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Hey everyone. First let me say to Lizbeth - I'm so sorry to hear that you are in the hospital! But yay for a diagnosis, hopefully this will get you on the right track.

I had quite a bizarre experience. Everyone with a chronic illness or disease can probably relate. We went out for Halloween Saturday night in Eau Claire. I was dressed as a pirate. The sleeves of the dress were off-the-shoulder. My "brain tumor survivor" tattoo was showing. why not? Tats and pirates go together! These two guys were standing a little ways away from me. One of them asked me, "is that a real tattoo?" I said yes, and they came closer to look at it. When they read it, the first guy said, "is that legit?" (As if someone would get a brain tumor tattoo just for fun?) I said yes. He says, "Oh my gosh. I don't know what to say now, I was going to hit on you!' Then there was an awkward silence. His friend says, "Dude, really?" Then the first guy says, "I'm just going to walk away now." Seriously? I know you can't tell by looking at me that I have brain cancer (especially since I have all my hair), so I know it's easy to assume I"m healthy like everyone else. I guess it was really just a lesson in not making assumptions about the people around you; just because you can't tell by looking at them that there's anything going wrong in their lives, it's quite possible. In truth, everyone's life has some difficulty in it and we should treat the people we meet with dignity and respect. That guy could really have made the entire situation much more comfortable just by saying, "I'm sorry to hear that." and then just talking to me. By acting the way he did, he made me feel as if my cancer were something to be ashamed of, or that it was dirty or contagious or something. I was worth hitting on when I seemed normal, but not once he found out there was something wrong with me? I kind of wanted to be mean and say, "As if you could hit on me anyway!" but I didn't. I just let him walk away. Since I have a husband who loves me, who needs some stranger? :D Anyway, just thought I'd share, because having a chronic stomach condition is really no different. HOw would someone know just by looking at any of us that we struggle to eat and with pain and everything else?
 
Oh, Cindy, what a loser that guy is! I've been hit on by plenty of losers myself, but nothing quite like that. Even if you weren't married, you're still way too good for that guy! Maybe he saw that since you're a survivor of something so awful, that you are obviously incredibly strong and he couldn't handle a woman like you. ;) If it were me, I might have just laughed in his face! (I'm quite socially awkward though so maybe that's just me! :p )

Seriously, I have a hard time keeping a straight face when idiot guys try to hit on me. It happens at the gym fairly regularly when I'm there by myself (it doesn't seem to happen when hubby is with me, even though we do our own thing and don't really talk to each other while at the gym). This one guy at the gym - fat guy who clearly wasn't there to work out, he seemed to only be there to hit on women - he hopped on the elliptical in front of me, did about 3 mins, then hopped off and yelled, "Woo! Feel the burn!" in my direction (it was a Friday night so not many people there, and I was the only one in the area he yelled toward). I had to pretend to be engrossed in whatever was playing on the TV so as not to acknowledge him - I also had to try really hard not to laugh! Then later in my workout, as I was stretching, he brought some hand weights back to the stretching area and started trying to pump up his biceps right in front of me. I seriously had to stop myself from rolling my eyes and laughing at that too! And more recently, a different guy came back to the stretching area while I was the only one there, and he started breakdancing right in front of me! Hah! Now that one, I had to turn my head away and cover my hand with my mouth because I had to stifle a laugh that was already coming out. What is it with these weirdo guys at the gym? Do they think I'm impressed? I'm not single either so a bit of a moot point, but even if I was single, I would not be impressed by that stupid stuff. I would be way more impressed by someone who was quietly working hard and not trying to get attention in such an obvious, ridiculous way. You know, like how my hubby is at the gym! :p

Sorry, that was a ramble. My point was, there are so many idiot guys out there - try not to be offended by one. Try to find the humor in it because it really is ridiculous! So sad it's funny! If these guys only knew what we go through, they'd all back off because idiots like that are not equipped to handle complex, strong women like us. :)
 
mccindy said:
Hey everyone. First let me say to Lizbeth - I'm so sorry to hear that you are in the hospital! But yay for a diagnosis, hopefully this will get you on the right track.

I had quite a bizarre experience. Everyone with a chronic illness or disease can probably relate. We went out for Halloween Saturday night in Eau Claire. I was dressed as a pirate. The sleeves of the dress were off-the-shoulder. My "brain tumor survivor" tattoo was showing. why not? Tats and pirates go together! These two guys were standing a little ways away from me. One of them asked me, "is that a real tattoo?" I said yes, and they came closer to look at it. When they read it, the first guy said, "is that legit?" (As if someone would get a brain tumor tattoo just for fun?) I said yes. He says, "Oh my gosh. I don't know what to say now, I was going to hit on you!' Then there was an awkward silence. His friend says, "Dude, really?" Then the first guy says, "I'm just going to walk away now." Seriously? I know you can't tell by looking at me that I have brain cancer (especially since I have all my hair), so I know it's easy to assume I"m healthy like everyone else. I guess it was really just a lesson in not making assumptions about the people around you; just because you can't tell by looking at them that there's anything going wrong in their lives, it's quite possible. In truth, everyone's life has some difficulty in it and we should treat the people we meet with dignity and respect. That guy could really have made the entire situation much more comfortable just by saying, "I'm sorry to hear that." and then just talking to me. By acting the way he did, he made me feel as if my cancer were something to be ashamed of, or that it was dirty or contagious or something. I was worth hitting on when I seemed normal, but not once he found out there was something wrong with me? I kind of wanted to be mean and say, "As if you could hit on me anyway!" but I didn't. I just let him walk away. Since I have a husband who loves me, who needs some stranger? :D Anyway, just thought I'd share, because having a chronic stomach condition is really no different. HOw would someone know just by looking at any of us that we struggle to eat and with pain and everything else?
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What an absolute idiot!

In a similar vein, British society does not tolerate illness at all, if you are sick and young you are faking, work shy or attention seeking so it's better just to not talk about it at all tbh. God help you if you claim benefits for being ill, then you are screwing the innocent taxpayers! Many people do screw the system and unfortunately then those who are genuinely too unwell to work are stigmatised.

Unless you have cancer, then you are a hero and a fighter. British people are weird.
 
lsgs said:
What an absolute idiot!

In a similar vein, British society does not tolerate illness at all, if you are sick and young you are faking, work shy or attention seeking so it's better just to not talk about it at all tbh. God help you if you claim benefits for being ill, then you are screwing the innocent taxpayers! Many people do screw the system and unfortunately then those who are genuinely too unwell to work are stigmatised.

Unless you have cancer, then you are a hero and a fighter. British people are weird.
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I couldnt agree more, its even worse if u look 'well', then you are definitely a waster.

A wee update... pain is a bit more controlled i actually got 4 hours sleep last night, thats the most in months :). They have decided it was really crohns based on ctscan and symptoms, there has been very little improvement in the inflammation and narrowing in the last 11 months. There is talk of me going home if pain is controlled but im still waiting for gastro to see me. Then fingers crossed something is planned. Im still very sore and bloated, the nausea is horrendous, i had my long acting pain relief doubled and added in quite a few others.

McCindy.....the ignorance of people can be truly overwhelming at times, some day that young man maycome upon his own hardship and look back and realise what a prat he was.
 
lizbeth said:
I couldnt agree more, its even worse if u look 'well', then you are definitely a waster.

A wee update... pain is a bit more controlled i actually got 4 hours sleep last night, thats the most in months :). They have decided it was really crohns based on ctscan and symptoms, there has been very little improvement in the inflammation and narrowing in the last 11 months. There is talk of me going home if pain is controlled but im still waiting for gastro to see me. Then fingers crossed something is planned. Im still very sore and bloated, the nausea is horrendous, i had my long acting pain relief doubled and added in quite a few others.

McCindy.....the ignorance of people can be truly overwhelming at times, some day that young man maycome upon his own hardship and look back and realise what a prat he was.
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I'm sorry you have crohn's but at least you're on your way to feeling better! :)

I'm struggling with this LDN thing... I can't take painkillers which I use both to control pain and diarrhoea and I am climbing the walls without my dihydrocodeine. I knew it gets worse before it gets better but it's not even 11am and I'm on my 6th bathroom trip! And to top it off I couldn't make it into work yesterday and I have work at 2pm. I cannot be off again!! Stupid disease.
 
You guys are all so great! Thanks for the early morning smiles and chuckles! I guess people really are the same all over - here in the US, if you're on disability and don't look terminally ill, you're just using the system and bilking the taxpayers too.
Cat, I can't believe some of your stories, they are hysterical! How do you keep a straight face?:rof:
 
:p Cindy, I think I must somehow magnetically attract all the weirdos. They seem to hit on me when I'm alone, so my hubby never sees this stuff happen. I'm really socially awkward and I'm a nervous laugher, so really my first reaction is to laugh at this kind of stuff, and it is hard to stifle that reaction! I just don't want to acknowledge creepsters at all which is why I always try to stifle the laughs. If I'm by myself and I acknowledge a creepster, even by laughing, that could make it seem like I'm receptive to them, and obviously I'm not and don't want anything to do with them, so ignore/don't acknowledge seems the best route to go when I'm by myself. But if I'm with other people, then I would totally feel safe enough to laugh in the creepster's face! :p

Lizbeth, I hope you can get some sort of treatment plan and get some good relief! Hope you can go home soon too. Hang in there!

lsgs, hope you're getting through work okay. Did your doctor say how long LDN should take to kick in? Hopefully it starts working soon.

I'm doing okay today. My left knee hurts and I'm kind of crampy, but otherwise I'm not too bad. I've got some vacation days from work coming up and I'm really looking forward to the time off! :D
 
Thanks everyone :).
Sadly yesterday went downhill rapidly, i had been given senna and movical the night before cos i hadnt had a bm the day before, so the meds starting working and by noon id had 6 bms, each time it felt like razor blades were ripping my ti! The pain then stayed after and as i had each bm it got so i ended up on my side in tears for hours being given all sorts of pain meds. The silver lining is that the ibd nurse came to see me and pushed for gastro to get involved. So im starting mxt today (eeks) and probably having care moved to medical. Im scared about the mxt but know i cant carry on like this.......
Thinking about you all and thanks again for the support.
 
lizbeth, I'm so sorry to hear you're having such a difficult time. At least GI is getting involved, I hope they can get to the bottom (no pun intended!) of things for you and get you feeling better!

I wanted to update you all on the Linzess. So far, no more constipation - now things are kind of the other way..... :O Now I'm the one going three-four times per day. Except every couple days I'll skip a day. Weird. The pain in my belly is better, only comes now and then. I decided I'll wait until the side effects subside before trying any foods which have been problematic. The doc thinks there is a small possbility I might be able to tolerate some foods again, but probably not the ones that really cause problems, like gluten. For now I'm just grateful to be able to go on a daily basis. NOw if this rumbling will subside (sounds like I'm starving all the time). Unfortunately, it's even a little tougher to maintain weight now, especially since most of the time I have no appetite.
 
So gastro came bringing a big shock, having reviewed my case from the beginning it is now thought that inflammation is not the problem, seems ive now developed strictures. So no mxt instead colonoscopy planned on monday, mri to follow and then surgery. I feel devastated and am in shock. I thought i would have had a few years before I would need surgery. On the plus side, the pain has been much better today :).

McCindy thank you for your kind words. I look forward to hearing your experience of linzees and the thought of introducing some foods again must be very exciting. Good luck.
 
blimey you've not done it by halves have you?
Hopefully the colonoscopy etc will be ok. I'm glad the pain has subsided a bit for you, loads of hugs coming your way

I've got my first consultant appointment tomorrow, really not sure what's going to happen, the paperwork says to take a pee sample, and that I could be there for 2-3 hours. The appointment is at 3.45 so I don't think itll last that long :p

I've got loads of lists and questions, I just hope that the dr doesn't think its cos im a hypochondriac, its just with my dyspraxia, and being nervous, I will forget what I want to say, plus im going on my own :/
 
Lizbeth, my goodness! I hope surgery goes well for you on Monday. Do you have to spend the weekend in the hospital or will they let you go home? I'm feeling for you, hoping for the best, and that you feel much better afterwards (and after healing). What a shock to need surgery so suddenly, but I'd imagine it goes that way for Crohnies often. :(
Akiva, best of luck with your appointment. Don't worry about bringing your pages in, I had tons of them with me at my appointment and the doc seemed to think nothing of it. I'd imagine they get pretty used to it! I do the same thing with my neuro-oncology appointments also. It's hard to remember everything you want to ask, especially with the stress of the appointment at the same time.
 
Jeez Lizbeth sorry to hear you're gonna be having surgery. That really sucks :( Keep us posted on how you're doing!

Akiva, personally I'm at the point where I need to ask questions and not worry what doctors think about me and it's working out better for all involved. Don't be intimidated :) Hope it goes well and let us know.

I'm having a horrible time just now, hoping LDN kicks in soon but it can take 3 months according to the LDN support thread. I'm actually so fed up of my bathroom.

I have this horrible feeling I'm going to get sacked from work too
 
Lizbeth, I'm presuming the strictures are caused by scar tissue? If so, then yes, surgery is pretty much the only fix. But if the strictures are caused by inflammation then it's possible you might heal them with medication. I would check with the doc just to be sure (maybe that's why they're doing the scope and MRI, to make sure the strictures are caused by scar tissue?). Good luck with the scope - hopefully the prep isn't too vile.

Akiva, just make sure you write everything down, that way you won't forget what you want to talk to the doctor about. Don't let them brush you off as being a hypochondriac - you know your symptoms are real, it's not all in your head! I know it's hard to be confident, but try to think of the main things you want to accomplish. What do you want out of this appointment? Do you want tests, if so what tests - do you want information, if so what information. Write down all your questions, and then put the most important ones at the top of your list. Believe me, I've been doing this professional patient thing for 4 years now and I still write lists for every single appointment I have with my GI, GP, etc. I see my GI on Monday and I just printed up my list. Like Chickadee has talked about in the past, I want to ask him if he can stain my colonoscopy biopsies for mast cells, to look for mastocytic enterocolitis. So that's at the top of my list. Further down, I want to ask his thoughts on why I had 3 polyps when I'm still fairly young, and if I get to the bottom of my list during the appointment then I'll ask his thoughts about me having such strong side-effects to the steroid injections and if he thinks a steroid injection in the hip could affect IBD in such a way. You can see the priorities in order - I want to see first about him taking a look at something that could lead me to a diagnosis, then I want to know about a result from my colonoscopy, then I want to know about a side effect I had. If we run out of time and don't get to talk about the steroid side effects, that'll be okay, because I will have asked him the most important stuff at least. So try to make a list like that, with the #1 most important question (to you) at the top, and work your way down.

Believe me, I'm really socially awkward (to the point I suspect I may have Asperger's) so it's been tough for me to be assertive and act confident and ask for what I want in doctors appointments, but it gets a little easier every time. Remember, it's your health and you have to be your own best advocate, so try not to fret or fear, and speak up if something doesn't sound or feel right to you.

Oh, and it's actually quite promising that they said you may be there for several hours. I would imagine that means they'll want to take blood from you to run tests, and possibly do some sort of exam such as a flexi-sig while you're there. I would suggest bringing a book or something like that with you just in case it does take several hours! Good luck!

Cindy, how are you feeling today? Are you guys getting these icky rainstorms in MN too? I've had a throbbing barometric pressure headache all day. It started out foggy, now it's foggy and rainy, and it's supposed to be thunderstorms all night and tomorrow too. Yuck! I know the weather fluctuations affect your poor head, so I hope these storms are missing you.
 
I just got my test results and I have SIBO. I'm seeing my gi doc in a few weeks to ask for antibiotics. I'm hoping for the best. I will also start back on Domperidone probably. I've read that promotility drugs are needed to restore normal digestion so the bacteria doesn't regrow in the small bowel. I took Domperidone a few years ago with some success.
 
Moogle, is the SIBO more or less good news, insofar as at least when you know what the problem (or one of the problems) is, you can do something about it? Hopefully you feel better soon!

Lynda, have I totally missed something or did you just go from zero-to-60 in the blink of an eye?! Like, maybe-not-even-IBD to holy-strictures-batman in basically no time at all? My gosh, how does that even happen so quickly?

Cindy ... judging by those dudes' social ineptitude/uber-bro/awkwardness, it's kind of hard to believe you don't live in DC. Hahaha.



On my end: For about 30 seconds there, I was SO SURE I'd gotten all better and had totally accepted the idea that this was a temporary thing and not IBD.

Then, a few days ago, my stomach started hurting again without any particular reason, which I've learned always means something weird's afoot. I was feeling dizzier than usual too. I get the spins and lose vision a lot of times if I stand from a crouched position, but that day I was getting it even standing up from a normal chair.

Sure enough, that evening the stomach pain get worse and then had a bm a reddish mucus all over the stool. Saw more and more of the reddish stuff over the next couple days. Then I had diarrhea attacks that turned the toilet water a kind of orange-y color that looked an awful lot like red too.

I managed to convince myself it wasn't blood -- at least when the stool is solid, I see stuff like this a lot and have gotten used to telling myself it's some kind of bacterial/digestion thing -- until about a day later, when I had solid stool that looked just like the reddish-coated stuff, but instead of red, the gunk was pretty much black. I had D again after that yesterday, but it finally was back to looking vaguely normal.

Things have calmed down, but I'm just wondering what to do at this point. I'm still not 100% convinced this is blood and my GI seems so sold on the IBS theory that I'm inclined to just go on with my life. I do have a small bowel xray order, but the GI gave it to me to shut me up, pretty sure. Haha. I'm really not interested in swallowing more barium to have yet another normal or only-slightly-weird-but-hey-it's-nothing kind of a result come back.
 
Hello everyone....im still here and pain isnt too bad atm. ive been put on a soft diet which i had already done a few days before, so its possible thats why the tum isnt too bad. Apparently if my symptoms improve when on this soft diet, that alone can indicate if its stricturing. My dr is of a fair ly definite opinion that it is strictures and these further tests are to see to what extent. There is no date for surgery yet as results need to be reported on.

Bureau...you made me chuckle, i had visions of me flying round the ward like batman :).

i am thinking of you all even if im not saying anything. Take care everyone .
 
Cat -Yes, we had the chilly drizzles all day yesterday and they're still hanging around today. I'm hoping they end soon for the kiddoes to get out and trick-or-treat, this is my first Halloween living in town and I'm kind of excited about handing out candy tonight! I even decorated out front and bought a cool strobe light and everything. :D
I'm feeling all right. except for one odd thing. The Linzess gave me D almost every day-up until yesterday. then nothing, and nothing today except one little somewhat normal looking thing, and lots and lots of rumbling. Not that I want D, I'm hoping it's "normalizing" away from the side effects but still having the rumbling makes me wonder. I'm hoping it's not already failing. I'll give it a few more days and see what happens.


Bureaucratic, bummer... I know you were hoping to be done with the IBD thing. Sucks that it came back. The first parts of your post made me laugh though. Here's hoping for some improvement for you.

Lizbeth, sheesh. Feeling for you for sure. Keeping you in my thoughts daily!

Moogle, I haven't had time to Google, can you add some details?

Akiva, I'll have to check out your thread.
 
Cindy - I'm on another message board and someone with Linzess said she gets a lot of gurgling with linzess, fyi. Thought you'd want to know.

Cindy and Bureau - I've had a book on SIBO for a few years called "A New IBS Solution". The doctor who is leading the research behind small intestinal bacteria overgrowth is Dr. Mark Pimentel.

He goes on his book about how a lot of IBS patients may have bacteria overgrowth. Bacteria should be localized in the colon, not in the small bowel. The small bowel should be mostly sterile. It's where we breakdown and absorb our proteins, fats, and complex carbs.

Dr. Pimentel talks about how many IBS patients have had a viral infection, such as food poisoning. The virus can impair the stomach nerves from functioning normally. Our stomachs should be flusing out bacteria and waste throughout the day. The lack of stomach movements opens the door for bacteria to grow in the small intestine and feed off of the sugars/carbs before we can properly digest them. The bacteria in the small bowel let off hydrogen or methane gases. When that happens, it is the cause of the IBS symptoms (gas, bloating, diarrhea, and even constipation).

The protocol is doing a hydrogen breath test (with either glucose or lactulose). If it's positive for SIBO, then treatment is a course of antibiotics, primarily Rifaximin, which stays mostly in the intestines and has been used in clinical studies. The other two major things for treatment are using a promotility drug to stimulate the stomach nerves and restore cleansing waves to flush out the bacteria. Also a low residue diet is recommended too, so the bacteria will be starved of sugars.

Sorry that was a lot of info. But I'm really hopeful for the treatment. I've heard good results from the antibiotic. If it works, then maybe I'll have energy again and could feel well. Here is a really cool website with more info.

www.siboinfo.com
 
Thanks for the info Moogle! Good to know others with Linzess have the same rumblings that I do, so it's probably normal. Also I was back to D again this morning. Kind of a an urgent matter, as well.

The SIBO stuff is interesting too. If the Linzess turns out to not be the solution for me, perhaps I'll visit with my GI about SIBO as well and just see if he thinks it's a possiblity?

Does it sounds like the antibiotic and the promotility meds are a route to a cure for you? That there is an "end of the road" for you and SIBO can be resolved?
 
Hello everyone, how are you all doing?

Quick update....I'm home! Yipee! Going back in on Monday for a colonoscopy then have wait an mri appointment. And now I'm off to bed :), thank you all for your kind words and support.
 
How's everyone doing today?

I am having bm problems again. Stomach has been crampy since this morning. I took a bentyl a few hours ago and I'm a little better. It makes me drowsy though. I want to take a nap in a bit.
 
Hey guys. Lizbeth is your surgery planned for after the tests then? Are you feeling better?

Moogle I had a friend who took bentyl for ibs and she said it totally spaced her out, she couldn't drive or anything. Definitely take that nap lol.

I'm doing sooo good, ldn has kicked in, I haven't had diarrhoea for three days now. I went from 15 trips a day to 1 or 2. What is going on!!! I am hoping it's not just a coincidence but my energy levels are generally better too. I haven't thought about or missed painkillers in a couple of days. This stuff is pretty amazing, would love to have had monitoring to see what my fcp and blood tests were doing but hey, can't have everything.
 
Hello :). There is no date for surgery, most likely it will be well after Christmas by the time mri is done and results reported on. I didn't feel too bad earlier but got really drowsy (probably all the pain meds), so I went to bed but I had a bm first that felt like razor blades ripping inside and now I feel as bad as ever :(. I just have to get on with it.....bowel prep tomorrow yipee! Not!!

Google what does gently do?.
 
lizbeth, thoughts of you today, as I believe your colonoscopy is today..... hope all goes well.

Isgs, good news! So glad you're feeling better, yay! keeping my fingers crossed it's a long-term trend.

Moogle, hoping your nap helped and the meds as well. Feeling any better today?

I had a rough day yesterday, with some nausea and dizziness, ended up throwing up after dinner. Had some RLQ pain this morning as well. Seems like the Linzess is helping but it's not a cure-all, certainly. I think some of the dizziness came from my head stuff anyway.
 
Hey Cindy,

I'm realizing that I'm having a lot of hypoglycemia. It's really bad and I'm thinking of buying a blood glucose meter. I need to get it under control because the stomach problems are related to it I think.

I'm waiting on word about getting an antibiotic for SIBO. I have one weeks worth of samples. The pharmaceutical company is looking at a financial assistance application I sent. Hopefully they'll send me a week's worth.
 
I've either had the stomach virus or a bad flare-up of symptoms. Sometimes it's hard to tell which it is, you know? I'm thinking stomach virus. I think I'm improving, but I have no appetite.

Hope you guys are doing okay today.
 
I finally actually have progress to report, for the first time since...gosh, last December?? My husband & I don't have insurance so we were at the mercy of our local county health system, which...well, they wanted $2500 for a colonoscopy (that took me 6 months to convince the Dr's I needed). So! We finally found a good GI clinic in the area that's really great about self-pay and does payment plans, and I had my first appt yesterday. They scheduled me a colonoscopy and an upper endoscopy with no questions asked, hooray! The 21st and 22nd of this month, so soon! I've had to deal with a Dr who ordered unnecessary tests because he thought I said my pain on the opposite side, with staff who tells me that I just need to lose some weight and I'll be fine, with a GI who said I couldn't possibly have Crohn's because it's so rare...just the fact that I have a procedure ordered with no fuss is amazing to me.

Of course, now I'm really anxious about the procedures haha. Not going through them (thanks to this forum, I feel very well prepared!), but the results. I'm nervous that there won't be anything to find and it'll be a waste of money, and I'll be no closer to finding out what's wrong; but I'm also nervous that I'll be diagnosed with Crohn's, which....well, not really on my to-do list for my life. Does anyone else get that feeling of being between a rock and a hard place like that?

I hope your colonoscopy went ok, lizbeth! ♥

oh, and Chickadee: I had the flu for a few days..oh, a few months ago now maybe? It took me forever to realize I had the flu and my symptoms hadn't just gotten really weird all of a sudden, haha :| I know how you feel!
 
chickadee, there are a lot of viruses floating around this time of year, so take care of yourself and feel better!
rainbow, good news on finally getting the tests. While it would suck to hear that you actually do have Crohn's, getting a diagnosis would be a good thing because you will have a game plan on how to treat it. Being undiagnosed, as you probably know well by now, is a pain because no one knows what to do about what you're going through. Congrats on finding a good clinic, I hope you get the results you want from the tests!
 
therainbowrevolts said:
I finally actually have progress to report, for the first time since...gosh, last December?? My husband & I don't have insurance so we were at the mercy of our local county health system, which...well, they wanted $2500 for a colonoscopy (that took me 6 months to convince the Dr's I needed). So! We finally found a good GI clinic in the area that's really great about self-pay and does payment plans, and I had my first appt yesterday. They scheduled me a colonoscopy and an upper endoscopy with no questions asked, hooray! The 21st and 22nd of this month, so soon! I've had to deal with a Dr who ordered unnecessary tests because he thought I said my pain on the opposite side, with staff who tells me that I just need to lose some weight and I'll be fine, with a GI who said I couldn't possibly have Crohn's because it's so rare...just the fact that I have a procedure ordered with no fuss is amazing to me.

Of course, now I'm really anxious about the procedures haha. Not going through them (thanks to this forum, I feel very well prepared!), but the results. I'm nervous that there won't be anything to find and it'll be a waste of money, and I'll be no closer to finding out what's wrong; but I'm also nervous that I'll be diagnosed with Crohn's, which....well, not really on my to-do list for my life. Does anyone else get that feeling of being between a rock and a hard place like that?

I hope your colonoscopy went ok, lizbeth! ♥

oh, and Chickadee: I had the flu for a few days..oh, a few months ago now maybe? It took me forever to realize I had the flu and my symptoms hadn't just gotten really weird all of a sudden, haha :| I know how you feel!
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I don't know your story but my advice would be no matter what the results, do not give up. You are the person who is best placed to say if there's something wrong with your body.

I was scoped and scoped and scoped and it's only now they acknowledge there is a physical problem. It is not always as simple as getting scoped and getting a diagnosis - there are issues of have they biopsied the right part of the bowel, is it in the small bowel etc. I mean it would be good to get answers but a negative result does not mean all hope is lost.

I hope the procedure goes well and we're all pros at preps and scopes in here so any questions or problems... you know where we are! haha.
 
Hey guys.
I've had my letter today telling me my colonoscopy is on the 5th dec. Ive had a really crap day though.
Had uni at 10. Was still in toilet at home at half 9, but managed to drag myself in (in a taxi) because my attendance is appalling. I felt awful and was late so I felt guilty but the lecturer was too so it didnt matter.
I was in tracksuit bottoms because my tummy was so sore. One of my friends I sat with commented 'are you going for a run' I wasn't amused but just ignored the comment.
I was battling staying awake through class and was in a lot of pain. Ireally didn't want to eat anything but had to cos of my pills (been put on mebeverine) so I ate a muffin (one I know doesn't make me ill) was in loads of pain and had several people tell me I look like crap which didnt help.
Afternoon session was really bad, was in a lot of pain and the lecturer actually stopped the lesson early and told me to go home (she let everyone go but told me I didn't look well, she knows im not)
Then on the bus in the way home with a different friend and she was like 'the prednisolone has really made you big. Like your face and neck is really fat.'
Im really conscious of that cos im overweight anyway, but it really upset me. When I got off the bus I had that awful stabbing pain which I know means imminent disaster. I made it home (just) and threw myself into the loo, where I proceeded to have diarrhoea for an hour or so. I wanted to say bye to my boyfriend before he left for work but I couldn't stop pooing long enough to pull my pants up so he went without a kiss and cuddle.
Now im on the sofa feeling sorry for myself and have had a good cry but don't feel that much better
on the plus side ive now done my 3 poop samples the hospital wanted which were faecal ...elastase?
faecal calprotectin
microscopy c.diff and culture and sensitivity
 
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Akiva, I'm so sorry to hear you had such a bad day.
How insensitive of your friend to point out that the steroids are making your face puffy... as if you didn't notice?
I'm glad to hear that at least your instructor noticed that you needed to leave and was able to help you out.
Hugs and love from across the ocean, and I hope that today is a better day for you.
 
Today is better, in some discomfort but ntb. Im in uni (its my day off) and ive seen one lecturer for a tutorial, and ive got to see the programme leader for another one in an hour and a half (4pm) and ive got to talk to her about the hospital and sickness etc. Dreading that.

I wasn't supposed to be in this late, so I cant eat etc cos ive not got my pills with me, I should have been home after 1, so I didn't bring them (they are light sensitive so im keeping them in a box in a drawer under my bed) (I have my usual stash of immodium, codeine, paracetamol though lol)

As for my 'friends' ive decided they just aren't worth it. Slightly worrying that they are like that bearing in mind they are also training to become nurses.

Ive got one friend who im telling pretty much telling everything, shes being great and letting me rant to her, shes in a smilar situation cos she needs a gastroscopy (possible ulcer) but cant get referred cos shes registered at 2 drs and neither want to take responsibility. we support each other. I do worry that I go on about being ill a bit too much, but the two things in my life are being ill and uni, and I seriously dislike both lol
 
Akiva, I'm glad to hear that you have a good friend who is supporting you in person through all of this. I think you're right, it's probably time to leave those other 'friends' behind and move on. Sad to think that people who are so insensitive are training to be nurses; hopefully they will learn from losing you as a friend that they need to learn to be more compassionate and empathetic.
Hang in there and stay strong. I'll be thinking of you today.
 
Thank you, mccindy and lsgs! I know rationally that getting diagnosed can only be a good thing with the everyday pain I'm going through, I mean, I really can't get the help I need without it. Emotionally, it's still hard to deal with. My husband keeps telling me the same thing though, I'm glad he's with me to keep me on track when I get crazy about everything, ha.

Oh, akiva, I'm so sorry to hear about your day :( I had to quit work right when the fatigue & exhaustion set in for me, and I'd already been out of school for a while...I really couldn't imagine trying to live a normal day anymore, I'm so sorry that you have to struggle with that. It's so good you have a friend in a similar situation though; the friends around me that've been the best are the ones with ongoing medical issues or maybe who've had family members who've gone through crohn's/ibd. Definitely only focus on the positive friendships you have! The negative ones totally aren't worth it anymore, you have way too much to be dealing with to have that on your plate as well, you know?
 
There's a pretty good chance I've had a GI bleed going on for about ten+ days now. Problem is, except for spots here and there, it's hard to tell what's blood and what's that same orangey mucus I've had for ages now and what's just normal mucus that's kind of brown because it's been chillin' out with poo.

The blood, when it's been obvious, is too dark to be a hemmie, I think, but who knows?

Sigh. It's a strange world I've entered. I'm alternating between bloody poo multiple times daily and then not pooping for five days and then bleeding again, and I still don't know if it's time to go to the doctor because he thinks I'm nuts.
 
BN-- Could you ask for a hemoccult test, where you smear a bit of BM on a card to check to see if there's blood?
 
Isn't it wrong that we need to ask for tests? Something's seriously wrong with this country's medical system. It would be easier if they handed out a menu at the front desk and we ordered all the tests like a restaurant. One colonoscopy with a side of hemoccult test please. Service with a smile! :p
 
I'm also in a strange place with things.... I had been taking the Linzess for a week, and it caused a lot of diarrhea in the beginning. NOw I'm back to skipping days of going and it's getting harder. I looked up the med online and checked my bottle at home, and it turns out the dose they have me on is 145 mg, which is the dose for chronic constipation. The dose for IBS-C is supposed to be 290. So I'll be calling today to find out what the story is there.
Sitting here in my office right now and my staff is taking their morning break, so the smell of toast is wafting in..... <sigh>. Sucks when you can't eat bread and it smells so darn good.
 
Uh-oh, it's gotten quiet in here during my time away! I go back to work tomorrow, so once I get caught up with everything, then you'll likely be seeing more of me (I, er, may or may not sometimes post from work :shifty-t: ).

Bit of an interesting update for me. I saw my GI on Monday. Told him I've still been having some symptoms, including that I had blood in my stool again recently. He suggested switching me from amitriptyline to nortriptyline (I've written more detail about this in the Amitrptyline Club thread so I won't repeat that here). I didn't think that nortriptyline would do much, but I agreed to give it a try. Well, I haven't had any d nor blood since making the switch. It's still too soon to say for sure whether it's helping, as it's only been about a week, but it's promising so far.

So how's everybody else? What's new, what's happening?
 
Hey Cat,

I've been having ups and downs. My SIBO breath test was positive. So I probably have bacteria overgrowth in my small bowel. Whoopee. (Sarcasm).

I went to my gi doctor and his first reaction to the test results were "Who ordered this test?" I told him I did it at home with a test kit. He said he doesn't like to do the breath testing because of the reliability and it's another thing on top of the gastroparesis and IBS which makes things more complicated. It kind of ticked me off, because my hopes were that maybe it is the cause of my problems.

Well, he said he's treated patients for SIBO before and it's not unreasonable to do the antibiotics. He gave me a week's worth of samples of Xifaxan. I need two week's worth for the treatment. I'm waiting for response from the Xifaxan company for financial assistance, possibly more samples. If I can't get more samples, then my doctor said he could try Flagyl or Cipro. I've read erythromycin is effective too.

I'm trying a gluten free diet now. I just started. It's really hard for me. I've tried a few times before but I fall off the wagon because I think I'm really addicted to wheat.

Still trying imodium and questran for my D. It hit last night out of the blue. I ate dinner, took a walk in the park and had to go. I was in the health food store of all places, haha! At least they had a clean bathroom. :p
 
Hi Cat,
Glad to hear the nortriptyline seems to be working so far, fingers crossed!

Moogle, I hope the xifamaxin makes a difference for you :) I was gluten free for almost a year. You need to 100% commit to it and then it becomes like second nature. If you truly believe it is causing problems for you then go hard and completely eliminate it. You need to do it for at least 2 months or more to judge if it's helping.


As for me, I got the results of my capsule endoscopy on Thursday and it was completely normal. No signs of any ulcerations, aphthous ulcers, narrowing, tumours, anything abnormal whatsoever. I was kind of expecting that. I think I wrote this before, but the new specialist in the larger centre that administered this test felt after taking my history it is a widespread motility issue triggered by infection/antibiotic use (because I had an infection and took antibiotics prior to going on my vacation where after everything started) rather than something like crohn's. So guess he was right.

The domperidone (motileum) has actually been helping quite a bit last few weeks here. I have been on it since near end of september and at first it was doing nothing, then maybe slightly helping but I wasn't sure, and now for the past bit my vomiting has been reduced and I'm not vomiting every day anymore in most cases. Unfortunately the large distention is happening more again since more food is staying down. I am feeling less lightheaded and weak too, presumably since I'm keeping more food down and not screwing up my electrolytes with vomiting. I want to just get rid of it all though. It's still awful even though it's some improvement.

My GP is soo great though, he is saying how he is going to get me feeling better and reduce these symptoms and we will try whatever we have to, etc. and how it's not good enough how I'm feeling now. I am so glad I have him now and he is so supportive :) He is consulting with my original GI who I haven't seen for a bit since he referred me over to a surgeon for the intussusception issue. My GP wants to get a GI perspective for where to go from here. When I see him I think I may ask about trying pantoprazole or a PPI of some kind. Because I have thought for awhile that a lot of it could be acid reflux, although I don't have the burning. And I don't know if that would help with the distention at all, but it's worth a try and may further reduce the nausea and vomiting, and maybe even the distention who knows.

I also do wonder about SIBO but when I mentioned it to my GI months ago he didn't feel it was that due to my constipation. I may mention it again, and also may ask about getting stool for O&P since I never got that done even though all this started after a trip to a tropical area.
 
Lately in the mornings it's been rough with my tummy. It always seems like my tummy isn't ready to go to work. Then I call in sick and I feel guilty for missing work and not making money...Even though it's hours before my shift my tummy isn't ready. To much gas and morning d and it takes soo long. *Sigh* Yay mornings!
 
Jessie, according to Dr. Pimentel's book SIBO can also cause constipation. If you do the breath test and there's a high amount of methane instead of hydrogen, that could be behind the constipation. He also mentions about how after viral infections (such as food poisoning), it can lead to motility problems which allow the bacteria to grow in the small intestine. With normal motility, people usually flush the food down with the bacteria.

I'm not wanting to lead you down any wrong path, because I'm not a doctor. But if you are interested in SIBO, check out www.siboinfo.com or http://www.anewibssolution.com/

Also, Crystal Saltrelli has a very good video about gastroparesis and SIBO here:
http://www.youtube.com/watch?v=bt7SxeNIHuQ
 
Melibean, that does suck. Try to hang in there. What are you doing to manage your symptoms, do you keep a food diary? Is your work very flexible, will they allow you to start your work day later and then stay later?
Jessie, how did you manage to come back to gluten? my doc is pretty sure my gluten intolerance will be permanent. But I'm curious about your case, I had heard that the longer you go without eating gluten, the harder it is to go back to eating it because the body naturally becomes intolerant without it and 'forgets' how to digest it? Wish I could go back to eating it, I miss bread. :(
Glad you're back, Cat! It is quieter without you. :)
 
<----total "limbo-er"

my gi is "90% sure i have crohns" but because my biopsies showed only mild to moderate inflammation he cant diagnose it. all of my other tests show signs of crohns...
high crps, endographyies, you name it. the one test that i need is "inconclusive". this simply means he wants more tests which are straining and expensive. like a trooper i succum to his recommendations only to get another "inconclusive". He says in one breath "i can not call it crohns yet" and in the next will say"this is how we are going to treat your crohns" and this will be "lifelong". talk about ambiguity!

my greatest fear is that he will say that i no longer need treatment. i was sick every minute of everyday for the last three months and have finally found COMPLETE relief on Prednisone (which, as my gi doc puts it, "is a really effective drug for treating crohns").

sorry you all are going thru the same thing but at the same time i am thankful i am not alone.
 
McCindy,
I'm not keeping a food diary but I will start after today. I think it's red meat that's been giving me trouble. My work is flexible but I'm just always very scared that I could be dismissed. My pain is stomach cramps, nausea, gas and d. I take levsin for the cramps and loperamide for D.
 
Melibean said:
McCindy,
I'm not keeping a food diary but I will start after today. I think it's red meat that's been giving me trouble. My work is flexible but I'm just always very scared that I could be dismissed. My pain is stomach cramps, nausea, gas and d. I take levsin for the cramps and loperamide for D.
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I fear for my job as well. I am unable to go on to "intermittant FMLA" because I dont have an official diagnosis so my doc wouldnt fill out the paperwork. However, if I do force myself to go in sick, my symptoms increase and I start bleeding. Maybe youll find a doc that is sympathetic enough to help you out. FMLA means federal protection of your job
 
Laurabelle,
I don't know if my temp company will cover or if my GI will think I warrant it, but as far as qualifying for it, I've checked and looks like I do.
 
Melibean, I'm glad to hear you are willing to start a food diary. It can be really helpful in finding out which foods are causing you discomfort. Sometimes it really helps as well to just eliminate all but a few foods which are easily tolerated and then try one at a time, wait a couple days and see how it turns out. It's time consuming, but worth it because you eventually get a good balance of foods and less pain. I hope things at work start to get better for you.
Laurabelle, welcome! It's frustrating to not get a diagnosis and hence, not be able to take the time off that you need to get well. I saw in another post of yours that you are an MLT and have understanding coworkers, what a blessing that must be! My sister-in-law is also an MLT and she really enjoys her job. Here's hoping you get a diagnosis soon.
 
Little bit of a side note but thought it might make you all laugh,
Now im not scared of spiders but... I was on the loo earlier, minding my own business when a spider (one with the smaller body and MASSIVE legs) came across the bathmat towards me, I moved my foot out the way but it followed me and ended up in my trouser leg, at which point I luckily was able to stop what I was doing long enough to shrieking to get off me and swearing and start hitting my leg with my other foot in the hope of getting the damn thing out, it didn't work and the spider eventually got squished on my leg. during this my boyfriend is trying to break the bathroom door down cos he didn't know what was wrong, when I told him it was a spider he was really annoyed because he was scared I was ill. Which set me off into giggles cos I cant imagine what he thought I had on me :p , not laughed so much in ages. luckily today has been an OK poop day, I dread to think what would have happened otherwise :p
 
Laurabelle, welcome to the club. Right away I must say, your doctor should be filling out the FMLA paperwork anyway! You don't need a diagnosis to qualify for FMLA. As it was explained to me, all they really need to see on your FMLA paperwork is that you have an ongoing serious medical condition that will require you to take more days off sick than the average (healthy) person. I've been on FMLA for a few years now, my doctor sometimes writes "undiagnosed" and sometimes writes "IBD/colitis" on my form - either way, it gets approved. I would talk to your HR department about this, perhaps they can contact your doctor and clarify for them that you don't need a diagnosis and that the doc should be filling out the form as best he can anyway!

Melibean, you should be applying for FMLA too (anyone in the US should!). It's been a lifesaver (and job saver) for me! And I agree with Cindy about keeping a food journal. Red meat is a trigger food for me too, but I find that ground turkey is a pretty good substitute for ground beef. I don't do any beef nor pork anymore, I only do poultry & fish. But anyway, I've got some weird trigger foods (such as garlic) that I wouldn't have figured out if I hadn't kept close tabs on what I was eating, so I definitely concur about keeping a food & symptom journal.

Moogle, I feel for you, gluten is something I eat at pretty much every meal and I would be lost without it. I haven't ever gone gluten-free, but when I flare, I usually feel better after eating something like toast or pasta. I've definitely noticed a correlation between symptoms and certain foods, but not gluten, so I think I'm in the clear. And I've been tested for celiac 3 times now (1 blood test and 2x upper endoscopy w/ biopsies), so I think I'm in the clear at least as far as that goes. I have no idea though if I have SIBO. I wonder, do fecal transplants work to "cure" SIBO? I know fecal transplants can cure other bacterial issues such as c diff - I know a fecal transplant doesn't sound like fun, but I think if it were me, I'd try that rather than go gluten-free. You might want to look into it. It shouldn't cost much - all you'd need to do is screen the donor to make sure they wouldn't be passing any weird illnesses to you through their feces, and you can do the fecal transplants at home via an enema if you're brave enough to do so. Just a thought for you - as a fellow gluten-lover, I feel your pain!

Jessie, I have severe GERD, which is basically chronic acid reflux - but I never get the burning/heartburn sensation either. What you describe sounds a lot like what I have. And antacids help me a lot - I currently take Nexium 40 mg, Zantac 300 mg 2x daily, and Tums as needed (I also keep a stash of Prilosec/Omeprazole just in case things get really bad). When my reflux is really bad, I'll feel "stuff" (stomach contents which sometimes is just plain water) come up my throat. Sometimes it happens when I bend over forward - it's like stuff doesn't stay in my stomach, and it starts pouring up my throat. Sometimes it's accompanied by nausea and sometimes not. It's worse when I'm lying down and it's usually at its very worst when I am working out, particularly if I'm working my abdominal muscles. Certain trigger foods make it worse, too - anything tomato-based such as spaghetti sauce, chocolate, peanut butter, and anything really greasy or deep-fried. Things that help include avoiding those trigger foods, taking precautions when I exercise (no food for at least 2 hours before working out, only water - not even gatorade - and I have to take a bunch of antacids just before hitting the gym), sleeping propped slightly upright, etc. And it took me awhile to get a good balance of reflux meds - previously, my GI put me on a double dose of Nexium, but that lowered my digestive tract's pH so low that I was then not able to break down my IBD meds (Asacol)! So now I'm on a good balance, my reflux meds keep things more or less under control and I can still break down my other meds too. Anyway, I'm rambling, but I would say that with what you described, even without acid/burning/heartburn, definitely give reflux meds a try.

How's everyone doing today? It snowed here! It snowed enough that the grass is somewhat covered with snow! Eek, no, it's too early in the season for that. :( It's supposed to get bitterly cold tonight too, yuck! I have a feeling it's going to be a very long winter. My guts are okay though - the guts are fine with cold, the guts hate heat & humidity. My joints don't like cold/snow, although they're okay so far, so we'll see what happens. The steroid injections may have actually worked after all, as my hip feels fine! Usually it aches when it snows. It also usually aches in bitter cold, so tonight may be more telling. If my hip feels okay tonight then I might jump for joy! :) (Although that might make my hip hurt, ha ha!)
 
thanks for the followups! i will definitely contact my hr department tomorrow regarding the issue...my only concern is that he and i both work for the same healthcare system so he probably knows hr policy regarding the matter. will figure something out (crossing fingers)
 
Laurabelle, is it your primary care doc who is refusing to fill out the FMLA paperwork? Do you have a GI or any other doctor? My GI has filled out FMLA paperwork for me at least once, although my primary care usually does it (neither of them have had any problem with filling it out in spite of the fact that I'm undiagnosed). In fact, I think my primary care doc usually has his nurse or physician assistant fill out my paperwork, and he just reviews and signs it. So perhaps you could talk to your doctor's nurse or PA? Whatever you end up doing, good luck!
 
akiva, OH MY GOD! I probably would have broken myself and the bathroom trying to get out! I am deathly afraid of spiders and having one on me is the ultimate in panic-inducement. I did have to laugh about your boyfriend trying to come in and save you and then being annoyed that it was a spider. :D
 
Akiva, I giggled at your story about the spider! (I think I missed seeing it earlier, must have posted at the same time as you did.) And glad that you could laugh about it afterwards - hopefully your boyfriend can laugh about it too and isn't very annoyed. I don't mind spiders myself, but I don't really know what to do with them this time of year either. I don't want to kill them, so I'd like to catch them and let them go - but it's too cold outside, either the cold will kill them or they'll find a way right back inside the house. Anybody else a spider pacifist like me? If so, what do you do when you find a spider inside the house during the colder months?

Speaking of the colder months, I hate winter! :( It's so cold out, and it gets dark out so early this time of year. It's just past 5 PM and it's already totally dark outside. That makes me feel sleepy - I want to do a bit of yoga, but I'm sleepy and kind of don't want to do anything. Bleh, stupid dark cold winter! On the plus side, my joints are still feeling totally fine, so there's that.
 
Moogle33 said:
Jessie, according to Dr. Pimentel's book SIBO can also cause constipation. If you do the breath test and there's a high amount of methane instead of hydrogen, that could be behind the constipation. He also mentions about how after viral infections (such as food poisoning), it can lead to motility problems which allow the bacteria to grow in the small intestine. With normal motility, people usually flush the food down with the bacteria.
Click to expand...

Thanks Moogle, I will look at those links. The only problem is they don't do the breath test in my area so I would have to travel to the larger centre out of province (and obviously be referred for it). I should have asked for it when I did my capsule endoscopy but I didn't... I will mention it again to my GI and say how I seen it mentioned that it can sometimes cause constipation too. Thank you for the information!

McCindy- I was negative for celiac both through blood tests and biopsies during my upper endoscopy. I felt like I was getting more symptoms of distention/pain etc following gluten so after my scopes I tried going gluten free. [this was all summer of 2012 and went gluten free end of oct 2012] My GI felt it was possible I could have a gluten intolerance if I noticed a change. Initially I did notice some improvement. Mainly with the constipation. I was spontaneously having bm's again where before I would wait and wait and wait and eventually be so uncomfortable I would have to resort to laxatives/meds. The distention still seemed to be happening quite a bit so then I thought it might be dairy. When I returned for follow up with him about a month after going gluten free he was pleased with the progress and felt it was probably gluten intolerance and possibly dairy intolerance/sensitivity and I could try cutting that out if I wanted. He did say that after awhile I could try introducing back small amounts if I wanted, and see how I did with it. He said it may be once my system settled down some I could tolerate it, or it could be that I would always be sensitive- he wasn't sure. About 2 months later I tried something and got extremely distended so that made me feel very sure that's what the problem was so I didn't eat anything again from january til mid september. When I was in hospital on IV with the bad flare up of nausea/vomiting and couldn't keep anything down, and they were talking motility issues, I started figuring maybe gluten didn't have anything to do with it, and I knew there was toast as part of the motility study so when they gave me crackers in the hospital I ate them and it was fine, so I kept eating crackers over the next few days and it was still fine, and then I did the motility study and although I was extremely nauseated with that I knew I would be anyway because of the amount and how small of portions I could handle at that time. Anyway, ever since then I've been eating gluten. I really am trying to keep it to small amounts though because I do find it does impact my constipation for sure. But it's harder to cut it back out once you are eating it. It seems like all or nothing is easier for me :p I have been having like maybe 6 crackers and a small wrap per day. Something like that. No big pastas or bread or anything like that. I did have some rolls on thanksgiving and pie, etc but for the most part it's crackers, wraps and a few cookies here and there :p Sorry that was so long. [Also, I was never a big bread eater, don't like store bought bread]

Cat- I knew you had severe GERD but didn't realize you didn't have heart burn with it! I knew it was possible to have it without heart burn but not really as common. Wow you're on a lot of meds for it.
Mine also can be worse when I bend over, or when I stand up. and it's definitely worse when I'm moving around, walking, standing etc. The difference is when I lay in bed it's the best, and my symptoms can be very minimal. I am not usually laying flat though since I'm on my computer I have my head propped a bit with a pillow to see the screen, so maybe that's the difference? But even laying to go to sleep it never seems bad.. I sleep on my stomach so not sure if that accounts into it. Since I don't have IBD meds to break down I don't think ph issues would be applicable for me. (My motileum - (noticed I made a typo last post btw.. not 'motileum') is just a tablet so it wouldn't need a certain ph to break down.) Thank you for your experiences and encouragement. It certainly couldn't hurt to try I wouldn't think. I will definitely mention to him. Mine the nausea is usually always there with my vomiting and sometimes nausea without vomiting. But I have had a few times where it seems to come very suddenly with only seconds of nausea as it's about to happen.

I often feel like the nausea is almost a sensation of something moving up and down/all around from like my mid upper stomach all the way to my throat. Like things are just going wild in my stomach and esophagus if you know what I mean haha.


Seems a bit early for snow! And yay about your hip!! Hope that lasts :)
 
:(
Cat-a-Tonic said:
Laurabelle, is it your primary care doc who is refusing to fill out the FMLA paperwork? Do you have a GI or any other doctor? My GI has filled out FMLA paperwork for me at least once, although my primary care usually does it (neither of them have had any problem with filling it out in spite of the fact that I'm undiagnosed). In fact, I think my primary care doc usually has his nurse or physician assistant fill out my paperwork, and he just reviews and signs it. So perhaps you could talk to your doctor's nurse or PA? Whatever you end up doing, good luck!
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Both my primary and GI are refusing to do it.

(Doubt my gi would do it... I actually talked over the phone with my Gi today about a colonscopy/biopsy I had taken last week....totally negative (I am both relieved and in a weird way disappointed if that makes sense). He said "no Crohns disease in the entire length of my small bowel. Lets taper off the Prednisone and we'll be done". i naturally asked,"what will replace it?" He said i wouldnt need anything. I am not a hypochondriac but i FEAR the day I get to the bottom of my pill bottle and see it empty. you dont get so sick that you end up in the hospital then have a specialist tell you for three straight months that this is going to be a lifelong problem and all of the sudden are able to just move on without pills. oh and my video capsule endoscopy showed ulcerations in my LARGE, not small, intestines. why wouldnt he test me there as well? its as if he is saying i am not sick at all anymore which would be great but if i am sick and its ignored i could end up in the hospital again or, God forbid, much worse :(
 
laurabelle said:
:(

Both my primary and GI are refusing to do it.

(Doubt my gi would do it... I actually talked over the phone with my Gi today about a colonscopy/biopsy I had taken last week....totally negative (I am both relieved and in a weird way disappointed if that makes sense). He said "no Crohns disease in the entire length of my small bowel. Lets taper off the Prednisone and we'll be done". i naturally asked,"what will replace it?" He said i wouldnt need anything. I am not a hypochondriac but i FEAR the day I get to the bottom of my pill bottle and see it empty. you dont get so sick that you end up in the hospital then have a specialist tell you for three straight months that this is going to be a lifelong problem and all of the sudden are able to just move on without pills. oh and my video capsule endoscopy showed ulcerations in my LARGE, not small, intestines. why wouldnt he test me there as well? its as if he is saying i am not sick at all anymore which would be great but if i am sick and its ignored i could end up in the hospital again or, God forbid, much worse :(
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Time for a new doctor for sure !!
 
Christina hit it right on the head there, Laurabelle, it's time for a new GI. If he isn't listening to you and doing everything he can to find out what's wrong with you, he's not doing his job. Especially if he's refusing to help you with your FMLA. Sounds like he's one of those docs, if he can't find a quick answer, he gives up and assumes you're faking. Get another doc, quick!
Jessie, glad to hear you figured out how to still have some gluten. I cut mine out, then tried just a bit again (failed), then cut it out, then tried again (failed), and decided that it wasn't going to work. I talked to my GI about it and he said that it is likely a permanent intolerance in my case. :( I've never liked store bought bread but I've always loved fresh, homemade bread and also a big fan of pasta. Boo!

Cat, my mom is a spider sympathizer like you. She will take them outside even in the winter and hope they find a corner to curl up in, or find a local shed to drop them off in. If they are on her deck she just leaves 'em alone and takes pictures of them. It drives me crazy and I refuse to go out there because I know she shelters the creepy little things.
 
Cindy, your mom sounds like a cool lady. :) (I take photos of stuff like that too - I just found a garter snake in my yard the other day while raking, and I took some photos of it before gently moving the snake away from where we were raking.) In my case, I have to get the spiders out of my house, because if I don't then my cat will eat them. So, maybe your mom needs a cat? ;)

Laurabelle, did I read that right - the pill cam found ulcerations in your colon? Did they do a colonoscopy and take biopsies of the ulcers? Did they offer you any explanation as to what is causing them? If prednisone is working and you have ulcers, I don't know how they could be saying it's not IBD! I agree with the others, time to find a new doctor - and fast, before the pred runs out! How long are you on pred and what dosage? You may feel okay, if you're on a longer run of it then it may bump you into remission and hopefully you can stay there once the pred runs out. But, if you're on a shorter run/lower dose of it, you may start to feel worse once you taper down or come off of it. So your fear about running out of pred is legitimate, and I wouldn't waste any time in looking for a more competent doctor who takes you more seriously.

Jessie, yep, I've read stories of a few other people on the forum who also have GERD without heartburn, so it seems to me it isn't all that uncommon. I have a hiatal hernia which seems to be part of the cause of my GERD issues (hernia on the valve between the stomach & esophagus, which means that valve is more open and allows more stomach contents to come up). Since I'm on so many reflux meds, my acid levels are kept pretty low, but the reflux meds don't always do so well at keeping my stomach contents in my stomach. So that's why I tend to feel "stuff" come up my throat - it's not usually very acidic, and sometimes it's just plain water, but it shouldn't be coming up like that. My GI said that my hiatal hernia is small and "sliding" (meaning the valve isn't open all the time, only sometimes), so that doesn't account for why my GERD is so severe. I had a test done last year to check just how bad my GERD is - the test was called pH impedance test. They stuck an NG tube in me for 24 hours and monitored how acidic my stomach was, how high in my throat my reflux was going, how many episodes of reflux I had, etc. They give you a score of how bad your reflux is above normal. So 0% is normal, no reflux, and 100% is like the worst reflux ever. I scored a 95%! :p I was actually pleased by that result, finally one of my illnesses showed up on a test result! Ha ha. Seriously though, the results said I had 48 separate episodes of reflux in a 24 hour period, with the longest single episode being about 5 hours long. And I think they said I refluxed about 60% of the time when I was lying down, the results confirmed that I'm much worse lying down than standing up/sitting. Oh, and about half my reflux episodes reached the top of my throat. It was a very interesting and illuminating test result, for sure. They're still not sure why my reflux is so bad, but at least I got a strong result and know what's going on, even if I don't know why. Anyway, if you are having some GERD-like symptoms, it may be worthwhile to ask for that pH impedance test. It's not super fun having an NG tube in for a full day and night, but I feel like it was worth it to know what's going on. I do take a lot of reflux meds, but given how severe things really are, I feel justified in taking that amount of meds. (My one big concern is that most reflux meds can leach calcium from your bones, so I try to combat bone loss by taking calcium supplements and also doing a lot of weight-bearing exercise.)

How's everybody today? I was doing okay yesterday or so I thought. Did yoga like a good girl, ate some soup for dinner... then got a massive gut cramp and had to make a run for the bathroom. I don't know why I had such an urgent episode of d when I didn't eat anything unsafe! Fortunately it was just the one episode, and I'm doing okay today so far. My GI just put me on this nortriptyline stuff in the hopes that it'll help my guts. Well, I've been on it a week and I don't think it's doing anything. He took me off amitriptyline, which helped me fall and stay asleep, and this nortriptyline stuff doesn't help me sleep. So if anything, I'm doing a little worse rather than better, and with yesterday's d episode I don't think it's doing a thing for my guts. I'm going to give it a bit more time, maybe it needs longer to kick in. But I'm hoping that in a few weeks, if nortriptyline still hasn't done anything for me, then I'm going to ask my GI if I can go back on amitriptyline. I need my sleep!
 
My mom is a pretty cool lady. and she does have two cats! I'm sure they get plenty of those nasty spiders that she isn't even aware of. :p Although they are 10 and 11 now so moving a bit slower than they used to.

Your GERD sounds miserable. Do you have any issues with asthma? Working in respiratory therapy one thing I'm always aware of is that GERD can be a cause of asthma, because the acid rises so high it sometimes gets aspirated into the lungs and causes irritation there. Over time the inflammation becomes chronic and develops into asthma. Do you take Vitamin D too? That can help the calcium to be absorbed into your bones and not just stay in your bloodstream to be passed out of your kidneys.
Im on the the other end of things today from you, I must say. My GI upped my Linzess to 290 instead of 145, the first day of that I had D, but yesterday I didn't go at all and today I still haven't yet. Ugh. It's very uncomfortable. Darn stuff. I think that some of it has to do with the fact that I have had bad headaches the last few days as well as severe backache last night, and I've been taking pain meds which can cause constipation. :( It just never ends.

And I just got told I'm too thin and need to eat more! Argh!
 
Aw Cindy. I'm feeling a bit too thin, too. My weight dropped down to 135 just prior to my GI appt last week, although he didn't say anything about my weight. My normal weight is about 136, and I had managed to get myself up to about 138 not long ago, so I had lost about 3 lbs. Not much, but not good either. So, the whole time I was off from work, I decided to just eat what sounded yummy in the hopes that I could gain some weight back again. My parents took me out to eat for my birthday and I pigged out. My hubby made me not one but 2 cheesecakes! I also ate a big piece of chocolate cake at one point. Weighed myself on the Wii Fit last night as I was about to do yoga... and it said 135. Ugh! At least I didn't lose any more, but how frustrating that I stuffed myself with high-calorie foods and I still couldn't manage to gain any weight. So I totally feel your frustration, I'm there myself.

No, I don't have issues with asthma that I know of. I have messed up sinuses (I broke my nose when I was a kid, and it never healed properly, so I am sure I have a deviated septum and who knows what else going on in my nose/sinus region). I have awful allergies that seem to hit me year-round. My allergies like to act up when I work out, too. My nose drips like a faucet sometimes during my workouts! Fortunately I have no shame and am fine with wiping my nose on my sleeve and getting on with it (my workout clothes go right into the laundry once I'm done working out, so it makes no difference to me if they're covered with snot on top of sweat! :p ). But no asthma. My mother has asthma, but she gave it to herself - she is a crazy marathon runner and has "running-induced asthma" which I hadn't heard of until she got diagnosed with it. Apparently if you run way too much then you ruin not only your joints but your lungs too! Anyway, my mom is the only person I know of in my family with asthma, and she caused it herself so it's not genetic or anything. I don't know if I aspirate refluxate into my lungs or not, but I wouldn't be surprised if I do given the amount of refluxing I do. Would I feel lung pain or would I be coughing or anything if I were in the early stages of developing asthma due to aspirating reflux? My lungs seem fine when I do cardio so hopefully I'm okay.

Yes, I definitely take vitamin D! :) I take 2000 IU in the summer months and 4000 in winter. I read that most healthy people in northern climates don't get enough vitamin D due to lack of sunlight/skin exposure in the winter, and people with chronic illnesses tend to be even more lacking in vit D, so I make sure to take it every day with my calcium.

Speaking of vitamin deficiencies, I'm still having issues with my lips and my presumed vit B6 deficiency. My lips were okay for awhile but have started cracking & peeling again lately, in spite of me taking a B6 supplement daily. I googled, and it said that B6 deficiencies in the US are very, very rare. That makes me a bit worried, so I'm thinking about seeing my GP and having him do some bloodwork to see what exactly my B6 level is, if I'm deficient or not, if I'm deficient in anything, and if he has any idea what's going on with my lips. I'm thinking though that first, I'm going to stop taking my B6 supplement for a bit and see what happens. If my lips get really bad again then I'm definitely going to my GP. I've been more pale than usual lately too, and I read that anemia sometimes accompanies B6 deficiency. So maybe that's why I'm pale and sometimes lack energy? I don't know. Probably need to get it all checked out though!
 
Cat and Cindy, I can relate about the weight. I'm about 131. Last year I was able to get up to 136, but I feel worse if I eat too much.

I'm going to start taking vitamins too. I went to the healthfood store and talked with the owner. He thinks there's a good multi I could start with that's easy to digest. If that works, I'll see if I need additional D, B, or magnesium.

It's starting to get cold here at night, in the 40's and 50's. It's quite nice in the day though, about 75 max.
 
I'm just happy to be back in the triple digits, weight wise. :) It's only within this past year that I've gotten over 100 again. At worst, I was down to 89. Right now, I'm at about 103. I go up and down a pound or two quite often and don't worry about that.

Jessie-- I know you've had so many tests, but it just seems to me that what's going on with you is something more than just "functional" or a motility issue.

I can't remember who mentioned not having had stool/parasites tests, but if I were you, I'd strongly request that. If the issue is parasites, that's a lot easier to fix than chasing around all of these other ideas.
 
Oh, I'm another one who tried a gluten-free diet. I had read that it can take a year or more to fully "de-tox" and know if it's going to help so I went without gluten for two years. It didn't really help me. I have been told multiple times that I "present" very much like a celiac patient, but every time I've been tested, the celiac tests come back negative. However, I do test allergic to gluten via blood test, though I've heard that those tests are of questionable validity. Anyways, since going back on gluten, I have gained a few pounds (probably because I like foods with gluten) but perhaps have more bloating as well.
 
Chickadee - That's impressive you did it for two years. I'm aiming for one month. If I don't notice any improvement, I'll probably eat gluten again.

Every morning the little gluten devil is whispering in my ear to go buy some bagels. :p I'm trying some GF english muffins this week. They're mediocre at best, and expensive too. I think I'm going to get some GF pancake mix or all purpose gf flour. It'll be cheaper and I can mix it up in the mornings by adding fruit or cinnamon.

Eating GF lunch and dinner is pretty easy though. I love Asian food, so rice and rice noodles are great. Whole Foods has some dang good sushi, plus I found out they even have GF soy sauce packets!

How is everyone today? I took half of an imodium last weekend and backed me up. I go through this cycle every week. So it's OK, I'm not in pain. It'll probably get out of my system soon.
 
Cat -
If you had asthma from the reflux, you would notice some symptoms, so it's a good sign that you're working out with no issues. My son has had GERD since he was very young, and ended up with exercise-induced asthma from it (he would feel fine unless he was working out strenuously, then would tighten up and get short of breath). It sounds like that's at least one thing you don't have to worry about!
That B6 thing/lips peeling has been plaguing you for quite a while. My lips used to chap and crack pretty easily year-round, but since I've been taking B6 supplements, it hasn't happened. What you're describing definitely sounds more severe, though, and hopefully you can get some answers from the doc.


Moogle -
Good idea, we belly sufferers just don't get enough from our food. I usually take a multi-vitamin, calcium, magnesium, Vit D, B6 and B12, and fiber supplements. Along with my Keppra and Linzess I think I counted that I take something like 15-19 pills aday. And I'm only 41... I can imagine what my future will hold!
This weight thing is kind of a pain. Once in a while someone will tell me, "Oh, you're one of those lucky people who's just naturally thin". As if it's not because I can't eat enough calories in a day! And I do work out regularly, for my health and also my back gets so miserable I can barely sit or stand if I don't do it. I don't even try to gain weight anymore as the only way to do it is to feel as if I'm stuffing myself, and then I feel sick. Now I'm just trying to maintain, but it seems to be a slippery slope as when I lose a pound or two they don't come back.
 
Chickadee, that's pretty impressive that you made it two years and then went back! I'm really trying to adjust to the idea that I'll be gluten-free forever, it was really painful the few times I tried to go back. The doc told me not to even bother with gluten anymore.
Moogle, I've tried several GF products, several of which are just not good. And they're all very expensive! The tortillas are all terrible and fall apart immediately. Udi's bread is pretty good. I haven't tried the English Muffins because they're so dang expensive and I didn't want to pay that much and find out they weren't very good, which is what is sounds like you are saying.
For GF mixes, I'd recommend FG Bisquick. It's about 2-3 times as much as the regular stuff, which I was never big fan of, but the GF mix actually makes pretty good pancakes. I just tried last night a new Betty Crocker brownie mix and those turned out pretty good too.
I'm also a big fan of Japanese food so it's a treat to be able to go out to eat and get some.
Just a tip - I have seen that Udi's makes GF bagels - and the rest of their stuff is pretty good, so maybe try those if you're craving bagels? ;)
 
Thanks Cindy. I'm totally about to get some vitamins. Oh, and do you ever get the "How do you stay so thin?" or "How can you eat so much and never gain weight?" The one that bothers me the most is "I wish I had your problem." Ugh, so frustrating. Is the bulging vein look in this season?

The imodium wore off and I had loose stools this morning. So I feel crummy now. I'm gonna take a bentyl.
 
I hear you, Moogle. My hubs has said he doesn't want the actual problems I have and the pain and stuff, he just wishes he could only eat what I eat. He doesn't have the willpower to do it because he knows he can eat the other stuff. He has probably the most terrible metabolism I've ever seen but is determined to try to change his eating. I told him anytime he wants I'll make my menu for both of us! :D
He has the best of intentions but other people have told me they wish they were as lucky as me to be able to stay so thin and not have to work at it. I've heard "Oh, I just don't have your willpower". As if I just don't want to eat the other foods.... as if I don't suffer horrible pain if I do eat them. Sheesh!
If not the bulging vein look, then at least the collarbone/chestbones showing through look! Along with visible pelvic bones. ;)
 
Cindy, I had sort of a brainstorm last night about the whole B6 & lips issue. My googling results kept saying things like, B6 deficiency is super rare in the United States and is usually caused by either (medicine I don't take) or (illness I definitely don't have). But then I remembered, I used to take a B12 supplement when I first got sick 4 years ago, as I had suspected from the beginning that I might have an IBD and I had read early on that many Crohnies have B12 deficiencies. I took B12 for quite awhile, then stopped when I was in remission as I didn't feel that I needed to supplement so much while in remission. But when I started flaring again this spring, I didn't bother to start taking B12 again - so I wonder if I'm deficient in that? A bit of reading suggests that B12 deficiency can also affect the lips. So I'm going to stay on B6 just in case, and I'm adding B12 back into my supplement regime too. I can't take a b-complex vitamin, as folic acid makes me super horribly nauseous for some odd reason. So I'm on the ala-carte B vitamin supplement plan. :p (I take biotin too.) I'm going to see how this B12 thing goes for awhile before going to my GP. Not that blindly supplementing is the best plan, but I'm so poor lately that if I can figure things out myself without having to pay my doctor to help figure it out, then that's okay by me.

Moogle and Cindy, I love Japanese food too! There's this Japanese grocery store down in the northwest Chicago suburbs that the hubby and I are obsessed with, they have a really yummy sushi bar in the grocery store - it's leaps and bounds better than your average grocery store sushi, and it's more affordable than an actual sushi restaurant (hubby and I like to joke that even with the cost of gas, it's still cheaper for us to drive 2.5 hours down there and get sushi, than it is for us to go to the sushi restaurant a mile from our house). I'm obsessed with bento boxes too, I buy a new one every time we go down to that Japanese grocery store. During the times that I haven't totally given up on trying to eat a healthy diet, I will pack myself adorable little lunches in bento boxes. :) Hubby made a crock-pot duck last night and we made baked potatoes too, so I have some leftover duck meat (yum!) and a skinless baked potato in my bento lunchbox today.

Oh, and Moogle - be careful of some GF foods. My mother is gluten-free and she gave me this GF pizza crust to try one time. But apparently it was mainly corn-based and it made me feel so sick for days! Corn is indigestible to healthy people and seems to be even worse for those of us with messed up bellies, but apparently corn is used as a wheat substitute in a lot of GF products. Coconut is a common ingredient in GF products too, and most people are fine with digesting coconut, but some people have a hideous time with it. Like me! I cannot have ANY coconut, no coconut oil and no coconut flour, it does horrible awful things to me and is probably my #1 worst trigger food. So, just be wary of what's in your GF products and make sure to read the labels. Like you said, rice is great, and if it were me I'd be sticking mainly to rice products too.

Chickadee, I was thinking of you the other day. I saw my GI on Monday, and at my appointment I asked him if he could stain my biopsies for mast cells. He said that Mastocytic Enterocolitis is super rare, as in, he's never even seen a patient with ME. (But if they don't regularly stain for mast cells, I would have to think that some ME patients are just falling through the cracks, no?) He said he'd look into it with my biopsies anyway, but that he is almost positive that I won't don't have ME. He also said, ME patients tend to have much more severe symptoms than the average IBD'er. So given that I'm not super severely ill, that also makes him think I don't have ME. (I don't know how he can say that about ME'ers having more severe symptoms when he's never even seen an ME patient!) So anyway, that was what my GI said about ME. Not a whole lot of information, but at least he agreed to look for mast cells in my biopsies.

How are you doing, Chickadee? Have you found a doctor who knows anything about ME? Are you on any kind of treatment right now?

How's everyone else? I'm pretty bleh today. Had another night of not sleeping well, and woke up with my left elbow in a lot of pain. I think I just slept on it really funny - I hope so anyway. I did lift weights yesterday so it's possible I injured it, although I don't think so because I felt fine during & after my workout. My guts are iffy too, they haven't been great for a few days now. So, I'm functional but bleh.
 
We are really lucky to have a great Japanese restaurant just across the highway from our house. When it's nice out, we can walk there! They have great food and are very accomodating of my special orders.
Moogle, Cat's definitely right about the corn thing. I've gotten caught a couple of times when I didn't check ingredients and bought GF stuff, only to find out it had corn in it. Takes a couple of days to get over that, so I check labels very carefully. I'm lucky in that I can tolerate coconut, so I use coconut oil in place of butter in a lot of recipes, since I'm also lactose- intolerant.
Your duck meat sounds tasty - I haven't tried it but I've heard it's very good! I have a GF beef stew that I made last night, thick gravy in it. Seemed like the right time for it, on a day when it was so cold outside.
 
Hope you guys are doing okay. I've been pretty busy and haven't been able to keep up with the board all that well.

Wound up in the ER again this weekend, this time for something apparently totally unrelated. Somehow something inside me "popped" and generated air in the space between my lungs. It sounds worse than it really is but nevertheless freaked the doctors out for a while and bought me an overnight hospital stay. Ugh.

The whole thing was weird. I'd gotten pretty sudden severe back pain and soreness in my neck and noticed a shift in my voice. When I pressed my neck to check for swollen glands, I had bubbles under my skin. BUBBLES. Under my skin. I thought I was crazy but called my insurance's ask-a-nurse line anyway. Of course, when I did that, the whole "my poo's been bloody for two weeks" thing came up and she told me to go to the ER based on that alone.

By the time I got to the hospital I actually felt totally fine, so I was kind of embarrassed. The nurse felt my neck and immediately said no, I wasn't crazy -- there ARE bubbles in there and it means I need an xray immediately. Three x-rays, a CAT scan, a bunch of blood test and a round of IV antibiotics later and they still don't know what happened. They thought there might be a hole in my esophagus but couldn't find one.

Weirdness.

The even weirder thing was that my white count was high, which apparently doesn't usually happen with this problem.

My hunch? Whatever's wrong with me and causing the GI bleeding probably elevated the white count. I probably popped a small rupture in my lung from straining since I've had so many toilet issues.

Both of those have my primary care doctor pretty convinced that while I do have IBS, something else is going on. IBS doesn't cause bleeds, especially not for days on end, and it doesn't spike your white cell count, and it sure as hell doesn't poke holes in your lungs.
 
spontaneous pneumothoraxes are actually fairly common, although not always large enough to cause the subcutaneous emphysema you are describing (that's what it's called when that air is trapped under the skin and makes "rice krispies" sounds when you touch it). It's much more likely to have a hole in your lung than in your esophagus, and often they heal up on their own with no interventions needed. An overnight stay is usually required to make sure it closes and the air is reabsorbed. the air getting caught between your lung and the pleura (mebrane between your lung and rib cage) most likely was the source of the pain, and it eased because the air moved out of that space and under the skin. When it didn't worse, that was a good sign that the hole had spontaneously closed back up (lung tissue heals quickly).

I think my Respiratory Therapist is showing! :D
 
mccindy, thanks!

It was pneumomediastinum -- does that make any difference, or are the implications more or less the same? It'd be a nice relief if this was just an oddly-timed but mostly normal thing.

The pulmonary/thoracic surgery folks were nonplussed, and I know surgeons tend to get pretty stoked about a chance to go in and fix someone, so I took their lack of excitement as a pretty good sign :).
 
pretty much the same thing, it just means the air was trapped in a different place, which is atually better in your case because it was easier for the air to get out. And yes, surgeons do tend to get excited when they know there is a good candidate for surgery, so their lack of enthusiasm was a very good sign! At least you didn't need a chest tube, those are quite uncomfortable and sometimes needed when the air is trapped and won't come out.
 
Man, mccindy, the hospital could've used a respiratory therapist like you there the other night! Seriously -- I think I saw twelve different doctors, plus a ton of med students. Finally my nurse decided I deserved some sleep and started scolding people for trying to go in, haha.

It was a pretty stark contrast to previous ER trips. I'm used to seeing one or two nurses and a couple doctors at most. I don't even know who was in charge this time.
 
Bureaucratic - Sorry you had such a rough weekend. That def. doesn't sound like IBS!

Cat and Cindy - I'm not eating corn products either. Gave up on popcorn a long time ago. Corn chips are usually fried. And there's the whole GMO thing too....

I went to whole foods and had some sushi. It was pretty good. I'm going to try to eat some fish two-three times a week for omega 3's.

Brrr, it's cold tonight! Hope you all are doin' ok.
 
Cat and Cindy,
I'm sorry to read that you guys are losing weight when it's not intended. I'm the opposite as you can see from my picture. I usually yoyo back and forth depending on how bad my IBD is between 315-320. I'm in the waiting room right now waiting to see my GI. I don't really know how to ask him for a pill cam or colonscopy if you read this in the next ten mins please send me some suggestions! I hope you guys have a good night.
 
Melibean-- Just say, "Would it be possible for me to have a pill cam or colonoscopy to see if there's any inflammation that might be causing my symptoms?"
 
Those who are trying to go gluten-free or thinking of it-- It really gets easier as you go along. The hardest part is the beginning. Yes, you'll still want to have things you can't, but if you just don't make it an option for yourself, it's really do-able. I'd echo Cat's suggestions about careful label reading. I'm okay with coconut, but I don't do well with soy. A lot of gluten-free items have some kind of soy. Just because it's gluten-free, it doesn't mean it's "safe."

Cat--
He said that Mastocytic Enterocolitis is super rare, as in, he's never even seen a patient with ME. (But if they don't regularly stain for mast cells, I would have to think that some ME patients are just falling through the cracks, no?)
Click to expand...

Yeah. Considering staining for mast cells is the ONLY way to diagnose ME, if that's not usually being done, I think it's really hard to know how rare of a disease it is. At any rate, I'm glad he is going to have your biopsies stained. Let me know what happens. Because I had such a bad reaction to the Chinese herbs (a couple of months ago), I was trying to let my GI tract get back to "baseline" before starting the new med for ME, Gastrocrom. (Also, there were some problems obtaining Gastrocrom.) Then, a couple of weeks ago, I got the stomach flu, and then it was my bday so I didn't want to do anything new to rock the boat. But...my planned start day for Gastrcrom is Friday! I'll let you guys know how it goes. For some people, it can worsen diarrhea, nausea or vomiting and/or cause dizziness so I wanted to start it when my schedule was clear. I haven't been able to find a ME-knowledgeable doctor. I posted on the main board and didn't get any responses (about doctors). However, from reading online, it seems like Gastrocrom would be the first step anyways so I'll give that a try and see how it works. I'm going to start with a lower dose and slowly work up to full doses. It's supposed to be taken 4x per day, and I guess it takes about 6 weeks to know if it will work.
 
Chickadee, thanks :) I am planning to ask for stool for parasites (o&p) next visit!
What else do you think it could be besides motility. Unless it is parasites or SIBO I'm not sure what else it would be.

I have also had people make stupid comments to me like a lot of you have had. Such as 2 people I work with (at separate times..) say they "wish they were like me" cuz they wanted to lose weight. And I said " you wish you got extremely nauseated after every time you ate??..." And one of them was like yep! The other one I said something somewhat different in response I forget, but I ended up kind of snapping that she shouldn't wish things like that and she has young kids she shouldn't be wishing she was ill so she could lose a few pounds when she isn't even heavy. She apologized.
I'm about 116/117 now and I'm 5'6. I was consistently 110 for quite awhile and then had gained some after I was diagnosed with PCOS in march and had to take few rounds of progesterone. I have lost some of that but haven't been less than 115 now since before progesterone.

How tall are you guys?

Still haven't heard anything from my GI and my GP was consulting to them on Thursday, so I should at least have heard from them for an appointment by now... I don't think they answer the phone Thursdays or Fridays either, they only have 4 hours a week they answer and I think it's Mondays and Tuesdays. I forget but I'll have to check tomorrow and if they don't, then I will have to call back my GP as he said if I don't hear from them really quickly to tell him, lol.

I kind of wish I could just deal with my GP. Although my GI would be more specialized obviously my GP is so caring and awesome and really wants to help me and fast. My GI was the one that took 5 weeks to send my referral to the surgeon. So that made me lose confidence in him some, although he is pretty nice too. I just have waited so long to feel better I wish it would just happen.

I hope everyone is doing okay :)
 
Melibean - I totally understand your side of things too. My sister-in-law has a bad thyroid condition and can't seem to lose weight no matter how hard she tries. My husband has also tried too - one year we limited him to 1,800 calories per day and he walked 2-3 miles per day with me, brisk pace. After 4 months he'd only lost 20 lbs. He was very frustrated and quit. Mind you, he needs to lose 100 lbs so he didn't really notice the 20 lbs. He's very understanding with but I think sometimes he gets frustrated because he so badly wants to lose weight and I can't keep it on. Plus, when I lose three lbs. I drop a size. When he lost 20 he didn't see much difference and could still wear his same pants.
I hope you got some good news from your doc, and some tests scheduled!

Chickadee, you are right, the longer I've been gluten-free, the easier it's gotten. Although I do still miss gluten foods, it's easier because there are so many alternatives availalble. I think the bulk of my weight maintenance used to come from gluten and dairy, so that's why I have such a struggle with maintaining now.


Jessie, I'm 5'8" tall with a fairly athletic build, and I try to maintain around 136. This week I've been about 134-135. If I get lower I look really bony and gaunt. Here's a funny fact - When I graduated high school I was 5'6". With my bad back problems and degenerative disks, I lost an inch in my 20s, so I was down to 5'5" by the time I was 30. When I had my fusion surgery in 2003 they respaced my vertebrae and replaced the discs with cadaver bone and I ended up back at 5'6". When I was 33 I started getting pains in my legs that felt like growing pains and when I had my doc revisit I was 5'7" tall. They had measured me four times after my one-year from my back surgery and I was 5'6" tall every time. The doc was like "it's not possible to grow in your 30s" so they took me back to the scale and reameasured me. Still 5'7" tall. When I was 38 I started having the leg pains again, and at the end of that year I was 5'8" tall and still am. How weird is that! It seems that the growth has all been in my legs because my inseam changed from 31" to 33". When I graduated high school I was 5'6" tall and weighed 133 lbs. Now I'm 5'8" tall and weigh around 135. I actually look thinner now because I am bonier and my legs are longer . It's a weird thing! I kinda wonder if my brain tumor did some weird triggering growth thing? The docs still say it's not possible to grow at my age. I just have to laugh.
 
Hi I am not posting here about myself but my son. I was diagnosed with Crohn's disease many years ago. My son is 24 and has had IBS since he was ten. Been on every medication imaginable and scoped up/down several times through the years. I was glad it was not crohns and had accepted diagnosis. As a nurse though I became very concerned last May when he started having frank bleeding with the diarrhea. Full battery of tests repeated and all negative. Although one cat scan showed thickened loops of small bowel and he also has WBC's and of course positive hemacult. I am frustrated now because they can't find any cause for the bleeding. Not even any evidence of a current or past hemmeroid. He is as clean as can be. He has severe abdominal pain, cramping, diarrhea and a feeling like he constantly has to go. He is in law school and missing class for runs to the bathroom. Sometimes he just has explosive gas with blood. His GI just started him on a trial of Entocort ( we opted not to do prednisone as he is going into finals). We are hoping that if the med works when it is withdrawn he will flare bad enough that it can be found. I really just wanted to share my frustration and express my sympathy to those of you going through the same thing. I fortunately have drs who listen to me/him and r trying desperately to figure it out. I posted this in a separate thread but thought perhaps it belonged here.
 
Welcome, Crohnie1023.
I would say it's quite unlikely that what your son is experiencing is IBS - the bleeding is not a symptom that occurs with IBS, but rather, IBD. Has your son had a pill cam done? Sometimes Crohn's doesn't show any evidence in the colon but can be evident in the small intestine, which can't be seen with a colonscopy.
How does he do with managing his diet? One thing most people in this forum discuss is diet. We've all kept food diaries and found a specific diet that works best for us and are pretty familiar with what foods can cause a flare and what foods are safe.
 
Hi Crohnie1023, welcome. I'm sorry to hear about your son. With your history of Crohn's, and with his bleeding, I would say it's likely that he has some form of IBD as well. Is his bleeding bright red or darker/black? If bright red, I can't believe they didn't find the source on his scopes. If it's darker blood, have they done anything like a pill cam? I hope the Entocort gives him some relief. I was on Entocort myself and it gave me a nice 2 year remission, so hopefully your son can get some good benefit out of it as well and get through his finals. Or, as you said, if he flares badly enough after stopping Entocort, then hopefully they can find the cause of his illness and can then get him truly proper treatment and relief. Good luck to you and to him!

Melibean, I hope your appointment went okay. Did your doctor order some tests? As for the weight gain you've experienced, that's not super common with Crohn's but it does happen to some people. Out of curiosity, what blood tests have you had done? Cindy mentioned thyroid conditions, and sometimes thyroid issues can cause IBD-like symptoms and weight gain. At the very least, it's something that can be tested for and confirmed/ruled out via bloodwork, so that might be something to ask your primary care doc about. Another thing to look into would be Cushing's disease. With my weight loss issues, I was tested for Addison's disease, which is basically the body doesn't make enough cortisol - Addison's can cause IBD-like symptoms and it responds to prednisone, so my GI thought I might have it (I don't). Cushing's is similar but opposite, the body makes too much cortisol, which can cause weight gain and I believe it can also cause IBD-like symptoms. Again, it's something that they can do blood tests to look for, so nothing too invasive. Just some thoughts for you. I hope the GI appt went okay and that you got some tests scheduled or that it was otherwise a worthwhile appt!

Jessie, I'm 5'8" and have been that height since I was about 13 (I'm actually the shortest person in my family - my "little" brother is 6'6"! I hit my growth spurt early and then it sort of sputtered out - I'm not only the shortest but I'm also the only chronically ill person in my family, so I kind of wonder if the two are connected somehow). My normal "healthy" weight is also about 136 lbs and I also have a fairly athletic build - Cindy, I think we're long lost soul sisters. ;) I last weighed myself a few days ago, and I was 135 then. My heaviest weight was about 146, when I was on steroid treatment. My lowest weight due to a flare was about 115, which was starting to get scary. Fortunately though, unlike Cindy, I haven't really changed clothing sizes through all of the weight shifting. I tend to buy clothes that fit me perfectly when I'm at my healthy weight, and if I lose a few lbs then I have a collection of cute belts to help keep my pants up. :p

Chickadee, good luck with the Gastrocrom! I'll be interested to hear how it goes for you, and I hope you don't have any of those side effects you mentioned. And I hope you had a happy birthday! Mine was last week, on the 6th. I'm starting to feel old, though - I turned 34. I think that means I'm officially into my mid-30s, I'm no longer in my early 30s. :p Cat's feeling oooooold!

Moogle, for omega 3s, I recall a thread in the diet section of the forum awhile back that was about the benefits of sardines. Apparently, if you get them packed in water (as opposed to oil, which contains a lot of omega 6s and basically negates the omega 3s), they're super healthy and chock full of omega 3s and are also very low in mercury & high in other good stuff like calcium. (What I read was, the general rule is the larger the fish, the more mercury - so small oily fish like sardines are the most ideal for low mercury & high omega 3s.) I know they're a bit fishy and not everyone likes sardines, but if you like them then definitely consider eating them more often. I was eating them myself for quite awhile, but my reflux decided it doesn't like them and I will have really nasty fishy burps all day if I eat sardines now.

Bureaucratic, it is amazing how different an ER trip can be based on what your main complaint is - I've experienced the same myself. Sometimes in past flares I ended up going to urgent care for IV fluids because I just get too dehydrated. For those trips, I end up waiting in the waiting room for about an hour, and the doctor is usually condescending to me and nobody treats me with any real sense of urgency or empathy. But when I got rear-ended in a very minor car accident awhile back, my neck started hurting a little bit shortly after the accident so I went to urgent care to get checked out for whiplash. As soon as the receptionist heard "car accident" and "my neck hurts", I was rushed into a collar and rushed into a room and everyone was treating me so seriously, I got x-rays right away and whiplash was confirmed (mild though), and the doctor started basically throwing prescriptions at me. "I'll give you some muscle relaxers. Oh, I see you can't take NSAIDs, no problem, I'll give you some Tylenol 3s." No doctor has EVER offered me any pain meds for my IBD, but I get a teeny case of whiplash and they give me pain meds without even asking if I actually want them, and they treat me so seriously that I nearly started laughing. It's very odd how differently acute vs chronic illnesses are treated by the majority of the medical community.

How's everybody doing? Moogle, it's been cold here too (In the teens/20s/30s) but today it's starting to warm up a bit, it's in the 40s today and it's supposed to get up to the mid 50s by the weekend! That sounds positively tropical compared to temps in the teens & 20s. I've had to scrape frost off of my car the past few days and it seems way too early in the season for it to be that cold! Healthwise I'm okay today, had a nice massage yesterday and guts are feeling mostly okay today. I'm still not sleeping well at all but that's my main issue right now, so all things considered I can't complain too much.
 
Cat - I tried sardines not long ago. They weren't terrible taste wise. But my stomach was not feeling well at all. I don't think I can totally blame individual foods though. It was probably me being stressed out from family issues.

I went to the health food store and got a multivitamin to try. The owner knows about my stomach issues and he's been a nutritionist for over 30 years. So he recommended one that is supposed to be easy on the stomach. I'm also trying a magnesium supplement that is a form that isn't a laxative. I'm stoked to see if that helps!

Oh to chyme in on the weight thing. I'm 5'10" and 130 lb. Do I get a prize? :p
 
Good luck with the multivitamin, Moogle! Oh yeah, sardines are not advisable if you're having a bad tummy day. :p On a good day, I love fish & seafood. But on a bad day, I literally cannot even look at a picture of a fish. Earlier this year I was having a really bad day nausea-wise but I went to work anyway. I took a break and went to the break room and looked at the newspaper for a bit. In the paper, there was an ad for a seafood place, and there was a drawing - literally just like an outline of a fish. Not a photo or a realistic drawing of a fish, just an outline. But even the outline was enough to make me nearly puke! So now I know, I don't dare look at the newspaper when I'm nauseous just in case I see a drawing of the outline of a fish, as apparently even that is enough to set me off (so ridiculous, I know!). :p

Yay Moogle, I think you're the tallest of those of us who've shared our height & weight so far. You win the "tallest" prize. :) You're quite tall for a Moogle, they seem so short in the Final Fantasy and Kingdom Hearts games! :p Ha ha. Must be that antenna thing on your head, gives you extra height. ;)

I'm so tired! What a long day this has been. I had a really great workout and had a good amount of energy while in the gym, but I'm wiped out now. I haven't been sleeping well since my GI took me off of Amitriptyline, and I can't tell if Nortryptiline is doing anything at all. It doesn't help me sleep like Ami did, and it's supposed to be helping my guts but I'm having loose stools this afternoon (not d, but not very formed either). I want to go back on Ami but I suppose I have to give Nortriptyline more time to work. It's been about 10 days on Nortriptyline and I'm exhausted though! I'm going to try to catch up on some sleep over the weekend, and maybe then I'll feel better. If not, I am going to contact my GI and ask to switch back to Ami.
 
Yes, I am a tall moogle. I'm play the MBL (Moogle Basketball League). :p

The magnesium I took last night didn't cause cramps or D, so that is good. I'll need to take it 2x a day for a while to see if it does anything for me.

Cat - Hope you get some rest. I'm still on Ami. It's weird because it doesn't do anything for me accept get me in a deeper sleep. I ran out a week ago and I kept waking up that night with pain from gas. Maybe it was unrelated, but I don't feel much pain overnight when I take Ami, usually.
 
Tall Moogle! Toggle? I think you do win the tallest prize so far. Cat and I seem to be living in twin land, height, weight and build-wise. Except for the age thing.... Cat, don't feel too old at 34, I'm hanging out at 41 here!

I used to love sardines, but I've been afraid to try them because my tastes are so wonky since my surgery in July. Things I really liked before I can't stand anymore. I can't eat pork almost at all because the consistency makes me gag (except I can eat small amounts of bacon, usually one slice, and I've had a little pork roast once). Beef I like but my belly is not such a fan. I do like fish and seafood, but Cat, here's another thing we have in common, I can't even look at fish if I'm having a bad belly day!

I'm so glad it's Friday. I'm usually pretty wiped out by the end of the week. Weekends are for resetting... at least once we get our Xmas lights hung tomorrow!
 
Hiya Everyone,
Sorry I haven't responded back but I have been reading and keeping up with this thread. I usually respond and read on my cell phone but typing back a message takes a rather long time so I wanted to waited until I got to a laptop to give you an update.
ChickaDee, Thank you for the suggestion on how to ask my GI, I'll tell you how my appointment went in a minute.
Cindy, to be honest I don't really know what I have been tested for. I will call my GP and see if I can get tested for my thyroid and Cat will ask for Cushing's disease also.
So.... I went in to see my GI for the follow up from my endoscopy and just got done taking my Flagyl that Monday, I have lost seven pounds. I told him that I'm basically still having the same symptoms and that the Levsin I've been taking for my stomach hasn't been working so well. That I'm still in pain and nauseous and that I've had to miss a lot of work this week. I also stopped taking the buspirone because it was making me abnormally angry. While I'm telling him this he is cursing at the computer screen because he has more than one patients information on the screen. He also says why are you missing so much work? I said because I'm in pain and am in the bathroom 5-6 times a day. His response was why did I stop taking the Buspirone and that I shouldn't quit medicines like that one. I agreed and said that I have taken this medication before and have had the same side effects. I also said that my GP prescribed it to me without telling me why he was giving it to me. So then my GI said that he can't do anything about my symptoms that whatever he would do would just be a band aid and that I have to wait a month for the Flagyl to take effect. I then told him I was having D and his whole demeanor changed. He then said I now (as of that second re-diagnosed with IBS-D) qualify for a "study" in which I take a antibiotic that doesn't absorb into my blood stream but only my gut and he was really happy and sent me on my way with a packet of papers and told me to come back the next day....
I read the packet and since I am of childbearing years and have no children, the possible side effects are birth defects, but I would get a c-scopy. So today I went in and asked about possible birth defects and had to leave the room to discuss the possible dangers w/my boyfriend and if I should do it because it would be a year long study. I go back in the room and my GI comes in and says I don't qualify and that I have to wait my pain out for the next month until the Flagyl takes effect and in the mean time take a pro-biotic and the Levsin for the "spasms" pain I'm having with my tummy. I guess I'm grateful for not being eligible for the study but I wanted that C-scopy done now I guess I'll just have to wait. Sorry that was so long!! I hope everyone has a good friday!:ybatty::ybatty::confused2:
 
Melibean, your GI doesn't sound very good. If it were me, I'd start looking around for a new doctor. He hasn't even done a colonoscopy on you yet but he's already saying you have IBS?? Yeah, he's blowing you off, so you need to blow him off and find a new GI who takes you more seriously. Flagyl could help, that drug is sometimes used in IBD patients, but Levsin is an IBS med (meaning it probably won't do much for you, assuming you have more than "just IBS" going on - and with weight loss, you likely have more than IBS going on). I don't suppose you can go back to your primary care doc and ask for a colonoscopy ASAP? My primary care doc performs colonoscopies, although my GI has always done my scopes. But at the very least, your primary care doc should be able to refer you to a better GI. What are your symptoms besides the weight loss? Have you had anything like blood in the stool, fever/chills, getting up in the night w/diarrhea? Those are all "red flag" symptoms, meaning it's likely more than IBS - so if your primary care doc balks, tell him what red flag symptoms you have and that you need further investigation. You have to be your own best advocate and let your doctors know what you want and why. Don't let them brush you off with the IBS "diagnosis" without them actually doing some investigating first! IBS should be a diagnosis of exclusion, meaning you don't have red flag symptoms and they don't find anything else that's causing your symptoms. They have to investigate first though! Good luck hun, hang in there and I hope the Flagyl gives you some relief.

Cindy, I can't do pork or beef at all. I do tend to eat a teeny bit of pork at xmas time but I also tend to pay for it. My neighbors are Hmong, and at xmas we always give them some chocolates & candy, and they give us these amazing homemade spring rolls. They're very greasy and filled with cabbage and pork (all of that is a big no-no for me!). And they're sooooo delicious. So I have one or 2 every year, and yes I pay for it, but it's one of those rare cases where I'll happily eat them and am glad to pay for it because they're so delicious. But yeah, the rest of the year I avoid pork too.

Moogle, Amitriptyline helped me sleep like you said, and it also was great at preventing most of my migraines. So far Nortriptyline has prevented my migraines too, but I'd really like to sleep better like I did when I was on Ami. My GI's thought was that Nortriptyline would help my guts, but I had more loose stools last night and cramping too. It's not doing anything for my guts. I think I'm going to email my GI over the weekend and ask to switch back. I had just refilled my Ami when he made me switch, so I have a full bottle of it at home, I just need the okay to start taking it again.

I hope everybody has a good, restful weekend. It's supposed to be very rainy and some thunderstorms here all weekend apparently, so I'll likely be staying in for the most part. Some movies, some crocheting, and some hot chocolate sounds like a good plan to me. :)
 

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