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Ali t, yes, I've had 2 colonoscopies and 2 upper endoscopies, and I had sedation for all 4 scopes. I'm not sure what kind of sedation you guys get in the UK? They gave me a combo of fentanyl (pain med), versed (sedative), and benadryl (allergy med/sedative) and that worked really well. I have no memory of my first colonoscopy and no memory of either of my upper endoscopies. I have a brief and very vague memory of my most recent colonoscopy which was last month - I recall a very vague feeling of something going in my backside, ha ha, but it wasn't painful or anything. I think I must have just barely woken up and felt mild discomfort, then went right back to sleep. No pain, nothing like that. It was like taking a nice nap and waking up and feeling refreshed although still pretty out of it. The sedation makes you forget things for awhile, like with my first scope I apparently asked my hubby the same question multiple times. My first memory after waking from the scope is, I asked him how long I was away during my scope - and he just smiled and said, "And that's the 5th time you've asked me that." :) And with my first upper endoscopy, I have vague patchy memories of getting dressed and being driven home afterwards. When I got home and was a bit more coherent, I complained to my hubby that my GI never came out and talked to me afterwards. Hubby was like, he talked to you for like 10 minutes and you seemed coherent! How can you not remember? But I have no memory of talking with my GI whatsoever. So whoever is taking you to your scope, ask them to pay attention to what the doctor says after the scope, maybe even ask them to take notes for you, because you might not remember due to the sedation.

Chickadee, do you mind sharing what area of the US you're in? I don't suppose you're near any of the Mayo Clinics or the Cleveland Clinic? I've heard good things about both in regards to GI/IBD care in general, although I don't know of anywhere that specifically specializes in ME. I hope you can find something. You could always try posting in the "General IBD" section of the forum and see if anyone else has ME, can recommend doctors, etc.

Thanks for your input about steroid injection & menstrual cycle, too. I had a bit of spotting for a short time today but now it seems to have stopped. Like I said, I'm not too worried and I know I'm not preggo, it's just disconcerting when you're supposed to get your period and you don't, you know? The last time I missed a period was nearly 15 years ago - a good friend of mine passed away suddenly, and the grief stressed my body so much that my period was a couple weeks late (I wasn't on birth control at that time). Since then, I've been on birth control and it's been like clockwork, so I guess that's mainly what's worrying me - the BC should be keeping things in check. I guess the steroid shot overpowered the BC in that regard though! Kind of odd and disconcerting, but not overly worrying.
 
I'm starting to feel the same vague symptoms I felt the night before I went to the ER. Even my mood is the same -- kind of half-manic, almost like I'm rallying before a fight. I haven't pooped in a couple days. (Well, I have, but it seems like it's just been a teeny, tiny bit -- I don't think things have been, ahem, "moving" into the colon for a while.)
My upper abdomen feels really full and sort of stiff to touch, and after a couple days of lots of noise going on in my stomach, it's pretty much gone silent. I can feel my pulse around my bellybutton along with low-grade pain around the same area, plus a little cramping here and there. Mostly I just feel fat and full, but not in my stomach. Right below my stomach. This is exactly how I felt the night before I woke up super sick in Vegas.

Now, because I learn from my mistakes, I know RIGHT NOW would be a VERY GOOD TIME to pound a lot of Miralax. It might make things worse for a little while, but my guess is that no matter what, getting a softer (possible) obstruction to move is going to hurt much less than a harder one.

I'm going to do that, but here's a glimpse into the brain of someone who's gone a little deranged from not knowing what's wrong. I was briefly ready to say "forget the osmotics," down some red meat (seems to trigger trouble for me) and get ready to cab to the hospital my doc works at if last weekend's episode repeats. Just to be like SEE? I'm sick! I wasn't making the thing about the ER in Vegas up!

It's even stupider written out than it sounded in my brain. Bahahahaha.

Annnnnnd I'm gonna go rock that Miralax now.
 
Hey everyone :)

I'm looking for some tea and sympathy :(.....My "IBS" is breaking my heart atm, just been sitting on the loo for 30 minutes (again!), fourth night out of last 7 I've had to get up to the loo and I'm exhausted and miserable!! More mucus and mega pain and I've had all the meds I can have. My joints are on fire, especially my knees? This has been building up again over the last couple of weeks and I'm finding it really difficult to bear and I'm worried my GI will dismiss it as IBS and not give me anything.

I've just realized that I ate 3 choc covered coffee beans (which were amazing) and 2 small squares of Guinness choc (from the Guinness factory in Dublin), could that be what's wrong?

Chickadee I'm sorry I don't know anything about ME but I hope you get some help on your other thread.

BC hope the miralax does the trick and you don't end up having a rerun of Vegas.

Weeze I'm sorry you're having so much pain too, I can't answer your query about how bad IBS can get cos I don't know but I know whatever I have is no pleasure trip lol. I do get most of the symptoms you described though not necessarily all at once. Hope tomorrow is a better day.

AliT, good luck with the prep and colonoscopy, when I had my scope done I stayed awake and ended up watching it with my Dr discussing it with me, I found it fascinating (apologies if that's a bit weird:)), I even saw the darned ulcers with my own eyes cos the doc pointed them out. Hope it goes well :).

Cat I'm glad to hear the injections are helping, wouldn't be sure if it is effecting your auntie Flo or not, I've had a couple of steroids injections in my wrist but never noticed anything? Hopefully you'll continue to benefit from the injections and Flo will be back to normal too.

At least my heat pads are doing their trick and I can feel my cramps easing, they feel like the worst ever period pains, what does your tummy pains feel like to you?
 
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Lizbeth, I hope your stomach is feeling a bit better today. Sorry you have had some rough nights recently. :( Chocolate covered coffee beans could definitely trigger an attack for me, but of course, everyone is different. I can't handle any coffee or non-herbal tea.
 
Lizbeth, I'm with Chickadee, I can't handle caffeine either and sometimes chocolate is problematic for me too. I'm also an herbal tea kind of gal (I just drank a big mug of chamomile!). Caffeine doesn't affect my joints like what you described, but it can upset my guts and trigger migraines for me. With the guts and the joints being bad like you described, it sounds like a flare-up to me. Don't let your GI dismiss it as IBS - ask him why your joints are in on the act, as IBS wouldn't do that. If he doesn't take you seriously, it sounds to me like it's time for a new GI.

Bureaucratic, how did the Miralax go? I hope you're feeling lots better now and didn't end up in the ER? Did your job get affected by the govt shutdown? If so, I hope you're at least able to relax at home and do something nice for yourself in the midst of all this ickyness. Hang in there, thinking of you and worried about you! Please update us and let us know you're okay!

How's everyone else? Anyone else in the US affected by the shutdown? Everybody doing okay? I'm okay, guts are a tad bit iffy and I'm still not sure what's going on with my menstrual cycle (I've had a few wicked cramps but hardly any actual bleeding). The weather is lovely though and I had a really good gym session last night and I'm feeling pretty well overall. Hope everybody is okay too?
 
I cut out caffeine when I discovered it put my blood glucose up and that helps with the diabetes control. Strange thing too, I no longer have the terrible choc craving like I used to, I often wonder if it's my bodies way of stopping me eating something that would hurt me? But last night I completely forgot about the caffeine element, more fool me lol.:rof: won't do that one again.

My rheumy said there was no inflammation going on in my joints and there was no connection to my tum, but I tend to disagree. I'm finding, especially as time passes, that when joints ache more tummy seems to as well and the only time I had true pain relief from my joints I was on pred but that screws up my diabetes. Rheumy said it was probably euphoria that I felt but again I don't agree with that cos I was miserable with awful tummy pain when I was on pred? Oh why is it so complicated? I have been considering a new GI and have even got one in mind who used to care for me at my diabetes clinic, I always knew gastro was his true love and a few months ago he moved to gastro fulltime in a different hospital, I plan to wait see what happens on Monday allotment and then decide.

Thanks Chickadee, sadly my tum doesn't appear to want to settle yet and has been sore all day, I can always tell if I'm going to need to be up during the night and I know it's going to be one of those nights :(.
 
lizbeth - Do you have anything to take to stop the D so you can get some sleep? You need your rest!

Cat - I'm trying to follow your example and get more exercise. I took a walk in the park and rode my bike today. I am getting into disc golf. It's really fun. Basically it's golf with frisbees!

My ANA test came back negative. Another normal test result, woo! Oh well, it's a good thing. I guess I don't have Lupus.

Overall I'm a lot better than I was a month ago. Maybe the Amitriptylne is giving me a little constipation so I don't have loose bms so bad. I just need to quit coffee.... I've heard that coffee can speed up gastric emptying which I think is going on and maybe that's why I have the gurgling in my tummy. I need to be able to stop myself when I wake up because I crave coffee like a fiend. I may be craving for sugar as much as the coffee I think, because I have it with toast and peanut butter :p.
 
Cat-a-Tonic said:
lsgs, going back to what you said about sjogren's causing awful reflux - that sounds a LOT like my reflux. I reflux all the time, but like you said, it's not really acid so much. It's "stuff" coming up my throat but I rarely get heartburn. I can reflux up plain water. I often reflux just from bending over forward - I feel "stuff" pouring up my throat sometimes when I do bend over. I'm on Nexium, a quadruple dose of Zantac, and Tums as needed, and that just barely keeps things at bay. I have a hiatal hernia, which might account for some of the reflux, but my GI says the hernia is "small and sliding" and should not be causing such severe GERD - so why my GERD is so severe is still mostly a mystery. So I'm wondering, how did you get diagnosed with sjogren's, and what other symptoms does it give you besides reflux? And does what I described sound like your reflux?

I also have a question for the women who have had steroid injections, whether for IBD or for arthritis or whatever. Did it mess with your menstrual cycle? Here's the backstory - I'm on nuvaring. I was instructed to insert a new ring on the 1st of every month, and take it out on the 25th of each month. I usually get my period around the 27th or 28th of the month. Well, I got the steroid shot on the 26th, and I haven't had my period yet! I am pretty sure I'm not preggo, and when I googled, it sounded to me like steroid injections can indeed mess with menses. But from my googling, it sounded like most women experienced more bleeding, spotting, breakthrough bleeding, etc rather than skipping a period. But a few did say they stopped bleeding altogether for awhile, so I'm not too concerned. Just wondering if this has happened to anyone else here? If so, how long did it take for your period to come back?
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Sounds exactly like my reflux, Cat. It really does make life a misery when it comes on. Mine comes in flares, so right now it's not flaring and life is wonderful :p but when it comes on it is seriously unpleasant. Anti-acids don't seem to work either.

I'm on the contraceptive implant so I haven't had a period in 4 years, so I don't know if the shot would have affected it.


Weeze2 said:
About 5 months ago my fecal calprotectin came back as 249 (which is high my Dr said) and surely I wouldn't get this score for IBS?
:(
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According to the studies I've read, anything over 150 is likely IBD. This is a study from my GI who feels I have IBD based on my high FCP but can't diagnose exactly what, which is fair.
http://www.wjgnet.com/1007-9327/full/v18/i46/6782.htm

BureaucraticNightmare said:
lsgs -- WOW. I'm really sorry you had to go through that. Seriously. I know how a psychiatric dx can be a scarlet letter on a medical history. For every medical professional who takes the time to look past the label, there's half a dozen or more who seem to dump every possible mental illness into one big-bucket of crazy. Worse, they treat everyone in that bucket the same way -- overlooking the reality that a) mental health problems often occur secondary to physical problems, and b) different psychological issues have radically different implications in terms of the way someone experiences and communicates physical symptoms -- whether those symptoms have anything to do with the fact that they take crazy pills or not.
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Yep, I'm just glad I got that letter from the psychologist. Although even after that the GI who suggested it was psychological still was saying, your response to steroids is psychological, your high calprotectins are false positives. Sacked him pretty soon after!

Anyway, I have an update. Saw my rheumatologist yesterday and I take back everything I said. I explained that my joints and stuff were getting worse and he feels, sadly, it's ankylosing spondylitis. So he says he thinks it's going to be a wee surprise and it will be AS with IBD. So, an MRI of my spine and pelvis is ordered and he said even if it comes back negative, it doesn't mean I don't have it, and also no test is definitive.

He was also thoroughly unimpressed with the GI I just sacked and his attitude. Particularly about my steroid response, which he said was psychological. So he wrote on the letter to my GP steroid responsive abdominal pain and underlined steroid responsive like a million times.

So I've to call him 10 days after the MRI for results and to discuss medication choices - aza if no inflammation on MRI, sulfa if inflammation on MRI. To be honest this is what I've always wanted, for someone to say, this is what is wrong with you even though it's still a 'probably' and this is what we need to do to treat it. But I'm so scared of the side effects!! But my rheum is seriously keen on immunosuppression now, he doesn't feel it can be controlled with anything else, and he says if it's done properly it might reduce the risk of cancer that comes with sjogren's.

So looks like I have ankylosing spondylitis :( Bit of a depressing day!
 
Awww, lsgs, I'm sorry to hear it's looking like AS. :( But that does sound like good news that you've got a treatment plan either way. I know BozzyLozzy is on sulfasalazine for her joints, and I believe she said it's been helping her tummy as well. I haven't been on either med myself so I don't have any personal input for you - but I hope it's not AS and that whatever treatment you go on works really well.

Back to the subject of reflux, mine is going nuts right now! I don't know if it's because of the steroid shot or what. Last night I tried lying down to go to sleep, but I could feel acid come all the way up to my mouth. Then the nausea hit and I had to get up and go take some prilosec and some Zofran. Once those kicked in, I was able to lie down again, but I kept waking up and didn't sleep well at all. I felt a bit better this morning, so I ate a little breakfast just now. Wow, that was a mistake! Time for another Zofran! So nauseous, I feel less refluxy but more nauseous than I did last night. This is hideous, I feel very unwell. I had a few okay days, I finally got an apparently abbreviated version of my period, and now I feel awful. I had bad chills last night too, which I sometimes get in a flare. But with the steroid injection I don't think I could be flaring worse? I really have no idea. I just hope this nausea goes away soon!

Oh, and the kicker? I've been having hip pains yesterday & today. :p I don't know what that steroid shot did, but it seems to be doing more harm than good. This is particularly confusing because my guts respond really well to oral steroids. Maybe this is the crash after the steroids have worn off? After I came off of pred the first time, my symptoms came back with a vengeance, so maybe this is that happening? All I know is, my hip isn't super happy and neither are my guts, I feel awful.

Moogle, I'm glad to hear I've inspired you to be more active! :) I try to do something active 5 or 6 days a week, including lifting weights 3x a week. Even if I just walk my dog or do 30 mins of yoga, I usually feel a lot better afterwards. If I can get this nausea under control then I will be at the gym tonight to lift weights. I hate when my body forces me to have to skip a gym session, but that might be happening today. Anyway, have fun exercising! I have heard of disc golf, my brother used to play that pretty regularly and there's a disc golf course here in town that I sometimes ride my bike past. It looks like fun!

As for coffee, yeah, I recall that even back before I got sick, I'd have the ocassional coffee but it'd always go right through me. I think part of it was, I liked getting "fancy" coffee with whipped cream and milk and stuff, and I am sure all that dairy was part of the reason I'd have some d after a coffee. But I think the coffee itself was also partly to blame. When I got sick, I started getting migraines, and I realized at one point that caffeine was a trigger, so I gave it up altogether. No soda (not even caffeine-free soda, as the carbonation bubbles seem to upset my guts too), no coffee, no caffeine. I drink water, juice, smoothies, herbal tea, the ocassional sports drink. If I'm feeling really crazy I'll have a lemonade or an orange juice. :p And every few months or so I'll have a teeny tiny glass of white wine if I'm feeling risky. It's sad that wine is safer for me than coffee is!

Lizbeth, I think you need a second opinion on the joints. Mine are just like what you described, I get pain in most of my joints when I'm in a bad flare. My guts were in remission for about 2 years, and during that time my joints were quiet. Even my bad hip didn't give me pain during that time. Then, last winter the joint pain came back and my hip started hurting again, and a few months later my guts started acting up again too. I'm only 33, my GP says I'm too young for osteo arthritis, so he feels that surely the guts and joints must be related somehow.

Did you actually experience euphoria from pred? If you did, you'd definitely know it. I had euphoria the first time I was on pred - I felt like I wanted to bust out into song & dance all the time, I felt like superwoman, I felt so unbelievably GOOD, like I was just smiling all the time. But my symptoms went away too, no nausea, no d, nothing, so I know the pred was working and it wasn't just the euphoria talking. Anyway, good luck with the new GI, that sounds ideal if the doctor worked with you in regards to your diabetes in the past and is now a GI!

Oh, phew, I think my Zofran finally kicked in. Sometimes it takes 20 or 30 mins to start working. I feel somewhat better although still somewhat nauseous (it's a nausea I can now deal with!). It took the edge off at least and I feel like I can function now.
 
Cat there is something called a 'post steroid flare' where a couple of days after things worsen and it's due to inflammation around the injection site or if it's into the joint itself the steroids crystallise or something causing pain. I don't know that much about it but you might want to look it up.

This AS thing really does suck and my husband is making it no easier! He just cannot deal with the fact I'm sick at all. I don't even act like a sick person, I really do try to make the best of everything. Yesterday we were lifting the roof rack onto the car and I said, purely as a joke, can't lift it got a spine condition (I had just been told like 30 mins before so I felt the need to let off a bit of steam and joke about it) and he snapped back, totally angry, stop playing it up or I'll trade you in for another model!! I was SO angry and still am. It's very lonely with no support!!
 
Thanks lsgs, I hadn't heard of that before. I did a quick bit of googling - I'm not sure if I have "post steroid flare" as google seems to indicate that it usually happens 24 to 48 hours after the injection. I had my injections on Thursday afternoon, so close to a full week ago. Well, hopefully I'm just an atypical case of post steroid flare and this will end soon. Although I didn't see anything about nausea either when I googled, it just said there might be increased pain at/near the injection site. Hmmm. Will have to look into further.

And wow, your husband sounds like a piece of work. I recall you've vented about him before. I think I've told you this already, but my hubby was similar when I first got sick. He didn't believe I could be sick all the time, he thought I should just "deal with it" or ignore the pain & symptoms, he would get very exasperated if I asked him for any help (there was one time I asked him to go to the pharmacy for me to get me a thermometer, as I had horrible chills and I wanted to see if I had a fever - he sighed and made a big deal out of what a hassle it was, but he went and bought one - it turns out he bought a dud thermometer with a bad battery, so I had to send him back to the pharmacy to return it and get a working one. I thought he was going to blow his top!). Then, it all changed - he started having symptoms too. Nausea, vomiting, lower abdominal pain that could come on out of nowhere and could debilitate him and force him to cancel plans at the last minute - sound familiar? ;) It turned out to be kidney stones (the abdo pain was apparently referred kidney pain). He had a large stone that his doctors inexplicably wanted to see if it would pass on its own. It did not pass (it turned out to be impacted), so hubby spent 6 months in pain before they finally operated on him to remove the big stone. After that experience, he understands much better what it's like to have a chronic, painful health condition, and he is so patient and understanding and helpful now! I was considering divorce up until he got kidney stones - I firmly believe they saved our marriage.

So, in my experience, your husband is not going to change his ways unless he experiences something similar for himself. Some people just cannot put themselves in another person's shoes when it comes to things like chronic illness, they cannot wrap their heads around it. I know that's not really an answer, you can't make your husband get sick, but for your sake I kind of hope he does. Maybe that's mean, but it's literally the only thing that got it through my hubby's thick head. :p
 
Wow, miss a couple days and I was pages behind! Finally all caught up.

Isgs, I'm frustrated for you with your husband. How long have you been married? I wish my husband could just sit down and chat with these other guys about how to be a supportive, loving partner. He's very good at it, been right there with me through 15 years of back problems, 18 years of belly problems, 10 surgeries and now a brain tumor. I think he is a saint in dsguise. Every so often I ask him if he is getting sick of all my medical stuff, and he always just tells me that he's glad I'm still here. I"m so sorry your guy isn't being supportive.

Cat, it's interesting that your hubby was able to gain perspective from a chronic pain experience. Good for you that he's more understanding!

Beaureaucratic, I hope things are going okay for you with the shutdown in full effect.
 
Hi everybodyyyyyyy!!! Man, am I rubbish forum monitor or what?!? Lol... I hate the fact I havent been on here properly for a long time :(
As some of you know, I have started a new job that is full time.. and because it is an apprenticeship, I have LOTS of college work to do too! Boo! Haha..

Lsgs - sorry to hear about the tiff with your hubby :( I do what you do all the time when ive had bad news - just make a sarcastic jokey comment, but it makes me kinda laugh when I do it.. which is why its a good way to let off steam! That sucks about the AS :hug:
Im on sulfasalazine like cat said. Worked great for my joints.. it takes a while to build up the dosage, so you wont see results straight away. And once we sorted out how I took the tablets (better at 3 times a day instead of 2 in the morning and 1 at night)... then my guts have settled down too!!

Cat - I was told about a a possible "post-injection flare"..it is common for it to feel worse at first before it settles down. I was lucky that I didnt get that and it worked straight away! Xx
 
Hi,
I'm devastated been in tears all day. Had the colonscopy which was awful and nothing was evident not even sure if he took biopsies. My GP says thee is clearly something wrong of auto immune origin as my b 12 and iron is low again despite recent infusions, low vit D, severe joint pain and sickness and cramps. I feel lost and like I can't go on anymore like this now. I really don't know what to do.
 
I'm so sorry to hear that Ali. at least it sounds like the doc is on your side and on the lookout for finding out what is going on. I hope they find something out to help you soon.
 
mccindy you are so lucky. We have been married for two and a half years. It is exhausting having to hide it and try to do things when I don't feel well and keep up a front when all I want to do is collapse into bed!! Haha. He is insanely unsupportive with my health. He cannot cope with it at all so he would rather pretend it doesn't exist. But that is quite typical of his family.

Ali t have you had bloods to test for autoimmune disease? Things like rheumatoid factor, anti-ro, anti-la, anti-dsna, ANA....
 
Hello everybody....its a miserable wet day here and I have to go out, though my guts are saying stay home lol. As expected was up again last night but this time it was my joints that caused the problem more so than my guts :(. This morning I've had a few mad dashed to the loo (tmi?) but it's calmed a bit now, just wish I could get to my GI appointment.....

Anyway I see that a lot of you are having troubles, that's so miserable for you. AliT, I'm really sorry the colonoscopy didn't go well, fingers crossed that biopsies were taken and that something will be seen and thank goodness your gp is being supportive, hopefully something will transpire very soon and you will begin to feel better.

Husbands are funny beings, definitely not like us. Mine is no different, I've been off work now nearly 3 years and I think for a good part of that mine didn't really believe I wasn't well. It wasn't until I went into hospital before Christmas last year that I think he actually realized how I was? He really looked like it hurt him that I was sick. I have realized during 24 years of marriage ( yup big silver one next april!!) that he is fantastic in a crisis but rubbish at some of the day to day stuff, I mean I'm a golf, bike and camera widow, all of those things seem to take priority over other things and he spends soooooo much time doing them..... suppose he's probably not much different than other guys? Isgs I can understand how hurt you must have felt, men just don't seem to be able to cope stuff like that, if I tell mine something important he will quietly listen and then shortly after say "just going to walk the dog or out on the bike" or something that will get him out of the house, it seems to be his way to go away and think about things? Hopefully with time you both will be able to help each other so you don't have to hide how you are feeling anymore. I wouldn't wish pain on anyone but sometimes I think that if others could walk in our shoes then our support might be so much better? I guess like your husband Cat, he seems to be great and McCindy can I send my husband over to yours asap please lol.

I do hope that you all feel better soon , sorry if this is a bit slushy but I just wanted to say how much I appreciate the support and friendship on this thread :). Hugs to you all. :ghug::ghug:
 
lizbeth, I do sometimes wish that my husband could give advice to all the husbands out there who have issues. I think in isgs's case, it probably doesn't help that they haven't been married that long, so it's probably hard on her husband to try to understand the rapid changes that have happened since they were first married. Unless he was aware of medical issues before they got married and in that case he should definitely be understanding toward her!
Congrats on your big upcoming 25! we have our 24th this March. Kind of funny to think we've been married longer than I was single! Since I got married at 17, my entire adult life has been a married life. I woulnd't change that though, I have Mr. Close-to-perfect.
I hope the rain isn't causing you too much pain today. It's rainy here today too, and looks like it's going to be for about the next four-five days!

Isgs, I hope that your husband eventually realizes that his love for you should come through as support and that he should be grateful you are still in his lfe.
 
Good news, all in all! This shutdown has a silver lining. I may not be getting paychecks for a while, but I've got great weather, time to work on all sorts of DIY projects, and a primary care doctor who actually gives a hoot. Things are looking up.

Before my appointment Tuesday, I'd only actually seen this GP once (it'd been a long time since I went to a doctor), and she'd given me a pretty clean bill of health aside from mentioning that I absolutely needed to see a gastroenterologist for the diarrhea and rectal bleeding I'd been experiencing. Despite the fact that I'd only had one appointment with her, I've been really impressed by her general responsiveness. (Just one example: When I said I wasn't wild about my first GI, she got me an appointment with another one the next day.)

Actually getting to talk to her again, in person, made me feel SO. MUCH. BETTER. She's the kind of doctor who actually bothers to read over patients' files before appointments, remembers histories, and genuinely listens.

I'd already sent her a message detailing the non-GI symptoms I'd had lately. Before we went over them, and I decided to say up front that yeah, I know this is probably IBS but that I've got weird physical stuff going on, and that I wanted her to be straight with me: If this sounds psychosomatic, let me know. I can totally accept that -- and I can get the right therapy and medication to deal with the core of my problems.

To cut to the chase, she seemed pretty surprised with a lot of my GI's conclusions. She asked if, in diagnosing IBS, he'd explained the bleeding. When I told her he hadn't -- that he'd said the polyp wouldn't have caused it and that my one relatively minor hemorrhoid could "possibly" cause some blood (but not the darker stuff), she shook her head and seemed kind of surprised.

Anyway, I'm glad I kept track of fevers when I've noticed them, along with a few notes every day when really noticeable stuff's happened. I was able to give her a detailed account of symptoms and pretty narrow/specific time windows in terms of when things started. I also mentioned that I see a psychiatrist regularly who agrees I'm very stable on my current medication regiment. On top of that, my abdomen was pretty clearly distended and my ankles were totally swollen.

Long story short, this GP says I'm not nuts after all! She referred me to a rheumatologist (appointment's in a month) and told me to hang in there. She said fevers, new headaches, patterns of oversleeping that make me miss work, night sweats, and the fact that I'm still getting blood in my stool point to physical problems that need to be explained. She said it's possible some of my symptoms are heightened sensitivity because the more alarming symptoms have caused some (reasonable) anxiety. But there's something else going on and she thinks a rheumatologist might be able to "stop telling you what you don't have and figure out what you do have."

So hey. We'll see. It's nice to be reminded that my main doctor's rock solid. The most impressive thing? She didn't even seem the least dismissive about IBS and reaffirmed that if that's what's causing all the trouble, we'll find a way to fix it.

A doctor who just wants you to feel better? Who'd have thought :)? Feeling very encouraged. It's amazing how even the same information can affect me totally differently if it's presented by someone who seems like they give a hoot.

Oh, and for those who asked -- the Miralax worked. Sure, it took three days, but I'll take a three day wait over 6 hours in the ER any day.

Quick question though: Do any of ya'll ever notice Miralax BMs leaving a thin, kind of oily/soapy looking film on the water? I'm noticing this, and I'm wondering what causes it?

Did I miss anything else? I have trouble keeping up with this thread!
 
Ali t I would definitely be looking to see a rheumatologist if you haven't seen one already.

mccindy, he knew before we got married that I had health problems - I had already been diagnosed with sjogren's and the abdominal pain was pretty bad. I would however say things have worsened. We have been together for 7 years and have known each other for 11!

BeauracraticNightmare - Rheumatologists are excellent doctors. I have met 3 now and they are the most caring, empathetic and understanding doctors you will come across. They genuinely want to help, and they genuinely want to see you get better. Long term if you build a relationship with them they will fight your corner. I can't say that for any gastro I've seen.

It amazes me how gastros, when they 'diagnose' IBS that mystical condition, they just leave you to deal with it as if it's acceptable.
 
lsgs -- Yeah, IBS might as well be an acronym for "It's Been Swell" because it really does feel like a brush-off. That said, I don't want to be *too* hard on my GI. I mean, if I look at it from another angle, he's continued to run test after test to make sure nothing's been missed, and he's given me his hunch DX in the meantime. Considering I've had IBS my whole life, he's not wrong. I just think there's something else afoot too.

Speaking of things that are afoot, got some lab tests back. I'm negative across the board for all the various IBD antibody tests, but there's some other slightly off-kilter stuff going on.

My LDH and serum lipase are both a little high (well under 2x the normal upper limit but still flagged as elevated), and my A/G ratio is elevated because my globulin level is right at the bottom of normal. I know my CT showed normal kidneys, liver and pancreas -- but because of the abuse I put my body through for several years by drowning it in alcohol, it'll be quite some (more) sober time before I don't fear the worse when there's anything weird afoot those organs.

One more question for anyone wise: How exactly to antibodies work? Isn't it related to immunoglobulins, and if that's the case, would a borderline low immunoglobulin affect antibody test results? What about CRP? It's weird to me that I had a high LDH (which I guess indicates tissue damage/death?) in a test that came a week after I had a CRP of almost 0...
 
lsgs said:
BeauracraticNightmare - Rheumatologists are excellent doctors. I have met 3 now and they are the most caring, empathetic and understanding doctors you will come across. They genuinely want to help, and they genuinely want to see you get better. Long term if you build a relationship with them they will fight your corner. I can't say that for any gastro I've seen.

It amazes me how gastros, when they 'diagnose' IBS that mystical condition, they just leave you to deal with it as if it's acceptable.
Click to expand...

I'm not undiagnosed (any more - but after so many years being undiagnosed, I still like checking this thread), but found this very interesting. I've heard from so many people who get dismissed by gastroenterologists as having IBS - and that gastros always manage to make it sound like an insult. But I haven't heard nearly so often that rheumatologists are understanding. I've only seen one, but she was the best doctor I'd ever seen, so it's interesting to see that her being so good might not have been an anomaly in her profession. :) I wonder why that is. :confused2:

I used to think gastros didn't like me because I'm so thin and they always thought I was trying to claim having stomach problems as a way to hide being anorexic (which I wasn't - I was thin because I had stomach problems), but the more I read the more it seems that even people who aren't young underweight females that they want to throw anorexia diagnoses at have bad experiences with gastros, and I think even if my weight was healthy they'd have found some other problem with me.
 
UnXmas, I do think you are correct about GIs and their dismissiveness toward IBS. That being said, I do feel fortunate that the GI I am seeing now, although he is calling my belly issues IBS, is not being dismissive about my pain and issues. He has a new medicine he wants me to try and also wants me to check back in with him occasionally. Definitely does not feel like a brush-off.

Bureaucratic, I've noticed the same thing with Miralax. I'm not sure what it's from, but it can be a bit disconcerting, can't it?

Isgs, it's sad that your husband knew you had medical problems before the marriage and still doesn't get it. Have you thought of some couples counseling? Maybe there's something he's not telling you or discussing about why he treats you the way he does. Also you'd have a controlled environment with a moderator to help while you are able to tell him how you feel about the lack of support. I hate to think of you going through what you are with the added stress of a strained relationship to boot.
 
UnXmas said:
I'm not undiagnosed (any more - but after so many years being undiagnosed, I still like checking this thread), but found this very interesting. I've heard from so many people who get dismissed by gastroenterologists as having IBS - and that gastros always manage to make it sound like an insult. But I haven't heard nearly so often that rheumatologists are understanding. I've only seen one, but she was the best doctor I'd ever seen, so it's interesting to see that her being so good might not have been an anomaly in her profession. :) I wonder why that is. :confused2:

I used to think gastros didn't like me because I'm so thin and they always thought I was trying to claim having stomach problems as a way to hide being anorexic (which I wasn't - I was thin because I had stomach problems), but the more I read the more it seems that even people who aren't young underweight females that they want to throw anorexia diagnoses at have bad experiences with gastros, and I think even if my weight was healthy they'd have found some other problem with me.
Click to expand...

I tend to hear positive things about rheumatology specialists too -- but it makes sense when you think about the kind of illness they treat and the common factors a lot of those illnesses share. The kind of systemic and connective tissue problems that prompt a doctor to refer someone to a rheumy are often really vague and can require some *serious* diagnostic jiu jitsu to pin down, much less keep under control. Plus, isn't one of the number one presenting features in rheum. disease chronic physical pain?

My hunch? If you're in medical school and decide rheumatology's the way you want to go, you know from day one you're going to confront a lot of frustrated, tired, sick patients who've been told they "just need to get over it" more than once. You specialize in people who hurt but don't know why -- or if they do know why, they've typically got a lifetime of symptom management ahead of them. Anyone who knows that's what a typical day on the job is like and thinks,"Yeah, that's a job for me" is probably a rockstar in the people skills department. And they've seen enough people with underlying physical disease causing some pretty weird problems to know that even if there's a patient with somatic issues at play, the pain is real and they need help.
 
Hey guys. having a rough day again. Went to occy health. They were dead nice. Unfortunately my belly doesnt want to play tonight. Wondering if a jacket potato might be safe to eat. Not eaten in a few days. Would like something to see if that helps x
 
I'm here. I've had a bad few days! I have to be the one dissenter on the whole rheumatologist thing, because my rheumy pretty much sucks. I think I'm still having side effects from the steroid injection. Ever since Tuesday night, I've been having wicked reflux, nausea, hip pain, and my menstrual cycle is still all messed up - oh yeah, and my bad hip hurts worse than it did before the injections. I emailed my rheumy asking if this was normal or what I should do, and his response was basically, "This is not normal, I don't know why you're having these symptoms, maybe follow up with your GP?" Ugh! That was his response after my MRI came back normal too, he said I should follow up with my GP and maybe go back to physical therapy. He's always clueless and shuffles me back to my GP. Like my GP is going to know why everything went crazy after I got a steroid injection? Rheumy is supposed to be the freaking specialist here but he doesn't know anything. My GP is good but he's probably not going to know what's going on either, so I guess I just get to deal with this and hope the steroids work their way out of my system soon.

So yeah. I took a day and a half off sick from work to try to recover from these icky symptoms but they're still hanging around. When I got to work this morning, I was feeling so nauseous. My boss took one look at me and said, "Gosh, you're pale today!" So I guess I look as good as I feel. :p Here's how ill I am - I haven't been to the gym since Monday! I hate missing gym sessions and I really hate to miss a week or more. I know I'm not feeling well enough to try working out today (I'm kind of light-headed and still pretty nauseous and refluxing, so the gym is just not a good idea today). I might try to do a light workout tomorrow if I'm feeling better than I feel today. Just gotta play it by ear.

Bureaucratic, I haven't noticed that happening with Miralax specifically, but I have at times had an oily film floating on top of the water in the toilet. It's usually orange in color, it's separate from the stool, and it's very odd! Apparently that is undigested fat - when it gets warmed up by body heat, it turns into a liquid so that's why it looks like an oily film. Maybe the Miralax made whatever fat was in your system pass through you too quickly so it didn't digest? How are you doing today, feeling better at all? And I hear you on the DIY projects - during the time I spent home sick from work, I laid on the couch, watched the entirety of season 3 of the Walking Dead, and worked on crocheting a blanket (I didn't finish it, but I got close!). I have some sewing projects I need to get going on too.

How's everyone else? I hope we all can have a nice restful weekend. Big hugs to all!
 
Hi guys,
How is everyone? I had some bloods done today and now being sent to a rheumatologist what do they do? My GP also sent me for an x ray of my hand today which I have no idea why as my joint pain is knees and shoulders mainly. Symptoms are pretty bad at the moment lots of tiredness , sickness, pain in my back and cramping stomach. I just want a blooming answer now I'm weary with it.
 
I'm sorry to hear everyone is having such a rough time of things! My belly has been up and down this week as well, with bright spots and occasional pain and cramping. It's been this way since I took that single dose of Lactulose. I called the GI's office today and left a message about what happened and that they can now report to the insurance company that the Lactulose failed and hopefully I can start the Linzess sometime soon. And hopefully that stuff helps too!
Mainly I'm starting to get a little nervous the MRI of my head I have next Friday. It's my first one since my craniotomy and tuomr resection. It should be too soon for any regrowth to be showing up, so hopefully all looks good with no residual blood and beginning scar tissue formation. If that is the case, I can hopefully start to wean off the Keppra - which then gives me the added stress of hoping I don't have any seizures! My hubs thinks the reason I'm so tired all the time is that my body is struggling with not only healing from brain surgery, but also dealing with my IBS symptoms and my back issues as well. Darn old body. Well, I still wake up every morning and that's a very good thing!
 
Ali T - im glad you are being sent to a rheumatologist. . They treat people with Auto immune illnesses such as IBD and rheumatoid arthritis...they also tend to test you for weird and wonderful illnesses that most have never heard of! it was my rheumy that put me on the sulfasalazine.. and he was great. Good luck!
 
Cindy, that sucks that you're still having side effects from that darn lactulose stuff. I hope the side effects go away for both of us soon so that we can at least get back to our baselines. I know I can deal with the everyday type stuff that my body throws at me, you know? It really sucks though when there's a lot of symptoms happening on top of that. And I swear, doctors never warn you about side effects! I usually try to read the info sheet that comes with meds, but in the case of the steroid injections, it was just done in the rheumy's exam room and I waasn't even told what kind of steroids nor was I given any written info. I think I'm going to email my rheumy and ask what kind of steroids it was so that I can at least do more in-depth googling. And I'm not going back to that rheumy again, no way.

Ali t, I would ask the doctor's reasoning behind the hand x-ray, that's very odd. Do you have any disfiguration of your hands/fingers - anything like clubbed nails? I know the hands is a common spot for some types of arthritis to manifest in, but if you don't have any hand pain/issues then that's really odd! Do you know what bloodwork they did?
 
Hey everyone, I'm tucked up in bed with my heat pads on feeling a bit sorry for myself (again you probably say) ,lol. Different reasons this time. It's my daughter's 21stst today and cos she's away at uni I didn't see her :(. My tum is still not good and joints are on fire. Sorry that others are having a miserable time.

Akiva did you manage the baked spud? How are you feeling now?

I'm not a fan of rheumy atm, I paid privately to see mine and feel really let down, he said my joint problems weren't related to my tum and left it at that. That was in March, twice I called his secretary and both times I got no reply from him. Cat I'm with you mine sucks!!.

How will the linzees help you Cindy? I read that is a stool softener and is used as a treatment for IBS, is this correct? I find it weird that even though I go at least 4 times a day I have to take a laxative of some sort to go, does anyone else have to as well? I'm keeping my fingers crossed for you for next Fri Cindy and hoping it all goes well.

Hope you all have a decent weekend :) :ghug:: :ghug:
 
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Yeah I've managed the spud and some cocodamol so feeling less sorry for myself now. Happy Birthday to your daughter. Its a shame you couldn't see her, but when you do youll be so glad to see her. Me and mum get on so well now we dont live together. Honestly like best mates. We didnt get on too badly when I lived at home. Just didn't talk that much x
 
Hey everyone. I'm feeling down tonight. I actually quit caffeine today and I've been trying to for a long time. It helped me feel better on my stomach all day until an hour ago.

I feel like a dummy cause I want to gain weight. I ate 3 meals and had two protein shakes today. Something didn't agree with me, or maybe I ate too much and had a case of D tonight. It wasn't severe but it's like everything I ate went through me.

This morning I felt motivated to get well. I had acupuncture this morning and it was really nice. I don't think it's enough to heal me. I may need more treatments. Either something in my diet other than caffeine is triggering my "ibs" or my stomach is just screwed up. I'm glad I can come here and talk about it, because none of my friends or family understand.

I'm going to get some sleep and take it easy on my diet tomorrow.
 
Well her I am it's 3 am and once again I'm sitting downstairs, joints again really sore and I couldn't get any sleep so I thought I'd come down for coffee, decaf of course. Moogle when I changed to decaf I did it slowly, one cup at a time and didn't notice any problems changing, maybe your tum was upset cos of too many changes at once? I'm sorry that you've had a mistake day :(.

Thanks for the birthday wishes for my daughter Akiva :). I think I over compensated on the presents cos I wanted her to have lots of nice things so she would still have fun, she said it was so exciting. I sent a very large box of goodies over to her with unibaggage filled with gifts and goodies and sweets, I also put in 4 chocolate hearts for her to find, 1 for each of us home that miss her :).

Going to the opening of an art exhibition later so hoping tum behaves itself, fingers crossed.
 
Hey akiva. I'm feeling better tonight. Thanks for asking. :) I'm tired of worrying about my stomach problems. I need to stick to safe foods, probably low fat/low fiber. Sometimes baked chicken breast gets old. I started marinading more and it helps a lot for flavor. I'm not sure about gluten, but I may try to go without if nothing else helps. Diets suck :p

I'm going to watch some baseball playoffs tonight and play some video games. Nothing too special this weekend.

How is everyone else?
 
Well the art exhibition was.........interesting. To be honest I didn't like any of it, it was too contemporary for my taste and my husband said the wasn't good either lol, but hey it was a trip out.

My apologies Moogle, in my last post it should have been miserable day, not mistake, hope I didn't offend you :ghug:.
 
I'm ok, Just waking up. *yawn* Stomach is settling down. I'm going to do some cleaning in the house today. I need to find something fun to do! It's too nice outside to stay in.
 
I did cleaning yesterday. managed to mess up in the kitchen though, used one of those oven pride cleaning things, where you put the metal racks in the bag with the acid overnight. did that and the bag has left a mark on the unit. the writing from the bag has imprinted itself, it quite clearly reads CAUTION backwards. think that's my deposit for the flat out the window :p
however the rest of the flat looks sparkling :)
 
akiva said:
I did cleaning yesterday. managed to mess up in the kitchen though, used one of those oven pride cleaning things, where you put the metal racks in the bag with the acid overnight. did that and the bag has left a mark on the unit. the writing from the bag has imprinted itself, it quite clearly reads CAUTION backwards. think that's my deposit for the flat out the window :p
however the rest of the flat looks sparkling :)
Click to expand...

Oh dear, try I little bit of bleach on it for just a couple of minutes, then wrote of and rinse, it should take it off but be warned leave it too long and it will strain the work top yellow :) :) a yellow spot might look better than `caution`? Lol. I do hope you manage to get rid of it.

Thanks Moogle :).

Went to visit my dad today and had a nice time. Tum behaved too. More surprised at my dad behaving than my tum ! I did no cleaning :). Got my dreaded GI appointment tomorrow, heaven only knows how that will go.
 
That's good you had a nice day lizbeth. I'm trying Questran again. I'm not sure, but I think my gallbladder may be the cause of the IBS.

Here is a video I saw about it. It's called Habba syndrome. If the Questran helps, I'll ask for my gallbladder to be checked with a HIDA scan.

http://www.youtube.com/watch?v=xQ79_D3Hq7A

How is everyone else? Cat, feeling better?
 
Hi Everyone,

I’d like to say thank you in advance to anyone who takes the time to read this, even if you don’t reply (I know it will be long to read and I appreciate it if you took the time to read it). I’m really in desperate need of some advice/feedback. Quite frankly I don’t know what’s wrong with me. I’m not even sure I have an IBD. I’m kind of hoping some of you might be able to let me know if on the surface my situation sounds like an IBD.

During my last 2 years of high school I had a dramatic change in my bowl habits. I went from regular movements to “the snakes”. I never had a regular movement. I was trapped in the bathroom sometimes for an hour or more. I continued to be healthy though. I lifted weights and ran a couple miles per day.

This continued to be my situation for the next 5 years. Shortly thereafter I started having intense diarrhea every time I ate. Some of the time it would be particularly intense and I would eve bleed. A couple times the pain in my gut became so bad I blacked out. Once around this time my parents called for the paramedics and by the end of the day I went to the ER. They gave me some stuff for inflammation and sent me on my way. Sigh.

My family doctor seemed to think it was IBS and that I just needed to have less stress in my life. Of course I said getting all this diarrhea under control would go a long way to do that. He said it was a symptom of the stress and not the cause.

After about two more years of this I started seeing gastroenterologist. I had blood work, stool tests, Upper GI series, and a colonoscopy. Even though I was still sick as a dog the tests all came back negative. They said no IBD, no celiac, no bacteria overgrowth, best GI system we’ve seen all month. We don’t know what to tell you. I felt so disillusioned. What to do.

About 3 years ago someone mentioned gluten intolerance and suggested an elimination diet. So I tried eating just white rice, chicken and water and I was still sick. Soon we tried antibiotic free chicken and two days later I was regular. First time in about 20 years. I tried eating pork chops and white rice and got sick again. So we tried antibiotic free pork chops and again I was regular.

So then I was really excited (bouncing off the walls). Then I tried eating a pear and I got so sick. I had so much diarrhea and again bled. I was in a lot of pain but didn’t blackout.

I’ve been able to eat a few other things but not much. Here is my complete list of what I can eat:

Water
White Rice
Hellmann’ Light Mayonnaise (mixed with the rice and meat)
Antibiotics free chicken, pork chops, roast beef, steak
2% milk
Nesquik Chocolate
Breyers Chocolate Ice Cream
Krogers Chocolate Syrup
Baked Potato
Blue Bonnet Butter
Rice Crispy Cereal
Swiss cheese


Things I have eaten that immediately made me sick:
Any meat that isn’t antibiotics free
Apples
Pears
Cheerios

But if I eat anything else I seem to be sick within a few hours. Popcorn, fast food, chicken noodle soup, peanut butter sandwich, potato chips, crackers, anything.


I am drinking milk and eating ice cream like they are going out of style and have picked up an alarming amount of weight. But for my breakfast, lunch and dinner I am eating rice with mayo and one of the meats listed.

When this is all I eat I am exhausted. I tried taking a multi vitamin but I get sick whenever I do.


If I eat anything off my list I am sick shortly thereafter (even if the vegetables are cooked).

I can’t take this anymore. I am missing out on so much. I am tired all the time. I sleep all the time. I feel weak. Just walking up the stairs are a chore now. I know I’m no spring chicken any more but even my 90 year old grandmother is getting around better than me.

But if I eat anything else I am so sick with diarrhea and it hurts. If I thought someone would take out my lower intestine I would be tempted to do it (and yes I know that would suck).

So with all this out there, does this sound like an IBD to any one? Does the fact that I can’t eat meat that isn’t antibiotic free sound like something to anyone? Does anyone have any ideas on what could be going on with my GI system if it isn’t an IBD? Please, please don’t say IBS. I’ve never read about anyone collapsing in pain from IBS. It’s got to be something.

Thank you for any feedback or guidance you can provide.

Steve
 
Hi Steve,

You've been through a lot. I'm not a doctor or nutritionist, but here is my advice from experience and learning from others:

Blood in stool is NOT a symptom of IBS. Your doctor should help you find the reason behind your symptoms. Is the blood in the stool or in the toilet? A reasonable question to ask your doctor is if you have hemorrhoids. They can be treated easily. You can get them from chronic diarrhea.

You may want to cut out the dairy for several reasons.

1. The milk and ice cream have lactose, which is naturally hard to digest, even for healthy individuals. It can lead to diarrhea.
2.You could potentially have sensitivity to the whey or casein proteins in dairy.
3.You could be sensitive to the fat amount in it.

Also, you may want to consider that the mayo, butter, pork chops, and steak are high in fat and can be a trigger for many conditions: IBS, IBD, Celiac disease, dysfunctional gallbladder, pancreatitis, and the list could go on.

Please try to eat or drink what you can to keep your weight and energy up. I'd suggest trying a low residue diet/low fat diet. If you look it up on this website, it has good information on diet and nutrition. You may also try 5 or 6 small meals a day which could help. I'd stay away from vitamins for now, some vitamins can make diarrhea worse like C and magnesium.

Has your doctor performed a barium enema, ultrasound, cat scan, or a HIDA scan? A gastric emptying exam may be good too. Those tests could show if you have structural or functional problems with your intestines, pancreas, gallbladder. The emptying exam could show how fast food is digesting in your system.
 
I'm finally feeling better! I had a pretty bad day on Saturday - we had to run a bunch of errands, and I was so nauseous, light-headed and exhausted. I barely ate and did not feel well at all. But yesterday, something changed - I had a huge appetite and much more energy, and the nausea finally went away! I didn't feel light-headed either (probably because I ate everything in sight, ha ha). I scarfed down an entire pizza for lunch (yes, lactose is usually an issue for me, but this time the pizza sat just fine in my tummy). Then in the evening, hubby and I were watching Parks & Rec, and the character Ron Swanson from that show has a great line where he's in a restaurant and says to the waiter, "Give me all the bacon and eggs you have. Wait, I'm afraid what you heard me say was 'give me a lot of bacon and eggs', but what I said was, 'give me ALL the bacon and eggs you have.'" :p That made us hungry for bacon and eggs, so we actually went grocery shopping and then made a huge "breakfast for dinner" type meal. I ate a pile of scrambled eggs, 4 strips of turkey bacon, an english muffin and a big glass of homemade orange juice from our juicer. It was delicious! I'm feeling pretty good today too, and I feel more like I'm actually on corticosteroids. I feel hyper, slightly manic, guts feel good, hip feels pretty good, and I have a lot of energy! :D I don't know why I had such an initial bad reaction but this is how I should be feeling after getting steroid injections - this is similar to how I felt on pred, although not as much euphoria.

So yeah, with the added energy yesterday, I was able to accomplish a LOT! I did some cleaning, dishes, laundry, I got about half of my Halloween costume made plus I did some other sewing projects (mending hems and stuff like that), I cleaned my pet hedgehog's cage and gave him a bath, I finished up the crocheted blanket I was working on and I started on a scarf, plus other odds & ends. I still feel good today too, still feeling steroid-zazzy today, so I either didn't overdo it yesterday or the steroids are making it so that I don't currently pay a price for overdoing it.

Of course, the downside of steroids is that my focus isn't very good, so I skimmed the more recent threads but haven't read in-depth. So I'll just respond briefly. Hi CaptainHair and welcome - have you been tested for celiac or for food allergies? Have you seen a nutritionist/dietician (I don't remember what the difference is)? Can you describe the bleeding - bright red or dark/black/clots? Bright red and every so often would probably indicate hemorrhoids, as Moogle mentioned.

Hi Moogle, how are you today? Questran working wouldn't necessarily but could indicate gallbladder issues. Psyllium apparently works for bile salt malabsorption too - I take psyllium and it works great for me, but my gallbladder seems to be fine. So who knows!
 
Super-excited for you Cat! I'm glad to hear you're feeling better.
I've been tired and had head pain for the last couple days, hopefully it's just the weather (it's been rainy/stormy for the last four days). Today it's nice out and there's a bit of an ache but hopefully that will go away. I'm back at work again and enjoying it, hoping to make it most of the day!
Lizbeth, the doc thinks the Linzess will help because I am constipated almost constantly and he feels that what I have is IBS with multiple food intolerances. (Isn't that just a way to say we don't know what's wrong? :D ) I heard today that they did send in the prescription for the Linzess so hopefully the insurance company will approve it! I'll find out for sure this afternoon, yay!

Moogle, congrats on cleaning your shower... sometimes it's the little accomplishments that mean so much! :p

Steve, also perhaps check into the low-fod diet. i have problems with pears and apples and low-fod seems to work really well for me. Here's a link to some info: http://www.healthhype.com/fodmap-di...bs-bowel-disorders-with-bloating-and-gas.html
 
Cat, sometimes I'm just grasping at straws. It could have been a plethora of things that upset my stomach the other day. The questran does firm things up with the bms, but I dunno if it's my gallbladder. High fat meals seem to mess me up.

I'm laying off the whey protein and most dairy. I may try a rice protein powder. It's supposed to be gentle on digestion. Whole Foods will let me exchange the whey, which is nice. Downside of rice protein is that it's gritty, even with a good blender.

mccindy, congrats on finally getting your prescription. It's rainy here today too. I'm also drowsy.
 
Steve-- I'm actually rather similar, in that I have a very short list (about the same number of things as you) of things that I can eat, and everything else triggers horrendous pain, nausea, etc. Unfortunately, I don't know why, and I haven't found a solution yet. :( Questran (cholestyramine) does help me with the diarrhea, but I still can't eat many foods without pain and nausea. I know that my diet is very unbalanced, but I just can't tolerate other foods. I have been to a dietician, but unfortunately, dieticians can't cause me to magically tolerate foods either. However, if you haven't been, it might be worth a try just to get some suggestions, perhaps of foods you hadn't considered. Right now, it's look like I may have Mastocytic Enterocolitis, and if my doctor ever decides to return calls, I will be trying Gastrocrom. Maybe that would be something for you to try?
 
Hi everyone, been away for a bit; between life and drs appts. I've been stuck in my head. I have been through a lot lately and I have no idea what to think anymore. First I am getting a new primary dr.! That being said after having extreme itching on my breast for 6 months(1round of failed low dose(5 mg-days prednisone and every other remedy) negative blood work- I finally got to see a dermatologist! Mind you, I had to call around and find one because the referral dept couldn't figure out how too. That was a waste of my time. He was quack trying to push acne soap and decided it was eczema(that clobetazol didn't work on) by looking at it! Found out he does his own "pathology" and basically found that I had been itching my skin! o_O So I starting getting serious. I called Fred Hutchinson cancer to rule out inflammatory breast cancer, found out I have extremely dense(fibrous) breast - I know that word-that is what is used to describe my uterus - well back to that later the next saga in this chapter involves my colonoscopy/endoscopy. I'm officially the who's who of gi messed upness! First internal hemmorhoids, diverticulosis, 10mm polyp, 2 5mm sessile polyps, and than he had to stop because(under heavy. sedation) I said I can't do this anymore. So get to do this all over again under general :( Endoscopy. - Barrett's esophagus 40cm from z-line and inflammed lining... so now the worst part of this whole story, I'm waiting for all biopsy results -.- Good news my GI dr. is awesome. I have an idea of what it might. be,but I need a rhuemy now. And maybe a beer :)
 
Hi guys,
Help advice needed. The GP is querying auto immune diseases now however bloods come back normal except for low ferritin again, b12 okay as on injections and persistent low urea. If I had an auto immune disease would it not flag up in my blood? Deserted for an answer to all of this now.
 
cant help you there, but someone will be able to

I woke up today and all the skin on my hands has started to peel off, just on the palms and fingers. Gonna have to see occy health again cos I cant work like that
 
Ali T, what bloodwork is it specifically that's coming back normal? CRP/ESR? ANA? Something else?

Akiva, see about having some bloodwork done. A few months ago, I was having a weird issue where the skin on my lips was cracked, peeling, numb, and painful. There was always skin coming off of my lips and it was both ugly and unpleasant! It turned out in my case to be low B6 - and it took me a couple tries on supplements to get it under control. It's mostly better now as long as I remember to take my supps. So anyway, it could be due to a weird vitamin imbalance like my peeling skin issue was. Best to get some bloodwork done while you're getting it checked out. Good luck!

Pirate, my goodness, it sounds like they found a lot of stuff going on! I'm glad that they're at least taking you seriously though. Do they have a suspicion of what's causing all this? Good luck with the rheumy and please keep us posted on the biopsy results!

Chickadee, I can't believe you're still waiting for a call back! If it were me, I'd be calling and/or emailing that doctor every day. Don't let them blow you off like this, be a huge pest if you have to! I hope you can start on that medication soon, it seems like you've been waiting quite awhile for this!

Moogle, I can totally relate to grasping at straws (although I prefer to call it semi-educated guessing ;) ). That's pretty much the majority of what I do with my illnesses too! High-fat meals or just overeating in general mess me up too - I had a big dinner last night with a couple of iffy ingredients, and my body did not like it. I spent some quality time on my toilet, with cramps and d. Yuck. And I'm not even sure, was it the iffy ingredients? The fat content? Or did I just eat too much? Or a combination of those things?

Cindy, it was rainy here for a few days too, pretty much all Friday and all weekend. It's nice out today though, sunny and crisp. Hopefully you're having a better day today both weather-wise and pain-wise. Remind me, when is your MRI? It's in a couple days, right?
 
CRP and esr now normal, been high in the past. All that's being thrown up is high blood cell distribution width, low serum urea, ferritin and white blood cells. I'm. It sure what ANA is. She was thinking Addison's disease but would something not of cropped up I seriously can't go on this sick at all now I'm scared ill just be tossed aside soon as no one seems to know what's going on and running out of ideas.
 
Ali t, to check for Addison's, you need pretty specific testing - the ACTH test. That's where they inject you with ACTH (it's something that, in healthy people, will make cortisol levels rise - but in people with Addison's, cortisol won't rise much or at all in response to ACTH). After they inject you with ACTH, they check your blood every half hour to hour for about 3 hours, to see what your cortisol levels are doing. Did you have a test like that where you sit for hours and have your blood checked every so often? Here's a link with more info on that test:
http://en.wikipedia.org/wiki/ACTH_stimulation_test

ANA is a blood test that can check for things like Lupus and RA. If they're looking for autoimmune disorders, then they likely have or will check your ANA. As for the normal CRP and ESR, are you on any medications right now? How high were they in the past - what specifically were your numbers then and now?
 
Hi Cat,
My MRI is this coming Friday. I am finding that the stress is making me even more tired and (kind of) bitchy than normal.. I'm feeling a bit isolated. I know intellectually that things will most likely be fine, it's too soon for a slow-growing grade II tumor like mine to have visible regrowth yet. but I'm still nervous about it. Darn old brain! Anyway, once I have the MRI I have to mail the CD to Mayo, so I won't get results until next week Tuesday or so. THe good side being once I get good results I'll have another three months to relax before the next one.
Another good thing is that my belly has been fairly quiet the last couple of days. Not much pain since I've been a good girl. sad that I have to be happy about the fact that I finally was able to go to the potty for the first time in a couple of days this morning! INsurance denied the Linzess again, so I have to wait for the doc's office to apply for a prior auth again...... hopefully it will go through this time since I tried the miserable Lactulose.
 
Cindy, good luck with the MRI - I agree with you, logically I can't see how anything would show up on the MRI after only 3 months (and I hope nothing ever shows up on these MRIs, I hope the tumor stays gone for good!). Here's what I do when I'm nervous about a test - I plan and plan and plan. :p I had an MRI of my hips a couple months ago, and I planned which sweatpants I was going to wear, which warm sweater (it's always so cold in MRI scanners!), which pair of fuzzy slippers, which sports bra (since you can't have metal so no regular bras), etc. I agonized over which songs I was going to put on a CD to listen to while in the MRI. Probably silly of me, but it helped me feel more prepared and distracted me from worrying about the test itself.

On that subject, if you make yourself a CD to listen to, put gentle & calming music on the CD. I unexpectedly had an episode of claustophobia during my MRI - which was very odd, because I had had an MRI before, and I wasn't claustrophobic at all during my previous MRI! But for this one, they put me in the machine and it seemed like I just went in forever, like the exit was so far away, too far away, and I just felt trapped. I wanted to scream for them to let me out, I felt suddenly so full of panic! But I told myself, calm down, you've done this before, there's no reason to panic. Then my music came on, and fortunately it was a really lovely calming song ("Take 5" by Hikaru Utada) and that was the thing that really calmed me down. I know, from now on, whenever I need to have an MRI, that song is going to be the first one I hear when I go in that machine - I will put that at the top of my playlist every time. It made a big difference for me in a scary & unexpected situation.

(Jpop nerd alert, but if you're interested in that song, it is usually listed by the Japanese name "Takeu 5" - it's on her album "Heart Station". She didn't make a video for it so it's not on Youtube, but it is on itunes. Utada is my all-time favorite singer and I highly recommend checking her out if you're at all interested in Japanese pop! She's the best and I could talk all day about her. :) )

Sorry for the ramble there. I hope your insurance finally approves the Linzess already! Sheesh, they sure like making you work for this prescription. I hope it's worth all the trouble and works really well when you do finally get to try it. Glad to hear the belly has been quiet too - mine has been so hit & miss lately, it didn't punish me for pizza but it's acted up the past few times I've had baked chicken & mashed potatoes, so who knows what's up with that. Hubby's making chicken for dinner again tonight so I'm already not expecting that to go well. :p
 
My GI's office does not utilize e-mail so my only option is to call and leave a message for the nurse. She is at one location, while the doctor rotates amongst 3-4 locations. The nurse-- recently hired, didn't like the previous one-- is good about calling me back, but can only tell me that the doctor has not responded to her question about me yet.

Even worse, I've been waiting SIX WEEKS (!!) for my endocrinologist to get back to me with test results that affect a drug I need to begin tapering. He doesn't even have a nurse so I can only call, talk to the receptionist/office person and have her tell me once again that I will be getting the results soon (and give excuses as to why it hasn't happened yet).

I find all of this really exhausting.
 
My GI just called! Shocking! He never calls; he just passes on messages to the nurse. Anyways, he said he's going to call in the rx for Gastrocrom, but 1) he is not all that optimistic that it will help and 2) he's not sure if the insurance will cover it. Well, let's at least get it called in, and we'll go from there.....

He also said that I do have mastocytic enterocolitis by the medical literature criteria, but he's not sure if it's a useful diagnosis.
 
Cat - I'm a j-pop nerd myself. I have Utada's "Ultra Blue" album. Gackt is awesome too, he is probably my favorite. Do you like Gackt Cat?

Today was good. I'm trying probiotics now (again). I've been on and off them a lot. I'm trying VSL #3. It may be too soon to notice if it's helping, but my bm this morning was pretty normal for a change. Like, it sounds really weird to say it like this, but it was a really good poop (if I must say so myself). :p
 
thanks Cat! I am also a planner so I've been trying to decide what to wear.... realized I am out of good sports bras with no metal so I may need to pick one up! I am severely claustrophobic so I always have to take a couple of Ativan and essentially sleep through the whole thing. I will freak right out if I try to let them slide me in without any meds. It definitely makes it worse that I have to go in head first.! I may check out your music recommendations just in general. :)
I love that Moogle is also a j-pop fan so you ahve someone who understands your obsession! Although I believe you've moved more to k-pop lately, haven't you?

Chikadee, I understand your frustration with the meds. IT seems like it never ends between the docs, the pharmacy and the insurance company! I'm hoping my Linzess will get approved this week, and if my MRI is clear, hopefully I can start tapering the Keppra next week too. IF that all happens, within a month I could be taking 9 less pills per day.
 
I had a listen to Hikaru Utada and the music is actually really good. Problem is for me I normally love lyrics and not understanding the words is a major barrier for me!

Chickadee why is it not a useful diagnosis? I don't get that at all? Your GI sounds a bit frustrating...!
 
Warning - long rambly obsessive post ahead! ;)

Ahh, Moogle, you are awesome! I hardly ever get to talk to people who have heard of Utada! She's my favorite singer EVER - and her song "Show me love (not a dream)" is my all-time favorite song. There's an english lyric in that song that goes, "It's all in my head, it's all in my head." I first heard that song right around the time when my doctors were finally starting to take me seriously and treat me as if it is IBD rather than IBS - but I had heard "it's all in your head" from doctors recently. When I heard Utada sing that line, I just started crying. She was going through something different than I was, but we were both on difficult journeys and I felt like she's a kindred spirit. That song just summed things up for me and really got to me and it's so beautiful - I can't even put into words how much I love that song!

(If you don't already know - Utada basically left the music business at the end of 2010, she went on "indefinite hiatus." Her official reason was "exhaustion," which sounds like a BS excuse and it was. An interviewer talked to her just before she went on hiatus, asking her to explain the real reason, and she explained that she's been a huge star since she was like 16, and she's like 30 now - so her entire adult life, she's had people to do everything for her. She had no idea how much stuff costs or how to pay bills or how to do stuff normal everyday adults do. She said that the straw that broke the camel's back was, she took a vacation to a rural area and had no idea what to do while she was there. Someone told her it would be nice to take walks, so she took a walk outside in the country every day - she had never just gone on a walk before, and she realized it was nice - and that it was such a simple thing, but she had never done it before, and she realized she might be missing out on huge chunks of life by being a star and having everything done for her. So she walked away from her music career to figure out what it is to be an adult and to explore life and become independent. I think that's so nice, and although she's my favorite singer, part of me wants her to never go back to the music industry and that insulating lifestyle. And she said that mental process that she was going through as she was deciding to walk away from the music industry, that's what "Show me love (not a dream)" was written about. So it's a beautiful, meaningful song, I just love it on so many levels. Anyway. I feel bad for Utada lately because her mother just died about a month ago - apparently her mother committed suicide, and the Japanese media has been really intrusive and taking photos of Utada while she's crying, which is horrible. I hope she can go back to her relatively anonymous life again soon. I heard she's been living in London and she regularly rides the tube train, and she's genuinely gracious and surprised when people on the tube approach her and say that they're fans - she seems so down to earth and genuine, I think she's becoming the independent adult she wanted to be. She is in the spotlight a little bit - lately she's been hosting a radio program for one hour a month called "Kuma Power Hour" - Kuma means bear in Japanese, her favorite animal - she had written a children's song awhile back called "Boku wa Kuma" which means I am a bear. :) Anyway, even though the radio show is mostly in Japanese, she does speak in English a fair bit too during the broadcast, and it's just so nice to hear her voice again, it's like hearing from an old friend.)

lsgs, I'm a lyrics nerd too - which is why I have a really hard time listening to pop music that's sung in English. One bad line or awkward lyric and it's like nails on a chalkboard to me! I listen to J-pop and K-pop because I don't know what they're saying, but the music is fun - ignorance is bliss, and if the lyrics are bad, well I'm none the wiser! :p And now that I'm trying to learn Korean, I actually appreciate simple, repetitive lyrics - easier for me to memorize and understand.

And yeah, as Cindy said, I'm way more into K-pop lately. When Utada walked away from her career, J-pop started sounding really stale to me. Nobody compares to her in my opinion, I just couldn't find another J-pop singer who did for me what Utada did. So I started getting more into K-pop. I really like Big Bang! They don't affect me on a personal level like Utada did, but their music is super fun and great to work out to, and oh my gawd they are some gorgeous guys. Rowr! ;) I also really like Lee Hi, she's got a great voice. Some of the guys from Big Bang have also done some solo work which is hit or miss - but the hits are pretty fantastic, especially Victory's new solo album. Cindy, if you want, I can post some links tonight with recommendations for both calm, relaxing music and also peppy workout music.

I'm getting wayyyyy off topic now, but on the subject of K-pop, today is Hangul Day! Hangul is the written Korean alphabet. South Koreans celebrate their language today, and they particularly celebrate the fact that they have an alphabet! Yeah, I'd love to learn Japanese, but written Japanese (Kanji) is so difficult. There are thousands and thousands of Kanji characters, and no trick nor shortcut to learning them - you just have to memorize every single Kanji character in order to read & write Japanese. Yeah, not happening in my lifetime! But Korean has Hangul, a proper written alphabet, so it's easy to learn and easy to read & write in Hangul! I'm trying to teach myself Korean, and Hangul fascinates me. I was *so* excited the first time I was able to read a word in Hangul and understood what it was! :D If anyone here wants to learn an Asian language, Korean is the way to go. It's fun and you don't have to memorize thousands of characters, there's something like 23 Hangul characters to learn and a few grammar rules to know and that's it really!

Yeah. And, back on topic to the subject of IBD - today's also the 4th anniversary of when I first got sick. Oct 9, 2009 is when my life changed forever! I reminded hubby of that this morning, and he said, "You shouldn't commemorate something like this, you should think of happy things." I was like, "Duh, why do you think I'm celebrating Hangul Day??" ;) So yeah, it's my IBD-iversary, but really it's Hangul Day! Haengbok Hangeul eui Nal! Happy Hangul Day! (Like I said, ignorance is bliss, right?)
 
Hi again guys :)

I posted awhile ago and here is my first post if anyone cares to refresh their memory haha (http://www.crohnsforum.com/showthread.php?t=53234)

Anyway, after I began vomiting with my other symptoms, my GI thought with symptoms of nausea, vomiting, extreme abdominal distention and pain that I was having a narrowing of my small intestine somewhere. He never mentioned Crohn's but through my research I saw that was the most common cause of narrowing in the small intestine. I then had a CT the end of July, which showed 2 areas of intussusception. (Where the bowel folds in on itself- very rare in adults, usually has a "lead point" such as a tumour causing the folding which mine did not appear to have) I then had a referral put in to a surgeon, which the office took 5 weeks to send, as he went on vacation for 2 weeks and it had to be dictated, blah blah blah. Anyway, I think I wrote about that part in this thread somewhere (and I will tag Jennifer here, as she was kindly following along my previous threads and giving advice)

So when I finally saw the surgeon, expecting surgery to fix the intussusceptions, and thrilled that I would be cured and be able to live a normal life after surgery, he burst my bubble by telling me he believed the intussusceptions were a "red herring" and transient finding, and that my true issue was gastroparesis. He did not want to perform unnecessary surgery (which I am very grateful for) and send me for a gastric emptying test and a small bowel follow through. Naturally I was devastated by this news (even though before the intussusception result I had been strongly thinking it was gastroparesis myself) because instead of something curable with surgery it was potentially a lifelong disease where I could never eat normally again, and medications can only somewhat control symptoms, not usually eliminate. Not to mention some people end up with feeding tubes, etc.

As I waited for the tests I ended up with a 2 night ER stay for IV fluids when the nausea and vomiting flared up even more than usual where I couldn't even keep down liquids (normally I can always keep down water). Then got the tests, then had to wait for the results.

Finally today I got the SBFT test results (for some reason the gastric emptying results aren't back yet!) and ... several loops of mid small bowel demonstrating multiple small quite dense foci quite suggestive initially of aphthous ulceration . The report then goes on to say that due to the time of transit and the fact that they are using new barium preparation, they believe these areas to be simply abnormal pooling of barium rather than ulceration :shifty-t:

Anyway, the surgeon didn't buy that luckily, and is sending me on for further evaluation of the small intestine, ie: capsule endoscopy. (which I will have to travel a distance for as it is not available close to me, but that's okay :)) He feels upper GI crohn's could explain all my symptoms.

So it's been quite a roller coaster of "Here it's this! No wait, that is a red herring, I strongly think it's this! Actually wait, it might be this or it might be abnormal barium..." I have another appointment tomorrow with the preliminary gastric emptying test results. The fact that they left me leave at hour 3 of 4 I think is suggestive that my emptying might be okay? Unless it was delayed at 2 hours and corrected by 3 which they said is possible. Anyway, I will know tomorrow. I've been keeping up with the thread but not replying much as I've been really discouraged and down. *hugs to everyone*
 
Hi Jessie, welcome back! I do remember your previous posts (and I remember "intussusception" being a really difficult word to spell!). Wow, sounds like you've been through a lot lately but I'm glad that it sounds like you're on the road to answers. Good luck with the capsule endoscopy! I had that test myself a few years ago, it was easy except for having to do prep beforehand (not all doctors require prep before a pill cam, so you may luck out and only have to do a liquid diet beforehand). Once you swallow the capsule, though, it's literally just wear a belt thing and wait (the belt contains the receiver and hard drive which gets the data that's transmitted by the capsule). Oh, and if you do have a gastric emptying issue - your doctor can still make the pill cam work to see the small intestine. They can sedate you and insert the capsule into your small intestine with an endoscope so that it bypasses the stomach - not ideal obviously, and I hope you don't have a gastric emptying issue so that you don't need to worry about that possibility.

Good luck with the test results tomorrow! Please keep us posted on how it goes. And no worries about not posting much, we're here for you whenever you are feeling up to posting. :)
 
Thanks Cat!! Yes intussusception is hard to spell haha. I don't mind preps, in fact I have done them more than just getting tests when I have been really constipated and just wanted to get cleared out. I don't really get much cramping with it anymore so I don't mind it. I suspect I might just need a liquid or fasting for mine anyway but who knows.

Would shopping and trying on clothes be difficult with the receiver? As I will be going to a different province I might like to do some shopping while wearing the receiver (assuming they would let me leave the hospital).

Thank you for the information re: gastric emptying and pill cams. I hadn't really thought about that. I will remember that in case it turns out I have an issue that way, but if I do it won't be the most severe since I had <10% left at 3 hrs which allowed me to leave.

I will definitely keep you guys posted tomorrow. Thanks a lot for always being so supportive and caring :) I am glad to be seeing my GP tomorrow (my newer one). He is extremely kind and caring and truly wants to help. When I was in the ER requiring iv fluids and iv anti emetics he was apologizing that I was feeling this way and he hadn't been able to fix it! Where it had been the GI who was taking a long time to send the referral to the surgeon, nothing at all was the fault of my GP. I love him and I'm so glad I switched to him after my other GP had said "you have irritable bowel syndrome. You need to just live your life and not think about it". Pretty hard to do when you are vomiting every day mostly, and sometimes multiple times a day even when eating barely enough to function :/

(I have vomiting "episodes" where I will vomit multiple times mostly in a row until finally it stops. I usually count that as once- like one episode, and say multiple times if it happens like at lunch and then in the evening for example)
 
Good luck with the pill cam jessie45. :) I didn't get to fully have one done. All I had was the dummy pill (you usually take the fake one first that dissolves to make sure the real pill wont get stuck and need to be surgically removed, yet I'm sure your surgeon has taken this into account) and then my insurance decided it didn't want to pay for the real one because, "its used to diagnose and she already has a diagnosis." I hope you get a concrete diagnosis soon. :hug:
 
Jessie, I think trying on pants would be okay but I don't know if you could try on shirts with the belt contraption on. I don't know if they're all the same, but mine was a belt that went around my waist and over my shoulder. It was kind of weird-looking, like honestly I wouldn't have wanted to go out in public with it on. I don't think I could have changed clothes with it on, either - I definitely could not have changed my shirt. They did let me leave the hospital for mine - I swallowed the capsule in the morning, went home for 8 hours, then went back to the hospital to return the belt once the capsule's battery life ended (you have to return the belt, but not the capsule, so no worries about having to fish through your poo to find it! If you want to keep it for a souvenir, or if you just want to find it to be sure it has passed safely through you, that's fine - but you don't have to retrieve it if you don't want to).

I just did a google image search and found this - this looks just like what I had to wear when I had my pill cam:
person_wearing_sensorbelt.jpg


Oh! While on the subject of shirts, make sure to wear a thin cotton shirt to your capsule endoscopy. They didn't tell me this until I actually showed up to the hospital to swallow the capsule, but apparently the receiver thing in the belt sometimes has a hard time receiving the capsule's data through synthetic, thick, or multiple layers of fabric. A thin cotton shirt is best so that all of the data is received properly. I fortunately was wearing a cotton tank-top underneath a hoodie when I went to swallow the capsule, so I just had to take off my hoodie and I was fine. I don't know why they neglected to give me that instruction until the day of the test, but yeah, thin cotton is apparently best.

Wow, the vomiting episodes sound really horrible! I'm sorry to hear you go through that. I'm lucky in that regard at least, I have a lot of symptoms including horrendous nausea, but I rarely vomit. Vomiting like that is not part of IBS though, definitely not in cycles like that. Don't let them give you a diagnosis of "Cyclical vomiting syndrome" either - that's one of those things similar to IBS, where they just slap that label on you if they can't explain it. Oh, you have gastro symptoms? You have IBS. You puke a lot? Cyclical vomiting syndrome. Don't let them tell you that - it's surely got a real cause, rather than just being a vague unexplained "syndrome." Have you had an upper endoscopy lately? The vomiting should be explained by something either in the stomach or the duodenum or jeujeunum (another hard word to spell and I'm not sure if I got it right), I would imagine. It is rare but possible to have Crohn's in the stomach/duodenum area - I believe LittleMissH was diagnosed with gastro-duodenal Crohn's? At any rate, the pill cam should see those areas, and an upper endoscopy could take some biopsies if you haven't already done that.
 
jessie45 - I hope you get the answers you need! I agree with Cat, certainly not IBS. I know that gastroparesis can cause vomiting. It's something that they can find with gastric emptying study. I thought I saw you mentioned you already had that test, so if that's not the case the nevermind. Good luck with the tests.

Cat - I'll PM you about j-pop stuff. I think it may take up too much room here!

I'm having a blah day. Had upset stomach first thing this morning and loose bm. I'm so convinced I have SIBO. Taking the probiotics aren't going to help if I eat stuff that's going to feed the bad ones, or ones in the small intestine. The gas was waking me up all night. I was a gas factory :p So I didn't sleep well and I am feeling jet lagged as hell. Kinda depressed. I hate Ibs/SIBO/Gas factory syndrome.
 
Thank you Jennifer :) That's too bad your insurance company didn't allow you to go through with it. True it can be for diagnosis but it could also help them understand the extent of disease to help with treatment. As my small bowel follow through showed no narrowing, changes in bowel wall thickness, etc, I doubt i would need a patency capsule but we'll see. And thank you for the support and hugs :hug:

Cat, ahh okay I see, I was picturing it being under your clothes. I suppose if I wore a jacket over it, it wouldn't be so noticeable haha. It's more shirts and sweaters/coats that I would want to try on anyway. If they make me leave the hospital and I can't really shop I will not really have anywhere to go since it's out of province. I might as well just stay at the hospital and read or watch a movie on my computer or something. I will have to see once I know when it will be and the details of it. And thanks for the info on the thin cotton shirt, good to know

As far as the "episodes" I see that how I describe it may sound like cyclical vomiting, but I didn't really describe that they are always related to eating. If I don't eat, I don't vomit (except for that one worse flare up). If I am only doing liquids I very rarely vomit. If I eat, sometimes small amounts I won't vomit, but I can never know how much will start me vomiting, and once I start it usually keeps coming. In all honesty, my symptoms match pretty exactly to gastroparesis, except for the fact that I usually start vomiting within 15 min-1.5 hours after eating, occasionally a little longer, where a lot of the literature says a few hours after eating. But on forums, etc. I have seen people say it happens quicker for them as well. Also the other weird thing is that my nausea is much worse with standing/sitting and if I can lay down I can often (not always) prevent the vomiting. This led me to wonder if it's related to my autonomic nervous system/dysautonomia as my heart rate also increases more than normal when I stand up, and I often feel lightheaded and weak. This could be related to electrolyte imbalances or something from vomiting and not eating much too though, I don't know. I am going to mention the heart rate thing to my doctor tomorrow too.

My last upper endoscopy (only one..) was last october, so almost exactly a year ago, and that was before the vomiting. I think another one wouldn't hurt but I will wait for them to suggest it, plus the pill cam should see that area as well. My one previously was normal. Although the report said something like "the gastric antrum appeared abnormal so biopsies were taken for h.pylori". I asked him prior to the test to do biopsies for h.pylori so I don't know if he just wrote that to give a reason for the biopsy or if it actually looked abnormal. I never saw the report til many months later so I didn't bother to ask him as I figured he wouldn't remember my scope specifically.

Thank you moogle :) I agree, I knew it wasn't IBS so it enraged me when he said that. Also, even if it was (which I know it's not), he could've at least tried to give me meds for it :confused2: My symptoms do sound exactly like gastroparesis when I read about it. I should get the results of the gastric emptying test tomorrow but I'm thinking since I was allowed to leave at 3 hours with less than 10% left, instead of having to stay for the 4 hours that its probably not gastroparesis. Unless I was really delayed at 2 hours and then corrected or something...
-I'm sorry you're having a blah day :( I thought it was a big no-no to take probiotics with SIBO? I thought that made it worse. I could be wrong though, but I would look more into it if I were you. You need a course of antibiotics like xifamaxin (think that's how it's spelled...) if it is SIBO. Hope things get better :)
 
Isgs-- Yes, I find my GI a bit frustrating! (More than a bit.) He just doesn't seem all that interested in helping me. I just haven't had positive experiences with GIs in general, though, so I'm not sure if someone else would be better. Mastocytic Enterocolitis has only been in medical literature for a few years so there's a lot of debate over it, apparently. Some doctors don't believe it's real (though the increase in mast cells is quantifiable), and there's question about how to treat it.

Jessie-- Do you know if upper GI Crohn's can cause intussusception? When I've heard of intussusception, it's been spoken of as a medical emergency. If there's any question after the pill cam, can you get a second opinion from another GI surgeon? I'm sorry you're going through all of this.

Moogle-- Have you been tested for SIBO? Have you tried Xifaxan? I tested positive, but two rounds of Xifaxan didn't help me. It helps some people though.
 
Chickadee, yes there are some mentions in the medical literature of crohn's and celiac disease causing transient intussusceptions (ones that come and go). I think it especially mentioned upper GI crohn's but I can't recall for certain. I just know it definitely mentioned crohn's.

You can also have an intussusception that gives chronic symptoms as well as ones that cause an acute abdomen- the ones that are medical emergencies. It generally depends on the length of them. Short ones, with no visible lead point in young adults in the small intestine are typically transient requiring no intervention besides other testing to ensure they are not still there if the person is having symptoms.

They are very rare in adults, but my surgeon said with the higher use of CT's they are seeing more and more short intussusceptions that sometimes are gone even when they do the second scan minutes or seconds later. These are the "transient intussusceptions" like what I had, and not the ones which would require surgery. In my small bowel follow through, my intussusceptions were gone.

I was lucky enough to see a surgeon who has published on the topic of intussusception in adults which I believe may have saved me from an unnecessary surgery that would not have helped my symptoms! (Another surgeon may not have operated either, but because it's so rare I think there is a chance they would have).
 
**Jpop and Kpop music post for Cindy (and Moogle and lsgs and whoever cares)**

Here are some of my favorites. Firstly, the song I mentioned earlier - Hikaru Utada's "Show me love (not a dream)". My very favorite song. It's not on youtube, but I found a very good live version on a Chinese website. I sometimes have to hit refresh for this site to work, so try refreshing if it doesn't work.
http://video.sina.com.cn/v/b/45258598-1463781897.html
If you're interested in the lyrics, there's a good translation here:
http://musicbox-trans.livejournal.com/32323.html
(Scroll to the bottom for the English translation.)

Utada - Take 5 (This is the song I was talking about that calmed me down from the claustrophobia in my recent MRI - it's not on youtube either, but I found it on another site - no official video to go with the song, but the song is so pretty, I think it speaks for itself - also, when the song seems to abruptly cut off at 3:40, that's really the end of the song - I'm not sure why this clip goes to 5 minutes but you can stop listening at 3:40.)
http://www.jukebo.com/utada-hikaru/music-clip,teiku-5,q38uzu.html
Hm, this one seems to take a long time to load, a reload might be in order if this one doesn't work too.)

Utada - Passion (Moogle - this song was the theme for the 2nd Kingdom Hearts game. It's just in general a really pretty song, and this is the official video - oh my do I love Utada's dress in this video! I'd love to make one for myself if only I could afford that much fabric and ribbon - that train is like 20 feet long! The song is etherial and pretty, with interesting drum beats.)
https://www.youtube.com/watch?v=kWoJLdXJt0E

Utada - Hikari (I debated on posting this one, as it is her most popular song, and it's pretty - it was the theme for the first Kingdom Hearts - but the official video is sooo boring - she's literally washing her dishes for 5 minutes in the video and that's it - and the studio version of the song is kind of a sterilized version, if you will - it's a great song but the studio version could be much more. However, I found a live version online which I much prefer over the studio version, so I'm posting that instead of the official video/studio version. I love Utada's energy when she performs live, and I also love when the organ comes in near the end and she runs around singing "la la la la la la la la la!" - neither of those things are in the studio version of this song.)
http://www.animelyrics.com/jpop/utada/hikari.htm

Okay, I don't want to overwhelm, so I think that's enough Utada for now. :) How about some K-pop in the form of Big Bang? They make some great workout music!

Big Bang - Fantastic Baby (This song is SO fun and full of energy - except when they say "wow, fantastic baby." I giggle a little bit every time I hear it! Great energy for working out to and the guys are all so different and fun - my favorite is TOP, who has blue hair in this video - he's sooo pretty and that deep voice is unexpected coming from such a slim, pretty man.)
https://www.youtube.com/watch?v=AAbokV76tkU

Big Bang - Tonight (The first Big Bang song I heard - also very fun and a lot of energy, I couldn't get this song out of my head and had to listen to more Big Bang!)
https://www.youtube.com/watch?v=8d5QEWdHchk
I initially heard this song being sung by a different band (my all-time favorite band, the Rock-afire Explosion) - here's the link to that:
https://www.youtube.com/watch?v=2YOwlWuPkoo
(Yes, a robot band introduced me to K-pop - I'm special like that :p )

GD & TOP - Don't go Home (As I mentioned, the guys from Big Bang have branched out into some solo projects. Two of the guys, GD and TOP, released an album that was just the 2 of them, and some of it was great! This song in particular is a lot of fun and the video is ridiculous campy fun.)
https://www.youtube.com/watch?v=IGNrOPzDuTQ

Victory - Gotta talk to you (Another solo project from a member of Big Bang. His stage name is Seungri, which is Korean for "Victory" - this song is really pretty and a little sexy too. I was talking earlier about how I like repetitive phrases in my K-pop so that I can learn easier? This is one of those songs, but the repetitiveness doesn't get old. When he says, "Nal jigeum halmaliseoyo", that's Korean for "I gotta talk to you". I can't decide whether I like the studio version or the live version better, so I'll post both and let you decide! I think the singing is better in the studio version, but the dancing in the live version is fun, and the audience singing along is awesome! I admittedly usually sing along with them when I watch the live version.)
Studio version: https://www.youtube.com/watch?v=Yki3X1pG3ZE
Live version: https://www.youtube.com/watch?v=t6yJaWssgKM
 
akiva said:
cant get in to GP this week, unless I phone in the morning and get an emergency appointment, such a stupid system.
Click to expand...

How are you doing, did you have any luck seeing your Dr?

Hey everyone :).

So I had my GI appointment on Monday and was very surprised to be seen by the Dr I had intended to request a referral for (had forgotten he was doing clinics to try reduce waiting lists). So he asked my symptoms then said (drum roll please)"we have to presume it's IBD", I was delighted (there's has to be something badly wrong with me to be delighted I have crohns?). I had previously been told the my capsule endoscopy was clear but have now learned it did show inflammation, didn't clearly show TI cos I'd only been given half a clear out prep so that area hadn't cleared. Makes me kind of mad that I had been told it was clear! Dr wanted to start me on azathioprine but I requested something that might help my joint pain too so I will be starting methotrexate soon, I'm really scared to be moving onto this type of drug but I know I would regret it if I don't try. So now just waiting for nurse to get in touch about getting first injection. And my arm has the flu :(,lol got my flu jab on Tuesday and my arm is sore and going to dentist later........Oh isn't life fun?!

Sorry to hear others are having hard times, it's especially frustrating when you feel let down by your drs, we have to rely so much on them that it's truly disappointing when they let us down. Chickadee do you feel sometimes like your banging your head against a brick wall? Sometimes I just wanted to scream and say listen to me!! Without our sick bodies they wouldn't have healthy salaries.

Good luck with the pill cam Jesse, as a girl fond of a good retail therapy session I do hope they let you go out, like Cat I got home for 8 hours so I would imagine you should be able to go shopping. I'm really sorry that you have such a rotten time with vomiting so I really do hope they get to the bottom of the problem and can give you something to sort out out.

Will be thinking about you McCindy for Friday keeping my fingers crossed that it's over quickly for you and you get the results you want, good luck :).

I love that this thread is about more than illness :). Cat I can certainly sense your enthusiasm for music and think I need to try and explore it myself. I love music of most kind so I'm looking forward to hearing it.
 
Chickadee, my current gi doctor doesn't test for SIBO. I guess he is more "old school". He gave me some samples of Xifaxan a few years ago. I didn't take them because at the time, I was scared to take an antibiotic if I was undiagnosed. Unfortunately I couldn't afford them now as they are $1500 without insurance!!! I've heard that neomycin is an acceptable antibiotic to use instead though. I may ask my gi doctor about it next time I see him.

Cat - thanks for the links. I'll check em out today. :)

Lynda - I'm not happy you have Crohn's, but it's good you know what is going on.

I don't think I'm getting a flu shot this year. I swear last year, after I got the flu shot I got sick as hell. Maybe it was a coincidence, but I'm skipping it this year.
 
Lynda, I know where you're coming from -it's not that you're excited that you have IBD, it's that FINALLY someone is listening and giving you an accurate diagnosis! Hooray for good doctors!

Jessie, nice to see you back - how could we not remember you with "intussusceptions" (still probably spelled that wrong) as part of your story? :D Enjoy the shopping if you get a chance to, it's always fun to shop in a new place!

Cat - thanks for the links! I'll check 'em out either today or otherwise tomorrow when I have some quiet time after my MRI.
 
Lizbeth, congrats and condolences on having IBD, hun. I'm glad you're being taken seriously and are going to get the medication you've requested, that's the important part! I hope it works really well for both the tummy and the joints. Keep us posted on when you start the MTX and how it goes. Good luck!

As for flu shots, I really hope I can get one this year! We always get them for free from work, but I guess this year not enough people have registered so far (they need a minimum number of people to commit to having a flu shot or they won't provide them for anyone). I'm hoping more people sign up so I can get mine - it's supposed to be next week! If I can't get it from work, I could go to the pharmacy and get one, but they charge like $30, and at work it'd be free. I'm still willing to pay $30 to avoid getting the flu, but I'd really like to not have to pay if I can avoid it.

Moogle, I'm not super familiar with SIBO - it's similar to candida, yes? I know there are diets for candida, to "starve" the bad stuff so that it dies. Of course, candida is one of those things, is it really real? Or is it like IBS? When you google candida, it supposedly causes all of the symptoms of IBD and more, which makes me think it's not a real thing. I have a crazy uncle who is a hypochondriac, and for awhile he was convinced he had candida so he ate a big pile of raw cabbage at every meal. He lost a lot of weight (he was oveweight and went down to a normal weight), but other than that I don't think the all-cabbage diet did anything for him. Anyway, there may be more legit diets out there for stuff like SIBO.

Cindy, good luck tomorrow! I'll think happy thoughts for you!
 
nah no luck at getting in to the drs. just got to phone in the morning and see what happens. hands are back to normal again now, sudocrem on the hands works wonders lol

had my flu jab yesterday, got one hell of a bruise lol, poor injection technique :p
 
Cat - I don't think Candida is real. I mean, yeast infections are real but I think some companies/"health gurus" are turning it into something it isn't for marketing purposes, to sell Candida detox pills.

I'm possibly grasping at straws again, haha. I was diagnosed with gastroparesis and SIBO is linked to that condition because the stomach isn't emptying well. I can be a hypochondriac with the best of them. Thank you Google! ;)

I'm not going to do any drastic dieting or take any more meds. I need to reduce my stress mostly. I'm doing acupuncture. My acupuncturist wants me to stick to hot foods, soups, well cooked veggies in small amounts, and mostly rice instead of wheat.
 
Moogle, I find exercise to be the best stress relief for me. I haven't tried acupuncture, but sometimes I get massages. I feel like massages are stressful! I never feel totally relaxed during a massage, and afterwards I usually feel like I've been beaten up. I imagine I'd be similar with acupuncture, I'd just feel like my hedgehog had beat me up. :p Kayaking is one of the most stress-relieving things I've done - once I get past the worry of, am I going to need a bathroom but have nowhere to go? then it's lovely. The fresh air, the calm water, my dog's totally content face (we have a 2 person kayak and we bring our dog with, she loves sniffing the air and looking at ducks). It's exercise and it's being in nature AND it's being out on the water - there's basically nothing better! :)

That's interesting diet advice that you were given. When you say hot foods, do you mean hot in temperature or spicy hot? I know some spices can help reduce inflammation, but personally I do so badly with anything spicy. When I first got sick, I couldn't even do stuff like taco seasoning or the mildest salsa. I can at least do that stuff again, but garlic is still on my no-no list, and anything remotely spicy is also still not doable. If hot as in temperature, what was the reasoning for that? I mean, obviously food should be cooked thoroughly, but sometimes hot liquids can promote diarrhea, and heat in general can cause or worsen inflammation (think swelling - you put an ice pack on it to reduce the swelling, as heat would just make it worse - inflammation in the guts can be similar). I'm not saying heat is bad - it can be calming and soothing, like a hot bath or a heating pad, but it's not the best in every scenario.
 
Cat, I'm glad you keep reminding me to exercise. I need the support! I've been doing more lately. Days like today and yesterday, I'm completely drained and fatigued but I walked some around my neighborhood. I may put in for financial assistance for my local Y. I used to go there a lot and lift weights.

I like massages too, but only Swedish massages. Deep tissue hurts like hell. Maybe if I was healthier I could benefit from deep tissue. The dude at the YMCA is a sports massage therapist and he only knows one pressure.... EXCRUCIATING. He's an old Russian guy named Sasha. He says things like "nice, nice yes?" I'm like, "it kind of hurts." He's like, "Ok, ok." *keeps on pounding* *I'm passing out from the pain.* :p

Actually, I love acupuncture. You wouldn't believe how relaxing it is. You don't feel the pins at all. The hour I have in treatment is more peaceful than the sleep I get at night. She places the pins in pressure points that release "energy" in the body to help heal, my digestion in my case. I sometimes feel stuff happening in my tummy during it, which is cool.

About the diet, I meant hot as in temperature, however I think some spices are supposed to be helpful. The diet is called "Spleen Qi deficiency". Interestingly enough, my practitioner thinks I have inflammation due to my tongue being bright red and having a fast pulse. Sometimes loose stools and bloating can be associated with a pale tongue and a weak pulse. Basically imagine your digestive system being like a fire and when it's healthy it produces energy. The spleen facilitates the flow of the energy "qi" through the body. Some foods dampen the fire like raw veggies and fruit, cold drinks, caffeine, dairy. Sometimes wheat and red meat isn't recommended.

Cat, did you get my PM? I sent one about the j-pop stuff. :)
 
mccindy - Thank you! Haha, yeah intussusceptions is a memorable word :p (you did spell it right :) ). Thanks, it's not a completely new place, I've shopped there many times before but not for quite awhile so it would be nice to get to again!

So they still didn't send my gastric emptying results *roll eyes*. While I was at my appointment with my GP he called them (again, I just did yesterday too) and they said since the doctor hadn't done the final check of the report and signed it they weren't allowed to send it along. He kind of scolded at them about how long it's been, and they need it, etc. So he's thinking hopefully friday we will have it.

I also received a call from the doctor's office who will perform the capsule endoscopy, but they called to my parents house so I never got the message to call them til after their office was closed!! I told all my doctors offices not to call that number anymore so I don't know why they keep doing it :( All my messages have been going there, and I mean it's fine I eventually get it but if they had given the right number to this new office I would have talked to them today and had my appointment!! Oh well, I will just call tomorrow.

Moogle- I see you have gastroparesis. Do you have IBD as well or gastroparesis is your only issue? I just can't keep everyone's story straight sorry!

Hope everyone is doing well :)
 
jessie45, I haven't been diagnosed with IBD. Just IBS and Gastroparesis. I will probably get a 2nd opinion from another doctor. I already have a referral to a new GI doctor in December.

Some of my symptoms have changed. I used to get really bad bloating and gas every night and it isn't quite as bad. But I have more D and loose stools than in the past. I want another gastric emptying exam in the future to see what's up with the GP. I'm skeptical about my previous emptying exam because the "meal" I ate was only a bowl of oatmeal (with added fiber nonetheless, which slows digestion), and it was for only 45 minutes. I've heard that the exam should be with a low fiber meal like eggs and toast, and be for 3-4 hours. Sorry, just rambling on there! :) It sounds like your GP has your best interest trying to get your results. Hang in there and keep us posted!

I think I slept a little better last night. Maybe the acupuncture is helping? Even if I'm just doing something proactive, it makes me feel better. I have some tiny beads on my ears (on tiny bandages) that are supposed to continue my treatment for a few days.

Today I'm going to a nursing home to see if it would be good for my mother. It's kind of sad, but I need to do it. It's a 45 minute drive out in the country. I need to get some new music to listen to in the car.
Maybe some Big Bang Cat? :)

How is everyone today? Is it winter-like where you are? It's getting chilly here.
 
Moogle, yes, I got your PM, haven't had a chance to listen to the music you recommended yet. Going to have a listen over the weekend while the hubby is at work. Good luck with your road trip today! And yeah, that's kind of how my massage therapist is too - he's a friend of ours, so he brings his massage table to my house and charges a reduced rate, which is nice. But he and my hubby just chat about nerdy stuff like Star Trek or whatever while I'm being massaged, and I think he forgets and uses too much pressure on me when he gets more into the conversations that he's having with my hubby. Even if I ask him to go a bit easier on me, he soon forgets once the conversation gets going again. But I like that my hubby is there, because I feel like it would be weird for a male friend to be rubbing me down when my hubby isn't around - not that I don't trust my massage therapist, I just feel like it would be awkward and I'd be even less relaxed during my massage. :p

I just don't know what is going on with me lately. I had so much nausea, fatigue, etc from the stupid steroid injections, then the side effects seemed to go away a few days ago and my appetite was good. But then yesterday the nausea came roaring back, and I had a wicked headache and gut cramps too. I slept like a log last night but still feel exhausted this morning. Head is still throbbing, tylenol kinda sorta took a little bit of the edge off the pain, but it's still a pretty hideous headache. Nausea is staying away this morning so far, but I wonder if that's just because I didn't eat dinner last night (I had a handful of crackers and that was all I could stomach) so my system is relatively empty. I'm currently attempting to eat a donut, because I know I need the calories. I've already lost about 3 lbs from last week's bout of nausea/no appetite, and I don't want to lose any more weight. I've been at a good, healthy, stable weight for awhile, but I'm finding lately that it's becoming easier to lose and harder to gain/maintain, which is one of my flare symptoms. Not good at all.

Jessie, good luck with the pill cam appt! I hope you can get it scheduled relatively quickly. I seem to recall that when I had mine (about 3 years ago, so things may have changed) that it was quite a new procedure that hardly anyone had done, so there wasn't a long wait time at all for my appointment. I think the nurse told me the hospital only averaged about 1 pill cam per month. It may have become a more common/popular procedure since then, I'm not sure. At the time, all my friends thought it was cool and so high-tech. :p "You swallowed a tiny camera? There's a camera inside you? You're like a cyborg now!"

How's everyone else? I hope we can all have a nice, restful weekend.
 
Oh, and Moogle, no, it's not winter-like yet but it's definitely fall! Winter-like for Wisconsin means lots of snow and bitter cold. It's been a bit chilly, upper 60s during the day and down into the 40s at night. I do have the flannel sheets on the bed and I got my down comforter out of the cedar chest the other day, but I haven't put my electric blanket on the bed yet. And we haven't turned the furnace on yet either, so it's not too bad so far. It's been like jacket weather, but not coat weather just yet. :) Which is fine with me, I'm in no rush for it to snow! My dog, however, absolutely adores snow. When there's fresh snow, she runs all around it like crazy because she's just so happy. And if we get a blizzard, she tries to run through that too - but her legs are so short, she has a really hard time making any forward progress! :p A couple years ago we had a blizzard where we got about 18 inches of snow in one day, and it took my dog about an hour just to get from one side of the yard to the other! So yeah, we aren't having any snow or wintry weather just yet, thank goodness, but I know it's coming.
 
It's not winter here. It doesn't really get cold here to be honest. But when it gets to the 50's, it's too cold for me. It's just getting to the low 60s overnight here, and staying around 80-85 during the day. I'm super sensitive to the cold (probably because of my weight). I hate winter and hoping I don't get a cold this year!

Oh, my stupid car had a check engine light come on so I'm not going to look at the nursing home. I'm back home and tired, so gonna rest a bit.
 
I know what you mean, I should be used to the cold by now as I've lived in Wisconsin all my life, but brr! It's like 70 degrees out but it feels cold to me inside. I'm wearing a long sleeve shirt, with a flannel shirt over it, and a fleece jacket over that! And I'm still feeling kind of cold! :p I do tend to get chills when I have symptoms, and I've definitely had the chills with these side effects of the steroid injections, plus I'm one of those people who is always cold anyway. I crocheted myself a new blanket to wrap myself in on the couch (apparently a fleece blanket, an electric heated throw, and my old crocheted blanket just wasn't enough and I had to make another one!). And I go through electric blankets like crazy - I get the dual-sided ones, as I like to crank the heat on my side and hubby likes his side low or off. So I crank the heat on my side of the blanket all winter, and I basically wear it out. The following year, I flip the blanket as hubby's side still works well, so I use that side for a year. After 2 years, I've basically destroyed the electric blanket from overuse and have to get a new one. I just bought a new one for this winter, I'm so excited! I love having a brand new, perfectly working electric blanket. I see they make heated mattress pads now too and I'm very tempted to get one. ;)

I made myself a new scarf this year too. I'm kind of obsessed with scarves and I have a zillion, but I always find an excuse to make myself a new one. I'm one of those people who can't just sit and watch TV or a movie idly - I have to be doing something, either playing a game or crocheting or whatever. Lately I'm either playing the Sims on my kindle or I'm crocheting. I can pretty much only crochet in a straight line, so it's either scarves or blankets for me! :p
 
its starting to drop temperature wise now, its been around 10c at night recently (50f ish I think?) I cant afford to heat the flat so I have a dedicated 15 tog single duvet that is on the sofa, my bf is sometimes allowed to share, depends if I think I need to be nice :p
 
Akiva, my hubby is always warm too, that's why he likes his side of the electric blanket low/off and I like my side warm/hot. :) He's one of those people who is always warm, and I'm one of those people who is always cold. So it works out well, I can cuddle up to him on cold nights.

I'm feeling blah again today. I'm on day 3 of this wicked headache. And I'm kind of exhausted. Going to attempt to go to the gym as I was even more exhausted yesterday and just couldn't make it to the gym. It's cool and rainy so I don't particularly want to leave my house, but I know a workout will make me feel better.
 
Cat, my hubs and I are the same way - he's always warm, he usually only wears a sweatshirt to work even in the coldest days of winter. I'm always cold, wearing a sweatshirt in the house when it's 70 degrees. It does make for some great snuggling on cold nights. Except for some reason I get super hot once I actually fall asleep!

I hope you made it to some kind of workout. I went with my hubs this morning for the pheasant hunting opener, but only walked the field with him for about an hour and then I had to take a rest. At least it was some kind of workout! Been super tired most of the day.
 
My appointment for pill cam is the 24th, so I'm excited :) I will first have a consult appointment thing with a highly regarded GI there so I'm really pleased about that as well. I think he will follow me now and if this pill cam doesn't show anything that he would figure out what it actually is.

I have to drink 1L of the 4L go-lightly prior to the test and they said it can take up to 14 hours. The battery life is 14 hours.

I also got the disintegrating zofran tabs today, so glad about that.
Still no gastric emptying test results.

Hope everyone is doing okay :)
 
Cindy, yep, I did make it to the gym - I didn't do great, I had low energy and it was a tough workout, but I did it. Felt better afterwards and managed to walk my dog! Really tired now but I have to fold laundry and figure out what to make for dinner (I'm thinking a can of soup is about as ambitious as I'm going to get). And if I have any leftover energy after that, I really need to work on our Halloween costumes. Phew!

Pheasant-hunting sounds interesting - do your dogs help your husband scare up the birds or whatever so that he can shoot them? Do you keep them as trophies or do you eat them? I've eaten smoked pheasant before and it was pretty good - it's really expensive in the grocery stores too! Like minimum $25 for a smallish bird.

Jessie, pill cam batteries must have improved a lot in the past 3 years since I had mine. They told me my pill cam's battery life would last about 8 hours, and it was 8 hours on the dot! That was enough for it to have completed its journey though so that was all I needed. Unless you do indeed have gastric emptying issues, I would wager you won't need the full 14 hours for the pill cam to make its way through you.

Moogle, got your PM - will check out those links when I'm not feeling so tired (hopefully soon!). I did listen to that DAI song when I went to the gym today, I give it the thumbs up as a workout song. :)
 

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