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I survived camping, with a little help from Imodium. The first 2.5 days were rough, the third day ended better, then we were headed home so it was ok anyway. I lost a bit of weight, but it was also SUPER hot there, so I'm guessing it was water weight, too. I didn't get as much hiking in as normal, but I did get to dip into the lake, so that was good, and I got to meet up with an old high school friend, and that was awesome!

Sending everyone thoughts of feeling better.
 
Glad to hear that you survived camping, Wildmtn! I can't remember the last time I went camping (certainly it was before IBD came into my life). Do you do tent camping or do you have a camper/RV? The hubby and I have been talking about either buying and restoring an old camper, or buying a cargo trailer and building our own camper/tiny house. I feel like I could do camping and road trips no problem if I just had a toilet with me at all times, hence the desire to get a camper. I don't think I would do well with just a tent though!
 
Hi all.as i promised i came back to forum to inform you about my situation.23 days before i felt a sudden upper left abdominal burning pain.i went to the hospital all blood tests,colonoscopy,back mri twice,and recently an ultrasound and urine test were all clear.yesterday i've made a gastroscopy.doctor found me gastritis.all doctors i've visited including 2 neurosurgeons insist that this is a muscular pain maybe from my back and no further tests needed.they say i dont need to make the MRE or capsule endoscopy.my last episode with pain was in sunday.now last 3 days im a lot better but still i feel a dull ache on left side.im starting gym today not weights only pilates.
 
Thanks for the update, Dimitris. I'm sorry to hear you still don't have any answers. Hopefully going to the gym will help you feel somewhat better. I definitely always feel good after exercise so I hope you do too!

Wildmtn, eek, that is definitely not my kind of camping! :p Glad to hear the toilets were relatively nearby, and at least they were flush toilets instead of pit toilets!

How's everybody doing today? I had my appointment with the new colorectal surgeon today. It went about how I expected - I didn't get much out of it. He examined me with an anuscope and found one small internal hemorrhoid that was not in a good spot to be banded (it apparently would have put me in a LOT of pain/discomfort if he tried banding it). So, no banding, we both agreed that surgery is not happening at this time, and basically I'm just to keep on with trying to eat fiber and drink a lot of water and not strain on the toilet and so on. I'm also supposed to stop taking the steroid suppositories, so we'll see how that goes. He did say, that with my presumed IBD, that banding or surgery could easily make things worse instead of better. He said that he wouldn't want to create any scar tissue in my rectum because that could then cause narrowing or stricturing, and he also said that people with IBD tend to not heal very well (that's definitely true of me, I am a terrible healer).

So, everything he said made sense, but it is a bit frustrating that nothing was done and I'm just basically supposed to keep on going and hope that the bleeding doesn't come back. He did say that if the bleeding comes back, particularly if there's a lot of bleeding, that I'm to call his office right away and that his staff should be able to work some magic to get me seen quickly, while the bleeding is still happening. That's been the issue for the past year, that I have a bad bleeding episode and I call the doctor and they can't get me in for a month or two (or three, or four) so by the time I'm finally seen, the bleeding episode is long over. So, that's somewhat encouraging, that I might actually be seen by a doctor while I'm still actively jettisoning blood out my backside the next time it happens.

And he was not dismissive and actually seemed caring and concerned, which is the opposite of the first colorectal surgeon that I saw. He actually listened to me and he believed me when I said I have some type of not fully diagnosed IBD. So that's good at least, it's always nice to find a caring doctor, and it was a shame he wasn't able to actually do anything. But we'll see what happens the next time I start profusely pooping blood again, hopefully then he can do something to help.
 
I'm not doing super great, but I've found a GI clinic closeby where they often do fundoplication surgeries and I'm going to try to nag my GI to get a referal. I might have to fight for it so if you have any words of encouragement/tips on how to advocate for yourself I'm all ears.

Sorry the surgeon wasn't able to help you, Cat, but it sounds like he was at least a good doctor. Hopefully you'll be able to contact him again in the future if your problems get worse!
 
Hi all!

Just another update on my progress. I was seen by a consultant a few weeks back who diagnosed a fistula. He requested an MRI which I had last week. Ben to see another consultant at Salford Royal in Manchester today and he was quite shocked at how long I've been symptomatic and the lack of tests ordered to check for problems.

He said he suspects Crohns, based on all my symptoms and he has ordered a full colonoscopy and an upper GI barium series to check if this is the case.

I've been advised against any surgery on the fistula until we know one way or the other.

Thanks again to you all for your support so far

Andy
 
Thanks for the updates, everyone - it's good to hear where everyone is, even if it's rough still.

I had a most excellent appointment with a new non-GI specialist Wednesday. She is cardiac electrophysiologist, who also has credentials in rheumatology. She went through my *entire* history, from the last 6 years, which is when things really went downhill. One of the things that has been going on this entire time is that I will pass out randomly - mostly during exertion (making exercise difficult!). I had the holter test done awhile ago...she looked at it and noticed my heart rate was high the entire time -- which lead her to diagnose me with "inappropriate sinus tachycardia" and dysautonomia. She is having me follow something called the "Levine Protocol" for exercise (it's basically what astronauts returning to earth have to do!) because of that - it starts of *very* slowly. Hoping it helps. She also drew a *ton* of blood work, to look for autoimmune things, vitamin deficiencies, etc. Then, yesterday, her office called and said that she also wants me to have an echocardiogram, so now that's scheduled for next week. I am very hopeful, right now. Oh, and chronic diarrhea can be a symptom of dysautonomia.

Which of course I'm still experiencing. I think if it's still going on I'll call the GI Monday and ask if it's worth it to keep taking the Bentyl. I mean, if it isn't' doing any good, why keep swallowing the pills?
 
Wow, Wildmtn, sounds like you've made some progress! Sounds like a great doctor and that's great that you've got so many pieces to the puzzle plus a plan of how to start treating it. Good luck with the exercise protocol, starting slowly sounds like an excellent plan (that was how I got into fitness myself, I started very slowly so as not to make my body angry and gradually ramped up the intensity, the amount of weight I was lifting, the time I spent in the gym, etc).

Starnett, sounds like you're close to a diagnosis - I hope you can get confirmation soon so that you can start on treatment and start feeling better. Keep us posted!

Izzie, just be firm with your doctor when you ask for that referral. Don't let them brush you off without a really good reason why. Remind them that you've been suffering with these symptoms for a long time and you need to explore ALL your options. Tell them that you aren't going to jump right into surgery, but you'd like to ask an expert more questions about the surgery so that you can make an informed decision for yourself. As long as you're reasonable, I can't imagine that your doctor would have a problem with giving you that referral. Good luck!

As for me, I feel a bit off today but I'm sure that's due to me stopping the steroid suppositories (I was on them for something like 3 months straight, so my body needs to adjust now). I will say, I can tell that the steroids were at least part of why I wasn't sleeping well. Last night was my first night of not doing a steroid suppository before bed, and I slept SO WELL! My hubby got up before me and he fed the pets and let the dog out to potty. Usually my pets make a lot of noise when they're fed and let out - my cat will meow meow meow for food and my dog will go running around like crazy, she'll run to the door to be let out and she'll run back in and run to her food dish. It's not something that I usually sleep through, but this morning I woke up just before my alarm went off and realized that hubby was already up and he had already taken care of the pets. I was completely zonked out for all of it! So yeah, I'm definitely not feeling like myself today with the mild steroid withdrawal, but at least I got some sleep.
 
Hope you're all doing well! I'm both better and worse - some of my symptoms have improved on the new meds but my cough is worse than ever. Very annoying. Have made an in-person appointment with my GI in July though, and hopefully something will come of it.
 
I can't type much - cut my finger badly Sunday night and had to have 7 stitches put in. I'm here, reading, just not posting much for a bit until I heal!
 
Cat-a-Tonic said:
I can't type much - cut my finger badly Sunday night and had to have 7 stitches put in. I'm here, reading, just not posting much for a bit until I heal!
Click to expand...

Yikes, cutting your fingers seems to be the recent Thing in your family. Stay away from sharp objects and I hope you heal quickly!
 
I know! Same finger, too. Right index finger. Hubby is left-handed though so it's not his dominant hand - I am right handed sooo this sucks. :p Hubby didn't need stitches, either - my finger got 7 stitches. It still hurts, a lot.
 
Hi everybody. Newbie here. I've been reading along for a few weeks, and figured it's time to say hello.

I'm undiagnosed, with my first doctor's appt. in Sept, so I'm just waiting and taking care of myself the best I can. A lot of the stories in here resonate with me. I feel like I belong, even though I don't have any clue if I really have cd or uc, so I figured I'd jump in and say hi. Eventually I'll ask how to prepare for my appointment to try to get the best diagnosis chance, but in the meantime, just saying hi.
 
I just got a test result back, and while I think I'm glad that it shows *something* I'm also sort of freaked out :/ My super wonderful new doc ran a panel of tests called an "Early Sjogren's panel". One of them, Carbonic Anhydrase VI antibodies IgG, came back over 85, when normal is less than 20. So, yeah. The bottom of the test says that with symptoms of Sjogrens (like my dry eyes and mouth, etc) and the results of that test, the diagnosis can be made. So, yay? I mean, I wanted a diagnosis. I just don't want to be sick!

Oh, and these particular antibodies are also seen in autoimmune pancreatitis. joy.

Tomorrow I get to have an echocardiogram, because super wonderful doc noticed that no one followed up after the one 3 years ago showed bilateral atrial enlargement and a *tiny* right to left atrial shunt. Hoping all is well tomorrow.
 
I'm sorry to hear that Wildmtnhoney! I had severe dry mouth and eyes as a side effect from meds for a while and it's SO annoying. I think it's okay to have mixed emotions. Of course everyone wants a diagnosis when something is wrong, but that doesn't make it any easier when you get one and it's not something easily fixable.

I'm glad you at least have a good doctor to see you through everything!

Meanwhile I called my GI's office again today about my dreadful cough after I had what felt like some kind of asthma-like attack last night. They moved up my GI appointment to TOMORROW. So, that's good, I think. I always worry that they'll find me annoying, but I'm bringing a family member tomorrow to have an extra pair of ears in the room with me so that's good.
 
Hugs to everybody and welcome to Farmsteader! Wish I could type more, stitches come out on Monday afternoon so hopefully after that I'll be back to my wordy old self. :p
 
Wow, I need to bring my mother to all my doctor's appointments.

Dr agreed that my throat looks super irritated, that my cough seems bothersome (though doesn't seem to affect my lungs) and that I generally should not be feeling so bad on this high dose of PPIs and they just don't seem to work very well for me. However, they REALLY don't want to to surgery on me. Which she admits is partly because I'm a complex case and they hardly do the surgery for those without severe esophageal dysmotility anymore.

So I'm having a gastroscopy with biopsies next week. To see if I have esophagitis or something else going on that makes it trickier than it should be. Probably will increase my dosage further which is something my GI had never had to do in her entire career (I'm such a fun case :p ). Basically the song remains the same - try EVERYTHING before consulting an experienced surgeon, which she now finally admitted we might have to do. Before it was a hard no.

So it was really good. One of those appointments that really push you forward.
 
It has been awhile since I've posted here too, and wow! A lot has been going on. Welcome all newbies first of all. Izzie, I take the highest dose of Omeprazole allowed and still have occasional problems, but having had gastritis and esophagitis a while ago really made things worse for awhile until meds for those conditions finally helped. I have dysmotility issues in various areas of my GI tract as well (not just esophagus), which could have been caused by my past small stokes or diabetes according to the GI (or still in my mind possible IBD altho the GI won't acknowledge anything but IBS until it is proven, which I guess is a good thing given other possibilities). Every time I've had an endoscopy done, my throat is always quite inflamed and they have even suspected Barrett's esophagus, but those tests always come back normal. I do have a small hiatal hernia which doesn't help anything in the GERD Department. I'm glad you're having an endoscopy done, it can rule out things like this or give answers if you do such issues. Still, like I said, I still take the highest dose of Omeprazole allowed, even though the esophagitis and gastritis have cleared up, and have to be careful not to miss a dose because it is always right there waiting to rear its ugly head. I wish you luck and will be thinking of you.
Wldmtnhoney, I started to catch up on these post a few days ago and when you first mentioned your dry mucous membranes I immediately suspected Sjogren's. I have a mother and a sister with this condition but I can assure you they have done very well with just minor adjustments like eye drops. Just make sure you don't use eye drops that say they are for allergy eyes or "get the red out", those are hard on the eyes and can dry things out even further. In regard to your heart, I suspect that whatever is going on with your Sjogren's affected this. Quite often the heart is affected right at the beginning of the inflammation process that causes the dry mucus membranes etc., so my guess is they might put you on a short course of steroids just until things get under control and then I'll bet that everything else stabilizes. That is basically what happened in my sister's case, and my mother never needed anything else other than eye drops.
Cat, you can't win, can you? I won't say much because I don't want you to feel obligated to type anything with your cut finger. Just know I'm thinking of you with everything you have going on. :hug: 💕
Starnet, Dimitris, MommaLlama (my heart aches for your situation), Paul090, sarahfh, and all others (incl. you newbies), know that I'm thinking of you too . It is so hard to know that something is going wrong with your body and you don't know what it is and most of you have had frustrating experiences with doctors. That is something I definitely relate to.
Right now I am fairly stable (for me), I still have GI (and other) issues right and left, but at least I'm able to eat. For the first time in a few years I don't feel like I am going downhill and/or going to die, and I am content and happy.
I wish improved health for all of you, and happiness for all as well. (And yes, even without good health, relationships and love are possible Sarah.)
Gentle hugs to all that want them. :ghug:
 
It sounds like quite a few of you have made some progress recently, and that makes me so happy! I can only imagine what a relief that must be. You don't appreciate your health until you aren't healthy anymore.....or at least I didn't.

I've had some new symptoms pop up recently, which tends to happen to me periodically. It's like my body is saying, "Hey! I'm sick! Pay attention to me! Fine, I'll do something else so maybe you'll listen this time!" I'm listening to my body, but no one else seems to be! Is anyone else super sensitive to everything? I've noticed that since I've gotten sick, my senses seem to be heightened. Like my sense of smell. I smell things that my husband can't, and to me they're really strong. And they bother me. Sounds also bother me too. When something is loud (even when it's not even that loud), I can literally feel it inside my ears, and it hurts. Loud noises sometimes make me feel anxious too, which never happened before. It seems like even my skin is more sensitive. I keep catching mosquitos in the act of biting me, and it even kind of hurts while they're biting me. I live in an area with tons of mosquitos, so I'm used to getting bit, but I've never been able to feel them like this before. Anyway, it's all very strange.

Have you guys heard of scalloped tongue? Where your tongue is swollen/too big for your mouth so your teeth make indents on the sides of it. I've heard it can signal a thyroid problem or too many toxins in your system. I don't know, but I have it, and it drives me crazy sometimes. It's such an annoying feeling that I can't even describe.

I hope everyone has a great weekend and continues (or starts) to make progress!
 
akgirl, I had (or thought I had) scalloped tongue for a while, though honestly it was only when I started thinking about maybe having it I couldn't stop noticing it and it drove me nuts :p

But I had my thyroid checked and everything is normal. I do have some vague indentations on my tongue but I had braces for many years that pulled my teeth back a lot so for me I think it's just that.

Have you had bloodwork to check your thyroid?
 
Sorry I've been MIA, between mum and her gallstone, my dad being in hospital and a flare up I've not been getting much online time!

I actually just wanted to pop in and say today's appointment may have made some progress for me! It may all turn out to be useless I don't know yet, but my consultant has finally ordered a small bowel MRI/MRE with the barium contrast stuff! I went into the appointment expecting to be told it's IBS and off to the dietician for me and feeling so negative about it so I'm still in a bit of shock. I know the MRI/MRE might not show anything but I'm so glad they have ordered it, I think it's my best chance to find out for sure if it's Crohn's or not.
 
Izzie, I'm glad you understand how annoying scalloped tongue can be! Sometimes it doesn't bother me, and they sometimes it's all I can think about. It was really bad yesterday, and then at 3am I woke up with a horrible stomachache, had to poop, was cold/shaky then hot/sweaty. Maybe they're related. Who really knows? I've had bloodwork for my thyroid done a couple times. They were both in the normal range, but my doctor still has me on supplements (iodine and selenium) for my thyroid, and she said it felt swollen, so I really don't know what's going on with that.

Sarah, I'm glad to hear that you are feeling more hopeful! Isn't it sad that we go to the doctor feeling like nothing useful is going to come from the appointment though? I'm the exact same way, and I'm sure a lot of others can relate. Keep us posted!
 
Just a quick question for you all since I won't be able to ask before my appointment - when they say you're supposed to be "fasting" for 6 hours prior to endoscopy, they mean no water too, right? I can't remember :p
 
Izzie, yes, unfortunately I do think that includes water. The only reason I remember that is because I still remember rinsing my mouth out with water beforehand and having to spit it out, because I wasn't allowed to swallow it! I think it's just a precaution, but I'd rather be safe than sorry! Good luck on your endoscopy, and let us know how it goes.
 
Thank you! I'm terribly nervous, far more so than I have been for my prior three. I keep catastrophizing thinking that maybe the sedation just won't take this time, or something will happen :p

It's silly. I'll keep you updated and I wouldn't mind some positive thoughts sent my way, I'm hoping there isn't any significant damage to my esophagus, but we'll see...
 
I'll be sending positive thoughts and prayers your direction Izzie. I always find medical testing the most distressing time because of the unknown, but I'll pray for peace for you and the answers you seek. Hugs.
 
Sooo that didn't work. Sedation just didn't take, or rather it made me all wired up instead. I still kinda lost all memory of it, but I remember the endoscope going in and just gagging like crazy and then I pushed them away. They apparently tried for 20 minutes, two different doctors, for me it felt like 2 minutes. So, yeah, I'm super disappointed and annoyed. They're planning on doing it with some kind of heavier anaesthesia, but I'll have to wait like 3 months until after the summer.

I feel like I failed myself but they told me I should feel like they failed instead. Apparently it happens like once a month that the person just doesn't react to the meds right. They gave me a LOT too and I was ready to walk out the second I was wheeled out.

So yeah. I'm disappointed and sad. Apparently my doc wants to check for allergies that somehow cause a reaction in the esophagus? I was still too loopy to get the full gist of what he meant by that, but we'll see I guess.
 
Izzie, that sounds awful. Hopefully next time they knock you completely out! I had sedation fail me as well, but that was just during a flexi sig - I'm sure it would have been worse if it were an upper endoscopy, that just sounds horrendous. Definitely talk with the anesthesia nurse before the next endoscopy and make absolutely sure that they will be doing full anesthesia and make sure that the nurse is aware of what happened with the sedation failing. It's in my medical file that, for all future scopes, I get to have full anesthesia rather than sedation, so make sure it's in your file as well.

How's everybody doing? I'm doing somewhat better. The stitches come out of my finger in a few hours, and hopefully after that I'll be able to type more normally. My typing is improving, but my finger is still stitched and bandaged, so I'm looking forward to being done with that stuff.

I did have a mini-flare the past 4 days or so (Thurs - Sun), not a fun time. I had recently started taking a supplement called D-Mannose. It is supposed to help with bladder issues, which I also have (I get recurrent UTIs - I'd get 6 or 8 in a year before I started taking cranberry supplements, and I still get about 1 per year even with taking cranberry supps). I read some reviews online of D-Mannose and everyone was saying that it was better than cranberry, so I tried it. Stupidly, I didn't read up about the side effects before taking it. Turns out diarrhea is a side effect, of the explosive and urgent type, and apparently so are horrendous cramps and massive nausea. It made me feel horrible! I figured it out pretty quickly and stopped taking the D-Mannose, and I finally have something of an appetite back today although I'm still not feeling super well. So, if anybody else has bladder issues, DO NOT try D-Mannose. It honestly actually did make my bladder feel pretty well, but it did awful awful things to my digestive system. I lost like 5 lbs over the weekend just from barely eating and having diarrhea. So not fun!

So yeah, I'm back to cranberry supps and hopefully on the mend now. Mini flare is ending and the stitches in my finger are coming out today. All good things but it was a pretty crappy week last week! This week has GOT to be better!
 
Wow that sounds like a miserable weekend Cat! Glad to have you back and typing :)

Honestly, the sedation does knock out my memory so I feel okay right now but I don't think I was having a very good time in there as it was happening :p I wasn't even that nervous when I was going in for my appointment so I think it was just how I reacted to the sedation. They did the same thing that they did the last time a scope failed. They take it very slow with the sedation. The two times that it's worked they've really just knocked me straight out from the get-go.

But it seems I have a 50% failure rate for upper scopes so from now on I'll have to be put to sleep fully. Apparently you can do full anesthesia without having to be intubated (not quite as heavy as when you're having surgery then). I've never heard of it, but I just want it to WORK, so I'll do it.

At least everyone at this university hospital are very kind and determined to find answers. I remember my last failed scope, the doctor blamed me for it and seemed really annoyed. This doctor was like "no no, don't worry, we're the ones who've failed to do our jobs here, we'll do it another way and it'll be fine". It's a night and day difference from the hospital I was at before.


ETA: Has anyone else ever heard of allergic reactions that manifest in the esophagus? Honestly I was a little loopy still when the doctor talked to me and I don't know if my mother understood him right but what he said was that if that were the case I'd have to start taking some kind of liquid cortisone that wouldn't actually be absorbed in the bowels but rather just have a local effect on my esophagus. Does this ring any bell whatsoever for anyone? Maybe he said inflammation and my mother misunderstood, I don't know.
 
Izzie, I would assume that allergic reactions can happen in the esophagus - isn't that essentially what anaphylactic shock is? I mean, obviously anaphylactic shock is a pretty extreme reaction, but I would presume that lesser allergic reactions can happen in the throat as well. I don't know for sure but that's my guess anyway.

Yeah, my memory is mostly knocked out by the sedation as well. During my flexi sig where the sedation failed, I was awake & talking the whole time. But I only remember a snippet of it, and it feels like it was a dream. All I remember is that I was trying to see what was happening on the monitor, but I didn't have my glasses on so I kept drunkenly complaining, "I can't seeeeeeee!" :p And there's no pain, no discomfort in my recollection. It felt like I was dreaming or super drunk. I didn't even realize that I was awake & talking the whole time, until a nurse informed me of that fact. So yeah, my experience wasn't too bad at all and they were able to complete the scope in spite of me being annoying, ha ha.
 
Oh, Izzie, I'm so sorry things turned out like they did! I know you want relief, but I'm glad the staff at least treated you well. Being treated poorly can cause so many other problems. I also think sometimes things happen for a reason (maybe this will help protect you from future anesthesia/sedation problems at a more critical time? At the very least it helped point to a suspected allergy that it sounds like you didn't know you had), so I will just pray your symptoms stay in check for now.
Regarding the allergic reaction in the esophagus, I agree with Cat, tho these allergies can happen to a lesser degree. I'm just speculating, but perhaps the doc is referring to the many allergies that can cause throat and tongue to swell. Having had some of this type of reaction myself to other meds and/or things, plus having asthma and history of pulmonary emboli which resulted in requiring oxygen for several months, I'll also speculate about the med to treat this being an inhaler (corticosteroids) when your mother mentioned "cortisone ." I could be wrong though.
Cat, so sorry you had several rough days there but glad things are getting back to normal. That will be a relief to have your stitches out, I'm sure. I've also had very serious UTI problems so very much appreciate the heads-up about the D-Mannose, I would probably have tried it once I learned about in much the same way you did (but I hadn't heard of it before). In fact fact, this past year I've had so many infection they put me on a six-month course of antibiotics. I have about one month left and will be so glad when I am done!

I would like to say that I am well, but I am not. The majority of my problems are non GI related, tho I still have my share of those. Thankfully they (the GI problems) are not as severe as they were a few months ago. Now, if I could get everything else under control...

Wishing you all better health and better answers. :ghug:
 
I would've thought inhaler too, Sandy, but he specifically said esophagus (as opposed to airways) and something I'm meant to drink. I think they're speculating that I might have an ongoing allergy to something I'm eating or drinking that's irritating the whole area. Though they also said that this is all quite unlikely. They're also checking for possible fungal infections, and just plain old inflammation, Barrett's etc. Oh well, I'm sure he'll call at some point when I'm not doped up :p

And now it'll be a few months before I find out either way.

Thanks for your support!

Sorry to hear you're not well Sandy, wishing the same for you and everyone else here!
 
Izzie I'm so sorry the endoscopy didn't go as planned! I really hope it doesn't take them too long to get you in for the scope under anaesthesia.

I've had such a crappy morning and just needed a small vent, I figured here is the best place. I've been in flare about 3 weeks now and barely able to eat, I'm doing okay with small snacks and stuff but every time I try something "proper" I wake up at like 3am boiling hot and sweating with awful nausea, pain and then inevitably diarrhoea. I mean, it happened with chicken noodle soup the other day! Anyway, I have fainted a couple of times over the weekend and I'm guessing it's lack of nutrients, but thought I best get it checked out so went to see the GP today.

He is by far the worst doctor I have ever come across and that is including the bad appointment with my gastro. He basically isn't at all familiar with my history so I gave a very brief overview, and he said it sounds like I have an eating disorder with "mild" gastro problems which are probably caused by said eating disorder any way! Like seriously, what the eff?! I'm so angry and upset.

Yes I am beginning to fear food but that's because of the symptoms I get from eating, nothing else! I have no part of my brain telling me I'm fat or need to lose weight, in fact it's the opposite, I am very aware of how thin I am right now and I wish I weren't this size! I miss food and would give anything to be 2 stone heavier and healthy.

I just want to give up, I really do. I just feel like nobody wants to help me get better. I'm trying not to get my hopes up about the MRI/MRE but it's so hard, I feel like I need it to show something! But after all the negative results so far and the way my gastro has basically dismissed the colonoscopy results I feel like it needs to show something. Being undiagnosed is really hard work sometimes!
 
Sarah, can you get a new GP? Because that doctor sounds awful! To write everything off as being an eating disorder, that's just wrong (not that eating disorders aren't a serious illness, but obviously that isn't what you've got going on!). Find a good GP who listens and takes you seriously, it's vital to have a doctor who listens and doesn't write you off like that.

I'm lucky, I found a good GP and have stuck with him ever since. I saw him yesterday in fact, he removed my stitches from my finger (which is still quite tender so I'm not back to my old self quite yet in terms of typing ability). He's always taken me seriously and believed from the beginning that I have some form of IBD. Periodically at work, I need to re-apply for Family Medical Leave (so that I can take more sick days than the average healthy person without being penalized/fired). And on my FML forms, when it asks for the patient's illness, he's allowed to put down undiagnosed - but he always puts down "IBD/colitis". I seriously don't know what I would do without a GP like that.
 
Sarah that doctor sounds like my old GI who kept insisting that I had "psychosomatic" issues for a year.

Definitely try to find a new doctor if you can, it's made all the difference for me.


I was worried yesterday that perhaps they just didn't try hard enough to make the endoscopy work. But then today I woke up with THE worst sore throat ever. I think they tried pretty hard :p
 
Thankfully he isn't my usual GP, it was an urgent appointment so I didn't get to pick the doctor. It's just so frustrating! It was seriously the last thing I expected or needed right now. I just wanted someone to help because I feel so ill and weak right now. But as always I'm being left to it. I really have to make it to work the rest of this week, I'm on such thin ice already. The worries and stress of that really aren't helping!

Also out of frustration from the appointment I've forced myself to have a proper dinner and I'm already thinking it was a bit of a mistake but oh well hey.
 
Keep the chin up Sarah! You know what the source ISN'T, and tho its discouraging to have quacks like this out there, other docs will take you more serious. I know that. Hugs, and continue to be the strong person you are.
 
sarahfh said:
Thankfully he isn't my usual GP, it was an urgent appointment so I didn't get to pick the doctor. It's just so frustrating! It was seriously the last thing I expected or needed right now. I just wanted someone to help because I feel so ill and weak right now. But as always I'm being left to it. I really have to make it to work the rest of this week, I'm on such thin ice already. The worries and stress of that really aren't helping!

Also out of frustration from the appointment I've forced myself to have a proper dinner and I'm already thinking it was a bit of a mistake but oh well hey.
Click to expand...

It's so hard to try to make yourself eat (and prepare) "normal" meals. I always just feel crappy after I eat my own cooking :p My body has currently decided it hates anything that contains fat at all. So tonight I tried to eat ground beef and eh, yeah, that didn't work at all. The only things I can eat problem-free are soy yoghurt, one brand of dairy free protein pudding cups, organic apples, and rice cakes :p Not very nutritious.

It's strange though. An hour or so after I eat a meal I can't really stomach, I start coughing again. It's been okay for a few days, but now it's back.
 
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At my last nephrologist visit we reviewed the results of ultrasounds of heart , liver , pancreas and kidneys. There was some age related valve leakage in my heart but not bad enough to be congestive heart failure or anything to cause the extreme peripheral and pulmonary oedema I have been suffering. My Neph asked me to take 5mg daily of prednisone for two weeks. I hate the stuff but agreed . All of my organs appeared normal on ultrasound with no signs of baddies. I was on the pred for a week when I got an upper respitory tract infection . After two days my right lung was half full and I was put on anti-biots . After another two days the left lung was involved and I was now a much stronger anti-biot ( still on the first one) I did not want to go to hospital so I spent five days in bed coughing my lungs up. By the last tablet of the second anti-biot I was getting better. My gp had also put me on 25mg daily of pred for four days. I went back to my nephrologist today, it has been five weeks since I last saw him. My protein loss is the lowest it has been for two years from seven grams a day down to 400mg a day. My blood pressure has almost been normal and my blood sugars are also near normal. I did not stop the 5mg of pred after two weeks as I monitor my bp and sugars every day and I could see that they were good. All of my elevated liver functions hare almost back to normal and my cholesterol and uric acid are both as low as they have ever been. My neph knows that I have responded well to cyclosporine but he has no idea why I am currently doing so well. He said it could be the combination of the cyclosporine and the prednisone or it may have been the ant-biotics or a combination of all three. I can't win , when I am unwell they don't know why and now they are not sure why I am feeling and testing better. Ron.
 
*Whine and venting!!**

I have been to ED twice since Sunday with horrible RLQ pain. Once a CT scan - came back fine. Blood work all looks good. So they send me home. Once with 600mg ibuprofen, which I remember when I get home that I'm not supposed to take, being on blood thinners, and the 2nd time with lidocaine patches.

The 2nd time I also feel that I was treated really oddly. I'm not sure. The nurse claimed, repeatedly, that it was just this Dr's way of treating all his patients, but it was just soooo odd a medication combo! So, I have a history of mental illness. Its in my charts, and I'm on meds for it. The 2nd day I came, I had to wait over 90 minutes in the waiting room before being seen. I was VERY uncomfortable by the time I got back. I was probably talking too fast, and seeming anxious, etc. Anyway....instead of zofran for nausea, the dr gave me Haldol and Benadryl. Haldol is a SUPER strong antipsychotic. Then he gave me Toradol, an anti-inflammatory, which I'm still not sure I'm supposed to have while on blood thinners (?) instead of anything else for pain. THEN, I was at a teaching hospital and a student came in and asked if I'd be willing to take a survey. "sure" - I almost always say yes, I mean what's the point in being in a teaching hospital if you aren't going to help them, I think. But then, the survey was all about opioid use and addiction. I couldn't help but think it was targeted -- and I haven't even had an Rx for opioids in months (they do sometimes give them for my pain) but I had been given morphine the previous ed visit. It was just a horrible, weird thing all around.

So now I'm home, with pain, wearing lidocaine patches at night that aren't really doing much on my belly, that I can tell, and having watery D again.

I called GI, but they can't get me in until next week (which is, admittedly, really really fast!).

Decided I won't go back to teaching hospital. There is another hospital anyway, that GI recommends, that isn't too far. Figure if I run a fever I'll go there. So far I'm just hovering at 99+ (oh, but I did get over 100 on Sunday, but just once and Tylenol broke it).

Didn't get a whole lot of sleep last night. Hoping to rest some today. Have friends who are taking care of my kiddos.

Wishing us all healthy thoughts!!
 
Wildmtn, that sounds awful. I hope your GI can do something worthwhile to help next week - keep us posted. In the meantime, rest and take care of yourself as much as you can! Hang in there!

Izzie, I keep a stash of "flare food" just in case. It's things like rice krispy bars, instant mac & cheese, rice cakes, etc. Basically it's food that I know is safe, and is very easy to prepare (the mac & cheese is just, add water and microwave, and that's the most labor-intensive of my flare foods). I definitely needed my flare food this past weekend when I was feeling so horrible. I don't know if there are any foods like that that you can stock up on, but if so, definitely hoard a little stash of safe foods for when you're too ill to cook.

How's everyone doing today? I'm feeling a lot better - as soon as that stupid supplement got out of my system, my body has pretty much gone back to normal (well, my version of normal). I only had one bowel movement today and it was fairly firm & formed, so no more diarrhea. The nausea and cramps are gone as well and I feel much more like myself again. My finger is still pretty tender, but I can tell that it's improving bit by bit each day. So yeah, I'm doing okay, definitely a LOT better than I was a few days ago.
 
We finally got a diagnonis!!! Ends up M has Idiopathic Gastroparesis...only took 4 yrs and a WHOLE lot of testing, but we finally got a piece to this puzzle!
 
MommaLlama, so glad you know the source of at least some (if not all) of the problem! I've read quite a bit about gastroparesis as that has been one of the suggestions of probabilities for my GI problems (I have diabetes and have stroke history, so if I have it, but not proven yet, mine is not idiopathic.) I'm more and more convinced that it is (gastroparesis) what my problem has been, tho, too. Sorry to talk so much about myself here, but what I'm trying to do with all this is to offer you some hope.
Tho I went thru some horrible times, and tho I still have GI problems daily, they are comparatively minor. I've gotten to where they are manageable and I'm not constantly writhing in pain, or constantly nauseous and/or throwing up. Everyone is a little different in how they handle things, and there can be a wide range of severity for gastroparesis, but with me, once they cleared up a few other of my GI issues (probably caused by gastroparesis), and a few little life style changes, I am so much better in the GI areas! Hopefully they can find, and very quickly, what helps M the most. She is younger than me and it might be more discouraging for her to realize that she might have some long time issues to deal with because she is so young and has her whole life ahead of her, but kids are sometimes more resilient and accepting than we are as adults. But there is hope for a much more painfree and normal life. So happy you have some answers!
 
Thanks Sandyute..it's been a long ride and I know it's not over as M is having a terrible morning. She's so done with all this..Something still tells me the doctors are missing something because her heart rate is staying around 140ish and she is getting UTIs now..(never ever had had one) and she can't control body temp. This morning she now has rash starting on her torso...Ughhh..I have to commend all of you for putting up with this..it takes a lot to push through it. I wish everyone well
 
Izzie
EOE is eosinophilic esophagitis
Which basically is a mixed IgE reaction to foods and enviroment
Swallowed steriods and /or elimination diet ( top eight allergens -milk wheat soy eggs fish shellfish tree nuts and peanuts ) will stop the symptoms and fix things
Apfed and KFA are two good resources
Most kids are dx but it's a newer disease so more adults are being diagnosised

http://apfed.org
http://community.kidswithfoodallerg...esources-egid-celiac-crohn-s-fpies-and-gerd-1

Good luck
 
Mommallama what did they give her for her GP?
Ds was dx with it last year
He also has temperature issues and rashes
His rashes turned out to be sweets syndrome
Temperature issues were autonomic dysfunction per his Rheumo very common with autoimmune disorders
He currently drinks neocate Jr for nutrition and takes ees granules 4 times a day
He is working solids slowly back into his diet
At one point this year he was able to eat 1400 calories of food and only needed 900 calories of formula

Tagging maya142 since she deals with it as well
 
Oh my, now I'm wondering if my racing heart I experience currently is at least partially related! It wears you out so very fast. But I did have an atrial septal defect (a hole in the heart) repaired with a patch thru a catheterization process, and always blamed my racing heart on that because it raced a lot more after that procedure. (Which shouldn't happen.) And I also have had a lot of UTIs, in fact I'm just finishing up a 6 month course of antibiotics because I got so many. I have also broken out in rashes for unexplained reasons in the past. I also get very small psoriatic patches (have for years) which is usually associated with an IBD, not gastroparesis however. But I suspect the fever and other rashes can be from fighting UTIs or other infections (I know low-grade fevers can accompany UTIs.)
At any rate, not everyone with gastroparesis has to go to a liquid diet, but some with extreme cases even end up with a feeding tube for a while. It is all very varied. Other than when I couldn't eat anything other then things like clear soup (even that with difficulty), then I probably passed a small obstruction right before the CT, I never was told I should go on a liquid diet but my eating habits changed drastically out of necessity. I'm much more careful to chew very thoroughly, and I just listen more to what it says it wants and can handle. I don't eat as much beef or fatty foods. (I used to be a meat-and-potatoes gal), most of my protein is from chicken and I even started liking fish that I didn't like before. I also drink tons of water. I can't eat big meals, but eat more often, which is also good for my diabetes.
 
My daughter has Gastroparesis too (and Crohn's). She has also dealt with heart rate issues. We did lots of testing for the heart rate (it was very high) -- EKG, echo, Holter monitor for 24 hours -- and eventually her cardiologist decided the high heart rate was caused by the stress chronic illness puts on the body.

For Gastroparesis, she had a very hard time at first. Very nauseous, lost a lot of weight, threw up after meals (sometimes). She lost about 25 lbs. We tried Erythromycin and Bethanechol, which helped a little. Eventually, she was so underweight that she was admitted to the hospital several times and finally an NJ tube was inserted (which bypasses the stomach and goes straight into the small bowel). She kept that for 12 weeks or so and slowly began to gain weight. We also switched to Domperidone to speed up her stomach motility and that really helped.

Now she has gained back all the weight she lost and eats about 1200 calories a day. She still does get feeds overnight through a GJ tube (a more permanent tube -- surgically placed in her belly).

She also takes Zofran for nausea.

It has been a LONG journey to get her healthier and took about a year to get the Gastroparesis under control. Good luck!

Check out the Parents of Kids with IBD board - there are several parents with kids who have Gastroparesis.
 
Also wanted to add that her diet is still pretty limited. She does not eat high fat or high fiber things. She can't really eat veggies unless they are very well cooked or in soups.

When she is especially nauseous, she stops eating and we just increase her calories through her feeds. Before she got her feeding tube, she used to drink shakes -- you could try Boost and Ensure. Liquids are easier to digest and so she might have an easier time keeping them down.
 
my little penguin said:
Izzie
EOE is eosinophilic esophagitis
Which basically is a mixed IgE reaction to foods and enviroment
Swallowed steriods and /or elimination diet ( top eight allergens -milk wheat soy eggs fish shellfish tree nuts and peanuts ) will stop the symptoms and fix things
Apfed and KFA are two good resources
Most kids are dx but it's a newer disease so more adults are being diagnosised

http://apfed.org
http://community.kidswithfoodallerg...esources-egid-celiac-crohn-s-fpies-and-gerd-1

Good luck
Click to expand...

Oh thanks so much for the information! Now I understand somewhat what it is they're looking for. I've never heard of this condition before.

I've wondered myself why it is that I start coughing/getting very irritated in the throat after eating some meals but not others. Haven't been able to see a pattern myself though.
 
my little penguin said:
Mommallama what did they give her for her GP?
Ds was dx with it last year
He also has temperature issues and rashes
His rashes turned out to be sweets syndrome
Temperature issues were autonomic dysfunction per his Rheumo very common with autoimmune disorders
He currently drinks neocate Jr for nutrition and takes ees granules 4 times a day
He is working solids slowly back into his diet
At one point this year he was able to eat 1400 calories of food and only needed 900 calories of formula

Tagging maya142 since she deals with it as well
Click to expand...

They have taken her off all her previous meds and now only have her on Azithromycin and a Probiotic
 
Maya142 said:
My daughter has Gastroparesis too (and Crohn's). She has also dealt with heart rate issues. We did lots of testing for the heart rate (it was very high) -- EKG, echo, Holter monitor for 24 hours -- and eventually her cardiologist decided the high heart rate was caused by the stress chronic illness puts on the body.

For Gastroparesis, she had a very hard time at first. Very nauseous, lost a lot of weight, threw up after meals (sometimes). She lost about 25 lbs. We tried Erythromycin and Bethanechol, which helped a little. Eventually, she was so underweight that she was admitted to the hospital several times and finally an NJ tube was inserted (which bypasses the stomach and goes straight into the small bowel). She kept that for 12 weeks or so and slowly began to gain weight. We also switched to Domperidone to speed up her stomach motility and that really helped.

Now she has gained back all the weight she lost and eats about 1200 calories a day. She still does get feeds overnight through a GJ tube (a more permanent tube -- surgically placed in her belly).

She also takes Zofran for nausea.

It has been a LONG journey to get her healthier and took about a year to get the Gastroparesis under control. Good luck!

Check out the Parents of Kids with IBD board - there are several parents with kids who have Gastroparesis.
Click to expand...

Oh wow..M unfortunately can't drink the boost or ensure's because it really sends her in a flare..I'm guessing lactose intolerant? What foods have you found that your daughter seems to do well with?
 
She does ok with fish, shrimp, chicken and eggs for protein. LOTS of carbs -- pasta, bread, tortillas, potatoes etc. Low fiber, low fat. Not a lot of cheese or butter. She can have veggies in soup and well-cooked (creamed spinach is a favorite). She also loves dessert ;). If your daughter likes fruit, you could try smoothies.

When she was first diagnosed, we saw a nutritionist her GI recommended and got some diet recommendations. That might be helpful.

I will say that in the beginning, she was so sick that she ate about 3 foods for a couple of months and mostly survived because she got formula through her tube. Over time, as she has gained weight and gotten better, she has started eating more foods.

She is also lactose intolerant but takes Lactaid when she has cheese or milk (she can only have very small quantities of milk/cheese/chocolate -- anything with dairy). I think she really has issues with all dairy and not just lactose (because she can't drink lactose free milk for example) but not quite sure.

Boost and Ensure should actually be ok for someone who is lactose intolerant. However, if she can't tolerate them, you can try more "broken down" formulas -- semi elemental ones like Pediasure peptide or Peptamen Jr. There are also elemental formulas like Neocate and Elecare but they taste awful and most kids have a lot of trouble drinking them. My daughter is on Neocate but really cannot drink it -- that's why she has her feeding tube.

Reflux is also common with Gastroparesis, so you may have to avoid things that make it worse (tomatoes for example). My daughter needs a PPI and Maalox because she has pretty bad reflux, but it really depends on the kid.

Azithromycin should help with her motility. We started off with Erythromycin which is very similar. Really hope she starts feeling better soon!
 
Thanks so much for this info...sounds like you also have been a lot. Its been a lot of trial and error figuring out what M can tolerate so I really appreciate your suggestions
 
Hi everyone!

Hope you're all well. I took a weekend off from begin sick :p Went home to my foodie family for a few days, and now I feel as expected. Still carrying on with the different medications, trying new things but I always seem to plateu at a very "blah" stage where I'm not horribly ill but not exactly well either.

At least I've figured out the best life hack ever - I can't really wear tight things around my belly currently, but I'm not about to go to work in sweatpants and I am NOT a dress or skirt person at all. So I've taken to putting a hair elastic through the button hole of my pants and then looping it around the button to make some kind of DIY elastic waist for all my high-rise jeans. And it totally works! Would look a little silly if someone saw it, I guess, but unless I start wearing crop tops that's unlikely to happen. Success!

I've already changed how I eat, sleep, live and work out because of this illness I am in no mood to change my wardrobe too :p
 
Izzie, I was never a dress or skirt person for the longest time either, but this year I've made a big effort to wear more dresses and skirts, and I actually don't hate it now. About a year ago, I had to help out at a fancy banquet thing at work, and I was SO uncomfortable wearing a fancy dress - it wasn't that the dress itself was uncomfortable, it was that I just felt so weird and awkward in a dress. So I decided that I would work on that discomfort and make myself wear more dresses & skirts. I try to wear either a dress or a skirt once per week. I usually wear leggings or tights with dresses/skirts because that makes me feel more comfortable, almost like wearing pants with a dress over them. And it's actually been going really well and I got myself some really cute dresses and skirts that I love. Leggings are almost as comfy as sweatpants and they don't put too much pressure on my belly, so I've been wearing dresses with leggings on bad tummy days sometimes. I'm still not a fan of the lack of pockets on most dresses/skirts, but aside from that, I'm actually enjoying wearing cute dresses and skirts nowadays. I feel much less awkward now that I'm used to wearing them regularly.

If you're dead set on wearing jeans, see if you can find a good pair of maternity jeans. They have elastic around the top waistband area and might be a more comfortable than your regular jeans with an elastic hair band. And a shirt should cover the elastic waistband, like you said. Just another thought for you. :)
 
Izzie, I used that same trick early in all of my pregnancies!

Momma Llama - I'm glad you have a start with answers...now I just hope you can get M feeling better!!

I am super frustrated by my health, and a random note on a CT! I can't get feeling better it seems! Yesterday, I just could not stop the nausea, which was getting worse because of the pain. When Zofran was no longer working to help keep even water down, off to the ED I went (again!). I was such a wreck they insisted on another CT (I think I'm going to glow in the dark soon). This time they found a ovarian cyst, which we're all pretty sure isn't really the cause of my pain, a nice normal appendix, but there is a random note about "tiny mesenteric lymph nodes seen in pelvis" -- which got me googling (BAD idea). It seems that can cause appendicitis-like pain (ok, an answer!) and can be no big deal (yay!) or can be a bigger issue (BOO!) so of course I just have to follow up with GI. But part of figuring out if it is "not a big deal" or not is how big the nodes are, and "tiny" just isn't a good value!! Is that less than 5mm? 3mm? What? I assume my GI can call and get all the info, but all I can give him straight away is the print out they gave me, with the word "tiny" on it.

In brighter news, I have phenergan suppositories to get me through today, and dh is working from home today AND taking time off tomorrow to go to the GI appointment with me, because he is just that freaking awesome.

Wishing everyone health!!
 
Wildmtnhoney - It's a very neat trick! :D

Googling is always the worst idea. I hope you'll get answers soon and that it's no big deal! Having loved ones willing to take time out of their day to help you out and go to hospitals with you is the best! My mother is retired and has been great when it comes to driving me places and coming with to appointments.
 
Hello to everyone reading this now. I hope you're all doing well.

I haven't posted in a while as I've been more concerned about my income situation and not losing my apartment. But I'm still frustrated to no end by these doctors.

I saw my GP a couple months back when I was too ill to go to work complaining of joint pains (primarily knees and ankles), so she referred me to a rheumatologist. I like my rheumatologist, he was extremely thorough, asked me many questions about my history, symptoms, etc. He asked me if the joint pain worsens when I have bowel symptoms and naturally, they do...he suggested Crohn's-related arthritis and sent me for some x-rays and blood tests. Nothing suggesting rheumatoid arthritis or sacroilitis, my ferritin is much better after three weeks of iron sucrose infusions but it looks like I'm mildly anemic now despite that (low RBC, low hemoglobin). I can't help but wonder if I have impaired absorption of other things besides iron. My infusion nurse said that its extremely likely that the reason I didn't tolerate the oral iron well is due to malabsorption. My rheumatologist wants to take me off the Pentasa and switch me to sulfasalazine which he said should help with the arthritis as well as the bowel symptoms. He said he'd collaborate with my gastroenterolosist to see if he recommends such a course of action. I've read that sulfa works better than 5-ASA for Crohn's so I'm open to trying it. But nobody believes I'm yet ready for any biologic or immunomodulator.

My biggest concern is my gastroenterologist (or lack thereof because his office never follows through on any of his orders anymore). Nobody has bothered to do any imaging in over a year because of how "normal" everything looked a year ago and that my symptoms "aren't severe enough" to warrant any other (more effective) treatment options.. This concerns me. I've been having extreme pain and abdominal swelling in the same three spots. Been feeling a different kind of pain. It's way more severe and although intermittent, feels like parts of my bowel are inflating almost, like there's a balloon in each area of pain that's trying to pop inside my gut. But nobody seems concerned. Even when I'm not in an active flare, the pain can be extreme and disturbing. My GI keeps referring me to a pain clinic but all they do there is give people drugs (and opiates make the pain much worse, not better). Like the insensitive doctor I saw in April who refused to even listen to my history and immediately diagnosed me with IBS said, where else am I going to go for treatment? I have seen almost every gastro in town.

All that said, I'm willing to try the sulfa over the Pentasa as every study I've read said that the sulfa is more effective anyway. But I am very curious as to what my guts actually look like at the present time. I get that radiation is an issue but we're all gonna die someday from something and like I keep saying, sunlight and food additives cause cancer, too. Life causes cancer. Dying is an inevitable part of life. Why won't anyone listen to me and how bad the pain is? I may not be in a flare at the moment but I'm still in extreme pain whenever I eat something. Pretty lost about what to do.
 
@ Gadget, I get so flabbergasted at how doctors seem to not listen after one bad doc has put it in the records that one's GI problems are nothing serious. Is there a nearby town you can try a different GI? I hardly know what to say anymore because this seems so common in the medical field except keep fighting for yourself, someday it will pay off and someone (that can help) will take the pain and related symptoms more serious.
Myself, I think I'm going into a depression again because of all my health problems. Which, of course, doesn't help with the GI issues. I made an appt with just my GP (he, for the most part does listen) for Friday. I'm hoping he can help get me on an exercise/diet plan that can help with all my issues from strength/balance from my stroke to heart/lungs to GI to arthritis to diabetes. Everything seems out of whack. It gets so old not being able to do much.
 
Quick question: do you guys know of a Boost/Ensure type product without milk? I know they're lactose free but I've been ordered to 100% stay away from any dairy product, and it's convenient to just drink something that still has necessary nutrients on days when I'm just feeling really blah.
 
Not sure how easy it is for you to find, but here I can easily find Ensure Clear at the local stores - no milk at all.

EDIT!! I looked too fast at the ingredients- there is still whey protein
 
I did find that, but it has whey protein in it! Which is like a dairy by-product, I guess, I'm not supposed to have it :/
 
Haha I was too quick :) But yeah I've been happily drinking those thinking it was fine and then I actually read the label and was like... oh fudge :p
 
Oh sweet, those look really promising actually, thanks for the tip! I'm not scrawny enough yet that low-calorie is a huge no-no, to be honest, but I'm mostly looking for something for those days when eating dinner seems like torture :p I don't want to starve myself and I'm getting really sick of mashed potatoes haha
 
@gadget hopefully sulfa works for you I did well on it for both my gut and joint symptoms for a year. Now my joints are out of control. Gut symptoms never went completely but were a bit less infrequent and the cramping was less severe. I have added in immunosuppressives since but they didn't work - going to start Humira soon.
 
Izzie, I can't have dairy either, whey in particular really upsets my stomach. And I'm trying to avoid carrageenan because it seems that it can worsen IBD (they haven't done a lot of studies on it yet, it's supposedly been declared safe for humans without any real human studies, but in lab rats it seems to trigger and/or worsen IBD, and carrageenan is scarily in a lot of meal replacement drinks & powders). So yeah, no whey and no carrageenan for me. I found a product that's a soy-based meal replacement powder that has no whey/dairy and no carrageenan. It's called Total Soy. I add it to my breakfast smoothies (which I make with ice, cashew milk, powdered peanut butter, cocoa powder, and a banana). It seems to do me some good, it has protein and some vitamins in it. And it's not too high in calories either. Here's a link, I do the chocolate flavor:
http://www.totalsoy.com/all-natural/

SandyUte, I'm sorry to hear about the depression, but it's good that you're wanting to start exercising - I know from firsthand experience that exercise can help alleviate at least some of the depression, it's honestly the best anti-depressant that I've found for myself so I hope that's true for you too. It sounds like you've got a lot of complex health issues so hopefully you can find some form of fitness that works for you without any pain or issues. Are you able to do things like yoga? That's not too strenuous as long as you keep the stretches simple & gentle. Or maybe swimming? That's low-impact and really easy on the joints. Whatever you end up doing, start slowly and listen to your body. If something hurts or causes symptoms then stop doing that and try something else. There are lots of forms of exercise to try so don't get discouraged if something isn't working. And if something is working, still take it slow at first so that you don't overdo things and make your body unhappy. Over time, you can gradually increase the intensity, amount of time you're exercising, etc. Good luck!
 
I've noticed carageenan in a lot of dairy replacement products too like soy yoghurts and the like. I'm trying to avoid it as well.
 
I'm not sure what brands/products specifically are available in your country, but if you guys have the Silk brand of soy milk (and almond milk and cashew milk) and yogurts etc, those all seem to be carrageenan-free. But yeah, most dairy alternatives do have carrageenan. I've definitely had to read a LOT of labels to avoid carrageenan!
 
I am crushed. My GI has suggested no further testing, and that I find a pain clinic instead.

I do see my new cardiologist/rheum tomorrow, to talk about sjorgrens, etc. and I have a shred of hope that she'll have some input about this belly issue.

I don't want to be "pain free" I want to be healthy!

GI also said I may as well stop the Bentyl, since it isn't helping the D. Which he acknowledges is a problem. But then goes back to "no further testing needed" --- I just don't understand!
 
Aww, Wildmtn. :( I think a second opinion with a new GI is in order, that's ridiculous.

I'm having a little pity party for myself today... which lately seems like a regular occasion, every Thursday. I don't know why, but it seems like on Thursdays my guts are more unhappy. I'm not sure if it's stress? Like the long work week is getting to me? But this was a shorter work week because Monday was a holiday. Also, usually by Friday I'm doing at least somewhat better. I really don't know what the deal is with Thursdays lately, but it's been happening for many weeks now. I'm crampy and nauseous and just feeling pretty bleh. I'm going to pay close attention to my diet on Wednesdays in case that's the culprit. It's super weird. I don't know why or how I've fallen into this pattern but I really dislike it. I've come to slightly dread Thursdays. It's so odd!
 
Well, I just called that GI again anyway, as I'm passing blood :( No pain, so I don't think it's a fissure, and it's more blood than I've seen before - like, there was a small clot the 2nd time, but otherwise it's bright red blood.

My stools haven't been "hard" but yesterday they were "firmer" than usual. Maybe this is a hemmie?
 
Wildmtn, that sure sounds like it could be a hemmie. Mine can sometimes bleed a LOT and it's always bright red (but there sometimes is the occasional small clot). There can either be pain or no pain, depending on where the hemmie is located and whether it's thrombosed or not, etc. I can always feel mine if they form in the anal sphincter, but usually not if they form in the rectum. If a hemmie forms in the anal sphincter and becomes thrombosed, OW. When that happens I end up crying every time I need to use the bathroom, it's seriously miserable and painful.

As far as stool consistency setting this off - for me, diarrhea always seems to set off my hemmies, not constipation. Various doctors have lectured me about eating fiber and keeping regular and not becoming constipated, but for me (and I'm probably just weird), becoming constipated actually tends to stop my bleeding rather than set it off. I know that's not the norm but that's me! When I have a bleeding episode, I purposely take a bit too much Zofran because that constipates me, and that usually stops the episode pretty quickly. I don't recommend that you constipate yourself on purpose though because I think I'm a unique case and not normal!

Hopefully your GI can get this looked at right away - if not, call your GP ASAP. Either doctor should be able to do an anuscope (don't worry, no prep needed) and see what's going on. Presuming that it's a hemmie, they should be able to prescribe something along the lines of a suppository/cream/enema to help things heal up.

If the bleeding doesn't stop, particularly if you become dizzy or light-headed, that's when you should head to the ER. I've had to do that a couple times for my hemmies, sometimes you just lose a bit too much blood when they're really bad. Hopefully though yours won't get that bad! Feel better and keep us posted.
 
(Below was written, but not posted, before the last two ot three posts here. I hope it helps cheer you up, Cat, to know that you really helped me. Wildmtnhoney, I hope you get your problems sorted out, like yesterday!)

Oh Wildmtnhoney, that's awful! (And something I relate to). Hopefully, as time goes on you will have other medical practitioners who listen to your needs better, or even have that doc change his/her mind. Even if there wasn't any more testing to do at present, (but I am not saying that is the case here) it is ludicrous to imply that no testing is ever needed again. I hope you can get some relief soon.
Cat, thanks for your kind words. I am having trouble not going off on a big rant about doctors because of all my medical problems (and what I've seen here), tho I trust the ones I have now for the most part. But suffice it to say that I can't exercise like most people do as you can imagine from my list of problems, though know I need those endorphins to fly better. I am determined and a fighter, even when depressed, however, which drive I know most people lose when seriously depressed. And I am sure there is something my doc can help suggest. Thanks again for your kind words. That meant a lot
 
P.S. My hemmies always act up with the more severe diarrhea also. I rarely get constipated, but that can also aggravate the situation. I guess I get best of both worlds, lol.
 
Sandy, so glad that I was able to help! As you may be able to tell from my posts, I'm a big fan of fitness. Working on my fitness has helped me in so many ways - I had basically lost my entire muscle mass from being sick & flaring and then from being on steroids (it turns out that corticosteroids have the opposite effect of anabolic steroids - corticosteroids rob you of muscle mass). So I was in bad shape and had arthritis which was quite painful. I started out doing physical therapy for my arthritis, which helped a ton, and from there I tried lifting very light weights 2x per week. I didn't want to stress my body too much so I started with very light weights. That went fine so I gradually increased the weight and went up to 3x per week (nowadays, when I'm doing well, I lift weights every other day - I haven't lifted in a couple weeks though because with my finger injury I'm having issues with gripping objects properly).

So yeah, on a good day now, I can go lift heavy weights and it feels amazing. When I'm in the gym, that's basically the only time & place where I can forget for an hour that I'm sick. It's kind of like I'm a super hero - usually I'm mild mannered Sick Girl, but in the gym I transform into Healthy Girl. :) That sounds corny but that's how I think of it. In the gym, I'm strong and amazing and awesome and healthy. I'm not sick and I'm not sad when I'm working out. And my brain is full of things like counting reps and paying attention to my form, so it's like there's no room left in my brain to worry or to think about my chronic illness. The gym is definitely my happy place. :D

So, I'm really happy to help with advice, support, and encouragement for anyone on the forum who expresses interest in fitness! It's done wonders for me not only physically, but mentally and emotionally as well, and I love to hear that others on here are starting on a fitness journey in spite of the roadblocks that our bodies throw in the way. I won't lie, it might not always be easy. I've had to modify some parts of my gym regimen - for example, I cannot jog at all anymore, I have arthritis in my hips and even 1/2 mile of slow jogging will put me in pain for days afterwards. But, I can ride my bicycle, which still gets me outdoors and doing cardio, and it's low-impact and doesn't hurt my hips. So you may need to find work-arounds or alternatives like that as you figure out what your body can and cannot do.

Another thing I'd encourage you to do is to not compare yourself to anyone else. In the gym, that's easier said than done. I see lots of people who are lifting heavier weights than I am, are more flexible than I am, seem to have more stamina than I do, etc. It's easy to look at what others are doing and compare yourself to them - don't do that, though. Nobody else out there has your specific health issues so it's completely unfair to compare yourself to others. The only person you should compare yourself to, is yourself. :) If you were able to do a particular exercise yesterday for, let's say 30 seconds - then you know you can do 30 seconds again today or maybe even 35! That's honestly all the comparison that you need to do, just try to be a little better today than you were yesterday or last week.

I hope that was helpful too! I tend to ramble on wayyy too much when it comes to fitness, ha ha. :p Like I said, it's clearly something I'm passionate about. And fitness has been on my mind a lot lately, I'm going a bit stir-crazy lately because I haven't been to the gym the past couple of weeks, I've only really been able to walk and that's it since I injured my finger (I can't bicycle either because I don't think I could work the brakes with my injury). It's healing pretty well though and there's only minor swelling now, I actually might try lifting weights briefly tomorrow and see how that goes (presuming the Thursday icky belly feeling is gone by then - wish me luck!).
 
So GI diagnosed hemmies (without ever seeing, or even talking to me, this all came through the nurse) and suggested sitz baths and otc creams like preparation H. However, they did say that if it doesn't clear up in a week, I can call back and talk about scheduling a colonoscopy.

So I guess that's what I'll do. I already have a sitz tub thingy, and dh can run by the store on his way home for creams. I hope I don't need another scope, though.
 
Hi everyone! Long time no speak! Not been on here in a while but wanted to drop in and say hello.

And hi Cat! I thought you might like to know I started lifting weights and I'm loving it. Like you, I get to forget I'm sick for an hour. I'm training with a personal trainer and he has taught me how to do all the standard lifts like squats, deadlifts, bench press. I feel boss when I'm lifting. I'm going for my 100kg deadlift in a few weeks!
 
lsgs!! I was just thinking about you recently and wondering how you were doing, thanks for checking in! And that's awesome that you're lifting weights and loving it, I'm really happy to hear that. I won't ramble on any more than I did yesterday, but obviously I love lifting weights too. :) (I injured my finger pretty badly and it's still somewhat swollen & painful, so I haven't been able to lift for a couple weeks and I've been daydreaming about doing squats, ha ha!) How's everything else going with you? I know you had some really scary times with your health so I'm hoping that things are much calmer now.

Here's the brief update on me - I don't even remember when we last chatted, but for like a year I had recurrent nasty internal hemorrhoids that were bleeding like crazy. My iron dropped super low and I had to have iron infusions. I went to Japan in the midst of all that and had an amazing time - I kinda sorta want to move there now (that's just a daydream too though). The food all sat really well with me, the people were wonderful, everything there is beautiful and picturesque, I walked around a ton which was really beneficial to my guts. It was an amazing time and I felt really well the whole time I was there. And, I only had like 2 minor bleeding hemorrhoid episodes since coming home from Japan, and I haven't bled in over 2 months now (knock on wood!) so possibly that debacle might be finally over with. I think I'm in remission although I'm having the odd bad tummy day here and there - for some reason my bad days all seem to fall on Thursdays lately. :p Oh well, at least that way I can plan for them! Other than that and the finger injury, I'm doing pretty well! I hope you're doing well too.
 
I started having strange abdominal pain/fullness/pressure back in April of this year after I contracted a nasty stomach bug and started getting increasingly worse. I went to my new GP in April and she ordered an abdominal ultrasound since my pain was mainly limited in my right upper quadrant. She asked about gallbladder disease in my family and then noted on my chart that my family has a history of cholecystitis and gallstones. She thought I needed to have gallbladder surgery, but the ultrasound showed no gallstones - just a fatty liver. She was concerned as fatty liver disease (the non-alcoholic kind; I cannot drink alcohol due to it messing with my BP) does not usually cause pain unless it's in the advanced stages. She referred me to a gastroenterologist for further evaluation and testing.

I met with my GI doc in May. I made sure all my lab results, chart notes, and ultrasound findings were forwarded to him for further analysis. He met with me, did some poking around, and concluded that my fatty liver was coincidental since I was asymptomatic (aside from the abdominal pain), my liver enzymes were normal, and my liver was not enlarged (he could not feel the borders). His orders were to have a HIDA scan done since he also thought gallbladder (some people have stones that are too small to see on US or they have a porcelain gallbladder) and he also wanted to do an upper GI endoscopy to check for stomach ulcers since I've had GERD since I was 16. He also prescribed Bentyl 10mg 3x a day.

The endo was done first at at a surgery center and he did a biopsy as my upper stomach showed mildly red tissue. H. pylori was negative, so the endo was ruled normal. The HIDA scan with hormone was next and it was also normal with a 50% ejection fraction. After learning both of these were normal, I was frustrated and crying as I was tired of feeling this way with no answers or diagnosis. My GI's nurse got me in to see him the very next day because she could tell I was stressed out.

My GI reviewed the results again and concluded it was not my gallbladder and we would check for bowel problems. He ordered a hydrogen breath test w/lactulose for SIBO and a colonoscopy to diagnose any colon disease. I had the HBT last week and it was negative, so I have to wait for the colonoscopy later this month (12 days). He upped the Bentyl at my last visit to 4x a day since I told him it was helping a little and he mentioned that it could just be IBS and said I should try Beano. I guess he should have read my chart where it says I was diagnosed with IBS in 2003 and the doctor then (a PCP at a doc-in-the-box) ordered me to use Phazyme and Metamucil. This is different than my IBS. I, however, used digestive enzymes and they are not helping at all. The GI doc wanted me to use Florastor, as well, but I'm putting that off until the tests are finished in case it gives a "false negative."
 
I met with my new EP/cardio again today to go over all the bloodwork she had drawn. The early Sjogrens panel is positive. Everything else normal. We are changing and adding meds because of that. I've been on midodrine for my low blood pressure, but now we're going to try adderall instead, since that helps some people better. I'm going to start Restasis for my eyes. Then I'm going to start Plaquenil once I know how the other meds are working.

She was a bit concerned about the tummy issues, especially as Plaquenil can cause further upset. So she wants me to wait and see how I'm doing- I filled th Rx, I just want to wait to start it, and she suggested I may not want to take it every day to start, etc.
 
I also had my doc appt today, which went really well. (This was just GP to discuss overall health and mood.) I had a smallish migraine after from not eating for blood test (a known trigger for me), and rough day because worried about a friend who had surgery and not doing well, but hopefully my mood will pick up with doing more exercise.
Wishing all well here.
 
Hi everyone,

I just wanted to thank you all for your support. I've found it comforting to be able to come on here and discuss things with people who know how awful it can be with GI related conditions and problems.

I've just spent a lovely evening and very early morning drinking movicol and I'm having a colonoscopy at 1.30pm today. Hoping it's all clear but at the same time hoping to find some explanation. A bit of a strange feeling really. You don't want there to be anything wrong but you know something is not right! My other half made me laugh last night. He said there had better be something wrong after going through all this. Think he was referring to me hogging the bathroom all evening.

Anyway, hoping everyone is well and I'll post an update when I know what my results are.

Thanks again

Andy
 
Izzie
Milk protein free supplements ( some complete nutrition)
Orgain vegan
Bright beginning soy drink
As complete nutrition - elemental formula
Neocate Jr ( ds drinks chocolate)
Elecare Jr
Eo28 splash ( juice box style from nutricia )

Your GI can give you a script to send through your durable medical equipment company to get it covered
Most have samples of the elecare or neocate to try
They taste foul btw
But Ds has managed to drink his orally most need a ng tube
 
Hey all—it's been a long while since I checked in. Hope everyone is doing ok and hanging in there. A lot has happened with my life, some good, some bad.

I just want to say, I can now see why it's so difficult to diagnose autoimmune diseases and such. In my case it took a few different doctors to test me for a few really obscure things (seemingly unrelated too), those coming back positive, and then connecting the dots. After hitting a wall with my GI dr and everyone else, I dragged myself to an infectious disease specialist as a last resort. I'm sure I mentioned somewhere that my illness really started when I was living in southeast Asia, though it didn't really affect me until much later, at which point I went through all the parasite/infection testing with my GP. That was several years ago, and my GI even repeated the parasite testing to be sure—all came back negative. Well, the infectious disease specialist initially took one look at my records and said, "yeah, you've probably got fibromyalgia and you're anorexic." (Yeah…not the first time I've heard that either.) But she ran some tests anyway.

Turns out I had the antibodies for a pretty deadly parasite—which means that I had contracted and fought it off at some point. She treated me for it ($11,000 medication!! thank God for insurance!) but admitted that it was highly unlikely I still had active parasites, as I'd be in the ICU or dead by now. So—finally I thought, something that might explain why my GI system was wrecked?! To which she brushed off and said, "nah, this wouldn't still be causing issues 2 years later—your gut should have healed by now." So she cut me loose and said to go see the rheumatologist (and also to see my regular doctor about anorexia again :facepalm:).

Finally got into my first appointment with the rheumy, did some tests, and nothing came back, except testing positive for HLA-B27 (a generic marker for several autoimmune diseases—can be ultimately harmless). She put me on a prednisone trial anyway, and based on my reaction (I'd taken it twice before) and the state of my joints, it was considered a positive arthropathy. So, her tentative Dx: reactive arthritis triggered by the GI infection and my genetic disposition for developing rheumatic conditions. Apparently, as it is almost identical to RA and in my case stems from GI infection, it can cause symptoms similar to Crohn's etc. So I'm being treated with an IBD medication (Sulfasalazine? she said it's used for ulcerative colitis). It's a little upsetting to know that I'll be stuck with an autoimmune disease because of an infection, and it's been rough tapering off the Pred, but I'm hopeful this could be a viable long-term solution—finally!! So I'm feeling at least a little more optimistic than before. So far no real side effects or benefits, struggling to keep my weight up as always, but she said I need to give the meds a long while to start working.

On that note— anyone had experience with reactive arthritis (ReA) or Sulfasalazine? I need to go in for labs this coming week to make sure I'm reacting well to the meds, and then I'll be allowed to up my dosage.
 
Adadzio sorry about the dx but glad they were able to connect the dots
Ds is also hla b27 positive and dx with juvenile spondyloarthritis (JSpA)
His is being treated with humira (also for his crohns ) and Mtx ( for the JSpA)
Sulfanazine is a very mild older drug for SpA ( reactive arthritis is part of the group )
The next level up would be Mtx for peripheral stuff and biologics for spine stuff
Tagging Maya142

Please check out the arthritis foundation and spondyloarthritis foundation

http://www.spondylitis.org

The best thing ds Rheumo recommended was swimming
In a warm water pool daily if you can
Volteran gel can be used with crohns since its topical and can be put on any joints
Ds uses it twice a day every day
Paraffin wax helps a lot as well

Exercise is key even if you feel really bad
Hugs
 
Hi Adadzio,
Both my girls and my husband have AS. Reactive arthritis is a kind of spondyloarthritis, so in the same family of diseases. They are all HLA B27+ too.

My husband has managed on NSAIDs for his entire life. He has pretty severe AS -- fused SI joints, many hip replacements, partially fused spine.

My girls are both on biologics and immunomodulators (Humira and MTX for the older one, and Cosentyx and Imuran for the younger one, who also has IBD). We have been able to prevent extensive fusion because of their medications, though they do have permanent damage in their hips and SI joints.

Can I ask which joints of yours are affected? Sulfasalazine may work for the peripheral joints -- joints other than your spine/SI joints (knees, ankles, elbows, heels etc.). But if your spine/SI joints are involved (called axial arthritis) then you really need a biologic.

I believe Reactive Arthritis is treated just like any other kind of Spondyloarthritis (SpA).

Physical therapy, swimming, heat and ice really help my girls with the joint pain. We also use Voltaren gel but my daughters are also on NSAIDs, even the younger one, because her AS is so much worse than her Crohn's (since usually NSAIDs aren't allowed with IBD).

It is important to treat SpA aggressively to prevent joint damage. If Sulfasalazine does not help you (it's a pretty mild drug), I'd look into biologics or at the very least, Methotrexate (incidentally, MTX will also not help for axial arthritis, but does work for peripheral arthritis).

Good luck! Let me know if you have questions!
 
Maya142 said:
Hi Adadzio,
Both my girls and my husband have AS. Reactive arthritis is a kind of spondyloarthritis, so in the same family of diseases. They are all HLA B27+ too.

My husband has managed on NSAIDs for his entire life. He has pretty severe AS -- fused SI joints, many hip replacements, partially fused spine.

My girls are both on biologics and immunomodulators (Humira and MTX for the older one, and Cosentyx and Imuran for the younger one, who also has IBD). We have been able to prevent extensive fusion because of their medications, though they do have permanent damage in their hips and SI joints.

Can I ask which joints of yours are affected? Sulfasalazine may work for the peripheral joints -- joints other than your spine/SI joints (knees, ankles, elbows, heels etc.). But if your spine/SI joints are involved (called axial arthritis) then you really need a biologic.

I believe Reactive Arthritis is treated just like any other kind of Spondyloarthritis (SpA).

Physical therapy, swimming, heat and ice really help my girls with the joint pain. We also use Voltaren gel but my daughters are also on NSAIDs, even the younger one, because her AS is so much worse than her Crohn's (since usually NSAIDs aren't allowed with IBD).

It is important to treat SpA aggressively to prevent joint damage. If Sulfasalazine does not help you (it's a pretty mild drug), I'd look into biologics or at the very least, Methotrexate (incidentally, MTX will also not help for axial arthritis, but does work for peripheral arthritis).

Good luck! Let me know if you have questions!
Click to expand...

Thanks so much!!! I'm so new to the world of SpA so this is all very helpful. I had a close friend with very severe AS, so that was really my only familiarity with this stuff.
Unfortunately I can't do NSAIDs because I have blood in my stool (with no clear cause or treatment). BUT the good news is they say my spine/SI joints look good so far—said there might be some inflammation there, but no fusion yet. My main issue at the moment is enthesitis, mainly the ligaments and muscles around my elbows, knuckles, and knees. So looks like I might be able to prevent permanent joint damage.

Do either of you know if these spondyloarthritis conditions can cause lack of appetite? That's still the thing that I really struggle with and can't find a solution for. Will these drugs maybe help me eat again? I'd really like to try some light exercise/maybe even physical therapy to get my muscles stronger again, but I worry about exerting myself while underweight.
 
What tests have you had? Have you had a colonoscopy? As I'm sure you know, IBD is associated with SpA.

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

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

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

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

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

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

Good luck!!
 
Hi everyone!

I caught some nasty stomach virus or food poisoning or something this weekend so I've spent the past few days in close proximity to my bathroom - which, by the way, has plumbing issues which is exactly what you want when you're dealing with stomach bug.

My regular pains and aches are way worse too. I'm hoping it passes, I've been feverish and haven't been able to keep much down but I'm still hoping it's just a bug.

Hope the rest of you are doing better than I am!
 

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