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What tests have you had? Have you had a colonoscopy? As I'm sure you know, IBD is associated with SpA.

Have you ever had a gastric emptying test? My younger daughter has delayed gastric emptying - Gastroparesis. She often gets very full and nauseous after just a few bites. She is on medication to speed up her motility and has a feeding tube, because she was so underweight that she was hospitalized several times. She lost about 25 lbs before we figured out she had Gastroparesis in addition to Crohn's.

As far as I know, Gastroparesis isn't associated with AS/SpA but I do know several kids with both, for whatever reason.

My kids also tend to have no appetite when they're in pain and just not feeling well. Could that be it?

If you have a lot of enthesitis, Voltaren gel might really help. Not much of it is absorbed, so it shouldn't impact your gut at all. And it may help with the pain.

Fusion takes a long time to develop, so if your symptoms only just started, then it's unlikely you have any (which is GOOD). But inflammation, over time, can lead to damage so it is very important to treat the inflammation. I hope Sulfasalazine works for you but if not, don't be afraid to ask for something else. Both my girls have been on Sulfasalazine with no side effects, so hopefully it will be easy for you too.

Light exercise - in a pool or PT, should help but of course, don't overdo it, especially while you're underweight! Even just being in the water and swimming a little bit helps my girls with pain.

Good luck!!

Thanks so much!! Yeah, just about everything…pill cam, colonoscopy (nothing but polyps), upper endo, gastric emptying, ultrasounds internal and external (nothing but ovarian cysts), barium x rays (this showed distended ileum but GI dr dismissed it after everything else looked fine). I was almost certain I had gastroparesis for a time, as that's exactly how I feel—no matter how much I've tried to stimulate my appetite or slowly "stretch" out my stomach. I don't think it's pain-related—early satiety was my first symptom, and started long before I ever really noticed joint pain etc. I'm usually a very enthusiastic eater and was at a healthy weight (135~) when it all began…so, I've really no clue at this point, and kind of gave up trying to get that answer. My GI did say we could do a CT/MRI if my weight wasn't stabilising, but I've been doing alright the past few months so I didn't push it. Somehow I doubt anything would come of it, but it will likely be the next step once things go downhill again gastro-intestinally!! :p
 
Question time from me!

So, I've known for awhile now that fiber is generally NOT my friend, even though I keep trying. However, for a long time now I don't have fruits with skin, mostly canned, and veggies are cooked to mush. I've also thought for awhile that when I do get fiber, which I've been trying to do in the form of Benefiber, it decreases my "transit" time by leaps, but I've never really been sure.

Then, new Dr (the Cardio/EP who dx with Sjogrens) wanted me to try brand MetaMucil capsules, 5 caps, twice day (being sure to take them approx 2 hours away from other meds).

Last night, I took my first dose while watching a TV episode. I had explosive D before the episode ended!

So, this morning, I took my meds at 6am. Waited until I could time the fiber. Took it at 8:25am (having not eaten anything in between, just one cup of coffee at 7, and water to drink). At 9:05 I again had explosive D! Can this be real? I mean, can the transit time really be so short, as just 40 minutes?

And if it is, is there any chance it will get better? Will I adjust?

I'm also switching probiotics, at this Dr's suggestion - just to try something new, I'm going to start taking Align. But now I don't know what time of day to take that - maybe mid-day?

TIA!!!
 
Hi Adadzio, hi am HLA-B27 neg but have AS or PsA. Sulfasalazine was great for About a year then stopped working. Then I tried methotrexate and ciclospirin. Going to start Humira soon.
 
So my doctor called again this morning. After taking a look at my bright red throat and listening to my crazy cough at my last appointment, everyone is suddenly taking everything much more seriously and several other specialists have been consulted as well.

They can't seem to figure out a logical reason as to why I have motility issues in such a small, concentrated part of my esophagus and since my gastroscopy didn't work and it's going to take ages to get an appointment to have it done under general anesthesia - I'm going to have some kind of x-ray in the meantime. Another barium swallow maybe? I'm not sure, she didn't specify.

It's strange how the only thing I hear when doctors are unsure of what sometning is, is an anxious annoying voice in my head that goes "you probably have cancer" :p Stupid anxiety.

They're adding Ranitidine to my medication cocktail rather than further upping my PPI dose, which seems reasonable to me. I tried the 120 mg PPI thing for like two days but I wasn't digesting anything particularly well and was getting a lot of crampy stomach pains.

I'm frustrated by the wait, but at the same time if they thought I had something horribly dangerous I doubt they'd make me wait. So I'm just kind of at a standstill currently. Trying to get by until they figure it out. But at least they're trying and keeping in touch. I swear this is the first doctor who's called me without appointments just to check in and explain how things are progressing.
 
So my doctor called again this morning. After taking a look at my bright red throat and listening to my crazy cough at my last appointment, everyone is suddenly taking everything much more seriously and several other specialists have been consulted as well.

They can't seem to figure out a logical reason as to why I have motility issues in such a small, concentrated part of my esophagus and since my gastroscopy didn't work and it's going to take ages to get an appointment to have it done under general anesthesia - I'm going to have some kind of x-ray in the meantime. Another barium swallow maybe? I'm not sure, she didn't specify.

It's strange how the only thing I hear when doctors are unsure of what sometning is, is an anxious annoying voice in my head that goes "you probably have cancer" :p Stupid anxiety.

They're adding Ranitidine to my medication cocktail rather than further upping my PPI dose, which seems reasonable to me. I tried the 120 mg PPI thing for like two days but I wasn't digesting anything particularly well and was getting a lot of crampy stomach pains.

I'm frustrated by the wait, but at the same time if they thought I had something horribly dangerous I doubt they'd make me wait. So I'm just kind of at a standstill currently. Trying to get by until they figure it out. But at least they're trying and keeping in touch. I swear this is the first doctor who's called me without appointments just to check in and explain how things are progressing.

I'm guessing you have a lack of stomach acid (hypochlorhydria), like me. My GI put me on Prilosec and I had to discontinue using it because I felt like all my food was sitting on my stomach like a brick - it wasn't digesting - and I got nasty stomach cramps right around my belly button along with nausea (both of which stopped when I stopped the Prilosec). He put me on it before he did an upper GI endoscopy thinking I had stomach ulcers - I've had GERD since I was 16. However, when he did the endoscopy, he found no evidence of recent ulcers. I don't like PPI meds - they aren't good for you anyway. I prefer to take an antacid when my symptoms start. My favorite and the one that works the best is Pepcid AC 20mg. :)

I hope they give you answers soon.
 
I performed an experiment last night, but I have no idea if it's an accurate representation of anything at all LOL. I decided that it would be interesting to see how fast "things" are really moving through me. I haven't had anything with sesame seeds since May, so I thought that would work. At 1:30pm, about 2 hours after lunch, I swallowed a spoonful of sesame seeds with a generous glass of water. About the same time I took my 5 fiber capsules. The urgent movement shortly after the capsules had no seeds (really didn't think it would, after a little consideration). Ate dinner around 6pm like normal (if mashed potatoes can be considered a "normal" dinner!). However, around 9pm I had another very loose movement that DID have quite a lot of seeds! After some reading around on the 'net, this seems very fast, but I guess my best bet is to wait and talk to GI about it later, or send a message to my new EP and see if she thinks the fiber is possibly making things worse instead of better - is that even likely, I mean, MetaMucil is just psyllium, right??
 
Wildmtn, in a flare I've had incredibly fast transit times too. I used to take a peppermint capsule. There were a few times when I'd take my capsule, and then only 15ish minutes later I'd run to the bathroom and have a very minty-smelling poo. So yes, it's possible.

I take psyllium husks (1 teaspoon daily in a big glass of water, I'm actually drinking my psyllium right now as I type this) and psyllium seems to regulate things for me - they've never made me run to the bathroom like that. Sounds to me like they're just not working for you. Maybe revisit the fiber thing when you're doing better, but for the time being it might be best to avoid fiber for awhile.

The only thing I can think is, metamucil does have some additives which can cause cramping for some people. I take 100% organic psyllium husks with no additives, I buy it at a health food store. You could try that and see if there's any difference. With symptoms as severe as you've described, though, I'm guessing it probably won't make much/any difference. You might just be too inflamed right now and psyllium is only irritating your insides and making your system that much more unhappy. Inflammation plus fiber is not a good combo generally speaking.

Izzie, that's what I do as well - I take a PPI (40 mg Nexium) and I also take Ranitidine. I take 300 mg 2x daily, once before exercise and once before bedtime as those are my two worst reflux times. That seems to help me quite a bit, the Nexium is my main med and the Ranitidine is more of a "spot check" to keep things at bay at the times that it's most likely to be bad. I hope that works well for you too. Keep us posted. Good luck on your upcoming tests as well, I hope they can figure some things out!
 
Izzie, I think waiting is the worst!

Lately I've taken to quoting Monty Python: "Always look on the bright side of life!" (Life of Brian) and, "I'm not dead yet!" (Search for the Holy Grail) -- makes me smile, at least!!

Thanks Cat!

Actually, I decided to finally google, and it seems the caps don't have anything extra (at least not currently) which is probably why my EP suggested them. They are literally just psyllium husk inside a gelatin cap (http://www.metawellness.com/en-us/products/metamucil-fiber-supplements/fiber-capsules-original) unlike a lot of other MetaMucil products.

And I know I take other stuff inside of gelatin caps. So it's bound to be the fiber :(

On the up side, the bleeding is slowing! On the down side, the pain is not subsiding, and some RUQ pain has decided to join the party with the RLQ pain, on occasion.

But I have pretty nail polishes, and some new lip glosses from my last Drs appointments to play with today!

Sing it with me now: "Always look on the bright side of life!"
(ignore the rest of the scene/song if you know it, just use this one line ;) )
 
I'm glad you Cat, and Wildmtnhoney can find happy places in song and exercise, etc. I too have a few such happy places, a couple of songs, even a couple movies I relate to, and fishing for the real real life. (Maybe exercise will be added to this list as time goes on.) We went day fishing Saturday (about a weekly occurrence lately) and it helped, tho with my mobility issues on top of GI problems I wish the bathroom was a little closer where we were. Still, other those urgent campy times, it was great. A beautiful mountain lake, watching a bald eagle who came down very close (such magnificent birds) and catching fish. Hard to beat.
Happy day to all. Must run to the bathroom, lol.
 
Sandy, that sounds wonderful! We get bald eagles here too but usually mainly only in January, not so much during the summer. I'm not very good at fishing, either - I've been fishing on a boat once, and while I did catch a fish, I also felt quite seasick the whole time. :p I've also only been fishing on land once, when I was a little girl my grandma took me fishing, and I caught a stick. Ha ha. So fishing is not really my thing! I'm glad to hear you got to go to your "happy place" though.

I got to go to my happy place too, I took my new kayak out for a spin yesterday. I had needed to de-stress - I had a rather rough visit with my grandmother on Saturday, with her crying and telling me that nobody cares about her except for me, and that her kids (my dad and aunt and uncle) want her to die so that they can take her money. That's not true at all but she's got dementia/alzheimer's so her view of the world is quite skewed at this point. So after that, I definitely needed to kayak! I don't know that there's enough kayaking in the world to de-stress from having a family member with bad dementia, but I did what I could. My kayak is still in the car (it's inflatable) and ready to go - I'm going to see my grandma again next weekend so I have a feeling I'll need the kayak again soon.
 
Wildmtnhoney - I love that movie, it's one of my favorites!

Cat - I've taken Ranitidine before but never in combination with PPIs so I'm keeping my fingers crossed! Sorry to hear about your grandma, I know how impossible it is to try to convince someone with dementia that they have the wrong idea if they've really settled on believing something to be true.

I've spent a fair bit of time with my happy places recently too. I've signed up for an oil painting class! I used to paint but I haven't in years, and it'll be nice to get back to it. I've also gotten one of those super dorky fitness watches that counts your steps and tracks your activity levels. I'm not a fitness buff or anything but I like being able to track my progress and it motivates me to get off my behind to reach little goals I set for myself.

Overall, except for this nasty stomach... virus, bug, temporary crazy symptoms - whatever it is, I'm doing pretty okay at the moment :)
 
I also understand the dementia problem. My mother has it (she's 88 in a couple weeks) and on mother's day when my out-of state sister called her to wish her well, my Mom told her she was lonely, nobody would visit her and she was eating a tv dinner (she can't cook anymore and has meals brought in several times a week) and nobody did a thing for her. We tried and tried to get her to let us give her a gift (she absolutely refused when I asked what she wanted. My mistake, I should have just bought one). She also refused to let us take her out to eat or to come get her to eat with us. She refused before, during or after. She's done many other similar things since, showing how "unloved" she is (she's not, of course). She is being moved to be near my sister in Indiana soon who will look after her daily (until she is moved into a facility if need be), as I don't have the health to do so anymore, and my other many multiple siblings around here are helpless.
Cat, ironically when I learned to enjoy fishing I was in Wisconsin, not too many years ago, at a friend's lake house. One of my favorite memories! We also watched bald eagles, multiple, from her dock, and that was during the summer. Maybe we were just lucky?
I'm taking my Mom to her last eye doc appt in Utah Thursday. I think I'll need to borrow your kayak...
 
P.S. I'm more confused about my multiple conditions after reading the above (including the link about spondylotic arthritis). I know I have "spondylitic osteophytic facet disease" throughout the spine as well as "generalized osteoarthritis" (arthritis in three or more major joints throughout the body, including my great toe which needs a total joint replacement at this point), but didn't know that could be related to GI problems. I'm not so educated on such things, but always understood arthritis when related to crohn's, etc., was more in the rheumatoid arthritis (because it is autoimmune) family. I know that is what my hubby who has Crohn's was told. Was I wrong? Was what Doug was told wrong?
 
Izzie, I love my fitness tracker! It came in really handy when I was in Japan. We walked so much when we were in Japan, it was fun at the end of the day to see how many steps/miles we had walked that day. We were averaging 8-10 miles and some days we had walked 12+ miles! It was crazy how much we walked on that trip. We walked through all 10,000 torii gates at Fushimi Inari in Kyoto, so we literally walked up and down a (small) mountain. My fitbit said that we walked up the equivalent of 78 flights of stairs that day! Our legs were definitely sore the next day, ha ha.

Here's a link about Fushimi Inari in case you're not familiar with it - the link is correct when it says it takes 2 hours to walk up (and it took only 30 minutes to walk down!).
https://en.wikipedia.org/wiki/Fushimi_Inari-taisha
 
Sandy, is your friend's lake house in northern Wisconsin? I think they get more eagles year-round than we do (I'm in southern/central WI). I love northern Wisconsin, it's so pretty up there with all the woods. I venture up there on day trips every so often (last year we went wayyy up north to Manitowish because I wanted to tour Little Bohemia because I'm a Dillinger nerd, ha ha). I live in Madison which is pretty far south in the state and definitely more urban than rural. When I do see eagles here, it's almost always in the winter - a popular place for eagles to overwinter here is in the Sauk Prairie area, because the water tends to be at least somewhat open on the river there all winter long so they can catch fish (that's only about 30 minutes from here).

Your mother sounds a lot like how my grandma was in between the time when my grandpa died (in May) and when we put her in a home (in June, so not a huge span of time there). She was so lonely, she'd call me and leave me sad voicemails saying, "You can call or visit anytime, I'm always here and I'm always alone, so just come over anytime." She wasn't able to cook for herself anymore either and would go out and get take-out food when she remembered to eat (she was still driving which was terrifying - fortunately she's not driving anymore now and we're buying her car from her). She's definitely trying to tell me and other family members that nobody visits her now that she's in a nursing home, but that's not true. She's had visitors at least every weekend and sometimes on weekdays too, but her dementia is so bad that she can't remember that anybody has visited. I visited her on Saturday morning and my uncle visited her Saturday afternoon (it was her birthday that day, she's 84) and by Sunday she couldn't remember either of our visits and was complaining that nobody visited her on her birthday. Ugh.

The good news is, she's doing better in a lot of regards now that she's in a nursing home. She's specifically in a memory care unit, so the staff there knows how to deal with dementia/Alzheimer's patients. She's getting regular meals every day so her nutrition has improved and she's stopped losing weight. And she's not lonely anymore, she's made a few friends in the home (although sometimes her friends are enemies, sometimes someone is mad at someone else for whatever reason). It's all kind of like high school, really. They form cliques and they all sit at the same lunch table together. :p If your mother has to go into a home, hopefully her quality of life will improve like my grandma's has. You can borrow my kayak anytime! You just have to come to WI to get it. ;) Ha ha.
 
Just have to add a quick thought: I had dairy yoghurt this weekend in an attempt to combat my stomach bug with probiotics (seems to have worked), and noticed such a quick change from when I've been dairy-free - my joints are KILLING me.

I just think it's amazing that you can go a whole life with pain and then you stop consuming a certain food and it practically stops. I've had joint pain maybe once in the past month and I've not had any dairy. I had it for three days and now I'm constantly aching. Food allergies/intolerances are no joke...
 
Wow, Izzie, that's a dramatic difference! I have trouble with dairy as well but mine's not as dramatic as that, I'll just get really nauseous and have a lot of d if I eat more than a small amount of dairy and/or forget to take a dairy digestive enzyme pill. Sounds like you may have some sort of allergy to dairy as opposed to lactose intolerance. Glad to hear that you've figured that out, though! You might benefit from doing a full elimination diet, if you've got that severe of a reaction after restarting dairy then there may be other foods that give you similar issues.

How's everybody today? I'm so-so. I am having a bit of d, nothing too horrible though. I've had maybe 3 episodes so far today but nothing watery or urgent. I was supposed to go for a lunch hour walk with my friend at work, but she cancelled on me (so for once I'm not the one who has to cancel due to my tummy troubles!). I'm just feeling sort of "meh" mentally today. I need to exercise so I'm going to do that this evening. My car is acting a little bit funny so I have to take my car in to get checked out and that's never a fun time (particularly when you're a woman who doesn't know much about cars, ugh). Today is definitely a "meh" kind of a day. My friend cancelling on me freed up some time that I can take my car in, but that's not exactly a great thing - yes, my car needs to be looked at, but it's like trading a fun thing for a not so fun thing. Meh.
 
So my doctor called again today. They seem to have assembled a team of Drs who love new strange diagnoses because now they're thinking I might have scleroderma - which sounds f***ing terrifying after googling (never google, ever). And my doctor and the language barrier meant that I was initially told that I for sure HAD it, but then when I asked for clarification no blood tests had shown anything abnormal and apparently they're only suspecting it because of my esophageal dysmotility.

And now are wanting to start me on Resolor to see if that helps generally with GI motility. *sigh*

I'm kind of freaking out but also kind of thinking they're just very clumsy to put all this conflicting information in my head and expect me to not freak out? I'm calling back tomorrow to ask for clarification from someone I can actually understand over the phone, because I don't really understand what is happening or why they think I might have this.

Don't get me wrong, I'm glad they're thorough and that they're taking me seriously and are looking to find anything that might be there to find but I also don't want to be sent on a tailspin of "things I might have that are potentially lethal and super scary" on a weekly basis over the phone :p
 
I've been feeling crampy pain off and on today that's moving around my upper abdomen. I keep thinking I'm starting my period, but nothing ever shows up. I'm on the progesterone shot due to endometrosis, and it helps that, but the bad thing is, I never know when/if my period is going to come. Anyway, I took some Tylenol because the Bentyl did not stop the pain and it seems to have helped somewhat. Thankfully, I'm off work in 20 minutes.
 
I made it to a park with a friend today. She has Lupus, so she knows all about not feeling well but "looking fine" so we were able to whine to each other and gab while the kids went off and played (hers are younger and mine are good at keeping an eye on them for us).

I came home and crashed into a nap, though. It's like I can only do so much in a day, and for today, that was IT, even on the new meds. Of course, I haven't started the Plaquenil yet (waiting until the weekend, in case it really messes with my tummy).

OH! something odd. I'm losing weight. Like, suddenly. I've been gaining weight like mad since before my belly went bad - actually, been gaining weight ever since my blood clot, in 2010. But out of the blue, just this past week, with a med change, using psyllium caps for fiber, and the slightly bloody stools (but those are *almost* gone, or maybe gone, didn't see any blood today, touch wood!) I've lost, like, 7lbs in a week. Now, that's a small %age of my total weight, but it's still really weird. I plan to mention to GI, I guess, when I check in about the bloody stools at the end of this week.

I'm also running "almost" fevers most days. I'll get all weirdly cold/shivery, and then hot, and if I think to take my temp, it's around 99-100ish, but never too high, or at least not high enough that I feel the need to do anything/call anyone. I get night sweats lately too, but it's more like the "fever" is breaking, if that makes sense.

I may head to bed early here in a bit, just to get ahead on sleep, as I feel so wiped out still from the park trip.

I wish health to all!
 
Wildmtn, are you familiar with the Spoon Theory? It sound like you ran out of spoons yesterday!
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Sudden, unintentional weight loss is definitely something to take seriously so do make sure to mention that to your GI. My GI gets concerned if I even lose 5 lbs in a month or two, so 7 lbs in a week is surely something your GI will want to look into. The fevers are concerning as well - fever usually indicates inflammation or infection. Hopefully your GI can put all the symptoms together and figure out what's going on. Keep us posted!
 
Wildmtnhoney, even low grade fevers indicate something is wrong. I hope they figure it out for sure soon, along with the weight loss, and it is actually nothing serious, but like Cat said, the sudden weight loss is a red flag when it comes to GI matters. When I got gastritis and esophagitis, I lost somewhere between 30-40 lbs in just a few weeks. I was miserable.
Sorry to go backwards in conversation, but yes, Cat, we were in northern WI when we saw the eagles. After looking at a map and remembering the shape of the lake (reservoir) and knowing I bought a t-shirt in Spooner, I believe it was Trego Lake we were at. I have a very poor memory for names post-stroke. I also, in spite of the fact that everyone I know can way outdo me, like to keep track of my steps per day. Just after my stroke I was lucky to be able to walk two house lengths. I can now walk about 1000 steps per day (have to push myself to do that), but if I do much more it is an automatic migraine. My doctor's suggestion for that was to add just five minutes per week. A good, practical suggestion for me and really a no-brainer. (Duh!)
I used to hike a lot myself and have had to really change my lifestyle. As a teen, I even paddled across the Mississippi River in a kayak under parents supervision (way before kayaks were popular). Granted, it wasn't at one of the widest spots, but it was still a huge accomplishment.
Must go hike to the basement to do some overdue laundry. ~sigh~
 
I'm also running "almost" fevers most days. I'll get all weirdly cold/shivery, and then hot, and if I think to take my temp, it's around 99-100ish, but never too high, or at least not high enough that I feel the need to do anything/call anyone. I get night sweats lately too, but it's more like the "fever" is breaking, if that makes sense.

I can commiserate because I've been getting the same problems for the past few days. I felt yucky this weekend, so I took my temperature. My normal range is 97.2-97.9 (for some reason, it's always been lower than 98.6). When I took it, it was up to 98.3, which is like 99.3 for me. I kept taking it at various intervals throughout the day and it was increasing - going as high as 98.7 (which is equal to 99.7). I wasn't active that day at all, so I didn't know why it was higher than normal. I took some Tylenol and it went back down to 97.6 and I felt better. The same time my temperature was high, my outer hip area was sore, too.

Anyway, I like to sleep with a light blanket instead of a sheet because I like the weight, but I've been kicking it off at night and during naps because I start getting sweaty. I've been doing this for several years - even during the summer - and I've never had a problem before. I also have a pedestal fan on when I sleep, so I don't overheat. Something has definitely changed.
 
I've come down with some kind of flu or nasty cold. My body will not give me a break :p Took like 10+ tubes of blood today for the rheumatologist. Not sure if they will be valid now that I'm apparently sick, but I'll have to let them know.

Will be about a week until I get the results of these tests, maybe longer until I get an actual answer as to whether or not I should be concerned about anything. Psychologically taxing, to be sure, but I'm cozying up with Netflix and dealing with my sniffles. Hopefully whatever they find, if anything, it'll be something minor and fixable...
 
- I'm a dork. I started Adderall Saturday. It's a stimulant, even though I'm using it to keep my blood pressure in check (stop it from going too low) -- so it can cause.....weight loss!! Duh! I'm not sure how MUCH or how FAST (although I've been searching the web, there are a lot of conflicting answers, and I started with a tiny dose and worked up to what some people consider a "starting" dose today) so I don't know if that fully explains everything, but it may be contributing. Only problem is I can't just STOP taking the Adderall to see if the weight loss stops. I sort of need my blood pressures to be right. The good news is nearly all the sites (even the creepy ones, that were scary people telling you how to *abuse* the med to lose weight!) said that this effect wears off, and it's not anything to do with your metabolism, it's just that it's appetite suppressing and if you don't pay attention, you'll eat less (yeah, haven't felt well, haven't paid attention). So now I'm going to pay attention and track my food so that I know I'm eating enough, and then I'll have a better idea, I hope, of what is going on.

In other news...I think I borrowed some of today's spoons yesterday - I am STILL tired! The goal is to get some laundry moved around, work on my volunteer project, and that is it.
 
- I'm a dork. I started Adderall Saturday. It's a stimulant, even though I'm using it to keep my blood pressure in check (stop it from going too low) -- so it can cause.....weight loss!! Duh! I'm not sure how MUCH or how FAST (although I've been searching the web, there are a lot of conflicting answers, and I started with a tiny dose and worked up to what some people consider a "starting" dose today) so I don't know if that fully explains everything, but it may be contributing. Only problem is I can't just STOP taking the Adderall to see if the weight loss stops. I sort of need my blood pressures to be right. The good news is nearly all the sites (even the creepy ones, that were scary people telling you how to *abuse* the med to lose weight!) said that this effect wears off, and it's not anything to do with your metabolism, it's just that it's appetite suppressing and if you don't pay attention, you'll eat less (yeah, haven't felt well, haven't paid attention). So now I'm going to pay attention and track my food so that I know I'm eating enough, and then I'll have a better idea, I hope, of what is going on.

In other news...I think I borrowed some of today's spoons yesterday - I am STILL tired! The goal is to get some laundry moved around, work on my volunteer project, and that is it.

I took Adderall for Adult ADD for a few weeks and remember losing my appetite, so that may be why you're losing weight. I hated that stuff, though, because I didn't like the way my heart felt like it was racing. It's surprising that even taking a stimulant can make you feel fatigued. You would think it would be the other way around. I would still ask the doctor about the Adderall, though. You don't want to drop weight too fast as it can cause gallstones (if you still have your gallbladder).
 
Aww, Izzie, you poor thing! It's just one bug after another, that sucks. I hope you recover quickly, you deserve to feel reasonably well already!

MissLeopard, my usual body temp is also in the mid-97 range, and like you said if I get up to 98.6 then I feel feverish. If you haven't already told your doctor about the fevers and night sweats, definitely do let them know. For me, night sweats are a sure sign that I'm having a flare-up.

Sandy, yep, Spooner is way up north! That's probably at least 4-5 hours north of where I live (I've only been up that way a few times, I think I've driven past Spooner on my way to Duluth for a wedding but I don't know that I've actually gone to Spooner itself). I know it was a 4 hour drive almost exactly when we went up to Manitowish last year.

That's really cool about paddling across the Mississippi river! That's a bucket list item for sure! I mostly paddle in very calm streams or the occasional small lake - I don't do well with waves or currents. :p The Mississippi river sounds extremely daunting, I'm very impressed that you were able to achieve that. :)

As for me, I haven't been able to exercise like I want to. I screwed up my back, I think I strained a muscle in my lower back when I was kayaking on Sunday, and then Monday night it felt like I slept on it all wrong and that made it feel worse. It's been very unhappy with me since then. I tried doing some gentle stretching and using my foam roller on it yesterday. I can't even tell if that helped or not - I think maybe a little, but my back is still unhappy. Ugh. Well, to put a positive spin on it, we're supposed to get thunderstorms this evening, so my plans are very similar to Izzie's - to curl up on the couch with my heating pad on my back and watch Netflix. I might also take a warm bath.
 
Aww, Izzie, you poor thing! It's just one bug after another, that sucks. I hope you recover quickly, you deserve to feel reasonably well already!

MissLeopard, my usual body temp is also in the mid-97 range, and like you said if I get up to 98.6 then I feel feverish. If you haven't already told your doctor about the fevers and night sweats, definitely do let them know. For me, night sweats are a sure sign that I'm having a flare-up.

Sandy, yep, Spooner is way up north! That's probably at least 4-5 hours north of where I live (I've only been up that way a few times, I think I've driven past Spooner on my way to Duluth for a wedding but I don't know that I've actually gone to Spooner itself). I know it was a 4 hour drive almost exactly when we went up to Manitowish last year.

That's really cool about paddling across the Mississippi river! That's a bucket list item for sure! I mostly paddle in very calm streams or the occasional small lake - I don't do well with waves or currents. :p The Mississippi river sounds extremely daunting, I'm very impressed that you were able to achieve that. :)

As for me, I haven't been able to exercise like I want to. I screwed up my back, I think I strained a muscle in my lower back when I was kayaking on Sunday, and then Monday night it felt like I slept on it all wrong and that made it feel worse. It's been very unhappy with me since then. I tried doing some gentle stretching and using my foam roller on it yesterday. I can't even tell if that helped or not - I think maybe a little, but my back is still unhappy. Ugh. Well, to put a positive spin on it, we're supposed to get thunderstorms this evening, so my plans are very similar to Izzie's - to curl up on the couch with my heating pad on my back and watch Netflix. I might also take a warm bath.

I'm sorry to hear you're not feeling good. Hope you feel better soon.

Thanks for telling me about the flare possibility. I will be sure to mention it to my GI when I have my follow-up with him after the colonoscopy.

I was kind of irritated about something my mom said to me last night, but I handled it well. She was the first one to suggest that my symptoms might be indicative of Crohn's disease right after I had my breath test done. Last night, I was talking about not wanting to use up my vacation time just in case the colonoscopy shows something and I have to get treatment or something. She said, "Oh, I don't think it will show anything..." I was in shock, but I held it together. I am almost 33 years old but she has a tendency to treat me like I'm a hypochondriac. I KNOW how I am feeling and something is not right. I would not be spending all this money on all these tests and taking time off work if something was not going on. I love my job too much to do that.

Anyway, I was proud of myself because I didn't lose my temper and I said in a levelheaded tone, "There is something going on, though, because my symptoms are getting progressively worse and I've never felt this way before." I actually sounded like an adult. I have a tendency to lose my temper if I feel like someone doesn't take me seriously, but I'm trying to change that behavior by taking a deep breath before I respond. I also did not argue. I stated my point and then I walked away like an adult. Fortunately, she did not try to argue with me. This is something that I wish would change between us - that she wouldn't contradict everything I say (and what she said in the beginning). I know I cannot change her behavior - I can only change mine and hope that she will soon understand. :)
 
Hey guys hope you're all feeling good today :)
I posted a few months ago but gave up on ever getting a diagnosis after seeing a particularly unhelpful gastro. However after seeing a new GP for something else she was shocked that it was being passed off as IBS and I wasn't being offered treatment (as she said you don't lose weight and have bleeding with IBS). This led to me finally getting a diagnosis: Behçet's disease.
I first went to the doctors with constant diarrhea, weight loss, bleeding, abdominal pain etc. My ESR was raised so I was sent to a gastro who ordered a small bowel MRI and sigmoidoscopy which came back negative for Crohn's. So I got the normal "it's just IBS" lecture and got told to take immodium (like I hadn't tried that already). To cut a long story short I went between my GP and gastro clinic a few more times and kept getting told it was "just IBS" and basically to stop complaining.
My ESR is constantly raised (and has been for a couple of years now) but this was ignored along with the joint pain, mouth ulcers, fatigue and skin problems. Then I got something no one could put down to IBS: genital ulcers. I mean it wasn't exactly a nice surprise but it got me a diagnosis. I'd had mouth ulcers since I was a kid and didn't realise it wasn't normal to have 2 or 3 a month but when I was having 10-15 in less than a month I thought it was odd. My GP took one look at me and asked if I'd heard of Behçet's (which I had thanks to this forum). I'm lucky to live in the England as we have 3 national centres of excellence for Behçet's and I live 30 mins away from one. I saw a rheumatologist, ophthalmologist and oral specialist all in one morning and got a diagnosis the same day. I have a diagnosis of Behçet's disease and "possible Behçet's related colitis" (they're getting a gastroenterologist to see me in the clinic in the next couple of weeks to decide). Blood tests showed I'm deficient in vitamin B12, D, folate and ferritin but the gastros never thought to look.

Behçet's disease (or syndrome) is a rare auto-inflammatory condition that causes inflammation in blood vessels and tissues. Symptoms depends on where the inflammation is but commonly include mouth and/or genital ulcers, eye problems, skin problems and many others (including the gut). I just wanted to post in case this helps anyone else as I'm sure there's someone else on here with undiagnosed Behçet's. I looked at my blood test results from my GP the other day and next to my ESR it said something that pretty much sums me up "abnormal, but expected".:ysmile:
 
Alice, congrats and condolences on the diagnosis! There was a girl who was active on the forum a few years ago who also got diagnosed with Behcet's, so I know a little bit about it - it is very rare, from my understanding, and sometimes very difficult to diagnose. What treatments are they putting you on?

MissLeopard, I can definitely relate to your mother's weirdness. My mother is still weird about my illness nearly 7 years later (I've been ill since about October 2009). My mother doesn't think I'm faking my illness, though, she's sort of taken the opposite track and made up an illness of her own. When I first got sick, I mentioned to my mom that the doctor thought it could be something like Crohn's or celiac. Well, then my mom was talking with some distant cousin or something like that, and the cousin apparently has celiac, so the cousin convinced my mom that it's in our family tree and that therefore I must have it. My mom then took the mental leap that if I have celiac, that she must have given it to me, so she must have it too (mind you, she never had any symptoms). So she freaked out and stopped eating gluten and convinced several other family members to do the same. Fast forward a bit and multiple tests (including several upper endoscopies w/ biopsy, which is considered the gold standard for diagnosing celiac) have proven that I definitely, 100% do NOT have celiac (and gluten was never a trigger food for me anyway). The real weirdness is that my mom is still convinced that she has celiac. She seems to like telling people she has a disease (no doctor has diagnosed her, she's self-diagnosed and incorrectly so in my opinion) and she makes a big deal out of going to restaurants and telling the waiter that she can't have gluten. It's seriously weird. And slightly infuriating, too. It's just really upsetting when the person who is supposed to be your biggest support ends up failing you miserably. So yeah, I get it! That's a big part of why the forum is here, because a lot of us don't have a lot of support in real life. We support each other because a lot of our families sure don't.
 
Oh-my-goodness! I'm rolling on the floor laughing, not at the pain of not having support from loved ones (especially mothers, who are supposedly primary nurturers), but because of the similarities of mothers. My mother didn't believe I had anything wrong at first (including my eeg documented seizures and CT documented stroke). Well, now she doesn't remember most of the time. But a few years ago when she didn't believe my health problems, including the seizures that I was having a hard time getting under control at the time and she had witnessed a grand mal at one point, she decided that she had seizures caused by lupus because of family history of seizures (me) and lupus (sister). (Huh? She thought my seizures were psychosomatic.) She found out that sometimes (rarely) lupus can cause seizures. My sister had lupus but died from breast cancer, but never had seizures. I asked why she thought she had that and she said sometimes when walking on uneven ground she felt a little dizzy. 😂😂😂 She was actually convinced for awhile she had it and couldn't be convinced otherwise for quite some time! Obviously, her thinking was beginning to deteriorate then ...
 
Omg I'm so glad it's not just me with a weird parent. My mom actually believed me from the start and pushed all the doctors to take me seriously. My dad on the other hand to this day insists I try a gluten free diet (despite me having a Behcet's diagnosis and testing negative for coeliac SEVEN times). He thinks the entire thing is in my head and I'm either doing it for attention or I have mental health problems. I think it's times like that these groups are so important so you know that other people believe you and are in the same situation.
Thanks Cat-a-Tonic it's a weird sense of relief to be diagnosed finally and I actually thanked the rheumatologist. I saw her posts a while ago which is the only reason I'd heard of it before so I should thank her. It effects less than 1000 people in the UK but me being part Greek (with a Turkish grandmother) made it a lot more likely. I reckon it's under diagnosed because the symptoms are so vague and the gut symptoms are often misdiagnosed as IBS or IBD apparently. I'm on supplements for the vitamin deficiencies but so far the only change is my B12 dropped even lower so any advice would be much appreciated :) I have steroid asthma inhalers for the ulcers (weird but works) and various toothpastes and mouthwashes. I have to wait to see the gastroenterologist at the clinic before any decision can be made on systemic treatments :(
 
Thanks everyone. She's been supportive in that she drove me to the surgery center to have the endoscopy and she's driving me again next week when I have the colonoscopy, but I get the impression that she thinks that I'm overreacting since all the tests up to this point have been normal. My GI would not be ordering these tests and I definitely would not be agreeing to them and putting myself deeper into debt by having them done if I didn't think it was abnormal. I'm already at about $1,500 in tests that I haven't paid for yet (and that's with insurance). Anyway, I don't want to say that I hope I have IBD because I know it can be a real pain to deal with, but I want answers as to why I feel so crummy. I want to get back to normal. Dealing with IBS is one thing, but these symptoms are so much different than what I've dealt with before regarding Celiac disease and IBS.
 
I hear you about parents. My mom is super supportive, very practically helpful and does believe me - though sometimes gets outlandish ideas (like the time she was convinced I had candida because she read about it it in some trashy magazine) - she is NOT the best person to have around in a crisis.
She tends to freak out more than I do, and even when she tries to be supportive it sometimes comes across as... kind but depressing statements that make me freak out more than I would have had she just kept quiet :p I never bring her when I'm having actual procedures or anything she would not contribute to my calm at all haha.
 
It is interesting comparing our family "support systems." I'm glad you're all there, too (but sorry we all are dealing with major health issues):ghug:
 
Alice, the other girl with Behcet's isn't active on the forum anymore (she hasn't logged in to the forum in a couple years), but I still keep in touch with her on facebook and I can let her know that she helped someone get a diagnosis. :) I'm sure she'll be happy to hear that she was able to help.

As for your B12 dropping lower, are you just taking oral B12 tablets? If so, they can put you on B12 injections which should help. Sometimes the tablets aren't absorbed well - B12 is absorbed primarily in the terminal ileum (the last part of the small intestine before it meets the colon), so if you have any sort of inflammation or scar tissue in that area, then it's much more difficult for your body to absorb B12. The injections should go right into your bloodstream though which of course bypasses your digestive tract, so you should feel a lot better if you can have some of those injections. Definitely talk to your doctor about it.

MissLeopard, as far as racking up medical debt - I've been there, done that as well (I currently have about $1,300 in doctor bills). First of all, set up a payment plan. I pay $100 per month on my doctor bills. As long as you pay on time every month, there's no interest. Also, see if you can apply for financial aid through your hospital. The first year I was sick, I racked up about $6,000 in medical debt. I applied for financial aid even though I didn't meet the criteria (it said I had to be something like 500% below the poverty line - nope - and that my medical debt had to be more than half of my yearly income - also nope). I applied in spite of not meeting the criteria, and to my surprise I got approved! They wiped out my medical debt and I suddenly had a $0 balance due, it was awesome. So do apply for financial aid even if you don't think you qualify for it, you might be surprised and get your debt wiped out as well. But at the very least, set up a payment plan first and foremost.

Aw, I'm sad to hear that everyone has similar family craziness. I should say that not all of my family is like that. My mom made up having celiac, and my brother is crazy in his own special way - he's listened to a lot of self-help tapes, and I think he misinterpreted them. He told me that as long as I have "autonomy and mastery" over my digestive tract, then I can will myself to not be sick anymore. Um, no, chronic illness doesn't actually work that way. You can't wish/think/pray it away, no matter how many fancy buzzwords you use. So yeah, that's my mom and brother, not exactly supportive. My dad is supportive, although clueless. When I mention tests I've had or meds I'm trying, I can see just total confusion on his face. Anything to do with medical stuff or medical terminology, it just goes over his head, he doesn't understand any of it. But as long as I keep it simple and avoid talking about medical stuff specifically, he is genuinely interested in how I'm doing and does actually care without pushing any agenda on me (unlike my mother with her anti-gluten agenda or my brother with his autonomy and mastery). So yeah, he's dumb but he at least cares. :p I guess that's all I can ask for.
 
MissLeopard, as far as racking up medical debt - I've been there, done that as well (I currently have about $1,300 in doctor bills). First of all, set up a payment plan. I pay $100 per month on my doctor bills. As long as you pay on time every month, there's no interest. Also, see if you can apply for financial aid through your hospital. The first year I was sick, I racked up about $6,000 in medical debt. I applied for financial aid even though I didn't meet the criteria (it said I had to be something like 500% below the poverty line - nope - and that my medical debt had to be more than half of my yearly income - also nope). I applied in spite of not meeting the criteria, and to my surprise I got approved! They wiped out my medical debt and I suddenly had a $0 balance due, it was awesome. So do apply for financial aid even if you don't think you qualify for it, you might be surprised and get your debt wiped out as well. But at the very least, set up a payment plan first and foremost.

I've had to put moving out on my own on hold since I am racking up so much debt. My mom said the same thing about paying the debt off a little at a time. It just really bothers me to have any kind of debt. I've got a credit card to pay off too since I used it to get new tires on my car (an emergency expense - LONG story). I haven't had to be in the hospital at all my whole life (thankfully), so I don't have any debt from them. I only have doctor bills and bills from the surgery center (they made a payment plan with me where I paid half the day of my procedure and then they break up the rest and bill me in increments). It surprised me to see that the most expensive thing from that procedure was the bill from the nurse anesthetist! If I didn't have health insurance, his fee would have been $4,200 for 5 minutes (I hadn't paid off my deductible yet). Fortunately, I only owe $316.34.
 
lsgs!! I was just thinking about you recently and wondering how you were doing, thanks for checking in! And that's awesome that you're lifting weights and loving it, I'm really happy to hear that. I won't ramble on any more than I did yesterday, but obviously I love lifting weights too. :) (I injured my finger pretty badly and it's still somewhat swollen & painful, so I haven't been able to lift for a couple weeks and I've been daydreaming about doing squats, ha ha!) How's everything else going with you? I know you had some really scary times with your health so I'm hoping that things are much calmer now.

Here's the update on me - I don't even remember when we last chatted, but for like a year I had recurrent nasty internal hemorrhoids that were bleeding like crazy. My iron dropped super low and I had to have iron infusions. I went to Japan in the midst of all that and had an amazing time - I kinda sorta want to move there now (that's just a daydream too though). The food all sat really well with me, the people were wonderful, everything there is beautiful and picturesque, I walked around a ton which was really beneficial to my guts. It was an amazing time and I felt really well the whole time I was there. And, I only had like 2 minor bleeding hemorrhoid episodes since coming home from Japan, and I haven't bled in over 2 months now (knock on wood!) so possibly that debacle might be finally over with. I think I'm in remission although I'm having the odd bad tummy day here and there - for some reason my bad days all seem to fall on Thursdays lately. :p Oh well, at least that way I can plan for them! Other than that and the finger injury, I'm doing pretty well! I hope you're doing well too.

Nice to speak to you again!

You're not going to believe this but my husband and I are going to Japan in March! We are stopping off at South Korea first. I have always wanted to go to Japan it's a lifelong dream for me. I absolutely can't wait. You need to tell me all about it! Was the language barrier ok? Was the food good? I'm paranoid about getting sick! Grateful for any hints and tips!

I totally get what you mean - when I can't lift now I get so annoyed. It's honestly the best thing I could have done for my health. It's hard at times when you don't feel great but overall it's helped me so much, really helps when you start to feel down. I even enjoy cycling more.

That sounds awful what happened to you! Do doctors still not have a definitive diagnosis for you? I guess like me, without a firm reason for your gut problems, we need to eventually give up on that and concentrate on finding peace with it all - that's where I'm at.

I can't remember when I last posted here. Doctors had told me I had lymphoma. They were wrong. I had a couple of endoscopic needle biopsies (awful, awful, awful!!) and they still weren't sure. I finally got my gallbladder out and got rid of that pain, at the same time they took a lymph node out (the large one was too dangerous to operate on, very close to my back!) so that was reactive and they left it there. They also took a liver biopsy at the same time and it showed granulation - either PBC (primary biliary cholangitis) or sarcoidosis. Some of my sarcoidosis results were positive but not enough to diagnose. They have gone with PBC diagnosis. Doctor shoved a presciption in my hand and said 'take these and you will increase your life expectancy'. I haven't seen a consultant since!

I ended up after a pretty horrible year completely fed up with medicine/doctors/hospitals. I don't know why but I haven't been taking any medication except nausea pills which I need every day. I feel like there's a mental block there. I went through a pretty rough patch as I got chemical (bile reflux) gastritis pretty much immediately after my operation and it hasn't let up at all. There is nothing they can do. It is so incredibly painful and wakes me up several times a night. I hadn't slept in a year and ended up getting really, really depressed. So I now have to take sleeping tablets to prevent me waking up in pain. It's messy! I get so annoyed I know that steroids work but now my rheumatologist has retired no one will prescribe them for me.

Anyway, that's us fully up to speed. Life kinda sucks but I'm trying my best to get on with things. Next big thing is to decide whether to have kids and whether I would be physically able to look after them.
 
lsgs, prepare for a long post - I will tell you all about Japan! Long story short, it was wonderful and I had an amazing time. Also, I'm super jealous that you're going to South Korea! I can read Korean (it has an alphabet) and I can speak it a little bit. Annyeong haseyo means hello. :) You must tell me all about Korea when you get back because that's the next place that I'd love to travel to!

Okay, so as far as Japan - when in March are you going? Late March/early April is sakura (cherry blossom) season, and that's when I went. We left the US on March 30 (didn't get to Japan local time until March 31, we lost a full 24 hours with the flight and the time change) and got back on April 20 (somehow gained 3 hours coming back, we left at noon Tokyo time on April 20 and arrived in Chicago at about 9 AM on April 20!). So we were there for the first 3 weeks or so of April, and that was an ideal time to go. Everything was blooming - we literally were there from the beginning through the end of sakura season, we saw them go from buds to full bloom to what my friend said is called "flower snow", where the sakura petals snow down on you (that was extremely beautiful).

It was a bit difficult to pack for a trip that was not only 3 weeks long, but with unpredictable weather that time of year. It was anywhere from the 40s F to the 70s, so it could be quite chilly or it could be t-shirt weather, and some days it was sunny and others it poured rain all day. I ended up packing about a week's worth of a variety of clothes and wore layers when it was colder. A warm but lightweight rain-proof jacket will be your best friend in Japan in the spring. I also had brought a warm hat and scarf and gloves, which I wore for the first half or so of the trip. After that, the weather had warmed to the point that I no longer needed that stuff, so I tossed them. I actually ended up tossing a fair bit of clothes and other items from my luggage so that I could make room for all the souvenirs I bought (I literally bought 4 vintage kimonos and they're all so beautiful, I love them, but they definitely took up a lot of luggage room!). If you're going there for longer than a week, plan on doing laundry. The Japanese phrase for a laundromat is literally a Japanicized version of the English phrase "coin laundry" - they pronounce it "coin ran-do-ri". I found laundromats to be easily found, I think there was one in every hotel we stayed in and we traveled around quite a lot.

That leads me to my next question, where exactly in Japan are you going? We traveled all over, as I said. I went with my mom, she asked me to accompany her and of course I said yes. So it was a mother-daughter trip, just the two of us, and that was actually really fun. The purpose of the trip was, she runs marathons, and she had already completed one marathon in each of the 50 US states, so she then was working on the goal of completing at least one marathon on each continent, and Asia was her final continent. She actually ran two marathons in Japan, one at the beginning of our trip and one at the end. So we started off in Chiba New Town (where her first marathon was - CNT is not far from Narita airport, it's maybe an hour from Tokyo). That was a really cute little town, we spent a few days there with one side trip for part of a day to Tsukuba.

Then we spent 5 days in Tokyo, specifically in the Suidobashi neighborhood (where the Tokyo Dome is). Tokyo was amazing, my favorite by far. There is SO MUCH to do and to see in Tokyo, I think if I had 5 years to explore it I still couldn't see or do nearly everything that the city offers. We tried to do most of the big stuff, though. Meiji shrine (gorgeous with lots of woods/nature walking paths), Ueno Park and Ueno Zoo (the park has tons of sakura and the zoo has pandas), the scramble crossing and Hachiko statue in Shibuya (don't go during rush hour, it's chock full of people even at off-peak times but I heard from a friend that it's literally pandemonium at rush hour). We explored Akihabara - that's an exercise in overwhelming your senses! :p We also took a day trip on a tour bus to Mt. Fuji, that was fun - we wouldn't have seen Fuji-san (that's what they call it, they address Mt. Fuji as though it's a person) otherwise as we didn't rent a car, we relied on trains and the occasional taxi and a lot of walking to get ourselves around.

After Tokyo, we went to Nara for a couple days. I wasn't super fond of Nara, there are a LOT of temples there and some deer which are sacred (but will head-butt you if you have snacks on you). After Nara we went to Kyoto, which was a close second favorite place after Tokyo. The bamboo forest and walking through the 10,000 torii gates at Fushimi-Inari were incredible, so gorgeous. Get to the bamboo forest early because it quickly fills up with tons of tourists.

I don't want the forum to eat this long post so I'm going to post this and continue on a second post about Japan! :)
 
Okay, Japan post part 2 - so after 4 days in Kyoto, we went to the area of Abiko/Tsuchiura for my mom's 2nd marathon. That area was meh. Not a lot to do, it was a pretty sleepy area and rather disappointing after the excitement of Tokyo & Kyoto. We only spent a couple days there though. After that, we went back to Tokyo and spent 2 days in the Maihama area. Maihama is a VERY touristy area, it's where Tokyo Disneyland is, and Disneyland was the only reason we were in Maihama. We wanted to spend our last full day in Japan going to Tokyo Disneyland. :p So we did that, and it was actually a lot of fun.

Hey, while I'm thinking of it - if you want to friend me on facebook, I have like 900 photos of Japan on my facebook. Send me a PM. I'm at work right now and can't get to my facebook from this computer, so I can't send you the link to mine, but I can either do that tonight when I get home or if you send me the link to your facebook then I can friend you. :) (If you want to - no pressure. I understand that some people only like to friend people that they know "in real life".)

So, the food. Honestly, it all sat really well with me - my belly didn't give me trouble whatsoever, it loved all the food! I already knew that a lot of Japanese foods are safe for me - I can do rice, fish, seaweed, noodles, etc with no trouble. My mother is actually the one who had issues. She's gluten-free by choice and she's also soy-free which REALLY limited her in Japan. It also turns out that she has a legit allergy to raw fish - the few times she tried eating sashimi, her legs swelled up and broke out in a scary rash. So for her, there were very few food options. It turns out that gluten is added to basically everything in Japan - even rice balls apparently have gluten in them, and of course soy sauce has gluten and that's in so many foods there as well.

We found that one of the few things she could eat was cooked shrimp sushi. It's cooked and doesn't contain soy sauce nor gluten - it's just basically rice and cooked shrimp. Some sushi places even had this yummy version of it that was called "ebi avocado" (ebi means shrimp) - it was shrimp sushi with avocado and mayonnaise on top. It was actually really delicious, I ended up eating a lot of that myself. We found that the easiest sushi places to go to were conveyor belt sushi restaurants - you can see the sushi go past you and you can pick which ones you want, and just pay by the plate (it wasn't too pricey, either, usually between 100 and 350 yen per plate which is roughly $1 to $3.50 US). So as a result of my mom's dietary needs, we ended up going to a LOT of conveyor belt sushi restaurants. I'm not complaining about that, I love sushi! It was delicious!

So yeah, long story short - if you can eat gluten, the food should be okay. There are some "western" style restaurants as well, in fact we saw tons of McDonalds there and several pizza places, etc. We didn't eat at any of those places although we did like going into McDonalds to use their bathroom, ha ha. :p

Which leads me to, the toilet situation. First of all, memorize this phrase: "Toire wa doko desu ka?" That means, where is the bathroom? Or if you can't remember that, just remember that toire means toilet. (If someone tries giving you complicated directions, hidari means left and migi means right!) Most of the toilets are wonderful. In our hotel rooms, the toilets had heated seats and heated bidets with a variety of settings - seriously wonderful! Now I am bugging my hubby to get us a heated seat for our toilet at home. The vast majority of public toilets in Japan have those features, and many also have a feature where it plays the sound of running water to cover up any "gross" sounds you might make while in the bathroom (we totally need that here in the US!).

But, then, there are the squat toilets. And they are horrible. Literally it's a hole in the ground, and you squat over the hole and do your bathroom business. No matter how low you squat, us ladies can't exactly aim our urine streams, so you are guaranteed to pee on the floor as well as maybe your shoes (yes, I peed on my own shoes at one point, so icky). You'll also be standing in strangers' pee while you're squatting and trying not to pee on your own shoes. Throw joint pain into the mix and it's really not a fun time! I had to use squat toilets maybe 5 or 6 times during the 3 weeks I was in Japan, so fortunately they can mostly be avoided, but there are still times when you really gotta go and only a squatter is available. So be prepared.

Oh! I should also mention, bring your own soap or hand sanitizer - I got myself some paper soap which was a lifesaver. Weirdly, for as clean a country as Japan is (there's like no litter anywhere), it's very rare to find actual soap in a public bathroom. In private bathrooms like in hotel rooms there's soap, but if you have to use the bathroom in a train station or whatever, you can count on there not being soap (and occasionally no toilet paper either so bring kleenex or wipes with you too!!).

Let's see, what am I forgetting to mention? I'm sure I'll think of like 10 more things later on but that's the bulk of it for now. It was a really fun trip. Be prepared to walk a lot and take a lot of trains. The train system there is pretty confusing so ask someone in the train station if you don't know for sure which platform to go to or which train to get on (keep in mind that some trains are local and some are express - the very first day we accidentally got on an express and went way farther than we intended to and had to turn around and go back). Fortunately, most people in Japan speak at least some English, and many people there speak very good English. I didn't find much issue at all with the language barrier (I do not speak Japanese). Everyone there was very friendly and helpful to us. Being polite is the main thing, Japan is a very polite place. Always say "arigato gozaimasu" (thank you) and bowing is also polite. (Some of the Nara deer have learned how to bow to tourists to ask for deer cookies, I found a deer who very politely bowed to me and I gave him like 10 cookies, ha ha.) Learn a few useful phrases in Japanese - like how to ask where the train station is, how to hail a taxi ("takushi!"), hello (konnichiwa), etc. Oh, and be prepared for some fairly brutal jet lag both on the way there and the way back. Don't plan anything big for your first full day there, just rest and get yourself acclimated, stay hydrated, etc.

You're going to have a great time! I'm so jealous, I already want to go back. It was for sure the trip of a lifetime. You have to let me know how your trip goes (and the Korea part too! That's going to be daebak - awesome!).
 
Okay. Back on subject. Yes, I'm still technically undiagnosed. Unoffocially, my GI and GP both feel that it must be some form of IBD, but it's been stubborn about showing itself. They're happy to put me on steroids when needed, and I take Lialda for maintenance. I saw a colorectal surgeon who thought that I might have some type of proctitis related to the IBD because of my recurrent bleeding hemorrhoid issues (which fortunately seem to have stopped for the time being - knock on wood). I've more or less come to peace with it as well - being in remission helps, of course. If I were flaring I'm sure it'd be a different story, but now that the bleeding/hemorrhoids issue seems to have stopped I'm doing pretty well for the most part. I still have bad days, but I haven't had a proper flare in quite awhile (again, knock on wood!). A few minor issues have kept me out of the gym lately (I badly injured my finger on a hedge trimmer a few weeks ago although it's finally healing and scarring over) but I'm looking forward to getting back to lifting weights again really soon. :)

Wow, gastritis for a full year and counting?? I turn into a blubbering baby when I have a gastritis attack that lasts a couple days, I couldn't imagine the pain of dealing with it for that long! That's horrible and I'm so sorry to hear it. I'm glad that you're able to sleep now thanks to the meds, but it still sounds really horrible.

Honestly, you sound a lot like my aunt. She's had symptoms for as long as she can remember but only was diagnosed with Crohn's recently (a few years ago, and she's in her 50s now). She totally got soured on Western medicine and sort of shunned it in favor of more holistic or Eastern style treatments. She does a lot of yoga and takes herbs, probiotics, etc. Although I will say, she takes pred when she needs to, that's the one Western treatment she hasn't shunned.

As for having kids, it's a personal decision that we all have to make. I am not a fan of babies, and pregnancy sounds awful, and I don't really want to pass on these crummy genetics that I got dealt, so for me it was a pretty easy decision not to have kids (the sticking point is that my husband does want kids, but I think he's come to accept and understand that it's just not happening for me). Hubby's sister has 5 kids, so I have little nieces & nephews to dote on whenever I'm feeling motherly (which isn't often).
 
Hearing you all talk about medical debt I am so glad I live in a country where that isn't an issue. You pay up to a certain amount each year, and if your medical expenses (for tests, procedures, regular visits to the doc etc.) go above it (I think it's about the equivalent of 150 US dollars) - you don't pay anything. So being sick honestly hasn't affected my financial situation much at all. I pay for my meds, though, but they're not that expensive.

I am sort of losing my mind waiting for test results, to be honest. Even if it's unlikely that I have any of the scary things they're looking for (Aside from my esophageal dysmotility I had none of the symptoms they asked about), it's still scary to even know it's a possibility.

Ironically, my cold is giving me something else to focus on, as well as napping away my days.
 
Izzie, can I move there? OMG, only $150 per year out of pocket for medical expenses! Here, without insurance, it'd be more than $150 just for one clinic appointment. I have insurance, with a deductible of $1000. That means I need to pay $1000 out of pocket for medical care before my insurance pays anything. Then they pay 80% and I pay 20%, but sometimes they randomly decide that certain things aren't covered so sometimes I still pay more than the 20%. It can get pricey really quick even with insurance. And without insurance, forget it, you can't get sick or injured or you're going to go bankrupt. Fortunately though most employers offer insurance (although I still have to pay a portion of my paycheck towards that).

I have found that I'm stuck in an endless loop. I have to work so that I have insurance so that I can see a doctor and get my meds and be reasonably well, so that I can work, so that I can have insurance, so that I can be well, so that I can work...
 
Izzie, can I move there? OMG, only $150 per year out of pocket for medical expenses! Here, without insurance, it'd be more than $150 just for one clinic appointment. I have insurance, with a deductible of $1000. That means I need to pay $1000 out of pocket for medical care before my insurance pays anything. Then they pay 80% and I pay 20%, but sometimes they randomly decide that certain things aren't covered so sometimes I still pay more than the 20%. It can get pricey really quick even with insurance. And without insurance, forget it, you can't get sick or injured or you're going to go bankrupt. Fortunately though most employers offer insurance (although I still have to pay a portion of my paycheck towards that).

I have found that I'm stuck in an endless loop. I have to work so that I have insurance so that I can see a doctor and get my meds and be reasonably well, so that I can work, so that I can have insurance, so that I can be well, so that I can work...

That sounds so exhausting, Cat! Here, you don't have to be employed to have medical insurance, it's universal coverage, you don't even have to apply for it - you just have it. I know some people here complain that yes, it's more or less free to go to the doctor, but on the other hand you have very little say in which doctor you see so if you happen to see a bad one... it can get pretty tricky to get a second opinion. I wasn't able to see a different doctor until I just up and moved to a different city. Still though, I'll take it over possible bankruptcy for being sick...
 
Izzie, can I move there? OMG, only $150 per year out of pocket for medical expenses! Here, without insurance, it'd be more than $150 just for one clinic appointment. I have insurance, with a deductible of $1000. That means I need to pay $1000 out of pocket for medical care before my insurance pays anything. Then they pay 80% and I pay 20%, but sometimes they randomly decide that certain things aren't covered so sometimes I still pay more than the 20%. It can get pricey really quick even with insurance. And without insurance, forget it, you can't get sick or injured or you're going to go bankrupt. Fortunately though most employers offer insurance (although I still have to pay a portion of my paycheck towards that).

I have found that I'm stuck in an endless loop. I have to work so that I have insurance so that I can see a doctor and get my meds and be reasonably well, so that I can work, so that I can have insurance, so that I can be well, so that I can work...

I'm glad to have insurance PERIOD because I went about 10 years without it since I was unemployed for very long periods of time. I'm about to turn 33, so I am very glad I have insurance to cover my butt (literally). I had to basically pray that I wouldn't get sick. Even going to an urgent care costs a lot of money I didn't have. Fortunately, since 2012, my former internist GP saw me pro-bono since I was diagnosed with hypothyroidism and she wanted to make sure I was doing OK. I was allowed 1 free consult a year but had to pay for lab tests, which were drawn in her office. I am very thankful that she allowed that. Unfortunately, my work's HMO plan does not cover her and I was forced to find a new GP. I looked thru the directory AND physician ratings and found a woman doctor who also specializes in internal medicine and she is just slightly older than me. I think she's wonderful because she looked right at me when I spoke and listened to everything I said. She's the one who referred me to the GI doc when the ultrasound of my gallbladder was clear instead of just saying, "well, that was fine, so there's nothing wrong with you."

My HMO plan has a high deductible of $2,000. I was added mid-year which starts in September and ends in August of the following year. I've covered the yearly deductible for 2015-2016, but we are about to start open enrollment next month which means I'll have to start all over again. My plan has an HSA account attached to it, too.
 
Yay!! The doctor called this morning - all my tests came back normal. Which isn't a guarantee that everything is hunky dory, but there's no indication that I have anything autoimmune going on, which is a relief. Next stop: xray of the esophagus, while I wait months and months for an upper scope under general anesthesia.

Does anyone else here have esophageal dysmotility? Or know of common reasons for it? I think they're guessing that it's just... damage, now. Scar tissue or I don't know, Barrett's maybe? Does Barrett's cause dysmotility? In any case it seems less scary to me than obscure autoimmune issues that cause a myriad of other problems too.
 
I saw my GP this morning. My blood pressure and blood sugars are all over the place. He tried taking my blood pressure three times and got error messages three times. He did it manually then took my pulse. They have an ecg machine at the clinic so he got them to do one. He checked it and said thank goodness it is your heart , I thought my machine was broken. What chance do we have. Ron.
 
I don't know what's going on this morning, but my gut feels really crampy and like I'm going to have to make a run for the bathroom. I hate that "urgent" feeling which usually turns out to be bad gas. I just ate a late breakfast about 45 minutes ago - Udi's GF Chicken Maple Sausage sandwich. It didn't have any known trigger ingredients that I could see, but I definitely don't like how I'm feeling. :(
 
Izzie, I don't know much about Barrett's, but I don't think it causes dysmotility. I think it's more along the lines of, you're more likely to develop esophageal cancer if you have Barrett's, but I've never heard of it causing dysmotility. (I could be wrong though.)

MissLeopard, even if the individual ingredients themselves are safe, sometimes greasy or high-fat foods will send me running to the bathroom, and sausage has definitely done that to me (even turkey sausage). So maybe it's just the fat or grease factor of the sausage sandwich that's causing you some trouble.

How's everybody doing today? Anybody have plans for the weekend? I'm going to help my family clean out my grandma's condo and I'll be visiting with my grandma at her nursing home as well. It's going to be a stressful time all around, I think. I'm not really looking forward to it but I know I need to pitch in and help with the condo clean-out, and even though she's often in A Mood nowadays, my grandma still loves having visitors. She's got a lot of hoarding tendencies so the condo is packed full of random stuff and we all need to either put it in storage, give it away, or toss it. It's going to be a big job and a stressful time. My guts are getting slightly riled up just thinking about it, ugh.
 
My plans for today (and this weekend) were to start Plaquenil after breakfast --- no nausea within this first hour so far, but my tummy is starting to rumble so we'll see what's coming.
 
Izzie, I don't know much about Barrett's, but I don't think it causes dysmotility. I think it's more along the lines of, you're more likely to develop esophageal cancer if you have Barrett's, but I've never heard of it causing dysmotility. (I could be wrong though.)

MissLeopard, even if the individual ingredients themselves are safe, sometimes greasy or high-fat foods will send me running to the bathroom, and sausage has definitely done that to me (even turkey sausage). So maybe it's just the fat or grease factor of the sausage sandwich that's causing you some trouble.

How's everybody doing today? Anybody have plans for the weekend? I'm going to help my family clean out my grandma's condo and I'll be visiting with my grandma at her nursing home as well. It's going to be a stressful time all around, I think. I'm not really looking forward to it but I know I need to pitch in and help with the condo clean-out, and even though she's often in A Mood nowadays, my grandma still loves having visitors. She's got a lot of hoarding tendencies so the condo is packed full of random stuff and we all need to either put it in storage, give it away, or toss it. It's going to be a big job and a stressful time. My guts are getting slightly riled up just thinking about it, ugh.

Thanks for the info. It could have been the cheese in it as I'm noticing that dairy is bothering me more than it used to, which is difficult because I love my dairy. Plus, I just remembered that I had a bowl of cereal last night with milk. I'm betting that didn't help things.
 
MissLeopard, that very well could be. Dairy is a big trigger for a lot of us. I'm lactose intolerant myself so I feel your pain. The good news is, there are a lot of dairy alternatives out there and some of them are pretty good. Try things like rice milk, almond milk, cashew milk (I prefer cashew milk myself). I've also found that goat cheese doesn't bother me so I do a lot of goat cheeses (I had tried rice cheese but it just doesn't melt on a pizza properly, it had sort of a plasticky texture - goat cheese does melt really nicely on a pizza and has a nice flavor). There are soy and coconut yogurts and I think ice creams as well. So try a few of the dairy alternatives and see what you like and what agrees with you.
 
MissLeopard, that very well could be. Dairy is a big trigger for a lot of us. I'm lactose intolerant myself so I feel your pain. The good news is, there are a lot of dairy alternatives out there and some of them are pretty good. Try things like rice milk, almond milk, cashew milk (I prefer cashew milk myself). I've also found that goat cheese doesn't bother me so I do a lot of goat cheeses (I had tried rice cheese but it just doesn't melt on a pizza properly, it had sort of a plasticky texture - goat cheese does melt really nicely on a pizza and has a nice flavor). There are soy and coconut yogurts and I think ice creams as well. So try a few of the dairy alternatives and see what you like and what agrees with you.

I believe I have lactose intolerance because it seems to run in my family. When my sister was little, she had BAD stomach aches from dairy so she was always taking Lactaid. Before I found out I had Celiac disease, I realized that I had problems digesting dairy, too, so I started taking lactase enzyme whenever I consumed anything with milk or cheese. I ate some Greek yogurt yesterday which my GI doctor recommended, but I think I remember him telling me to avoid other dairy products (when he thought I had SIBO). The yogurt didn't seem to bother me at all and I always buy the really good kind with no sugar (I add honey to it if it needs to be sweetened) - plain FAGE 2% is my favorite. It's really thick, though, so I couldn't eat the whole amount in the small cup.

Anyway, I'll stay away from dairy as much as possible (or make sure I take plenty of lactase enzyme - which I've been really lazy about lately) and see if that helps. I need to get some more lactase enzyme since my old stuff expired last year and I haven't bought more. I get a huge box at BJ's where the caplets are individually wrapped, so they last longer. :)
 
I've quit dairy completely in the past week and I feel soooo much better in so many ways. Most notably my joint pain and general achiness, which is practically gone. It's a bit of a bother, I like yoghurt and ice cream and dairy products make for convenient snacks, but with how much better I feel I'm not going back to eating any of it that's for sure.
 
MissLeopard, Greek yogurt is actually one of the dairy products that makes me feel the worst! That and cottage cheese. Those two I definitely avoid. I can eat little bits of cheese and ice cream without much trouble, but even small amounts of Greek yogurt or cottage cheese will put me in pain and/or make me bleed. It's not a fun time.

Izzie, can you eat bananas? If so, you can make a kinda-sorta ice cream out of just bananas. My hubby tried making this once and it turned out okay (he liked it better than I did, but sometimes bananas are a trigger food for me so I didn't eat much of it). Here's a link for you.
http://www.huffingtonpost.com/entry/how-to-make-banana-ice-cream_us_55bfaf8be4b06363d5a2e595
 
I feel like crap tonight, unfortunately. The last 2 nights, I've had a really weird headache that gets worse with my chronic cough (I have hypertrophic tonsils, according to my GP, that causes a major tickle in my throat). Everytime I cough, my head hurts even more. I took Tylenol but that didn't help, so I sprayed Flonase into my nose and took some Tavist thinking it was my sinuses, but that didn't help either. It almost feels like a migraine without the aura or nausea I used to get and I haven't had a migraine in SEVERAL years (about 6 or 7). I may need to get to bed soon to, at least, take a nap. :(
 
I saw my GP this morning. My blood pressure and blood sugars are all over the place. He tried taking my blood pressure three times and got error messages three times. He did it manually then took my pulse. They have an ecg machine at the clinic so he got them to do one. He checked it and said thank goodness it is your heart , I thought my machine was broken. What chance do we have. Ron.

Ron, so what are they going to do for you? I know when I first developed PE, they had a hard time getting a viable ecg reading because it had my heart so stressed out, but that thankfully corrected itself right away after starting treatment for the blood clots.
On that line, did you know quinine that we were discussing for cramps can cause fast and irregular heart beats? Hopefully (for a change for you) they will find some fast and easy fix. . .
 
We went fishing again yesterday, the area was beautiful as usual, but I was dealing with my my own headache. I've found that some of my sinus headaches can be about as intense as my chronic migraines. (I have some level of migraine about 1/4 to 1/3 the time.) I get the "classic" migraine also, the kind "with aura" (starts with sudden vision problems, holes in the vision and shimmering lights before the actual headache) myself, but not sure what this one was, as I woke up with it. I had the usual sensitivity to light and sound and some nausea, but also have had allergies running amuck, plus a lot of stress. Doug kept asking if I really wanted to go (and then when there if I really wanted to stay) but being in cooler air and beautiful surroundings with a horrid headache is better than being at home where all I can think about is the headache. And tho not laying down or sleeping which can help sometimes, all I really did was sit there and make a few casts from my chair. I didn't catch any fish, of course, but Doug caught his limit. I've got a very high pain tolerance and sometimes I'm able to function thru the pain (to a minor degree, but it does leave my brain fuzzy thinking) even when it is migraine. I just wish it would go away today. I'm supposed to be doing the Saturday housework and getting ready for an overnight "retreat" tomorrow fairly early (we are saving money by bringing prepared meals, I'm bringing dinner) with my sis-in-law where we will be doing some "crafting" and she will teach me new skills. She is super talented.
I just wish my head and tummy would settle down now.
 
I woke up this morning feeling like I had no energy whatsoever. I slept until 11am and then ate a late breakfast. I stayed up until 12:45pm when I felt so exhausted that I needed a nap. I just got up at 4pm. I feel a little bit better. When I woke up this morning, I found my bedroom door closed which I don't recall doing (I'm dog sitting for my mom and dad) since I needed to leave it open in case our dog needed to come in. I find things like this all the time - sometimes, it will be my alarm clock turned off or my mom will say that she asked me a question and I have no recollection of it at all. I think I sleepwalk sometimes. I'm sure I did it again last night and I didn't get good sleep because of it. Thankfully, it's only limited to my room and I'm not trying to leave the house (we have an alarm which I'm sure would wake me up, anyway).

Anyway, the day is nearly over and I haven't done anything but eat or sleep. I'm hoping to go to the store soon so I don't feel like I have cabin fever. I don't like being confined to the house all day since I started work full-time.
 
I managed to get to the store, finally, but I came back home sweaty, hot, and with a horrible gut ache. It's 7:15 right now and I am not even hungry because I feel so yucky. I took a shower thinking that would make me feel better, but I still feel like my gut is sore and bloated. I really wish I could figure out what is causing this. My colonoscopy is in 4 days.
 
I was a little behind on reading everyone's postings, but today I feel horrible, so I thought it was a good time to catch up. I seem to always turn to this forum on my really bad days, because I can relate so much to what everyone says! People who haven't experienced a major health problem just can't understand. It's so nice to be able to read the posts on here and realize that I'm not the only one who's going through this, even though it may feel that way sometimes.

I have also wondered if/when I should have kids. I've been married for over two years now, and people seem to think that it's time for me to have kids, but I just think I'm way too sick! I don't think that'd be healthy for me or the baby, and I can't imagine taking care of a baby when I can barely even take care of myself. And I agree that I'm not sure if I should pass on these genes!! But I really would like to have children someday so I guess we'll see.

I tend to get new symptoms every so often. As if I wasn't already feeling bad enough. My newest one is hives. Apparently I get them now whenever I get hot/sweaty. So if I sit out in the sun.....hives! If I take a shower......hives! It's pretty strange. I also have a weird problem that I've had since I was around 15. Whenever I have to have a BM (or if I'm nervous), my butt sweats profusely! Anyone else? Probably not. Although I have googled it, and there are others like me. It's gotten to the point where I can only wear jeans or black pants, because otherwise you can see the sweat through my pants. It's pretty uncomfortable, but I guess I've learned to live with it at this point.

I don't feel like I'm any closer to getting diagnosed or being cured, but the good news is that I do really like my current doctor. She has me email her personally every week or two to update her on how I'm doing so she can adjust my treatments. She also told me that she's never going to give up on me! She said that if she doesn't figure it out, she's going to have me see the head doctor at the clinic she works at, who is supposedly a genius. Apparently he has an 80% remission rate for crohns (without using the typical meds), he's cured someone with alopecia, and he thinks he's going to cure autism someday. So let's hope he can help me if she can't!!

I hope everyone is doing relatively well and has been able to enjoy the weekend as best as possible. Hang in there!
 
Hi everyone, been a little while since I posted.

MissLeopard I struggle with the heat and even worse humidity. I'm not surprised with the link to flares. It is currently winter here so I'm enjoying the cooler temps (we don't have a bad winter though it's quite mild). Hope your prep and scopes go smoothly and maybe some forward progress towards answers and treatment.

Akgirl sounds like you have found a good dr there and there is hope to get it sorted! After reading about so many struggling to get good care it's such a blessing you seem to have found it.

I've been struggling. Had a 'cold' for 2.5 weeks now. Didn't have fevers but the chesty cough has been awful. Dr said last Tuesday that I would be ok just would be coughing for a few weeks [emoji30]. I ended up coming home on Thursday from work to rest as I just wasn't getting better. I organised Friday off as holiday leave just to rest. It was my birthday on Sat and I felt awful...even turned down dinner out with hubby. I'm sure this has been worse because my whole system isn't working properly. Of course the chronic migraines I get and the ongoing gut issue didn't stop during this either! So I'm almost better from the cough but still frustrated with my gut. Dr said on Tuesday he is more and more thinking the post infective IBS is correct......but I am not getting better [emoji35] if that's what it is. Still on the waiting list for scopes, if I'm lucky they will be this side of Christmas.

Work has changed as someone retired and the type of work I'll be doing is going to be different. We are only a small workplace and it's hard for everyone not to know when you aren't well. Thankfully generally supportive bosses. I have also moved offices and got a new computer, I know they seem small things but it changes the way I work.

This morning I woke up with D and the latest seems to be undigested food (seems tmi but here seems safe to say [emoji15]). I knew if I ate then I would have more D and yep sure enough. It's ok for today as its my day off but tomorrow I go back to work and it stresses me being like that. Not to mention that I have rested and rested the last week and still feel exhausted [emoji37]. It seems no one has a solution.
 
I feel like crap tonight, unfortunately. The last 2 nights, I've had a really weird headache that gets worse with my chronic cough (I have hypertrophic tonsils, according to my GP, that causes a major tickle in my throat). Everytime I cough, my head hurts even more. I took Tylenol but that didn't help, so I sprayed Flonase into my nose and took some Tavist thinking it was my sinuses, but that didn't help either. It almost feels like a migraine without the aura or nausea I used to get and I haven't had a migraine in SEVERAL years (about 6 or 7). I may need to get to bed soon to, at least, take a nap. :(

The cough with the following headache seems to be back tonight. I'm starting to get a little worried as this has not happened to me before. The headache hits in the center of my forehead, which makes me wonder if I have a sinus infection. I haven't had one of those in a long time. I wish this chronic cough would just go away, but that won't happen until I have my tonsils out. I've yet to use my referral to another ENT that my new GP referred me to since the first one treated me like I was faking all my symptoms. I went in with dizziness/vertigo, fluctuating hearing loss (meaning, it doesn't happen all the time), tinnitus, and tonsils full of crypts. He had his audiologist do a hearing test and, of course, at the time, I wasn't having the hearing problem, so it came out normal. He didn't even look at my tonsils until I asked him to and then he gave me a hard time. I felt so rushed and he had a HORRIBLE bed side manner. He was my mom's surgeon when she had to have her tonsillectomy and he has treated my grandmother before. My grandmother said it is his normal manner, but I cannot stand doctors who act as though they know it all and no one is allowed to say otherwise - especially me as a patient. Anyway, his office sent me a postcard reminding me to schedule a follow-up about 2 weeks ago and I laughed sarcastically and threw it in the trash. No way am I seeing him EVER again. My main priority is figuring out my GI symptoms first since that is the biggest problem right now and then I'll look into seeing another ENT and possibly having the tonsils removed.
 
MissLeopard, I had my tonsils out as an adult and I know people say it's sooo painful but for me it was no big deal at all. I had reoccuring peritonsillar abscesses for over a year before I had enough and had my tonsils out. Haven't had any issues with it since. I've had more pain from menstrual cramps than I did during that entire ordeal :p

Sounds like the doctor you saw was just plain rude!
 
MissLeopard, I had my tonsils out as an adult and I know people say it's sooo painful but for me it was no big deal at all. I had reoccuring peritonsillar abscesses for over a year before I had enough and had my tonsils out. Haven't had any issues with it since. I've had more pain from menstrual cramps than I did during that entire ordeal :p

Sounds like the doctor you saw was just plain rude!

He absolutely was one of the WORST doctors I've EVER seen. He cared very little about how I was feeling. He got me in earlier than my appointment, which I thought was a good sign, but it turned out, he just wanted to get out earlier since it was a Friday. He never took one look at my chart and I had not finished filling it out before he called me back.

He prescribed me one of the worst medicines I've ever taken for dizziness - Klonopin. Now I wonder if he thought I was having anxiety attacks. I don't know why he prescribed it because I was on Ativan - but, again - he never looked at my chart. The pharmacist caught it and asked me if I was planning to take both. I didn't know they were the same class of drug. I only took it one time and felt like I was in a daze. I never took it again because I did not feel safe on it. I called the office and asked if there was something else that could be done and his receptionist asked me if I had the bloodwork done and I had not. Even the doctor admitted he didn't think all the tests needed to be run, so I didn't want to spend the money. She was abrupt with me and said, "He cannot diagnose your problem unless you get the bloodwork done." I never called them back again.

The thing that bothered me the most was that I told him my aunt had Meniere's disease and asked if that could possibly be what I have and he replied, "I doubt she has it because it is so over diagnosed. You don't have it at all." He has never seen my aunt! That was so blatantly rude and condescending. I think he was angry with me because I mentioned my family history. He was so callous about it and, after that, rushed me out the door. I told my new GP and she works across the hall from him! I had no idea when I set up the appointment. I told her what a jerk he was and she said, "There is no reason why he should have treated you like that. I will give you a referral to someone else." I was thankful for it because I told my GYN doc and he said, "Who did you see?" When I told him the name, he said, "That's who I would have sent you to." :(

Anyway, my mom had some side effects from the surgery - her throat went into spasms where it felt like it clenched down. I've had that happen before WITH my tonsils and it HURT like crazy. I actually went into an anxiety attack because I didn't know what to do. Fortunately, my mom was with me and got me to calm down and told me exactly what to do that made hers go away. It took about 2 minutes, but it finally stopped. I hope, if I have mine out, that it doesn't happen again. My tonsils look so yucky and full of holes. I used to have tonsil stones in them, but I started drinking carbonated drinks and it keeps the gunk out.
 
I'm mentally and physically exhausted today. Hoarding plus dementia, it's just a bad time all around. My grandma is deteriorating even further mentally - she didn't recognize her own items, she thought they belonged to some other lady. She also thought that she has to move from her room at the home so she packed up all her items - she was under the delusion that she was being moved into a storage closet and would have to sleep on a cot (she's not being moved anywhere). It was really sad, and apparently that type of behavior often precedes the really bad stuff, like losing the ability to speak, feed herself, recognize her loved ones, etc. So that was the mental and emotional exhaustion.

The physical exhaustion was, I spent the whole weekend at my grandma's old condo, cleaning and organizing her hoard so that we can sell the condo. There was SO MUCH STUFF. And a lot of it was heavy, like canned goods that were expired (trash pile) and a lot of books (donate pile). I was so sore and tired, my joints were definitely yelling at me after 2 days of trying to clean up a hoard. We made a lot of progress but there's still an insane mess in the condo, it's crazy how much stuff one person can buy and hide in a 900 square foot space. She had at least 30 purses, 50 toothbrushes, probably 100 towels, maybe close to 1,000 emory boards (and she had those written on a recent shopping list too, eek!). She'd apparently buy things, forget that she already had like 50 of that thing, forget that she had just bought more of that thing, and go out and buy even more. Dementia plus hoarding is a really, really bad combination.

My guts are holding up okay but my joints are still somewhat painful (my joints were yelling at me yesterday). I slept on a heating pad last night (I found it in the hoard, ha ha, brand new and still in the box) and that helped somewhat. I think I'm going to take a bath with Epsom salts tonight too.
 
Cat - make sure they check your grandma for a urinary tract infection! You'll be surprised, but often mental symptoms are the first signs, I'd call to today to ask them to do it, if they haven't already - not that it couldn't be a decline, but really, in my volunteer work, it is more often a UI.

I am sooooo uncomfortable today. I knew that the Plaquenil has to "build up" in your system before you get any benefits...well, apparently it has to "build up" before you get side effects too!! Today is day 4, and I am living in the master bedroom, to be near the toilet, and the stomach cramps are unbelievable!! I think I'm going to take tomorrow off!
 
I'm mentally and physically exhausted today. Hoarding plus dementia, it's just a bad time all around. My grandma is deteriorating even further mentally - she didn't recognize her own items, she thought they belonged to some other lady. She also thought that she has to move from her room at the home so she packed up all her items - she was under the delusion that she was being moved into a storage closet and would have to sleep on a cot (she's not being moved anywhere). It was really sad, and apparently that type of behavior often precedes the really bad stuff, like losing the ability to speak, feed herself, recognize her loved ones, etc. So that was the mental and emotional exhaustion.

The physical exhaustion was, I spent the whole weekend at my grandma's old condo, cleaning and organizing her hoard so that we can sell the condo. There was SO MUCH STUFF. And a lot of it was heavy, like canned goods that were expired (trash pile) and a lot of books (donate pile). I was so sore and tired, my joints were definitely yelling at me after 2 days of trying to clean up a hoard. We made a lot of progress but there's still an insane mess in the condo, it's crazy how much stuff one person can buy and hide in a 900 square foot space. She had at least 30 purses, 50 toothbrushes, probably 100 towels, maybe close to 1,000 emory boards (and she had those written on a recent shopping list too, eek!). She'd apparently buy things, forget that she already had like 50 of that thing, forget that she had just bought more of that thing, and go out and buy even more. Dementia plus hoarding is a really, really bad combination.

My guts are holding up okay but my joints are still somewhat painful (my joints were yelling at me yesterday). I slept on a heating pad last night (I found it in the hoard, ha ha, brand new and still in the box) and that helped somewhat. I think I'm going to take a bath with Epsom salts tonight too.

I concur with wildmtnhoney. Have your grandmother's home do a UA/CNS on her to make sure she doesn't have a UTI as that can cause worsening dementia symptoms. Also, make sure she is being offered enough to drink as even dehydration can cause not only UTIs but worsening dementia.

It's strange what the older generation kept. My great-grandmother lived during the Great Depression so she would keep empty food jars or even paper from tissue boxes, shoe boxes, etc. My grandmother and aunt had a hard time going through all her stuff when they moved her to assisted living. She was a hoarder in the sense that she was saving things in case of another depression. Her brain, however, was clear. She lived to be over 100 and only started getting worse 2 months before she passed away (her arthritis, for the most part).

Anyway, I hope you feel better. Maybe you could soak in a hot bath with plenty of Epsom salt? Do something you love and get your mind off it. Even something as simple as watching your favorite movie could be helpful. :)
 
Thanks, Wildmtn, I'll mention it to my dad (he's got the healthcare power of attorney for my grandma). The urinary incontinence has been going on for awhile now (months at least - we found adult diapers and pads all over her condo) and her mental decline has slowly been happening for years and years. She has had UTIs in the past though and maybe is no longer able to mentally realize if that's happening, so it is a possibility. She's 84 so it's completely feasible either way, it could easily be a UTI or it could easily be urinary incontinence due to age. There is a doctor on staff at the facility who sees her regularly so I'll make sure my dad passes that along to the doctor.

Wildmtn, that sounds horrible! And it actually sounds really similar to the side effects I got from that D-Mannose stuff - I had horrendous urgent watery d and insane cramps and pretty bad nausea as well. So I totally feel for you, that was a rough few days with those side effects! I presume you've put in a call to your doctor and let them know that this is happening? Maybe there's a similar med they can try you on that might not give you the same side effects.
 
MissLeopard, yeah, that's my grandma's rationalization behind the hoarding as well, she says it's because she grew up during the depression. I think she's got OCD, though. Particularly when I was younger, she was very into hand-washing as often as possible. I had to wash my hands before or after doing any activity whatsoever when I was at her house. I literally had to wash my hands before I went outside to play. :p

So yeah, with the hand-washing and the hoarding, I think it's OCD. Pair that with dementia and it's just bad. As the dementia got worse, the hand-washing sort of went away (as did her ability to do cleaning of any sort - before we moved her into a memory care facility, she was no longer able to do laundry, wash the dishes, etc). But the hoarding got worse. She started hoarding food even more, and didn't throw away spoiled/rotting food. My uncle looked in her fridge just the other week and he said she had some ham in there that was from 2013. And at one point, she had about 8 cartons of milk in her fridge, at least half of them spoiled. She went to the grocery store, couldn't remember if she had any milk at home, so she bought more milk. Her default is, if I don't know if I have this item at home, I'd better buy it. She swore to my aunt that she needed a beige purse for my grandpa's funeral because she had no beige purses. So my aunt, not knowing, took her out and they bought her a beige purse. During the condo clean-out, we found at least 15 beige purses, some still new with tags on. Ugh.

Oh, and the hoarding has been passed down through the generations - my dad is definitely a hoarder, he's actually worse than my grandma. While she kept everything looking neat at first glance (but her closets and every nook & cranny that was out of sight was stuffed full), my dad's hoard has spilled out and taken over his whole house. He's got paths through the piles of stuff in his bedroom, the basement is full of stuff with paths there as well, and it's now spilled over into piles in the living room (my mother is livid about that and is threatening to hire a dumpster and just toss it all). So there seems to be a genetic component to the hoarding, which also makes me think it's OCD (my dad has a lot of control issues as well). I can tell that I have some of those tendencies as well, especially the hoarding, so I make sure to be very mindful of it and to regularly clean out and purge any unneeded items. I don't want to end up like my dad and my grandma.
 
MissLeopard, yeah, that's my grandma's rationalization behind the hoarding as well, she says it's because she grew up during the depression. I think she's got OCD, though. Particularly when I was younger, she was very into hand-washing as often as possible. I had to wash my hands before or after doing any activity whatsoever when I was at her house. I literally had to wash my hands before I went outside to play. :p

So yeah, with the hand-washing and the hoarding, I think it's OCD. Pair that with dementia and it's just bad. As the dementia got worse, the hand-washing sort of went away (as did her ability to do cleaning of any sort - before we moved her into a memory care facility, she was no longer able to do laundry, wash the dishes, etc). But the hoarding got worse. She started hoarding food even more, and didn't throw away spoiled/rotting food. My uncle looked in her fridge just the other week and he said she had some ham in there that was from 2013. And at one point, she had about 8 cartons of milk in her fridge, at least half of them spoiled. She went to the grocery store, couldn't remember if she had any milk at home, so she bought more milk. Her default is, if I don't know if I have this item at home, I'd better buy it. She swore to my aunt that she needed a beige purse for my grandpa's funeral because she had no beige purses. So my aunt, not knowing, took her out and they bought her a beige purse. During the condo clean-out, we found at least 15 beige purses, some still new with tags on. Ugh.

Oh, and the hoarding has been passed down through the generations - my dad is definitely a hoarder, he's actually worse than my grandma. While she kept everything looking neat at first glance (but her closets and every nook & cranny that was out of sight was stuffed full), my dad's hoard has spilled out and taken over his whole house. He's got paths through the piles of stuff in his bedroom, the basement is full of stuff with paths there as well, and it's now spilled over into piles in the living room (my mother is livid about that and is threatening to hire a dumpster and just toss it all). So there seems to be a genetic component to the hoarding, which also makes me think it's OCD (my dad has a lot of control issues as well). I can tell that I have some of those tendencies as well, especially the hoarding, so I make sure to be very mindful of it and to regularly clean out and purge any unneeded items. I don't want to end up like my dad and my grandma.

I know what you mean. I have a grandfather with mid-to-late stage Alzheimer's. It's so hard to see someone you love not remember anything anymore - even his own family. I'm glad your grandmother moved into a memory care facility. I did my internship at a memory care ALF and learned so much about the disease. Teepa Snow's videos and literature are a wonderful resource if you ever want to learn more about the disorder. I actually got to meet her in person last year which was AWESOME. She's a dementia expert and helps you see past the illness to the person underneath.

http://teepasnow.com/

It's got to be really hard dealing with your own problems on top of everything else. But just remember to take care of yourself. :thumright:
 
Oh man I am having a hard time getting enough protein and fat in my diet these days. The only kind of dairy replacement I can seem to stomach is rice milk, and that's sooooo many carbs. Can't really eat red meat, I'm bored to death of chicken. If I so much as cook with a regular amount of oil I get immediate heartburn. Most of the foods I tolerate well are just very carb heavy. Do you guys pay attention to macros? Or do you not bother? I'm wondering if I should even care or just do what makes me feel the least sick.

On the upside, since being more diligent about diet and adding Ranitidine to my medications I am feeling a little bit better. Still have heartburn but less of the intense, stabby chest pains and bouts of crazy belching after I eat. So that's good!

Probably will need a second iron infusion soon, my iron levels were pretty low and I've been getting dizzy more. But it went fine last time so hopefully it will this time too!
 
Happy news! I emailed my new Cardio EP/Rhuem this morning asking if she knew any GI's and GPs. She already put referrals in the system for me for some that she works with! One is a specific GI that she knows well, and then a group of GPs. Happy dance!
 
MissLeopard, I will check out that link when I get home tonight. Thanks! And yeah, I know my sweet grandma is still in there and I do try really hard to look past the paranoia and delusions and anger and confusion. She's just starting to forget who we are. She hasn't forgotten me (yet) but she is in the midst of forgetting my brother. She somehow wiped out all memories of him for years and years - she made some comment to him to the effect of, "It's too bad that you couldn't have ever come for any family gatherings, xmas, thanksgiving, etc." And he was like, I was there, grandma! But for some reason she doesn't remember him ever being there. And now she's even forgetting him mid-family gathering. At my grandpa's visitation before the funeral, my brother had been there for like an hour and he had said hello to my grandma when he arrived. But an hour into it she approached him and asked if he had just arrived. And now, when looking at photo albums, she can't remember who he is - she either just plain doesn't know or she thinks he's somebody else (like last week she looked at a photo and thought he was my dad's cousin, who looks nothing like my brother). She still knows who my brother is when he's there in person, but she's lost just about everything else she knows about him.

The memory care facility she's in seems very good - I've been super impressed by all the staff members I've had contact with. My grandma has only been there for a little over a month (my grandpa died on May 14th and from there it was a scramble to get my grandma out of her condo and into an appropriate facility - when she was at the condo and completely alone and unsupervised, she was still driving which was terrifying, she would sometimes wander, she was eating the rotting food in her fridge on the few occasions when she did remember to eat - so many bad things!). So yeah, my grandpa was very physically ill (in a wheelchair, on dialysis, etc) but mostly all there mentally, and my grandma was taking care of my grandpa physically while he was taking care of her mentally. Together they sort of totaled up to being one functional person. With my grandpa gone, though, we wasted no time in getting her into a memory care unit. That was really fortunate, too - there's one really good place in my grandma's town that has a highly rated memory care unit. My grandpa used to be on the board of that facility, so we were able to pull some strings and cut the line. They apparently usually have an 8ish month wait list to get in, but they had exactly one opening and they saved it for my grandma, so we got her in within a couple of weeks rather than having to wait and worry for 8 months. That was a huge relief!

Izzie, I kinda sorta pay attention to macros. Because I lift weights, I know I need to get a lot of protein, so mostly I just try to eat some protein at every meal. I don't pay a lot of attention to numbers though. Can you eat eggs? What about baked fish? I can't do the "standard" red meats either (no beef nor pork) but I can do the less standard ones, like I can have lamb and small bits of venison and even a little bison meat! Those are expensive meats though so see if you can just buy a small amount to test out. I am hesitant to recommend that you try nut butters, since peanut butter is one of my worst reflux triggers, but if you can do those they are high in both "healthy" fats and protein. I'm presuming that beans are also out - I can't do beans either, too much fiber and they also seem to trigger my reflux for some odd reason. Sorry I'm not able to be more helpful but hopefully there are a few ideas worth trying in there!
 
So many things to respond to, I can't possibly say everything I want to.
ShellK, happy late birthday and sorry it was spent not feeling well. I sure hope you can get your scopes sooner than Christmas, I can't imagine having to wait that long.
I have to say (a repeated theme for me), I hate (some) doctors.
MissLeopard, I wish every doctor who treats people like yours did you, would end up in a health crisis being treated the exact same way as you were. Not very charitable on my part, but maybe they would learn a thing or two.
As to the Klonipin (also known as topimax) I was put on it for awhile for seizures, it didn't help, and I found it horrible! In some epilepsy circles, it is known as "dopi-max."
Cat, your grandmother and my mother (and your great-grandmother Miss Leopard) are sounding more and more alike. My mother grew up in the depression like your great grandmother Miss Leopard, and has always been somewhat of a "saver", but it's a lot worse lately (including food she can't cook). And yes, a check of a UTI would be warranted. A few years ago, while on an extended family camping trip in a remote wilderness area, my mother got extremely ill. She couldn't eat, and was extremely out of sorts, but couldn't tell us what was wrong other than she didn't feel well. She seemed more confused than usual. Doug and I ended up driving her to a small town hospital who found out that she had a severe UTI and the beginnings of her kidneys going into kidney failure. They gave her antibiotics and instructions to see her own doc when home. I'm happy to say she improved rapidly in this regard.
As for myself, I'm a little better than the last time I posted, but also getting to where I'm afraid of what tomorrow might bring. I've got to get out of this funk.
 
Well I was discharged from Gastro with the IBS several years ago and now am only as far as they have found imflammation in my bowel (tests done by Rheumatology), no-one is helping me at the moment, I have no appointments to go back for a consultation or tests (and Rheumatologist offered to arrange tests in the meantime). They've had the report a month.

So until they see me I am stuck. And I did report night attacks and sweats 3 years ago, plus they blood tests found inflammation but with a normal endoscopy I was dismissed as having IBS.

EDIT: I was offered steriods by Rheumatology to be going on with but I declined.

i know how you feel i have been trying to get support and result for about 3 years now and they keeping telling me that i am crazy. and shutting me down wit my research i have learn to balance my illness but I'm always drained
 
I just got an appointment with my GP for the headaches I get when I cough. Her MA wanted me to come in today and I was like, "Nope, I'm not going anywhere since I'm doing the colonoscopy prep." I made the appointment for the same day that I have my follow-up with my GI doctor. I have the GI at 9:45am and the GP at 4pm. I have to take the day off since I work about 35 miles away from home and it's ludicrous to come in late and then leave early.
 
MissLeopard, you might want to look into Chiari Malformation. There was a girl on the forum awhile back who had that, and it caused her sharp, painful headaches when she'd sneeze, cough, laugh, etc. Here's a link for you:
http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Good luck with your prep and scope! Keep us posted on how it all goes.

I posted on the other thread about the scope. ;)

I've never heard about CMs before, but looking at the symptoms, I have SEVERAL of them - of which I've been to an ENT about because I thought it was Meniere's disease since my aunt has it and the symptoms are similar. The bolded ones are the symptoms I have:

Individuals with CM may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining.

I'll bring it up when I see my GP on August 5th. I'm betting it's my tonsils and/or a sinus infection. Chronic tonsillitis can put you at risk for sinus and ear infections.
 
MissLeopard, I don't know a lot about Chiari Malformation, but I am pretty sure it's fairly easy to check for it - they just have to do an imaging test (probably CT or MRI, I don't know if an x-ray would pick it up). Apparently a lot of people have Chiari Malformation but many have no symptoms at all and an unlucky handful have really awful symptoms. The girl who used to be active on the forum who had it, she had surgery for hers and is doing really well now.

How's everyone doing today? I've had a stressful week at work but lately my weekends have been stressful as well so I haven't had much chance to relax. Last weekend I went and helped clean out my grandma's hoard at her old condo, and this weekend I'm taking my hubby to pick up my grandma's car that we're buying. It'll be nice once we get all that stuff taken care of (we still need to register the car, get insurance on it, somehow get the spare keys out of my grandma's purse without her freaking out, etc). We have to either sell or junk hubby's old car as well. So there's a lot of stuff to do and none of it is relaxing. I feel like I just want to run away for a day or two and not do anything! But I can't. Sometimes being an adult is really hard.
 
MissLeopard, I don't know a lot about Chiari Malformation, but I am pretty sure it's fairly easy to check for it - they just have to do an imaging test (probably CT or MRI, I don't know if an x-ray would pick it up). Apparently a lot of people have Chiari Malformation but many have no symptoms at all and an unlucky handful have really awful symptoms. The girl who used to be active on the forum who had it, she had surgery for hers and is doing really well now.

I was thinking about the CMs this morning and remembered that I had an MRI about 10 years ago to check for acoustic neuromas and nothing was found that was abnormal. I was getting regular sinus infections (before I found out I was Celiac) and migraines, so I'm sure they probably would have noticed if something was abnormal. I'm pretty sure it's just a sinus infection. :)
 
Well, that's good - I don't think Chiari Malformations spontaneously happen, I'm guessing it's something you've either got since birth or you don't have. So it sounds like that's ruled out. :) Which is good, because I think surgery is the only way to treat/cure it (I'm not sure if cure is the right word).
 
Well, that's good - I don't think Chiari Malformations spontaneously happen, I'm guessing it's something you've either got since birth or you don't have. So it sounds like that's ruled out. :) Which is good, because I think surgery is the only way to treat/cure it (I'm not sure if cure is the right word).

I wouldn't think so either. ;)

I plan to see another ENT doctor for a second opinion soon about the dizzy spells - which have lessened - and the hypertrophic tonsils. I feel like all my time is devoted to figuring out my GI symptoms right now.
 
Arrrgghh, first of all, I somehow missed half of what was said above (and I'm seriously starting to think it's me with the dementia), second, I'm having a hard time getting any exercise in because I have felt so lousy, and third, today I can't even wake up after another horrible night's sleep due to some weird chest discomfort I occasionally get (and here it is 1:30 p.m.), and I've got too much to do for this. I'm also tired of my own whining and can't seem to stop.
 
Sandy, you've got a lot going on and you have every right to have a whine. I will join you in a bit of a whine. I did exercise today but my guts were crampy throughout much of my workout, so I feel for you. It's tough to exercise when you're not feeling well.

This weather is not helping, either. Anybody else in this crazy heat wave? It's apparently 95 degrees F with a heat index of 113 (!!!) here right now. And supposedly really humid too. I haven't ventured outside into that yuckiness yet, but I'm sure when I go outside to leave work it's going to be miserable. My guts cramp up in response to high heat & humidity so that's going to be fun since I'm already crampy, ugh. Thank goodness for central air conditioning, I just have to make it home and then I can cool off and put a heating pad on my belly. (Sounds like an oxymoron but a heating pad helps when I'm having heat/humidity-related cramps!)
 
My turn to whine. I feel awful today, my guts are a mess. I guess my bad belly Thursday got rescheduled to Friday this week, ugh. I took like 4 Zofran and that's keeping the nausea somewhat at bay. I had like 5 episodes of diarrhea this morning before work (the Zofran helps there as well, it tends to constipate me a bit especially when I take more than a couple, so fortunately I haven't had to run to the bathroom since taking the Zofran). I'm still feeling really yuck, though. Unsettled and crampy and still sorta nauseous and just generally unwell. I pushed myself to come in to work, but I don't know if I'll make it through a full work day feeling like this. Bleh.

I need to be feeling better by tomorrow. It's my stupid brother's stupid birthday so I have to go out to lunch with my family. They always make comments when I'm unable to eat or just pick at my food because I'm not feeling well. I am so not in the mood to hear comments so I'm hoping I'm well enough to eat something tomorrow.

Ugh, I also have to be in the car for 2 hours tomorrow afternoon, I'm taking hubby to pick up my grandma's car that he's buying and it's like an hour away. That's going to be interesting, hopefully I don't need a bathroom then because there aren't a lot of pit stops along the way.
 
Hi everyone, I'm currently undiagnosed and confused about my test results. I had an MRE a week ago and bloodwork done. The MRE was completely normal, bloodwork showed a slightly elevated gASCA level, IgA and all others were normal. (mine was 65 units, the cutoff is 50 units) Everything else from CRP to CBC to iron levels were all normal. My symptoms have been bloating and slightly looser stools and sometimes constipation. I feel desperate for answers and if anyone could shed light on the ASCA test and what it means for me, I'd really appreciate it.
 
Cat, why is it that our family members can make us feel the worst about being sick? Shouldn't they be the most supportive ones? I can't even tell you how many times I've cried (by myself) because of something one of my family members has said to me. Today my sister decided to tell me that she thinks that a lot of my symptoms are psychological and only caused by anxiety. Her advice was to ask my doctor for a daily anxiety med and to start seeing a counselor. The thing is, I've already tried several anxiety meds (and antidepressants) to see if they'd help with my symptoms. Not because I think they're psychological, but because of the serotonin in your stomach or whatever. There's evidence that they can help with IBS. But that's not what she meant. She meant that it's all in my head, basically. I've also seen a couple counselors, just for the record. I'm 100% sure that my symptoms are not only psychological or caused by anxiety. I've been sick every single day for 2 1/2 years. At this point, I know my body pretty well. She also told me that when she gets anxious, she has 3-4 bowel movements in a day. Like that's comparable to the debilitating symptoms that I experience every second of every day. Anyway, I needed to vent, but I wanted to tell you that I totally get it! At least we have each other, right?! :)
 
Another one for the whine club! Or well, not really, I'm feeling okay and doing alright. But the past few days I've been overcome with a lot of anxiety and fear. My doctor(s) seem unsure as to why some things are happening to me and why the meds aren't working as well as they should and they've had some ideas about what it could be that've been really scary.

The initial blood tests they took to test for scleroderma were negative, and I don't seem to have any of the key symptoms so I think they've dismissed that somewhat, at least for now, but they're still doing a thorough evaluation of everything to check for autoimmune things and IBD and well, anything, really, and I'm just freaking scared. Been up late at night lately with anxiety about death and it's really mentally taxing. I try to just distract myself, and I am doing okay with it but it's difficult and I wish I didn't have to deal with it at all.
 
I am super frustrated, for some reason, today. I was thinking about what my GI doc said before I had my colonoscopy and I'm irritated that he keeps saying my symptoms sound like IBS - which I've had since 2003 as a diagnosis. My "gut feeling" is that it is something different. My biopsy results haven't come back yet, so I hope they show what I've been feeling.
 
I am super frustrated, for some reason, today. I was thinking about what my GI doc said before I had my colonoscopy and I'm irritated that he keeps saying my symptoms sound like IBS - which I've had since 2003 as a diagnosis. My "gut feeling" is that it is something different. My biopsy results haven't come back yet, so I hope they show what I've been feeling.

Keep pushing until you get an answer.
 
I won't whine this time, except these few words (or I won't stop, and I'm too tired.) I'll just say I'm glad today is over.
 
Ugghh. I'm having one of those nights where my guts just won't let me sleep. It's just past midnight here and I haven't been to bed yet because of the nausea, cramping, and diarrhea. I feel awful. I came home sick from work at like 10 AM, rested all day, ate a little bit of mac & cheese (usually a safe food) for dinner, but then as I was attempting to go to bed around 10 PM, that's when my guts decided to start the party. I tried to sleep but it was just diarrhea every 5 minutes, as soon as I got back into bed I'd have to get right back out again. So I conceded defeat at least for the time being.

I haven't been to the bathroom for like 20 whole minutes so hopefully it's finally calming down again. I had like 5 episodes of d this morning, and I didn't eat that much today - I don't understand how I can just keep going to the bathroom, like how is there that much volume of stool in me when I've barely eaten and already been to the bathroom a lot??

I guess the upside is, I'm just not going to my brother's birthday lunch tomorrow. Count me out altogether, I'm not setting foot in a restaurant. I'm resting up until it's time to go pick up the car tomorrow afternoon. And I may sit on a plastic bag and bring a change of clothes with me juuuuust in case.

Akgirl, you are absolutely right - you do know your body best, so don't listen to your sister. I've heard similar things from both doctors and family members, but I know I have a legitimate physical illness. Sure, things like anxiety and depression can come along with the illness and/or the symptoms of the illness can be exacerbated by anxiety or depression, but it's not all in my head and it is real and it's not "just IBS".

Gotta go, have to run to the bathroom again! :(
 
Ugghh. I'm having one of those nights where my guts just won't let me sleep. It's just past midnight here and I haven't been to bed yet because of the nausea, cramping, and diarrhea. I feel awful. I came home sick from work at like 10 AM, rested all day, ate a little bit of mac & cheese (usually a safe food) for dinner, but then as I was attempting to go to bed around 10 PM, that's when my guts decided to start the party. I tried to sleep but it was just diarrhea every 5 minutes, as soon as I got back into bed I'd have to get right back out again. So I conceded defeat at least for the time being.

I haven't been to the bathroom for like 20 whole minutes so hopefully it's finally calming down again. I had like 5 episodes of d this morning, and I didn't eat that much today - I don't understand how I can just keep going to the bathroom, like how is there that much volume of stool in me when I've barely eaten and already been to the bathroom a lot??

I guess the upside is, I'm just not going to my brother's birthday lunch tomorrow. Count me out altogether, I'm not setting foot in a restaurant. I'm resting up until it's time to go pick up the car tomorrow afternoon. And I may sit on a plastic bag and bring a change of clothes with me juuuuust in case.

Akgirl, you are absolutely right - you do know your body best, so don't listen to your sister. I've heard similar things from both doctors and family members, but I know I have a legitimate physical illness. Sure, things like anxiety and depression can come along with the illness and/or the symptoms of the illness can be exacerbated by anxiety or depression, but it's not all in my head and it is real and it's not "just IBS".

Gotta go, have to run to the bathroom again! :(

Not sure if you would consider it as some people don't like the feeling, but I bought some of those new Always Discreet disposable briefs for my prep. I actually did not need them, but it was nice to have a safe backup so I didn't ruin my clothes. I wore one to bed since I'd never done the prep before and I didn't want to wake up in a mess. Depends now makes a much slimmer versions, too, that looks like it won't make that crinkling sound. I think they have two now - Fit-Flex and Active Silhouette. I got the Always version because I had a coupon and it was on sale. Maybe it would help for the car ride. :)
 
Keep pushing until you get an answer.

I intend to. I actually looked up other doctors in the same group and found one that specializes in IBD - specifically Crohn's disease - that I may decide to switch to if this current GI doc decides to write me off. My hope is that he doesn't because he's right near my house and I like his nurse, but I want to be taken seriously - not have a few tests and then that's it. The thing that really bugs me is that my mom said last night, "Well, he did give you two scopes as well as the breath test. Maybe it is IBS." I'm really frustrated. I can trade my doctor out, but family should understand. If I've had something for 13 years, I know what it feels like. But if 3 doctors and myself mistake my symptoms for gallbladder disease, then that to me signals that something is wrong that I want to get to the bottom of. I don't want to end everything and have it come back much more severe because I didn't get treated. I truly want some answers, not, "Nope, that's not it, so there's nothing wrong with you except what you already have." :angry-banghead:
 
I intend to. I actually looked up other doctors in the same group and found one that specializes in IBD - specifically Crohn's disease - that I may decide to switch to if this current GI doc decides to write me off. My hope is that he doesn't because he's right near my house and I like his nurse, but I want to be taken seriously - not have a few tests and then that's it. The thing that really bugs me is that my mom said last night, "Well, he did give you two scopes as well as the breath test. Maybe it is IBS." I'm really frustrated. I can trade my doctor out, but family should understand. If I've had something for 13 years, I know what it feels like. But if 3 doctors and myself mistake my symptoms for gallbladder disease, then that to me signals that something is wrong that I want to get to the bottom of. I don't want to end everything and have it come back much more severe because I didn't get treated. I truly want some answers, not, "Nope, that's not it, so there's nothing wrong with you except what you already have." :angry-banghead:
I was diagnosed with Crohns in 1990. Last year , I had pain and they tested me and said I also have ibs. I kept feeling the pain and told my gi about it again . They did it again and found out that I wasn't in remission. So, you are your best advocate.
 
I was diagnosed with Crohns in 1990. Last year , I had pain and they tested me and said I also have ibs. I kept feeling the pain and told my gi about it again . They did it again and found out that I wasn't in remission. So, you are your best advocate.

Thanks. I don't deny that I have IBS. I think it was out of control when I was eating gluten before discovering I am Celiac. Since becoming gluten-free, the IBS has stabilized. There are times that I get constipated, but it's much better than it used to be. I no longer have to take laxatives or fiber pills to get a regular BM. Stress definitely played a part when I first was diagnosed because I have chronic depression and wasn't on the right medication back then. I am leading a great life now. I graduated with my Bachelor's in December and received a GREAT full-time job that I love. I am very happy and my Primal diet made me lose a lot of extra weight. So, my question is, why am I still having these symptoms if nothing else is going on? That's the most difficult question to ask a doctor who I started seeing after the symptoms started and doesn't know my baseline. I wish I could see my old GP without paying a fortune since my insurance does not cover her. My new GP only knows my symptoms, as well, since I started seeing her in April.

Anyway, I just found out that my colonoscopy procedure was 100% covered by my insurance since it is a preventative care test! I was so happy to find that out. I still have to pay for the doctor's time, facility fee, and the nurse anesthesist's time, but it's nice to know I have one less bill, if I'm being positive. :)
 
Another one that's been struggling here! I've actually been away visiting family so that was extra fun! I'm living on antisickness meds the last couple of weeks which is frustrating and not managing to eat much but still getting diarrhoea with a lot of mucus.

Luckily (if there is such a thing) today is Klean Prep day for my small bowel MRE tomorrow so I'm hoping that as I've had a particularly bad couple of weeks it might actually be useful and show something. However, if it doesn't I'm stuck with the diagnosis of refractory IBS. My GI has already referred me to the counselling service even though I'm incredibly sceptical about it actually helping my symptoms! Then in about 10 days I see the dietitian so hopefully they can do something to help too, my GI suggested I try the low FODMAP diet so I've bought the book but I really don't even know where to start with it! But the dietitian should help with that surely?

I can't believe I have to drink another litre of Klean Prep before the MRE tomorrow, I have to drink it in 20 minutes rather than the hour and a half I got today. And I didn't even manage it all in that time, it took me 2 hours to drink three quarters of it :/
 

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