tomorrow. And whenever my stomach is irritated this much, the place where the took my gallbladder out gets really really sore and the pain radiates to my back. I wonder if that's because it's inflamed because i'm not feeling good and then it irritates the spot where it used to be? I don't know, but every time one thing goes wrong, it seems like a bunch of other symptoms come along with it unfortunately. and you all know about that too i'm sure!

Hope your prep is going well! We are all thinking of you and hoping you find answers tomorrow!!
 
Cat, that's so sweet about your grandpa making the video. Sorry to hear he's getting older, but that's wonderful that you have so much in common that you didn't even know! I can just imagine you guys sitting at the table eating and all you hear is growling, like little monsters in both your stomachs! :p Who knows, maybe knowing the history about your grandpa can help figure out what's going on with you!

My mom's dad had colon cancer, but they did a colonoscopy with me and of course I didn't have anything showing that, thank goodness. But, that's really all of the family history that I know about that deals with digestive issues. Wish I knew more!

I found this online, and I wanted to share it with you all, because I know that we have all heard these things at one time or another and are tired of it!

10 Things NOT to Say to Someone with a Chronic Illness

10. You can't be in that much pain

9. Stop being lazy and get a job.

8. You just want attention.

7. Your illness is caused by stress.

6. No pain, no gain!

5. It's all in your head.

4. If you just got out of the house...

3. You're so lucky to get to stay in bed all day!

2. Just pray harder.

1. But you LOOK so GOOD!

11. I wish I had Crohns so I could lose weight.

Dusty. :eek2:
 
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well, I"m back and full of air! Un/fortunately, he didn't find anything so we'll see. follow-up in 6 weeks. I'm going to sleep a little provided the air releasing from the scope doesn't propel me onto the floor.
 
Sorry that they didn't find whats going on Carrie! :(

Sunshine, that's so weird that we both got that at the same time. o_O I hope you are feeling better today!

I'm feeling a little better today. :) No fever, nausea is better, so I'm happy! I'm pretty much thinking I wont drag myself to the ER unless I'm feeling so bad I can't get myself to do mandatory sorority events. Then I know I'm in trouble! I went to the ER in Germany because I couldn't get myself up to go get my brand new car...so we went to the ER instead. >.< My BM's this morning were normal in color, so it makes sense that it is caused by it moving too fast through the intestines, since I took a tramadol and that slows everything down.

I hope everyone has a good day!
 
Well, my dad just called..and guess what? My poor sister is having D of undigested food and is spitting up a foamy substance. :( the medicine is helping but she is still not doing so hot. My dad wanted my GI's info so that she can go see him, and we can go in together. On top of my grandmother getting a pill cam...this really just shows this is not IBS. My family has so many digestive issues that are cropping up, its really scary! I told my dad once me or my sister is diagnosed with the correct thing, and we are having the same issues, I think the other should get diagnosed fairly quickly. It would be so weird if we both have IBD...wow!
 
Carrie, sorry to hear they didn't see anything on the colonoscopy. Did they take biopsies? If so, maybe something will be seen on biopsy. Have fun napping and farting, and of course eating again!

Allie, so sorry to hear your sister is so unwell too! I hope everybody in your family who is having issues can get diagnosed quickly. That's crazy about your grandma having the pill cam! That would be awesome if both you and your grandmother could get diagnosed from pill cams. At any rate, I hope your whole family gets some relief, it sounds like a lot of you are struggling with similar symptoms.

How's everybody else doing today? Sunshine, are you doing any better? May, Star, how are you guys? How's anybody I may have missed?

I'm doing pretty well. Having my "time of the month" so I'm a bit crampy and bloated, but otherwise doing well. I'm trying to figure out if I'll have enough spoons to do everything I want to on Labor Day. Hubby wants to go to a renaissance fair, which is about 2 hours away. The fair doesn't let you bring in your own food, which always scares me. I did write them asking for permission to bring my own food in and explained that I've got a digestive illness, but I haven't heard back yet, so I'm still leary about that. And then, since we'll be down near the WI/IL border for the fair, hubby thinks it would be a good idea to go down into Illinois and stop at Ikea and a few other places before we head home. So that'll be a lot of driving, a lot of walking, and potentially iffy food. Yikes! I know I'd be able to make it through all of that if only I could carry safe foods with me. If I eat something unsafe that doesn't agree with me though, it's going to be a rough day and a long car ride home with lots of pit stops. Wish me luck!
 
I don't know if he took any biopsies, but I don't think so. He said something about my fibromyalgia, but I really can't remember what it was. I didn't even remember posting here earlier!
 
Oh man, just read this page and, though I don't have much advice, just dropped by to say I hope everyone is doing okay today!
 
Hi guys, same-same here. Had a cold but only lasted 2 days which I am happy with. Just waiting to hear anything from Hopsital now with regards to PET scan/ pancreas test results, before my appointment with Rheumy on the 12th.
 
Star, have you noticed that all of your colds are like that lately? I can definitely tell that my immune system has been out of whack since I first became ill about 2 years ago. The first year of my illness, when I wasn't on any meds, I had zero colds, zero flus, zero viruses. The only illness I dealt with was the gut illness (that was more than enough to deal with!). Then, when I started on Entocort, I suddenly got every cold and flu going around. I think I had 3 or 4 colds/viruses within the first couple months of being on Entocort. That makes sense, since Entocort can cause you to become immuno-compromised. And now that I'm off Entocort, again no colds. One of my co-workers recently was really sick with a miserable cold, and she and I share a workspace for part of the day, and I was sure I was going to catch it. I had a little tickle in my throat and a bit of the sniffles for a couple of days, then nothing. So my immune system is really weird and that makes me think that whatever I've got, it's definitely got to be something auto-immune! Anybody else notice that kind of thing with regards to colds & viruses?
 
Hey everyone... Last night I got really really sick. I had arthritic pain really bad in my wrists, knees, elbows, ankles, and neck. It was the worst pain I've ever felt in my life. I had sharp pains near my bellybutton and all of my right upper quadrant, hurts just to move. It radiated to my back, and then when it got really sharp it shot the pain to my shoulders... I was bent over and soooooo nauseous. I just felt completely severely sick... I've never had those weird symptoms so I think its getting worse and I can't do it, it's terrible. :( the doctor at the ER was AMAZING! Never had a good ER doctor but he was honest and nice. But he just couldn't really help except give me nausea medicine in an IV but he said he couldn't help the arthritic pain. He was upset at the fact that no one has ever put me on steroids to just see if it help my flares. He gave me a reccommendation to see another GI. He said he is the best of the best. I'm seeing him tomorrow because of how bad of shape I'm in. My mom even called my current doctor doctor to see me today because I was throwing up and in the worst shape I've ever been in, and he told my mom he can't help me, because were trying to go to the mayo clinic... Wow I thought doctors are suppose to want to help when someone is in really bad shape, the worst I've ever felt. But he didn't care. :( this is so frustrating! So I'm just trying to get through today, and hope my new dr app goes well tomorrow and that I can get into mayo clinic shortly... Idk how long I can do this. This is terrible :( my ER doctor was upset because he said if the arthritic pain is a new symptom it's obviously not just affecting my intestines but now is giving me external intestinal signs and that's not a good sign. Sorry to write so much, I'm just feeling the worst I've ever felt in my life and it's not going away. I almost went back to the ER just so I can be on a strong drug so I can sleep. Just hopping I don't throw up again :( things are not right with me... I need help :( wish I could go to the mayo clinic sooner...
 
I'm okay, Cat. Thanks for asking. I am on my time of the month as well, so I am attributing any intestinal issues to that for the time being.

Sunshine, I'm sorry you're in such a bad way. But that's awesome about having a doctor's appointment tomorrow. Let us all know how it goes!!

Carrie, I can't believe anyone would do a c-scope and just not do biopsies. What would be the point of that if they're looking for something that could potentially show up microscopically? That's crazy!!

Allie, that is really nuts about everyone in your family. Yeah, maybe if one person gets a dx, it'll lead to the other getting treated seriously.

If I left anyone out, sorry, but hope all is well.
 
I think this thread should be renamed "time of the month thread". I am just finishing mine. Not too bad this time although a few days before I started was all sore and tender, sure knew I was due, which I rarely get.

Cat, to be honest I get few colds. I always was on a multi vitamin but GI said I didn't need it. So I stopped months ago and honestly I don't think I did need it. Also stopped daily echinacea, and to my amazement was fine. I had a nasty flu bug in March, and this cold is the next sick outside "normal" I have had. It's quite bizarre, I expected to be sick all the time without vitamins. I do take daily 3x Vit c and Echinacea while I have a cold though to help the fight.

Sunshine, sorry to hear you are so unwell :( I had a great ER Dr last time I went too, as he put it, it was a case of "making you comfortable, patch you up and send home until the next time".

My joint pain started 2 years ago and i'm not dead yet or anything lol (bowel issues started 5 yrs ago) so try not to worry too much. I know it's not nice developing something new :( I think it's a good thing you decided to leave GI, how terrible he wouldn't help as a stop gap even.
 
Sunshine...in short hun...the Mayo clinic has an ER !!
Go there if needed....it will be worth the drive !
Hope you feel better and sorry you're feeling so awful !
 
Thank you everyone, I hope I start feeling better soon. I've never had it this bad, so just hoping I can get into the mayo clinic soon!!! And thank you Crohn's mom! I didn't know they had an ER! Didn't really think about that. Can't wait to get in there!

I hope that everyone is doing okay today.
 
hah 'time of the month thread'. Did I mention that mine came pretty much right before the c-scope? I bet the doctor was happy. :p

I talked to Kelly a little bit last night about what my GI said. Apparently he said that he thinks its my fibromyalgia making me like this. I don't see any indications that he took biopsies anywhere on my paperwork.

The sedation didn't work as well this time as last time. I don't remember everything, but I do remember some cramping pain during the procedure but it's vague. taking xanax before I left the house was a smart thing to do.

I'm a bit depressed. After watching my medication go down the toilet again only to have what I consider a non-answer, I dunno. I just want to stop taking everything. it's not like I feel awesome anyway... sigh.
 
Carrie, I've never heard of fibro causing IBD-like symptoms. Pain yes, but other symptoms no. I have read that having one auto-immune illness, such as fibro, can make you more susceptible to developing other AI illnesses. I do know a girl who has both UC and fibro, so it's definitely possible to have both. I'm not sure where your doc is coming from, trying to write off your symptoms as being part of fibro, and not doing any biopsies just seems like a waste of a c-scope! There are illnesses like microscopic colitis that can ONLY be diagnosed via biopsy. If you know David, the admin of the forum, he has microscopic colitis and he said that his c-scope looked fine and normal, but evidence of his illness was found on biopsy and that's how he got diagnosed. So, I really don't understand why your doc wouldn't do any biopsies. That makes no sense to me!

Sunshine, I hope your appointment goes well today and that this GI can get you some relief, if not answers! I also didn't know the Mayo clinic has an ER, thanks Tracy for the info. I get bad joint pains all over too when I flare up, even though I only have confirmed arthritis in my hip. When I flare, all the joints start to ache - lower back, both hips (arthritic and non-arthritic one), knees, ankles, wrists, etc. But when I am not flaring, the only joint that hurts is my arthritic hip, and that's not very bad at all now that I've been doing physical therapy for it. So, if you get out of this flare and still have an achey joint or two, see if your GP can x-ray it. That's how my arthritis was found.

Star, I stopped taking my multi-vitamin too. I figured, since I drink Ensure most days, that's already got a lot of vitamins, so I probably am just being redundant by also taking a multi-vit. So I stopped, and I haven't noticed any difference either. Although, I am anticipating getting a cold soon. I have 2 nieces and 2 nephews, all very young and full of germs. My oldest niece is turning 8 soon and I am going to her birthday party and I always seem to get sick when I see my nieces & nephews. When I was on Entocort, 2 of the times I was sick (one cold and one flu) were due to my nieces & nephews - the flu was awful, my niece was sniffling and coughing at xmas, and then 2 days later I had a horrible fever (not a flare because I don't get fevers when I flare). I enjoy seeing them, but not getting their germs! So I think I'm going to start taking vitamin C and maybe zinc ahead of time to try to prep my body for another cold. I don't know if I'll actually get a cold or not, since my immune system is so out of whack, but I always anticipate catching one when I see the little kids.

Allie, how are you doing today? Hopefully better still?

Sorry to hear everyone's on their time of the month! Funny how that works out, we're all in sync. I plan on being kind of miserable tomorrow & Friday - of course being on my period makes me crampy, and high heat & humidity also makes me crampy. It's supposed to be 92 here tomorrow and 90 on Friday, with high humidity both days (for Star or anyone else not familiar with fahrenheit, I found a conversion thing online, and it looks like that's about 32 or 33 celsius - very warm!). Sooo, I shall be cramping for the next 2 days. The good news is, it's supposed to get down into the 70s by the weekend and into the 60s on Monday! I love fall weather, when it's sunny but a little chilly and perfect jacket weather. So at least I've got that to look forward to. :)
 
I'm glad I'm not the only one who is confused about the fibro comment. Also, I didn't know Fibro was an AI? I thought a lot of doctors still debated it was even real.. :(

I'm always really crampy the first few days of my period so I'm glad it's Wednesday, not Friday! Cat, I'm sorry you're going to be miserable. It's finally cooling down here such that I feel like I can open windows.
 
Sunshine! I'm sorry you are feeling bad! That's so great that the ER doc heard your loud and clear. I really hope this new GI gets you on the path to the right diagnosis!

I'm back into feeling bad again. >.< Fever's back, bright green stool is still happening, but nausea isn't quite as bad though. Recruitment is sucking the life out of me. Our advisor didn't let us go to bed until 2AM last night, and we still didn't have everything finished. She does not care whatsoever that I was falling apart in front of her, she said no one can go to bed until this is finished. It was awful! I then had to get up at 9 to drive 30 miles to where one of my group projects is being done. Then tonight will be another stressful and late night, then I have to be up early to welcome our new sisters. It never ends. Its not something I can just not do either. >.<

My GI made an appointment with my sister, I'm not sure when, but its soon. I'm hoping she gets figured out ASAP not only for her, but for me to have something to present to doctors as well. Of course if my pill cam shows something, she will have something to present to the GI instead!

Sorry I haven't been around much! With sorority, class, and health going down in flames I don't have time for much right now. It will get MUCH better next week, thank god! :) Maybe then I can finally focus on me a little bit and not feel like DEATH!
 
Carrie, I thought fibro was an AI illness - but I just googled, and it turns out I'm (probably) wrong. Sorry about that! Here's an interesting link about fibro and auto-immune illness which straightened me out:
http://chronicfatigue.about.com/od/whatisfibromyalgia/f/fibroautoimmune.htm

Allie, it sounds like this week is going to kill you! Please, please go to the ER especially if it gets any worse? And don't let the sorority push you into doing so much, when you feel this awful I know you can't have enough spoons to do everything you're trying to do. Get some rest, try to relax, please don't overdo things or you'll just get worse! I'm worried about you!
 
Allie that's horrible! Especially if you're already in a bad way. Exhaustion sure isn't going to help anything.

Anyone heard from Sunshine?

How is everyone today?
 
I haven't seen anything from Sunshine since the 30th.. here or on FB :(
Allie, how you doing? Any better?

My D is back so all is "normal" here :p
 
I have not heard from Sunshine in a couple of days either. I hope this means she is either resting, or possibly that her new GI admitted her to the hospital? Sunshine, thinking of you, please update us when you are able to!

Allie, how are you today? Doing better I hope? It's Sept 1st, have you heard anything from your GI yet regarding when you're going to get the pill cam results? I believe the 1st was the day you said he'd be back, right? Hope you're hanging in there and getting some rest, I'd send you a few of my spoons if I could!

Carrie, I'm not sure if that's a good thing or a bad thing, although I know you were having a hard time with constipation recently so I guess d is better than that (?). What's next for you now that you've had the scopes?

I'm doing well today. I think I already said that I might go to a renaissance fair on Labor Day, but I was nervous about it because they wouldn't let any outside food into the fair. Fair food is generally fried crap as we all know and not safe for those of us who can't tolerate fried things! So, I just got it in writing from someone in charge at the fair, saying it's okay for me to bring in my own food. Yay! That makes me feel a lot better. I'm going to load up my bag with ensure and bananas! I love when places accommodate my crazy dietary needs. :) I hate being "that sick girl" who makes them bend the rules just for me, but if it's what I have to do to feel well then that's what I gotta do.
 
Hi Cat,
I'm not really sure what's next. It's already time for my follow-up upper endoscopy so I need to schedule that. I still have a gastric emptying scan to schedule. I'm supposed to have a follow-up u/s on my thyroid (one side is bigger than normal). I also need to see an ophthalmologist for a follow-up eye exam since I take plaquenil, and I'm disgustingly overdue - like 3 followup appts overdue. My dry eyes aren't getting any better, but they just kind of shrug and move on. I think my teeth are rotting from my dry mouth issues, so I have to get back to the dentist soon and have him check my upper teeth. I still haven't been back to the GP. My endocrinologist wants me to get an EMG but never ordered it, and I have to go have my blood work done in a week or so.

I don't know how to get all this done without losing my job due to too much time off, and most of it is just follow-up crap.

Oh, and I also meant to tell you this but I'm glad you heard from a faire person: If its stuff like ensure that healthy people wouldn't want to eat, they usually don't complain. They're trying to keep people from bringing in their own sandwiches and stuff, but they've never given me a hard time about things like crackers or anything.

also: if you're dressed in garb you can usually get away with bringing in more prohibited items than the vanillas.
 
Carrie, can you schedule some of these follow-ups during your lunch break so that you don't miss too much work? That's what I usually try to do. Up until now, I had been going to physical therapy about every 2 or 3 weeks. I always tried to schedule that during my lunch hour. I also have FMLA (family medical leave) so that if I do need to take the time to be off sick or go to the doctor, I won't get fired or penalized for it. If you haven't already, you should look into applying for FMLA. Yes, you can get approved even if you're undiagnosed - I was told by my HR rep that all they really need to see is that your doctor indicates on the paperwork that you have a medical condition which will cause you to require more time away from work than the average healthy person would. My GP was kind enough to write "Inflammatory Bowel Disease" on my FMLA application this year so I got approved easily, but even last year when I had my GI fill out the paperwork and he put that I am undiagnosed, I still got approved for FMLA. It's a lifesaver for those of us (in the US, not sure if other countries have something similar) who work and are dealing with this type of illness!

As far as the ren fair goes, I have never been to one before! So I really am not sure what exactly to expect. On their website, it did say that they have a very strict no outside food policy, and they search all bags and purses and will kick you out without a refund if they find ANY outside food. Eek! So I'm glad I got written permission - I printed out the email and am bringing it with me too, just in case there's any confusion. I don't plan on dressing up, I have heard that about half the people who go to this fair do not dress up. So I'll just observe everybody elses costumes. I do dress up for Halloween but that's it (if you look at my facebook photos I have quite a few Halloween photo albums in there!).
 
Haha, yeah, fairs are great for fried foods. I remember walking around last year, looking at everything, thinking, "I didn't know it was possible to fry THAT!?!" Like they had fried butter. So good move on getting the permission to bring your own food. I can't imagine they'd be nazis about it if you had a medical reason.

What is a renaissance fair, anyway?

I didn't realize it'd been two days since Sunshine was seen around here. Wonder if she did get admitted. And Allie hasn't been on all day, has she? Maybe they both got admitted. If that's the case, then I hope something good comes of it, even if it is just relief of awful symptoms.
 
Hey everyone, sorry I haven't been on here in the last couple of days. I am just really sick, and have been since about 4 days ago, and it's still hasn't lightened up yet. :( I've never been this bad...
The new GI doctor saw me yesterday and he saw how much pain I am in, couldn't stop crying. :( He wanted me to do a small bowel series and blood work. I did the small bowel series this morning, and because I've been throwing up so bad it took a long time for me to get it down and for it to stay down. It was a really rough morning for that test... But anyway, got that test done and the doctor was like, have they checked you for crohn's? And I said I think this is why I'm doing this test to maybe be able to see something. Then the doctor came back and said everything seems to look normal... :( I HATE THAT WORD... NORMAL/NEGATIVE goshhh... so miserable right now. But the doctor did say, "have they checked you for Lupus? Or any Auto immune disease? That's the first thing I would of checked for." he said. He thinks it might be an Auto Immune Disease. So with my blood work I got blood work for Lupus. But, I'm thinking of going to see an Immunologist to see what he thinks. What do you all think? What are some auto immune diseases that can cause digestive system attacks? I'm just really scared because I've never felt SO bad before, and no one knows what's wrong. Gosh, so frustrating... But you never know maybe my doctor will see something in the test i did today that maybe the radiologist didn't see... I doubt it, but just trying to be optimistic... I really just wanna be in the mayo clinic, because they would check EVERYTHING. I'm hoping this new dr will be able to figure out what's going on or the mayo clinic can fit me in soon.
 
I can probably see the dentist in a lunch break, and I can move my bloodwork to a closer lab, but I'm not sure how many of the other things can be accomplished.

I do need to apply for fmla.. :(

Dressing up for a ren faire is an experience. A lot of people who aren't dressed up tend to assume that anyone dressed up is part of the faire. A lot of people who dress up are part of a guild of some sort (wenches, pirates, mercenaries, rogues, assassins, privateers, etc) which actually have rules for behavior when you are in costume. Many of the local guild chapters work with the local ren faire in some way or another, adding volunteer color, marching in the parades, finding out who is acting like an ass in costume and reining them back in, stuff like that.
 
Sunshine, I'm sorry you're feeling so ill :( You can definitely have a different auto-immune disease and have digestive issues. I've had my ANA panel and RH factor done a couple times. I hope something shows up on your ANA panel so that they start treating you. I see a rheumatologist and an endocrinologist. I've thought about immunologist before, I'm sure that's a good place to go.
 
May, a renaissance fair is like a regular fair but set in medieval times. There are jugglers, jousters, singers, swordfighting, stuff like that. (I haven't yet been to a renaissance fair but that's what it looks like from the fair's website anyway.) Lots of people show up in costume like Carrie said - I normally like costumes, but I don't think my tummy would be comfortable if I tried to squeeze into a medieval corset.

Sunshine, glad to hear from you but sorry you're still doing so poorly! And also sorry to hear that you had another normal test result, that's so frustrating especially when you feel so awful! I wish they could get you some answers and relief. As for what other auto-immune illnesses besides IBD can cause gastro symptoms, I don't know much about Lupus but I believe that one can cause a whole myriad of symptoms. Also, I know that Addison's disease can cause digestive troubles. I was tested for Addison's, it's a pretty easy test - it's like a long (2 or 3 hours) blood test. Ask your doctor about the ACTH test. Here's a link about that test:
http://en.wikipedia.org/wiki/ACTH_stimulation_test
Not a lot of doctors know much about Addison's, as it's pretty rare. Here's more about it, scroll down to the Symptoms section and see if this sounds like you:
http://en.wikipedia.org/wiki/Addison's_disease

Edited to add: The reason I was tested specifically for Addison's is because I respond really well to even low doses of prednisone. Addison's is an adrenal insufficiency, meaning the adrenal glands aren't producing enough natural cortisol in the body. Prednisone is a steroid, but it's also a form of cortisol. When I was on 10 mg of pred, I felt so fantastic, and the ideal dose of pred for Addison's is 7.5 mg. So based on my gut issues and the fact that a low dose of pred did such good things for me, that was why I was tested for Addison's. Just in case you were wondering.
 
nice thing about the bodices, they're not exactly like corsets. Usually they only have light boning on the sides and maybe along where the laces are, but not always. You don't wear a bra with them typically, so nothing presses into your stomach area, and they're usually only really to your waist which leaves your lower abdomen loose under big flowy skirts.
 
Carrie, I didn't know there was a difference! I actually do own a corset, made it myself though so it's a bit wonky. I can sew, but I'm self-taught and usually just improvise rather than follow a pattern. I did make my corset from a pattern and managed to follow the instructions for the most part, but I did improvise a bit here and there too. ;) But since it is a corset, and not a bodice like you said, it squeezes my tender tummy just a bit too much for comfort. I wore it on Halloween years ago (we dressed as the evil dentist and Audrey from Little Shop of Horrors, and Audrey has, well, a lot of cleavage, enough to warrant a corset!). And I don't really own anything medieval to wear over the corset anyway.
 
Carrie and Cat, I'm just trying to hang in there. I was upset that they didn't find anything today too, but maybe something in my blood work will show... hopefully! I'm just tired of feeling terrible and no one can really help or fix it. I'll definitely have to check out for auto immune diseases... but I wouldn't understand why I have duodenum inflammation if it was autoimmune... I still think it's something with my intestines. I still have the pill cam to do as well. Thanks for all the information about Addison's disease. My grandma had Addison's actually so maybe that's something I should look into. Just gotta keep being patient and just see what happens.
 
a bodice is like the precursor to a corset. its three pieces, a back piece and two front pieces and looks kind of like a vest that back and the two front are laced together under the arms, on top of the shoulders, and the two front pieces lace together in the front. Some of them are 4 pieces so even the back piece can be expanded. You can make a bodice without boning using two layers of duck canvas and you can use zip ties for the boning.
 
Sunshine, do you know if your grandmother had primary or secondary Addison's? Apparently there's a difference. Primary is autoimmune, where your immune system attacks and damages the adrenal glands. You get the skin darkening symptom with primary Addison's. Secondary Addison's is where you've got something else going on that then in turn damages the adrenal glands. Long-term use of prednisone can apparently cause secondary Addison's - the adrenal glands shut down when you are on pred, since pred is providing the body with all the cortisol it needs, the adrenal glands don't have to do anything. And if they're shut down for too long, sometimes they "forget" how to come back on again. I believe complications of celiac disease can also cause secondary Addison's. I have a distant relative who has celiac and secondary Addison's, and he said the celiac somehow caused the Addison's (I'm not sure how though). Anyway, primary Addison's would be auto-immune and could potentially be inherited, so it is possible that your grandmother passed those genes on to you.
 
You're welcome, glad I could help! I hope you feel better soon.

Anybody heard from Allie yet? I hope she's okay.
 
Yeah, I hope she's doing well. Hope she gets the pill cam results back soon! I can't wait to hear what happened with that.

What kind of doctor should I see for immune system stuff, and Addisons??
 
You can see an endocrinologist for Addisons. I think for unspecified auto-immune maybe start with an immunologist. Ophthalmologist and ENT are familiar with sjogren's, GI with UC and Crohn's, Rheumatologist with RA, Lupus, ... my mind is drawing a blank, Endocrinologist with Addisons, Graves maybe? pretty much any autoimmune involving endocrine systems; thyroid, adrenal, pituitary, etc. It's overwhelming, I think.
 
yeah very overwhelming haha, I guess I could start with immunologist and then go from there. But I still have the pill cam to do as well. I will multitask!
 
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