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Not much to add, just to say I totally get you guys with the isolation/depression. Never had issues with it before…but I'm feeling really, really down lately :( So exhausted and frustrated and kind of wish the world would just stop for a few days.

The worst part is, you have to hide it from your doctors, or else you get the whole "hmm, are you feeling depressed? maybe that's part of the problem"

Like…no. I'm depressed BECAUSE I'm sick!
 
Adadzio said:
Not much to add, just to say I totally get you guys with the isolation/depression. Never had issues with it before…but I'm feeling really, really down lately :( So exhausted and frustrated and kind of wish the world would just stop for a few days.



The worst part is, you have to hide it from your doctors, or else you get the whole "hmm, are you feeling depressed? maybe that's part of the problem"



Like…no. I'm depressed BECAUSE I'm sick!
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I can relate to that. My problem is I have a history of depression too so I can't hide that!

So I saw the specialist today and I am underwhelmed by the visit. He rapidly jumped to the conclusion I have PI-IBS and stuck with that. He has ordered gastroscopy and colonoscopy to make sure. I am over feeling unwell, struggling with D and fatigue.
 
I just have to add that I can relate to all the above, almost every comment made in the past day or two (except the infusion and grey skin but I can empathize) and appreciate the comments about what has helped. Thanks for being there y'all, but I'm sorry for the circumstances that brought you. Wishing for a magic cure for everything for all of us ...
 
Izzie - Thank you so much for your advice. I definitely do just need to take everything one day at a time. It's so hard not to think about the future, but I know it's what I have to do for my sanity.

Adadzio- Yes yes yes! Can't I just sleep for a few days straight and have some nice dreams and forget about my problems for a while?! I know I'm depressed because I'm sick, and it's not the other way around! If I was magically cured, I can't even describe how happy I'd be. Other people take their good health for granted, but I never would again!
 
I'm dealing with the worst joint pain today! This is something I've had my entire life - and no one's ever found a reason for it. But if I get too cold, or I'm sitting in a draft or even just wearing shorts or short sleeves in the slightest breeze - I get horrible pain. Feels almost like the pain is in my bones, exactly like the kind of pain I recognize as growth pains I had when I was little.

Now that I've actually found doctors who aren't terrible I'm going to bring the problem up again and hope that someone figures out what it is. It's a real pain, it can hurt so bad I get nauseated and feel faint. Usually heat helps, though. A really hot shower and wearing too-warm clothes - like really heavy fleece stuff to bed sometimes - will make it stop.

Still can't wear shorts though, not even in scorching summer heat if there's even the slightest breeze.

Do any of you ever find you have to lug around a bunch of stuff since you got sick? I feel like I'm constantly carrying around half a pharmacy, extra undies, warm socks and an extra warm sweater in case I get joint pains, "safe" snacks and lunches (since I can't ever eat out anymore), water to take pills with etc. etc. I need a backpack with a thousand little pockets so I can keep everything organized.
 
Izzie - I'm sorry to hear about your joint pain! That sounds really awful. I get tired/achy joints and muscles but definitely nothing to that extent. Not even being able to wear shorts......it's crazy the things our illnesses prevent us from doing.

I can't totally relate to having to haul all my supplies and necessities with me everywhere I go. I carry a GIANT purse around everywhere. I even keep it next to me at my house, otherwise I feel empty! You never know when you might need something, and let's face it, I'm always needing something from that dang bag!
 
I've been dubbed "the mom friend" because I always have pretty much anything on hand ^^

I have to quit my PPIs for a week starting Monday, prior to my 24 hr pH monitoring. Terrified, I feel awful if I accidentally miss ONE of those pills and now I'm supposed to go without for a week. I'm allowed to take Ranitidine and OTC reflux meds but that won't be close to enough. Planning to stay home from work and school pretty much all week, don't think I'll have much of a choice.

Also been dealing with annoying stomach stuff today. I rarely get the dreaded D but today... lucky me. Nausea, general fatigue and just feeling weak too. Blegh. And I'm starting to get what people mean when they talk about "brain fog". It's been hard to SPEAK today I'm just so groggy and weird. Can't string my thoughts together right.
 
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happy said:
Cat-a-Tonic,
I sure hope that you are still enjoying your trip to Japan and that you are nowhere near the earthquakes that are happening there.
(Has anyone heard from the last few days? if so perhaps you could share with us that she is ok.)
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I'm back! Japan was amazing. And I was far away from where the earthquakes hit - we stayed on the "big" island (Honshu), mainly in Tokyo and Kyoto, and the earthquakes hit the smaller southwest island, Kyushu. So we didn't even feel the earthquakes, we were very far away from that area of Japan.

The first couple days of our trip were very rough guts-wise. Before even heading to Chicago to go to the airport, I felt really nauseous and unwell. And I was passing blood again, too. I'm thinking it was from stress but not sure. I made it through the flight (13 hours and I couldn't manage to sleep on the plane) but the jet lag only made me feel even more unwell. Then the first couple days of the trip we had some issues with getting on the wrong trains and going to the wrong hotel, it was really stressful at first. After the first couple days, when I had acclimated to the time change and we had ironed out the hotel and train issues, then my guts got much better. The bleeding stopped and I felt quite well. Japanese food did really good things for my guts, for the rest of the trip my guts felt mostly great and no more bleeding and no d - my stools were formed and firm and I felt really well. :)

So we came home on Wednesday and my guts have been bad again ever since. I'm hoping that it's once again just a stress thing, from the long flight and the time change and all that (the jet lag was brutal, especially yesterday). I'm back to bleeding and I've been extremely crampy and having some d. I'm trying to eat easy, safe foods and I'm also trying to exercise as much as I can (we walked an average of about 8-10 miles per day in Japan and my body responded really well to that so I'm just trying to mirror what I did in Japan as much as I can in the hopes that my body will feel better). I'm doing somewhat better but still not feeling great and still passing a little bit of blood with each bathroom trip, even if I'm only using the bathroom to urinate I'll still leak a little bit of bright red blood from my anus each time. Fun.

I lost about 8 lbs on the trip, presumably from the large amount of walking that we did. My mom also lost about 8 lbs so it's not an IBD-related weight loss (she doesn't have IBD). In spite of the weight loss, I felt like I ate a ton of food on the trip - sushi most days, ice cream most days too, and some things like tempura and noodles. I wasn't exactly eating super healthy meals all the time and I honestly stuffed myself at the sushi conveyor belt restaurants that we went to (OMG so delicious). I'm not sure exactly what it was about the food that made me feel so well, or maybe it was a combo of the food and the walking? I definitely ate a lot of rice and I know that rice is probably my #1 safest food, so maybe that's what firmed up my stools and made me feel better.

Oh, and can we talk about the toilets in Japan? The western-style toilets are amazing. They all seem to have heated seats, heated bidets with multiple settings, and can play the sound of running water to block out any noises you might make while on the toilet. They are definitely amazing. But then, there are also the squat-style toilets. Those are just awful. Us women, we really don't have much ability to aim our urine streams, so as a result, there was pee all over the floor in the squat toilet stalls (I did have to use a few, sometimes you gotta go and squat toilets are the only option). So yeah, standing in strangers' pee puddles while you squat over a trough and try not to pee all over your own shoes, really not a fun time. Oh, and the toilet paper was highly disappointing too. They only seem to have 1-ply TP available in Japan. Probably the thinking is that the bidet does most of the work, so you don't need cushy TP to wipe. But it was really disappointing that the toilets are so great and the TP was so mediocre. Also, many public restrooms, especially in train stations, don't even provide soap. Seriously. There's a sink where you can rinse your hands, but you can't properly wash, and almost no bathrooms provided paper towels. So you rinse your hands off and then wipe your wet hands on your pants to dry them, very icky. I found a product called paper soap - it's literally little sheets of paper that you get wet and it foams and sort of turns into soap, and I just started carrying that with me everywhere because I refused to just rinse my hands without soap. It's so odd to me that the toilets there vary from amazing to disgusting with really no middle ground! At least here in the US you can reliably get soap and paper towels in public restrooms and you don't have to squat. Although I totally am getting a heated seat and a heated bidet for my toilet at home because those features were wonderful. :) I have a bidet attachment on my toilet but it's not heated. It's always been fine, but since I've been home it feels like such a cold bidet! I've become spoiled by (some of) the Japanese toilets.

Guts and toilet-related issues aside, the trip was amazing. The cherry blossoms were starting to bloom just as we arrived, and we were there for 3 weeks so we saw the cherry blossoms go from bloom to peak to falling off (my friend said it's called "flower snow" when the cherry blossom petals are all falling off). We went to the bamboo forest in Kyoto, we walked through all 10,000 torii gates at Fushimi Inari, and we explored all around Tokyo and bought vintage kimonos. Went to about a hundred different shrines and temples. Ate some amazing food (sushi yummm). Went to Mt. Fuji for a day - it was cold there! Went to Nara and saw the Nara deer. We even went to Tokyo Disneyland. :p It was a super fun trip - I was expecting that 3 weeks in Japan would be the trip of a lifetime, and it definitely was.

So yeah. I'm just sort of in recovery and catch-up mode now. Catching up at work and at home (I did 5 loads of laundry yesterday) and trying to get my guts to feel better. Going to do a lot more resting up over the weekend and hopefully will be doing better after that.
 
Izzie, I also carry a huge purse. My husband has a part-time job in a shop, it's a costume shop where they have some vintage items, and if an item doesn't sell then the owner will sometimes just get rid of it and hubby will rescue some of those items and bring them home to me. When I was in Japan, he brought home for me a cute little purse that he rescued from work. I love the cute little purse, but there's no way I can fit all my crap into it. I need to carry around at least a half-dozen pill bottles, butt cream, tums, wet wipes, pads in case the rectal bleeding is bad/leaking, and I carry a large bottle of water with me at all times too. Plus the normal purse things like my phone, kleenex, pens, hair ties, etc. I am resigned to the fact that I'll be stuck carrying a large purse forever. There's no such thing as packing light when you have a chronic illness, that's for sure.
 
That trip sounds amazing Cat! But I would never make it as I can't walk more than 1/4 mile without needing a wheelchair due to an old stroke, and squatting? I would fall in! Eeeek!
I do know that walking is good for the gut however. I hope you adjust quickly back to good ol' home.
 
That trip sounds like such a wonderful time Cat! I'm glad you were able to enjoy it without too many illness issues interfering.
 
Sounds like an amazing time Cat. Hope your guts settle now you are home too and you feel awesome from having a fantastic trip. Maybe I should try eating more Japanese [emoji13]
 
So tomorrow I'm stopping the meds for a week. I'm really nervous. I do get to take Ranitidine and Gaviscon until three days prior to my appointment though so hopefully that will help a little. I'm just scared that I'll get sick for a decent amount of time after, too. It took months of being on PPIs for everything to stabilize last time.

Though I think it's good to try being off meds like some of the symptoms I have now I didn't actually have before starting the meds? Like the excessive burping and everything got worse for a longish time after I was on PPIs so. It'll be interesting to see if any of the issues I have could be side effects of medication. It's not impossible I suppose.

But yes, I expect I'll be on here complaining a LOT this upcoming week, but I'll try to get through it.
 
Welcome back Cat - sounds like a great time!

Izzie, I'm so sorry you're so worried, and I think rightfully so. Good luck with the trial of being off meds.

I'm really really worried that my 'diff is back. I have a kit to send a stool sample in to the lab tomorrow. Could have done it yesterday but I was busy with a dance competition for my daughter (yes, the ickiness of being in public while ill and potentially contageous does make me feel awful, but she needs me there, so what am I to do??). I am not running a "true" fever at least, just bouncing around the high 99's most days.
 
Izzie - I'm so sorry that you have to stop your meds. I'll definitely be thinking about you this week. Let us know how it goes, and feel free to complain all you want! I know I would. By the way, you mentioned brain fog, and I totally understand! I was trying to do a homework assignment a few days ago, and I couldn't even comprehend the questions that I needed to answer. I'd read the same question over and over again, and not retain anything. I turned in that assignment already though, so I guess we'll see how it goes....

Cat - I'm glad you're back, and it sounds like you had a great trip! It sounds like all of us need to move to Japan in order to feel better! I'm totally good with that.
 
Akgirl, honestly, I wouldn't be against moving to Japan. Even Tokyo is more affordable than you'd think - we took a day trip bus tour to Mt. Fuji, and our tour guide was telling us about housing prices in Tokyo. She said it's about $1800 US for a month's rent for a 3-bedroom apartment in Tokyo (so if you share with 2 roommates, that's only $600 a month) and the average house price is about $500,000. That's relatively a lot cheaper than many large cities (it's certainly far cheaper than places like NYC - you can barely rent a shoebox-sized apartment for $1800 there). And you likely wouldn't need a car in Tokyo since there is such an extensive rail system.

I don't know if living in Japan is the answer for long-term IBD remission though - I was only there for 3 weeks! I do have an American friend who has lived in Japan for about 14 years, and he has had digestive issues in more recent years and for awhile at least he suspected it was Crohn's. But apparently doctors in Japan know very little about IBD - it's not common there at all so they rarely see/treat it. Because of this, when someone goes in to the hospital complaining of digestive issues, they tend to do something like remove the appendix and tell you you're fine now and send you on your merry way (that's what happened with my friend). So yeah, although the food did good things for me, apparently the doctors there just don't know how to deal with IBD.

And honestly, if I moved to Asia, I'd probably pick South Korea over Japan. Mainly because I can read Korean, but there's no way I'll ever be able to read Japanese! Written Japanese is so so complicated (there are 3 different types of written Japanese and you have to learn them all, including Kanji which has over 8,000 individual written characters), but written Korean is very easy (there's an alphabet). So yeah, language-wise, I know I'd do far better in Seoul than in Tokyo.

Izzie, I hope this week goes as smoothly as possible for you. You definitely have my sympathy! Although I know what you mean, I sometimes suspect that some of my symptoms are caused by my reflux meds as well. Hopefully this week will give you some enlightenment into that aspect of things. When is the test?

As for me, I'm doing better. It seems that it was (hopefully) just the stress of the jet lag on my body that was causing me to bleed. I haven't bled all weekend and I was able to do some exercise - I took a nice bike ride yesterday and that didn't make my rectal issues any worse, so that's very encouraging. I also took my dog on a couple of nice long walks both weekend days. So yeah, I'm doing okay. Hopefully that continues!
 
Haha an appendectomy might not be that effective for IBD :p

Cat - my test is next monday. I managed to negotiate my way down from 10 medication-free days to 7. I'm already starting to feel the burn and I've missed one dose. Also a really annoying reflux-related cough that I've had since I basically regurgitated half a meal. Pretty sure it was a minor aspiration situation -_- It's a test of will to feel like crap when you know there's medication that would make you feel better. Though like I said I am allowed to take Ranitidine and OTC antacids for a few more days at least.

Have you found a way to take Ranitidine that's more effective than others? I know you've mentioned taking it.

Honestly I've bought a bunch of Ensure and soup. The less volume of food I get in me the better with regards to reflux.

ETA: This is already awful. I don't know why I get so much air in my system when I'm off meds like I burp so much and get all air-bloated I don't understand why.
 
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Sorry for the double post but I need to complain.

I honestly don't think I can do this. I'm 3 Ranitidine and like a half ton of Gaviscon into this day and I'm in so much painnnn. I get this left side rib pain, it's the classic first symptom for me. Feels like a big rock is lodged in my ribcage. And I literally am belching every other breath. Not that much of the sore throat/heartburn variety however.

I know that I can do the test medicated but they don't expect to get much out of it if I do. Which I don't really understand, the nurse was like "it won't be very useful results" but I get reflux even when I'm medicated? I just think if I do this for a week I'll be sick for a LONG time after, it took so long to get it under control last time. On the other hand I don't want to fuck up a test if it's going to tell me if I'm at risk for Barett's and such.

Ugh. Blaaaargh this is the worst. But I can't be in this much pain for a WEEK I really just can't.
 
Yeah, I gave up :p When the pain is bad enough that I'm literally in tears on the FIRST full day without meds then there's no chance I'm making it a week.
 
Honestly, Izzie, I think your test will still be fine. I was on all my reflux meds during my pH impedance test and I still had a really enlightening result (48 separate episodes of reflux, with half of those episodes reaching the top of my throat, and the longest single episode lasted over 5 hours). With the severity of your symptoms, even on all your meds I'm sure you'll still get worthwhile results as well. If it's the first full day without meds and it's already this bad, then maybe wait for the day of the test to be a full day without meds. And if you even can't stand that, then take your meds on the day of the test too - it's still going to show severe GERD, I don't doubt that for one minute. Do what you can and take care of yourself too.
 
Oh, and as far as your ranitidine question - my two worst reflux times are when I'm lying down (sleeping) and when I'm exercising (any squeezing of my abdominal muscles gets my reflux going). So I take 300 mg ranitidine tablets twice per day - once before exercise, and once before bedtime. I also take 40 mg Nexium first thing in the morning. The Nexium is my main reflux med and the ranitidine is mainly for symptom prevention/reduction at the worst times.
 
Cat-a-Tonic said:
Honestly, Izzie, I think your test will still be fine. I was on all my reflux meds during my pH impedance test and I still had a really enlightening result (48 separate episodes of reflux, with half of those episodes reaching the top of my throat, and the longest single episode lasted over 5 hours). With the severity of your symptoms, even on all your meds I'm sure you'll still get worthwhile results as well. If it's the first full day without meds and it's already this bad, then maybe wait for the day of the test to be a full day without meds. And if you even can't stand that, then take your meds on the day of the test too - it's still going to show severe GERD, I don't doubt that for one minute. Do what you can and take care of yourself too.
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Thanks!

Yeah I honestly can't imagine that it'll be completely useless even if I am on meds. I can handle one horrible day or two but not SEVEN. I am a little concerned that I don't always feel the typical reflux burn, but rather get a lot of burping and rib pain instead. Hopefully those episodes will still show.

Apparently this is some sort of extra version of the test, it's also going to measure regurgitation somehow. So yeah, I can't imagine that it won't show anything.

I have a phone appointment for tomorrow morning and I'll tell them then what's going on. If they're genuinely concerned about Barett's honestly I'd rather have another scope and take biopsies than feel like I have today for a whole week.

At least I can say I gave it an honest try.
 
I rarely get the classic heartburn-type of burning pain either. I do get the rib pain though! And when my reflux is really active, it feels like there's a boiling cauldron of lava in my stomach - not really burning, but hot and bubbling and unsettled. And it also feels, without actual nausea, like I might vomit at any second. It's hard to describe, but yeah, mine usually doesn't really consist of the classic symptoms either. I don't get the burps as much as you've described, but I do get episodes of the burps sometimes, particularly when I'm working out. Drinking soda will also give me horrendous burps but I never drink soda anyway so that's not really an issue.

Anyway, yeah, I wasn't even having a bad reflux day on the day that I had my test and I still got that result so I'm sure you'll get a worthwhile result too. I'm not sure if it's the same everywhere, but at my hospital they give you a score from zero to 100. Zero means you don't have any reflux, you're fine. And 100 means you have the worst reflux ever. I scored a 95, and it wasn't even a bad day AND I was on all my meds! So I would think you'd have a similar if not higher score, if they do the same scoring system there.
 
It's strange to hope for a bad result, but I kind of am :p I might be able to go off meds for a day or two before hand, and maybe decrease my dosage to 20 mg a day for another few days, I'll discuss with them tomorrow what they want to do.

I guess I just feel like I failed and I get anxious that they'll "miss" something because I can't follow instruction and then I'll develop some horrifying disease haha. When my symptoms get really bad I always think "I have cancer, they've missed it and I have cancer" - anxiety is the icing on the cake that is illness :shifty:

And yeah the burping is absurd, for me. I used to not even be able to burp at all, like it happened a handful of times per YEAR. I counted today. 30 minutes - 300 times. THREE HUNDRED.

Do you have follow-up controls or anything? To check for Barret's or inflammation etc? Since you also seem to have problems still while on meds.
 
I see my GI every 3-4 months anyway so he always just asks how my reflux symptoms have been when I see him. And honestly, they've been not bad for a couple years now. Things sort of stabilized and I don't very often get the really bad symptoms anymore. My current mix of meds and avoiding certain food triggers seems to have calmed things down long-term for the most part. I do have scopes done about every 3ish years (I'm actually probably due for another upper endoscopy soon) just to keep an eye on things too. As of my last scope, everything looked great and there were no signs of Barrett's, so I'm not too worried.

300, holy cow! I'm going to the gym for a longer workout tomorrow evening so I'll try to count my burps then. I'm sure I won't be anywhere near 300 but I never have counted so it'll be interesting to see. Workouts are my burpiest time although I have had some belch-free workouts as well so it'll be interesting to count! I'll let you know what number I come up with!
 
I'll be curious to know ^^

I don't burp like this every day, but when I'm off meds or late taking meds or I've eaten something particularly triggery - it really is INSANE.
 
Izzie said:
I'll be curious to know ^^



I don't burp like this every day, but when I'm off meds or late taking meds or I've eaten something particularly triggery - it really is INSANE.
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Ah the burping! Returned today with a vengeance....I have stomach problems too and it has to be all related because the burping is there and also the gas further down and oh joy we are back to D. I was actually feeling not too bad for a bit over a week and then bam it hits. So I'm at work and spending quite a bit of time in the loo, guts are uncomfortable and I am so tired now I just want to go home but unlucky it's only 3pm and I work until 5 [emoji53]
 
akgirl said:
Izzie - Thank you, that does help. I think me focusing on being alone is giving me added anxiety. I've been sleeping/living in our guest room the past several days, because it's only a few steps away from the bathroom. So even when my husband has been home, I haven't seen him much. I just keep trying to remember that all my days won't be THIS bad, but I have to keep telling myself that, because I've been extra bad for a while now. And then I see other people living their normal, happy, carefree lives, and I get so jealous. Why can't my life be like that?! I know I shouldn't compare, but it's hard not to, especially when I've been having a really bad week.....well, month, really. Things have to get better eventually, right?!
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I'm totally feeling this right now...Alone. This is one of the only places I've found support from similarly experiencing individuals. Do you have a mantra or any coping mechanisms?
 
Ahhhhh came home to find a letter from the Health Service saying the wait is around 7 months for you scopes!!! [emoji31][emoji31][emoji31][emoji31] 7 months! This has been going on like 9 months now and I am so tired and just want answers.....7 months before I get them and potential treatment! I'm praying it really is PI-IBS and I will miraculously start getting better [emoji26]
 
Hi PrincessPaint, welcome to the forum. As far as coping mechanisms, I have a few. My main one is, I tend to buy myself little treats to cheer myself up. When I first got sick, any time I'd have to go to the doctor or have a test done, I'd buy myself a bottle of nail polish afterwards. It's inexpensive and pretty and sparkly and makes me happy. But of course, after not long I ended up with a ton of nail polish! :p So I've diversified my treat-buying somewhat since then, not so much nail polish these days but I'll buy myself other little trinkets and treats to cheer myself up on a bad day or after a doctor appointment. Maybe I'll get myself some new yarn or I'll buy myself flowers, things like that.

As far as coping methods to treat the illness while you're waiting for diagnosis? Exercise can help, but don't overdo it especially if you're actively flaring as that can just make you feel worse. But gentle exercise, like walking or gentle yoga, can help - I felt great when I was in Japan and walking 8 to 10 miles every day. A heating pad or hot water bottle is also your best friend - it really helps me especially on bad pain or cramping days. Hot baths can help too for both the abdominal pain and the joint pains, and some people swear by epsom salt in the bath for the joint pains (I've tried it and I didn't notice a difference either way). Get as much sleep as you can, and eat as well as you can - with IBD, your body is essentially both causing and fighting the inflammation, so it's kind of doing double duty which can cause massive energy drain, so you need all the rest and nutrients you can get. Stay hydrated, too - if you're having a lot of diarrhea then you're losing both fluids and electrolytes. Also, get your vitamin levels checked if you haven't already - certain deficiencies are really common in IBD (vitamin B12, D3, iron are the big ones to get checked) and if you're deficient in those then that can have a huge impact on how you feel too.

ShellK, oh my goodness, 7 months is a horrendously long wait! :( I'm so sorry to hear it. Is there any way you could get bumped up sooner? Is there a cancellation list that you can get on, so that if someone cancels their appointment then you could take that appointment? Or can you let them know that you're suffering and really need to be seen sooner? I'm not sure how things work there - here in the US, I was given a scope appointment that was 4 months away, and I called and cried on the phone and said that I was suffering and just couldn't wait that long. The nurse on the phone took pity on me and got me in the following week. Hopefully you can get a similarly sympathetic nurse to help get you in sooner! Hang in there and good luck.

How's everybody doing today? I've been back in the US for a week and I've basically already gained back the weight I lost while in Japan. I was having formed & solid stools, but then my period started and very suddenly everything turned to diarrhea. Ugh. I'm bloated and gassy too, maybe because I had some dairy yesterday. I need to make more of an effort to keep eating Japanese foods because those sat so well with my stomach, so for dinner tonight hubby and I are going out for ramen. I'm also going to try to start making more of my own sushi and in general to eat more fish and more seaweed. I have some noodles and seaweed packed for my lunch today. I need to eat more rice and less bread, too, I think. I had pretty much no bread but I had rice every day while in Japan, so I'm just going to try to mirror more of what I did in Japan in my home life and hope that my guts continue to do well with that.
 
I'm still trying to recover from my medication-free days. It's been really rainy and gloomy here today which is sometimes really nice, you get to stay in and be lazy guilt-free.

Meanwhile in the past month I've made a pretty big life decision and have decided to go back to school for a proper program instead of the random classes I've been taking here and there. My ADHD has really made school difficult for me but I'm being evaluated again and hopefully will have access to certain accomodations to make school a little easier.

So if I get in and everything goes according to plan, I'll be starting a program to become a speech-language pathologist in the fall. I'm already concerned about how I'll manage to do school full-time with how sick I get sometimes. It hasn't been a problem because I just haven't prioritized school, I haven't really cared about my grades and I've missed a LOT of stuff. But in a program like this, half-assing it really isn't an option. So I'm using a lot of my time right now trying to figure out a system to make everything run as smoothly as possible.

Oh and Cat - one of the only restaurant foods I can enjoy without worrying about my stomach acting up is Japanese food, so I can see why it would do good things for your guts :)
 
Good luck with the schooling, Izzie! Hopefully your health will be stable enough long-term that you can focus on your studies. If I had the time and money, I'd love to go back to school too. I'd really love to become a personal trainer and help out people specifically with chronic health issues work on their fitness while working around their health issues. If I could help people like us, that would be amazing. Fitness has been wonderful to me throughout my illness and I'd love to share that with others.

It's gloomy and raining here too, and pretty cold (in the 40s F) and windy, just plain icky outside. It's a good day to curl up with a blanket and watch movies. Maybe I'll have a mug of hot chocolate too, yum.

Oh! I went to the gym on my lunch hour today. And the belch count, I'm sorry to say, is one. I just had one big burp right at the end of my workout and that was it! I'm planning to go to the gym again on Friday, so I'll count again then.
 
Izzie has anyone tested you for SIBO, not that the tests are accurate, I know here in Madison none of our GI clinics can accurately diagnose, nor have I met a NP that can either, they cookie cut all these MD's and NP, but the MD's will talk you out of healthy organs where NP are not allowed to. I'm up to 145 lbs. been as low as 122 so I'm going to go on the elemental diet for 15 days and see if I get any improvement. Elemental is liquid and the food pretty much digests in stomach or beginning of small intestine the theory is to starve out the bacteria that feast on Polysaccharides, sugars, carbs, starches, etc. Maybe I'll do the fast tract diet but I'd prefer to see some kind of result through strict measures. Ever get the feeling your feeding something inside of you? I struggle with a similar symptom as you do, so I just know that when I eat may as well get up and go walk or run it off, as much of it as I can get out the better. I was way worse off only 1.5 years ago, don't get me wrong I still get horrible, horrible pain flares, I just don't cry every day all the time and I'm able to sleep through the night.
 
everythin - I don't believe I've been tested for SIBO, no. I know very little about it, really, so I can't say whether I think I have symptoms of it or not. However I do know that I improve very much on PPIs, and I'm not sure that would be the case if I had SIBO?

I do think that the majority of my symptoms are due to GERD, but I've yet to be diagnosed so I can't say for sure.
 
GERD is just a made up thing, for upper digestive tract inflammation. Inflammation of the intestinal tract wherever it may be is still just inflammation. Something for you to know about anyways.. http://digestivehealthinstitute.org/
Their is another site http://www.siboinfo.com/ and Allison is pretty much the expert on it.
Here is an overview of SIBO, complex hey?, well yes the gut and dysbiosis is very complex. http://www.holistichelp.net/blog/si...ide-to-small-intestinal-bacterial-overgrowth/

In fact SIBO is so complex it is quite difficult to know exactly how/what to eat to ease symptoms. I know SIBO is one of the more difficult intestinal issues to get rid of, SIBO and candida can run together, and some book writers/healers say crohns is a fungal thing, but if you ask your doctor about fungal stuff they will likely turn on you, some say fungal is the roots of cancer (huge industry!), google mycotoxins, it's well known. We have about 80 different fungus that live just on our skin, check out http://www.drkarafitzgerald.com/ she seems to be up on the skin microbiome, don't believe .. google dermnetnz

Good luck with a diagnosis. For me at least .. my diagnosis is you'll have to wait for it to get worse. Also, they'd rather I be dead so they can harvest my organs, that was the most important thing to our local teaching hospital as far as I was concerned. All I had to say is I'm in so much pain I want to be dead and out came the paperwork.

So mostly I just go sit in the ER once a month to make sure my symptoms are documented somewhere in the medical record system, they all seem to be ok with that.

For the most part if you want to be diagnosed correctly these days (or you really want to heal), you need to go to a functional medicine doctor, the U.S. health care system is pretty much an old boys club they really only know how to prescribe and cut, they have a monopoly on quackery which is why they are ranked 38th by the world health organization, at least I believe people think the U.S. health care system is so great because nobody can afford it as it is also the most expensive in the world. Also .. haha, all the U.S. health care remedies are about managing symptoms, it's pretty rare that they'll say oh this pill will heal you, fix you right up, actually never will they say that.

But yeah if your like me and you fast/eat nothing all day except water yet produce plenty of gas and bloating you have to wonder after awhile, where does all the gas come from?, well bacteria and fermentation produce gas just great.

Won't be posting in this bucket again, the body is very complex. I struggle allot too, we all do, good luck.
 
A couple of weeks ago my legs and lungs filled with fluid. I was put on 1 litre a day fluid restriction and double diuretics. I was initially dxed with congestive heart failure. had a heart ultra sound ,some signs of atrial fibrillation and valve stenosis but nothing conclusive. My neph is handling things . He read the reportand said there is nothing there to cause my symptoms and my proteinurea is well controlled with cyclosporine. To confirm / discount atrial fib he sent me for an ecg. No atrial fib but heaps of ectopics and the tset showed scar tissue on the bottom of my heart from a possible heart attack. Neph just said that is garbage. At that point I said well I do know that my liver no longer fits in its allotted space. He checked my liver function tests . two months ago a bunch of my liver functions rose into the red and my last test they all doubled. I have a liver ultrasound next week . He hopes that it is auto immune hepatitis but I can read him pretty well and I think the intent of the ultrasound is to look for cancer. As a long term colon cancer survivor liver cancer is an ever present threat. I never thought I would hope I had hepatitis. Ron.
 
ARG!!! So I just got an email from the lab that my Cdiff test was logged into the system (no call from GI yet) and hopped on to check it - NEGATIVE, HOORAY!....oh, wait....they ran an immuno assay.....

For those who have never had c diff, there are several tests they can run for this annoying bacteria. EIA, or an immuno assay, is the WORST as far as false negatives, like, up to 30+% false negative. I am SO PISSED OFF!! How on earth am I to know, now??

I am assuming this is why GI hasn't called me yet. I have no idea what I'll say when they do call.

At this point I feel like I may as well just hang out at home until I run a fever, then head back to the ED, where at least they use the PCR (current fastest/reliable test).

I had an upset stomach before. Now I feel worse.
 
Wow, there is so much I learn from this thread. I'm afraid I'm on overload at present.
Just a humorous side note, you know you spend too much time in the bathroom when you can hear your dog snoring outside the bathroom door waiting for you to come out. :rof:
 
Izzie I hope the med free day hasn't had too much of a lasting effect on your stomach! When is it you have the test?

Cat the Japan trip sounds incredible! I'm so glad your guts were relatively behaved for you!

Also, I have a hemmie question and I figured you're probably the best person to ask haha! Have you ever had a hemmie well so much it causes trouble going? Like, I'm not sure whether things are just behaving a bit more for me or whether it's the hemmie but I'm on and off finding it hard to go. It definitely feels like I have to but last night even straining a bit wasn't working (I know I shouldn't and it will make the hemmie worse!) and I couldn't get rid of the feeling that I needed to go. I'm not sure whether it's the hemmie making me feel like that or whether its so swollen it's stopping things moving or what, but it's really causing me problems and making my fissure worse too :(

I've recently come out of a particularly bad flare and have had a couple of good weeks and yet again I've had sore joints and feeling warm and now I have the nasty tasting mucus type thing in the back of my nose/throat and increasing amounts of the stinging/burning pain and nausea and I just have this horrible feeling I'm about to head back in to another flare :( I hate this cycle so much! I just wish I had a diagnosis already so I could get some kind of treatment. My fingers actually swelled a little this time with the joint pain so I will mention that to the GI next time I see her. My mum of course is convinced I have lupus still, because she was my age when her gastro symptoms started and the odd joint pain, but I'm still not convinced.

Anyone else try not to get their hopes up about appointments? I've got my next GI appointment date through so I will get the results of my duodenal biopsy then and my SIBO test (the test is in a couple of weeks) and I don't know whether its a self protection mechanism or what but I'm feeling so negative about it, like I'm just going to get told everything looks normal so it must be IBS and off I go to the dietician.
 
Sandy - One of my cats loves to lay on my lap and take a nap when I'm on the toilet, so I definitely understand!! At least I have some company? :)

Sarah - I totally understand how you feel. I don't get my hopes up anymore for anything, but especially not doctors and tests. Yesterday my dad was saying that maybe I'll be better by the end of July when I have family coming to visit. That just made me mad, because I know I won't be. I told him I'd bet him a million dollars that I'll still be sick. I try to remain as optimistic as possible when seeing a new doctor or getting a new test done or trying something new, but it always turns out the same. I'm just so tired of my sickness controlling my life. I can't do anything I want to do anymore. So anyway, I understand!
 
Sarah, I'll bet that most of us here try not to get hopes up about doctors, which fits right along with what akgirl said, it gets very discouraging and hopeless feeling when trying to think of how future will be. I'm so tired of it all also. Hugs to everyone. :ghug:
 
Sarah - my test is Monday. And annoyingly enough I've had a rare couple of good days, so I'm trying to go PPI free tomorrow so Monday will show a more realistic day.

I tend to not get a lot of symptoms when I work. I'm on my feet all day and pretty much eat on my feet too and I think it helps.

We'll see. I'm very nervous that I'll be anxious or gag too much and I for some reason won't be able to go through with it. But I'll do my best!
 
Blah I'm so nervous. I'm getting soooo anxious. Mostly because the manometry part of the test that I'm doing at the hospital seems like it'll remind me of a gastroscopy and that was just the freaking worst and I never could've done anything like that if I wasn't sedated.

I'm probably just building it up in my head. But I will not sleep tonight that's for sure :p
 
So I'm back from the manometry! pH catheter in place. This sucks! It's both worse than I thought and more managable than I thought.

Also it was diagnostically invaluable. I have a sliding hiatus hernia. 2 inches. And my esophageal motility is SHIT. The lower half of my esophagus is not doing much of anything, when I swallow. So the short bit of information she was able to give me is that while I am probably a candidate for surgery, I could never have a full fundoplication/wrap, because if I did I wouldn't be able to get food down. So my lower esophageal sphincter will always have to be a lil open.

I don't know, I'm bummed because it's worse than I thought, but also this is the first test I've had that is actually showing that something is wrong, and quite wrong at that. It's not some minor problem I'm whining about.

So... yeah. Trying to stay distracted for the next 24 hours. It's very hard to eat, things get stuck even more than usual. And I'm kind of lowkey gagging here and there. But I'll manage.
 
Sarah, yes and no. I've had hemorrhoids that hurt so much that I wasn't able to pass stool because it was just too painful, but no, I haven't had a hemorrhoid that physically blocked the path of the stool from coming out. It sounds like that's what you have going on? Is your GI appointment very soon? You should definitely mention this to the doctor and have them take a look (they can do what's called an anuscope, where they just look into the anus and rectum to see what's going on - no prep and no sedation required, it's just a quick short scope that they can do right there in the clinic).

Sometimes a hemmie can feel like a piece of stool, I've had that sensation. You mentioned straining and that's common, you strain to get out what feels like stool, but it's really a hemmie. So my advice is, don't strain, because you might just make things worse. Drink a lot of water to stay hydrated and to try to pass any actual stool, but don't strain as you may be feeling the hemmie.
 
Izzie, wow, well at least now you have a reason for why your GERD is so horrible! Congrats and condolences on having that answer and I hope the test provides more enlightenment too. Hang in there, hopefully the 24 hours goes by quickly and uneventfully. I have heard similar things about the surgery, that a full fundoplication tends to make things worse if you have abnormal esophageal motility. It's definitely something to do some research into, as I don't know if the other procedures (like the metal bracelet thing you talked about awhile ago) would similarly make things worse or not. Hopefully there's something that the doctors can do to help you, though. Keep me posted on what the full test results say when you get them back! Maybe you can beat my "high score" of 48 separate reflux episodes. :p
 
Cat-a-Tonic said:
Izzie, wow, well at least now you have a reason for why your GERD is so horrible! Congrats and condolences on having that answer and I hope the test provides more enlightenment too. Hang in there, hopefully the 24 hours goes by quickly and uneventfully. I have heard similar things about the surgery, that a full fundoplication tends to make things worse if you have abnormal esophageal motility. It's definitely something to do some research into, as I don't know if the other procedures (like the metal bracelet thing you talked about awhile ago) would similarly make things worse or not. Hopefully there's something that the doctors can do to help you, though. Keep me posted on what the full test results say when you get them back! Maybe you can beat my "high score" of 48 separate reflux episodes. :p
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I'm pretty sure that the size of the hernia makes it so that that surgery isn't an option anymore. I was hoping it would be, but apparently not.

I find it strange that they supposedly didn't find anything on my barium swallow, but I don't know. I'm at a new hospital now and they're far more professional.

I'm bummed, but glad to have answers. She claimed that motility issues are often due to a neurological cause which freaked me out but she assured me that it doesn't have to be anything dangerous, so we'll see what further tests say. I was a preemie so I might've had motility issues all my life, I didn't feed well as a baby either so it's not impossible.

A lot of new questions, but I'm so so glad I managed to get through it. I pulled the manometry sensor out the first try. Puked and stuff. It was like a... minature nasal gastroscopy. :p The first 30 seconds were hell but once it was in it was doable. And I have a huge phobia when it comes to gagging/puking etc. so if I can get through it anyone can.
 
What my GI had told me specifically is that if you have abnormal esophageal motility, then fundoplication surgery will just make things worse, not better. I didn't bother looking into it myself because I wasn't wanting surgery at that time anyway, so I don't know the specifics of why that is, but that's what I was told. So definitely do some reading up on that before you commit to having any surgery - it'd be horrible if it just made things even worse for you!

I didn't know that about motility issues being frequently related with neurological causes. That is indeed scary-sounding! Although, if they can figure out the cause, then hopefully there's some sort of treatment for it?
 
Cat-a-Tonic said:
What my GI had told me specifically is that if you have abnormal esophageal motility, then fundoplication surgery will just make things worse, not better. I didn't bother looking into it myself because I wasn't wanting surgery at that time anyway, so I don't know the specifics of why that is, but that's what I was told. So definitely do some reading up on that before you commit to having any surgery - it'd be horrible if it just made things even worse for you!

I didn't know that about motility issues being frequently related with neurological causes. That is indeed scary-sounding! Although, if they can figure out the cause, then hopefully there's some sort of treatment for it?
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It does sound scary but she said I could've just had it my whole life. I was a premature baby and it's possible that I've just always been like this only I never noticed until the hernia. Like the swallowing reflex or nerve connections just never developed quite right or something. Don't quote me on this, I was still pretty upset and frazzled when she told me :lol2:

I'm not too keen on surgery yet either now with things being as they are. I'd rather experiment some more with different meds etc. But yeah right now I'm still going to have more tests and figure out exactly what's going on.

At least someone finally sees that something is wrong.
 
Ultrasound of my liver tomorrow also get the results of a growth removed from my cheek last week. Hopefully I won't get any bad news from either. trouble is that If I get no answers my problems are highly likely the same unknown auto immune disease causing the nephrotic syndrome in my kidneys and The skin cancers are as a result of cyclosporine suppressing my immune system. Ron.
 
I'm pretty sure the moment I got that sensor/probe thing out was the best moment of my entire life. It was dreadful, to be honest, and my entire chest and throat is sore still. Of course now that I don't have anything occupying my attention anymore, I'm obsessing over my test results and worrying that I have esophagus cancer or something. It's SO HARD to balance this with my anxiety issues, sometimes. I have no reference point for this though so I'm not sure how concerned I should be. I don't know if abnormal motility is really bad, or if it's no big deal, so I don't really know how to react to it :p

In any case, I'll be getting my complete results from my GI next week. Though she speaks really dreadful Swedish so I'm concerned I'll miss something or not get proper answers.

The technician did say that if I had acid reflux (as opposed to non-acidic reflux) even though I'm still medicated, that'd require "a more drastic approach". And my pH monitor device showed the current pH and I noticed that when I had symptoms it dropped down to 2-3, so I already know it'll show acid reflux to some extent. Not sure what a more drastic approach entails, entirely, but I guess I'll find out...

ron50 - Keeping my fingers crossed for you!
 
So so tired [emoji22][emoji22][emoji22]
Contemplating if I should try and find the cash to have the endoscopy/colonoscopy privately given the wait is going to be apparently more than 7 months in the public system.....thoughts?
 
Lucked out ok with my cheek it was a highly pigmented nodular basal cell carcinoma. Excised in its entirety. The liver ultrasound was long and painful . My liver is swollen and tender and the pressure hurt. One question was repeated three times. Are you absolutely sure your gallbladder was removed. I got the impression something has filled the space where it was. The other thing that worries me is that my neph requested a us of my liver only. The tech went on to check my pancreas and my kidneys and I am not sure why. As I left radiology I saw him ringing someone with my report in his hand. I will have a nervous wait till next Wednesday. Ron.
 
Whine! I was woken up at 3am needing to go. That hasn't happened in awhile. Worse, I don't really want to just stay home today, as I have an ultrasound scheduled for my neck that I'd rather not miss/reschedule -- a year ago when my thyroid first started acting up, they found a small nodule on the right side of my thyroid, and lately the glands on that side of my neck have been enlarged. So, yeah, I need that looked at. But I'll keep an eye for a rising temp/fever and just see how the morning goes. It's a quarter to 7 now, and my appointments at 10, but I need to leave around 9 to get there in plenty of time, so I don't have too long to decide.
 
I feel for all of you. Ron, waiting for test results can be an ordeal, I'm hoping for the best for you!

I'm waiting on my pH monitoring results. Not quite as stressful, I think, but I'm still a little anxious to know what they found.

Has anyone who've had a pH monitoring experienced chest pain/soreness afterward? It hurts to cough, burp and eat currently, and I can't get ahold of anyone at the GI's office until monday. It seems a silly thing to have to go to the ER for, especially if it's a common thing to experience...
 
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Izzie, I don't recall chest pain nor soreness after my pH test. I only recall having some sinus and nostril soreness (but I think that was only because the nurse had tried to jam the NG tube in). If the soreness is still there today, I'd say call your doctor and let them know. Better safe than sorry. Hopefully it's just irritation from having the NG tube in for 24 hours. When do you get your results?


Wildmtn, that's good news about your neck! What's the c diff situation, is it still hanging around? I hope you can kick that stupid infection for good!

How's everybody else today? I'm okay. Not bad, just okay. I've been back on the steroid suppositories for awhile now and it's to the point that the steroids are making me HUNGRY constantly. And a bit irritable, too. I want to stop taking them, but of course when I do that then the bleeding just comes back and/or gets worse. I see my GI on Monday but I think he's out of ideas for me so I don't know that he's going to be able to help one way or the other. I'm still waiting on an appointment with a new colorectal surgeon (I'm not going back to the first one I saw, she was so dismissive of me) so at least I can ask for a rush on that referral when I see my GI. And heck, I am probably due for a new set of scopes (it's been about 3 years since my last colonoscopy & upper endoscopy although I did have a flexi sig last year). So maybe I'll ask about that too although I'm in no rush to have more scopes. We know what's causing my bleeding, it's always hemorrhoids, we just can't seem to stop the hemorrhoids. It seems like such a stupid problem to have, I feel dumb about whining about it, but it's been a literal pain in my ass for over a year now and I just want the constant, chronic hemmies to go away already. Ugh.
 
It went away overnight thankfully, yesterday I was having pretty significant pain. I think I might've been tensing a lot while I had the tube in. I did actually have quite a bit of pain while it was in too, which I hadn't heard of from anyone else. She did put the manometry tube all the way down to my stomach though and I was puking and gagging and was just a tense mess during the manometry in general so it could've just been from that too.

I was also inexplicably dizzy when I had the tube in and for a full day after? I don't know if some nerve got irritated or something, it felt kind of like vertigo. It seems to have gone away with the pain, though.

I should get the results by the end of next week, though the nurse told me that she'd call immediately if she found something very concerning. Considering she hasn't, I suppose I'm not waiting on completely catastrophic news :p

I understand not being in any rush to have more scopes. My GI mentioned wanting to do another upper scope my last visit and I am not feeling up for it. On the other hand it turns out my last GI just... kind of did everything wrong so it would be reassuring to have one at a proper hospital where not everything is a mess. Honestly though I'd rather do a scope than another pH monitoring/manometry. It was the actual worst, for me, I think most people probably don't think it's that big of a deal but it was the worst thing I've done medically probably in my life to be honest :p At least for scopes you get to be a little knocked out.
 
It's not even the prep or the annoyingness of the procedures. I'm mainly not up for having scopes for 2 main reasons, money and time. I used up most of my vacation time at work when I went to Japan, so I have very few vacation days left and I always end up needing to take 3 days off for scopes (one for prep, one for scope day, and one to recover afterwards as I always seem to be in some pain after scopes). So that's a big chunk of vacation time to use that I just can't spare right now. Plus, my hubby is actually working a lot right now so we're doing okay money-wise and have been paying off some bills. I paid off one doctor bill and I'll soon be paying off another - I don't really want to accumulate more doctor bills so soon after paying some of them off! (Even with insurance, it is so expensive to be chronically ill in this country.)

So yeah, if the scopes didn't add to my doctor bills and if I had more vacation time to use, I'd be more keen on doing scopes as it has been awhile. But it's just not good timing right now. I suppose logically it would make more sense to have scopes when we have some actual money, but I'd rather pay off some other debts first before piling up more debt. And my vacation days double as sick days, so I feel like I need to hoard what few days I have left in case I need to call in sick.

Oh, but the good news is, if I do have scopes done soon - I get to have full anesthesia and be completely knocked out. At my flexi sig last year, the sedation failed and I was awake & talking the whole time, so my GI said that I can have propofol (the Michael Jackson anesthesia drug) at any and all future scopes from now on. I'm honestly not sure if that's for his benefit or mine - I don't remember much from my flexi sig and there was no pain, no discomfort. I do recall trying to see what was happening on the monitor, but I wasn't wearing my glasses and everything was just a blur, so I sort of drunkenly and loudly kept complaining, "I can't seeeeeeee!" :p I'm pretty sure I annoyed my GI a lot by doing that (to be fair, the sedation didn't knock me out but it did make me super loopy and I didn't have much self-control and it kind of was like being really drunk). So I'm not sure if my GI said that I get anesthesia so that I can be knocked out and completely comfortable, or if it's so that I don't talk the whole time and annoy him during the entire procedure. :p Hah.

Izzie, the dizziness you described - I had horrendous vertigo about 2 years ago which was related to inflammation in my inner ear (labyrinthitis). The vertigo was terrible and lasted for 3 months. Ever since then I've been super sensitive about my ears, and I've noticed that when my sinuses are acting up (allergies or a cold), that my ears will be affected too and I'll be a bit dizzy for a few days. So, maybe having the NG tube going through your sinuses, maybe that slightly inflamed or irritated your sinuses and therefore affected your ears as well, and that's what caused the dizziness? That's all I can think of. I had my pH test before my vertigo issues came along, so I never noticed any dizziness with my NG tube, but that's what I would suspect happened with you. It's good that it went away now, hopefully it stays away for good. I always slightly panic when I get dizzy, because when I had labyrinthitis it was the most sick I've ever been (I could not keep down any food nor get myself to the bathroom, I couldn't move my head without vomiting, I couldn't focus my eyes on anything and my eyes were moving on their own, it was seriously horrible). And then I found out that labyrinthitis can be recurrent and can run in families, and I further found out that at least 2 relatives on my dad's side have/had recurrent labyrinthitis, so yeah. I don't want it to ever happen again and it terrifies me to think that it might!
 
Haha I was so annoying during my colonoscopy, I was cracking jokes and talking non stop and looking at the monitor being all "WHOAH!"

And then in recovery too I was soooo TMI.
 
Is that normal there to be awake & talking, do you guys just get light sedation during scopes? Because here in the US, we get pretty heavy duty sedation to the point where it sure feels (usually) like I'm completely knocked out. I've had 5 scopes total, 2 upper and 2 colonoscopies and the one flexi sig, all at separate times so I've had sedation 5 separate times. I felt completely knocked out the first 3 times. The 4th time, I very briefly woke - only for a few seconds, I didn't even open my eyes, I just woke long enough to mentally register that I was awake and that there was something uncomfortable in my butt, then I zonked right back out. :p It wasn't until the most recent scope that I was awake & talking the whole time and that's not supposed to happen with the meds we get here for sedation (usually a combo of Versed and Fentanyl, sometimes with Benadryl added in too). But hey, if I had to be awake for a scope, I am very glad it was a butt scope and not an upper endoscopy! I think I would just majorly panic if I was awake while a camera was being shoved down my throat, even if I was loopy from the sedation.

Apparently saying TMI or highly personal things in recovery is not uncommon. When my hubby had to have his kidney stones blasted out with a laser a few years back, the nurse mentioned to me that when she first brought hubby to the recovery area after his procedure, he had said some majorly personal and/or TMI things (she wouldn't be specific at all and hubby doesn't remember what he said because he was still under the affects of the anesthesia at the time that he said them). So neither of us knows what he said, but apparently it was somewhat shocking to the poor nurse. :p
 
For my gastroscopies I've been very gone, I hardly remember anything, I just know it's unpleasant.

For the colonoscopy I was 100% aware, I don't recall what exactly they gave me but it was more painkiller than sedation. I remember all of it, felt it, could hold full conversations etc.
 
That sounds horrible! Even though I was awake and talking during my last scope, the sedation still affected me enough that I don't remember much and didn't feel a thing. Being coherent enough to remember the entire thing and hold conversations - that sounds just awful. I definitely was nowhere near coherent at my last scope and was not able to hold a conversation, and I only recall that one snippet of not being able to clearly see the monitor. It almost felt like a dream, really - somewhere in between being very drunk and dreaming, I guess. And I felt nothing, so apparently my lower half was not capable of conversing with my brain at that moment. :p If I were you, I'd ask for better sedation at my next scope. That sounds really not fun.
 
Honestly I didn't mind so much. What makes scopes bad for me is my enormous fear of gagging/choking/having things in my mouth/throat. So when they go in the other end I'm just like whateverrrr haha. I remember it being vaguely painful in a couple places but overall... meh. I was very happy actually, which was probably the drugs, but still perfectly coherent and I do remember everything.

Though now in retrospect there are a couple things that happened that I think maybe could be hallucinations? I recall a conversation between the tech and some doctor who just walked in where he was asking if his son in med school could observe my upper scope later in the day? And it just seemed like a VERY strange conversation to have over my exposed behind, but who knows, it seemed very normal otherwise. :p
 
Honestly, I have a friend who is a CNA (certified nursing assistant) in a hospital, and he's got so many stories of seeing naked people and bodily fluids and so on, so to me that sounds like a fairly normal conversation for a doctor to have. :p My friend the CNA told me that he doesn't even like nudity anymore, he said he really enjoys it when his girlfriend is fully clothed and he finds that to be way more sexy now than nudity because he's just seen wayyyy too many naked bodies in his line of work. :p I think medical personnel get so used to nudity that it becomes completely ordinary to them, so yeah, I think them having that conversation next to your naked backside was probably real and to them very normal!
 
Noooo. :p Not even close, ha ha. It's sort of disturbing being friends with people who work in the medical field, I learn all sorts of insider information that I didn't necessarily want to know. Like, I think I may have mentioned this awhile ago, but I know a couple of radiology techs also. And they told me that they learned in radiology tech school that sometimes, the last images on pill cam are of the patient's face looking down in the toilet to see if they passed the capsule. :p And I'm pretty sure I'm one of those faces, eek! It's slightly horrifying to know that on a computer hard drive somewhere is probably a picture of my face looking down into my toilet. Let's just hope that one never ends up on facebook! Hah!
 
Cat-a-Tonic said:
Noooo. :p Not even close, ha ha. It's sort of disturbing being friends with people who work in the medical field, I learn all sorts of insider information that I didn't necessarily want to know. Like, I think I may have mentioned this awhile ago, but I know a couple of radiology techs also. And they told me that they learned in radiology tech school that sometimes, the last images on pill cam are of the patient's face looking down in the toilet to see if they passed the capsule. :p And I'm pretty sure I'm one of those faces, eek! It's slightly horrifying to know that on a computer hard drive somewhere is probably a picture of my face looking down into my toilet. Let's just hope that one never ends up on facebook! Hah!
Click to expand...

Haha that is HILARIOUS! They must have such a laugh about that.

I'm up at 4 am currently because my heartburn is so bad I can't sleep :/ Running out of Gaviscon and it's barely helping anyway...
 
Okay, now I feel like I have to share my scope stories! So my first scope was an upper endoscopy, and I remember waking up during it and gagging. I also remember someone telling me that they were almost done.....so I'm not sure if I woke up as they were pulling it out or what. When my husband came to see me right afterward, I was completely awake, and he said I looked terrified. He said he'll never forget the look on my face. It was horrible!

My colonoscopy on the other hand......
So I went to a different doctor for this (obviously I wasn't going to let that lady scope me again, and she sucked anyway). I told this doctor that my upper was horrible because I woke up during it, and he said he'd make sure I was comfortable. In other words, I got lots of drugs. I don't remember anything, except a tiny bit of the car ride home. But apparently I kept showing my dad my boobs!! (In my defense, the next day I found one of those heart sticker things under my boob, so I'm thinking I was trying to get that....?!) I also asked my dad if he could hear me farting. And I also texted people on the way home, and my texts were hilarious. I can remember trying to text, but my fingers just couldn't find the right letters. But even though I did crazy things (and who knows what else I did/said that no one told me about....), I MUCH rather preferred getting lots of drugs!
 
Akgirl, I make sure to not even bring my phone with me on scope day because I'm afraid of doing something similar! And by the time I get home from the scope, I'm at least semi-coherent and capable of writing sensical texts.

I think I've mentioned this one before as well, but another scope sedation story - at my first upper endoscopy, the sedation was super strong for some reason. Not sure if they gave me a higher dose or what. They also discharged me a bit too quickly in my opinion. I have vague snippets of recollection of struggling to get my shoes on, and of being driven home, but even the car ride home I am missing a lot of that memory so the sedation was obviously still affecting me a lot. Anyway, we got home and I sobered up or whatever the term would be with regards to sedation. And I complained to my husband that my GI didn't even come talk to me after the procedure. Hubby looked at me funny and told me that I had an entire, like 10 minute conversation with my GI and that I seemed coherent at the time. I literally have zero recollection of that! It's slightly terrifying to know that I had an entire conversation that I do not remember. At least it's good that I seemed coherent, but I have no idea what my GI said or what I said for that entire 10 minute chunk of time. Scary!

Izzie, I'm presuming you've already tried sleeping sitting up? My reflux is most active at two times - when I'm exercising and when I'm lying down. Sometimes at night if it's bad, I just prop myself up with a zillion pillows and attempt to sleep sitting up. I have a really hard time sleeping sitting up though so usually, like you, I just end up staying awake at least until things calm down somewhat. Hopefully you're doing better today!
 
I'm the same way, cannot for the life of me sleep sitting up or propped up at all. If I do, I end up in a really weird position once I've fallen asleep that just makes everything worse anyway :p
 
Oh yeah, I should give an update on me. So the rectal bleeding came back last night, not happy about that. I see my GI on Monday though so hopefully he can do something, anything to help. I'm a bit nauseous today, not terrible but things just feel fairly unsettled (which always seems to happen when the bleeding starts up so at least this is normal, but not fun). It's frustrating that this just keeps happening but at least I see my GI fairly soon. And I have the weekend to rest & recover as much as I can. So yeah, I'm not great, I'm pretty bleh today.
 
Izzie, in that case, don't take any super long air flights. I could not sleep on the plane when I went to Japan and it was a 13 hour flight there - seriously brutal. The jet lag was awful and I think that's partly because I was awake for basically the entire flight (I did manage to doze off for a whole 15 mins or so but that's literally it). Same story with the flight home although that was "only" 11 hours coming home. Japan was wonderful but the flights were sooooo long and felt even longer because I could not sleep.
 
I can only imagine. I have slept on car rides but that's been the rare occasion where I haven't slept for like... days and would've passed out anywhere :p

My reflux is so so bad still, I was off meds for 36 hours for my test and it's done a number on me. So exhausting.
 
Noticed something a little alarming today before I was getting in the shower - my hair is getting very very thin. I have spots where I can see a lot of scalp. It's kind of making me panic a little, to be honest, though my hair has gotten thinner and thinner over the past few years ever since I was on strong antibiotics for almost a month. I used to have super super thick hair, now every time I go get a haircut the hairdresser comments on how thin and fine it is.

I'm wondering if I should bring it up with a doctor, if there's even anything that can be done or if I'm just being really paranoid.

Has anyone else experienced this, I seem to recall a past discussion about it. I don't know if it's caused by my long-term iron deficiency and anemia, or if it's my medication, or just stress, illness in and of itself... Maybe people just get thinner hair sometimes? No clue.

Anyways if you have any tips or ideas or similar stories then feel free to share!
 
Cat - I'm sorry that you're still struggling with rectal bleeding. I get it sometimes, so I understand how much it sucks, but I know I don't get it to the extent that you do. Hopefully your GI will be able to help.

Izzie - I think you should bring up your thinning hair to your doctor. At least so they can make a note of it. I wonder if any of the treatments or shampoos for thinning hair would help.

I'm not having a good day today. Yesterday I was having a lot of abdominal pain, but I wasn't sure why. Today I felt some pressure in my stomach, but it wasn't too bad. Then I went to go to the bathroom, and I thought it was just going to be my normal-type of bowel movement, but instead, when I pushed, complete liquid came out. I don't have D very often, so I'm not sure what's going on. Just what I needed......more problems. Since then my stomach has not felt good at all, but I haven't been able to go much either. It's strange. Normally when I have D, I have to go a lot. So I don't know. I hope you guys are doing as well as possible and can enjoy the weekend.
 
Cat I hope your GI has some help for you. What a bummer it is bleeding again.

Izzie there are supplements that you can get to help hair which might help. I guess when we aren't well we probably aren't absorbing what we should.

akgirl I have D like that awful [emoji30] I'd be concerned if it's not what you usually experience.

As for me I saw a different GP on Friday as mine was on leave yet again. I wasted if in his opinion I should wait for 7 months to get the scopes or try and find spare cash to get it done privately. He read me the letter from the Gastro specialist and as I knew he is convinced I have PI-IBS. So we discussed lots about what's been going on (the complication of having a history of severe depression with a level of anxiety) and how it was all making each thing worse. So now I have increased my meds for depression and he has prescribed melatonin to help the sleep so we will see how that goes. He also ordered a fecal occult test and said if it came back clear he felt there was no urgent need for the colonoscopy but if it should something then we would make moves to try and get it done sooner. At least he felt that might add some reassurance to the wait.

Today of course started with a bad gut day [emoji22]
 
Izzie, I would mention it. I think there are a lot of things that can cause thinning hair. One thing for me has been thyroid going up and down and causing hair changes.

Akgirl, I have that a lot, so sorry you're dealing with it now! If it's unusual for you I hope you keep a close eye on things today, and I really hope you feel better soon.

ShellK - I'm glad the different GI is at least going with an occult blood test, it's at least one step. Hopefully the results will be helpful.

I'm still having watery D. I was hoping my GI would call by Friday, but no such luck. No fevers, so I'm just hanging out, wishing I felt better.
 
Sorry for taking so long to reply, my mum has been in hospital this week so it's been a little busy!

Cat, I think the problem was just generally everything being angry but it's definitely not a problem now :( The weird post nasal drip/throat mucus/yellow tongue has been easing off the last couple of days and of course the D is picking back up and my joints hurt and last night the abdo pain kept me up. Thanks to the nice weather here in the UK and my low fever and night sweats my skin looks awful too, so spotty it's awful. Sorry for the moan, I'm just fed up of the cycle of an okay few weeks, then a slow slide into flare and an awful couple of weeks then a slow improvement and back into the cycle we go!

Izzie I'm so sorry being med free has caused so much of a lasting effect for you! I hope the doctor can finally do something to help you from the results. Definitely mention the thinning hair, there are loads of things that can cause it and its actually really common in autoimmune illness as well as with certain vitamin deficiency.

I'm feeling pretty awful today so think it's going to be a day of chilling out with netflix, although if this pain keeps up in this spot I may go down to the walk in. I know it sounds daft but part of me thinks maybe I need to get it recorded when I'm flaring so I can tell my GI just to look at the recent records for what's been going on lol.
 
Sarah I know the feeling of wanting to see a doctor when you're feeling bad just so someone will see you when you're at your worst. I've seen doctors for that reason several times in the past year, and it's actually yielded some result...
 
Ha ha ha. All I can do is laugh. I finally got the bleeding to stop (for now)... and then I woke up with a cold. :p I'm coughing a ton. It's always something, isn't it! It's actually kind of funny to catch a cold. It seems so odd to catch an acute illness on top of having chronic illness. It's ridiculous.

I see my GI this afternoon so we'll see what he says about the bleeding! Last time I saw him he literally had nothing he could do except refer me to a colorectal surgeon though, so I'm afraid it's just going to be more of that.

Izzie, I think I've read that iron deficiency anemia can cause hair thinning. My hair has always been thin & fine and has only gotten thinner and more brittle (it breaks really easily) so I understand how frustrating and depressing it is. Part of me just wants to be done with it and shave my head! But I don't think that'd be a good look for me, so more seriously I'm thinking about cutting it way short (it's currently fairly long).

Shell, be careful with the melatonin. I read somewhere that it can ramp up the immune system - which, if you have IBD, you don't want your immune system ramped up even more! There was a girl on the forum awhile back who had Behcet's, and she tried melatonin, but it made her Behcet's worse. I don't know much about melatonin, but you might want to do some reading about it just to be safe.
 
Hah, I know the feeling Cat. Last night my stomach was kinda okay only then of course I had horrible joint pain so bad it made me cry, AND this morning I woke up with cramps. Aaaaalways something. All you can do is try to find the humor in it I guess :p
 
Izzie, have you ever had your joint pain looked into? GERD shouldn't cause joint pain but of course IBD could, so that might be something to have investigated. Is it all your joints or specific ones each time?

I've been crampy too. First I had my period so it was those cramps, then when the bleeding came back I had cramps that seem specific to when I have a new hemorrhoid (I get nausea and cramps lately whenever I get a new hemmie, it's not a fun time), and then I took a bunch of Zofran for the nausea. The Zofran made me constipated so now it's those cramps! :p And whenever I get a cold, it seems to be something along the lines of, my immune system turns on to fight the cold, but it also fights my digestive system as well while it's turned on. My immune system apparently can't NOT attack my guts, even when it's turned on for a different reason like to fight a cold. So I'm bracing for that to happen, that hasn't kicked in just yet but the cold only started this morning.

So yeah, it's always just one thing after another. Fun times. I'm a bit sad lately, too. I had a co-worker who has UC, and when things were bad I knew I could always talk and joke with him and that he'd understand. Well, he retired a couple weeks ago, so he's no longer around on a daily basis for me to talk and joke with. So that's made me feel a bit lonely. I can't talk about this stuff with just anybody - I know you guys are always here for me, but it helped to have somebody "in real life" to vent to as well. Now he's retired and I'm the only IBD'er (that I know of) at work. (There is one girl who is about my age, she's pretty new, and I've noticed she uses the restroom a lot - I wonder if she might have IBD, but there's no not-awkward way of bringing that up. I can't exactly be like, "Hey, I noticed you poop a lot. Me too! Let's be friends!" :p )
 
My joints have always hurt horribly and I've never known why. I know I have some hypermobility but doctors have always brushed it off. I saw a psychiatrist recently who thought I should get checked for EDS, and I'm going to bring it up with a doctor again soon enough. I can't handle any kind of draft or cold, really. It's annoying. It's usually one limb at a time which is strange, and the pain feels weirdly skeletal? I don't know what it is, but I've always had it.
 
I don't know much about EDS but it does sound like you should get that investigated. That sounds awful! I have some type of arthritis in both hips and possibly my left knee (GP thinks osteo arthritis, and I saw a rheumy who thought it was inflammatory arthritis) and mine is affected by cold as well. But it has to be really cold, like bitter winter cold in order for my joints to be affected. Snow and sometimes rain can also set off my arthritis pain, but just a draft like you mentioned wouldn't make my hips hurt. And with yours being one limb at a time, jumping around like that, it doesn't sound like arthritis to me. But it does sound like something worth looking into, because if even a draft will set it off then that sounds horrible and like something that should be treated! Do you get any relief with heat pads or hot water bottles on the affected areas?

On that subject, you know you have a chronic illness when you're super excited to get a new hot water bottle. :p I went to some garage sales this past weekend and I found a new, small hot water bottle for only 50 cents. I have a larger one already at home, so I'm bringing the smaller one to work in case I need it at the office. I figure I could microwave some hot water and use that to fill the hot water bottle. Is that super weird of me, that I now have a work-specific hot water bottle? I feel like it's weird but necessary for my life.
 
Yeah now that I actually have "proof" that something is wrong with the stomach stuff I'm more willing to nag about the joint stuff too. I've been too worried I'd get written off as a hyopochondriac tbh.
 
Well I have a call into the GI again today. First movement of the day was a bit more on the nearly-formed just mushy side, but pale pale pale. Then around 11am, I hadn't eaten yet so I tried to have a protein drink. Shortly after drinking half of it, I had explosive, watery D that had a bit of a maroon-ish color. The drink itself was chocolate, so maybe that was it? I'm hoping so, but I called GI anyway. I'm in a lot of pain, in any case, and my bowels are LOUD today.
 
Well. I saw my GI yesterday and it went pretty much exactly how I expected it would. I told him I'm still having pretty regular rectal bleeding/hemorrhoid episodes in spite of the fact that I had hemorrhoid banding, am still on the steroid suppositories, and have done everything I can think of to try to prevent hemmies (I don't sit on the toilet too long, I take baths with epsom salt, I try not to strain on the toilet, I use a bidet sprayer to clean my backside so that I'm not wiping too much, I eat as much fiber as I can, etc). He literally told me that there's nothing further that he can do for me when it comes to the hemmie & bleeding situation. I figured he was going to say that, but I ended up crying in the exam room anyway. It just sucks to hear that from someone whose job it is to help, you know? He did at least refer me to a new colorectal surgeon - he said he's personally going to make sure that I get an appointment with the best CR surgeon he knows. So at least there's that. I'm supposed to get a call in the next day or two with the details on that appointment.

He also did some bloodwork again to check my iron and ferritin levels. He wasn't super satisfied with my bloodwork last time I had it done. My GP had said it was fine, but apparently he was only looking at the levels for iron and ferritin and he neglected to say that my iron saturation % was still a bit low (it was at 13% back in January). So my GI wants to see if my saturation level has gone up any since then. I've had a number of bleeding episodes since my last bloodwork was done (I have a new episode every 2-3 weeks or so), so I'll be interested to see where things are at now.

So yeah, I'm pretty disappointed but it's not like I wasn't expecting this. Trying not to pin too much hope on this new colorectal surgeon and in the meantime just trying to be as well as I can be.
 
I'm sorry to hear that Cat, I know how discouraging it is to hear that from a doctor. At least this one seems to be taking responsibility for finding you someone else who might be able to do something.

I'm having bloodwork tomorrow myself, to check on progress since the infusion. I'm pretty sure I'll need another one. I really should start taking birth control to get at least one kind of bleeding under control :p
 
Izzie, did you only have the one iron infusion? I'm not sure what the norm is there, but here I was told it's typical to have 3 infusions, so that's what I had. And then I started taking a liquid iron supplement after that to try to maintain my levels. If you've only had one infusion, I would think that you definitely need at least one more if not two. And do look into liquid iron supplements as well, those have been helpful to me and do not upset my stomach the way that iron tablets would.
 
They told me only one was scheduled so far, but it's not unlikely I'll need more.

Honestly I can't see myself being able to take iron supplements at all in any form. My diet currently consists of steamed fish and potatoes, that's about all I can eat without ridiculous heartburn :p Hopefully that'll change, but yeah.

Right now I'm just anxiously awaiting a phonecall from my GI with my test results. If I'm a good candidate for surgery I'm so going to do it within a few years at least. I have a cough constantly, my throat is sore, I have chest pains, I can't eat anything normal...

I mean I'd like to be in better shape before I go under the knife, ideally. And maybe get over my huge phobia for general anesthesia haha. But I hope it's an option because this sucks and is really messing with my quality of life...
 
Oh, Cat, I'm so sorry! It must be just awful to hear that they've done all they can, when that clearly isn't enough - I would have been in tears too!

I ended up not only being sent to get blood work and stool kit by my GI, but the pain got to the point that I took myself to the ED, too. I probably shouldn't have, as nothing really came of it, but geeze...sometimes you just want people to KNOW how bad it is (didn't we just have this talk a few posts up?). So I had blood taken again at the ED, they offered pain meds but I didn't want anything strong so I just took Tylenol, stayed for a few hours, then they did a CT scan, which amazingly came back looking so much BETTER than last time (yay? I think?) that they sent me home with strict instructions to turn in the stool sample asap this morning so GI can follow up.

So now I'm waiting to time the "correct" poo sample to collect so dh (who is lovingly working from home) can run me to the lab to drop it off shortly after. Joy.

OH! And, some of my labs from last night, and from February in the same ED, are a bit odd. It seems my albumin/globulin ration has been LOW, and my Globulin levels have been HIGH both times. Which I read can be inflammation/IBD related? But of course it can be other stuff, too. And last night one type of white blood cells were elevated (eosinophils?) which can mean allergies, but I haven't had ANY signs of allergy related issues, and it can also be related to...IBD. sigh. Now to wait to talk with GI.
 
Wildmtn, it sounds like you've taken two steps forward and two steps back when it comes to progress on your diagnosis. Hopefully your GI can shed some light on what all that really means. How frustrating that things on the CT came back looking better than before! Could that mean that the C diff is gone at least? Hopefully there's some good news in there for you somewhere. Good luck with the labs and stool tests, let us know when you get the results back.

Izzie, you've made it sound like you walk a lot, so I'm sure your fitness level is fine for undergoing surgery, so try not to worry too much about the anesthesia or anything like that. And it does sound like you need surgery, your symptoms sound so much worse than mine and just really horrible to have to live with every day. Hopefully you get those results soon so that you can move forward with surgery or whatever treatment option you decide on!

Speaking of surgery, my GI made it sound to me like surgery might indeed be my best option for the hemmie situation at this point. He said hemorrhoid banding is typically the least successful of all the hemmie procedures but that actual surgery might get me much better results. But, I don't have prolapsed hemmies or anything like that so I might not be a good candidate for surgery right now anyway. And I don't know that I really want surgery anyway, it sounds like there's so much potential for things to go wrong, and if things do go wrong then I might have fecal incontinence and I obviously don't want that. It sounds like the risks pretty much outweigh the reward, you know? That's why I went for banding in the first place, it sounded like a good middle ground between no surgery and surgery. My GI did also say that just because the first banding didn't work, that doesn't mean that subsequent banding won't work. Apparently it can sometimes be one of those things that takes a few tries sometimes. That doesn't instill me with a lot of confidence, but on the other hand I think I'd probably choose another banding over jumping right into surgery. Ugh. Just a lot to think about while I wait to see the new colorectal surgeon.
 
Well, that was fast! My GI called me just now with my bloodwork results - everything looks good and within normal ranges now. Also he got me an appointment with the colorectal surgeon for the middle of next month, just slightly over a month away. I was expecting a 4 month wait (it took that long for the first colorectal surgeon appointment) so I'm presuming my GI pulled some strings to get me in sooner. I guess it pays to cry during an appointment, hah.
 
Congrats, Cat, that's very speedy indeed :)

I'm having pretty bad chest paints again this evening and I'm planning on calling my GI tomorrow to see what I'm supposed to do. Kinda feel like I have gastritis or something. Can you even get gastritis when you're on PPIs?
 
Izzie, yep, I've had gastritis while on Nexium. I don't get gastritis very often these days, but I definitely know it when I have it. I think my last gastritis episode was about a year ago - I seem to get those episodes about once per year, now that I think about it. And I've been on Nexium for something like 4 years now, so yeah, it's definitely still possible.

I'm having a mini pity party for myself. I want to exercise but I'm still getting over this stupid lingering cold (I'm like 80% better but still have some chest congestion), so I know I shouldn't exercise. And it's raining so I can't even do anything outside. I'm just feeling bleh because of my cold and the weather. So I bought myself some presents to cheer myself up. :p The good news is, I can actually afford it for once - hubby found a permanent job (as a chef) that will start at the end of the month, right when his current temp job ends. We've actually had some spending money since he's been working the temp job, but I was afraid that was going to end soon. Nope, he's got another job lined up so for once in my life we're actually not completely broke! So, of course I had to order myself a new fleece jacket and a pretty piece of fabric from Japan (I miss Japan sooo much, I kind of want to just live there). Amazon prime is dangerous, ha ha. I can indulge all my Japanese shopping whims on there but that's not necessarily a good thing. :p
 
I just bought perfume online to cheer myself up so I know the feeling Cat :p

How do you handle gastritis? Other meds? Just rly careful diet?
 
For me, my gastritis pains always come on the same way. First I eat something I shouldn't, and the acid in my stomach starts boiling (or at least that's what it feels like - it feels like I'm full of hot lava acid in my stomach). Right then, if I take immediate action, I can stop the gastritis before it starts. I immediately start taking a bunch of reflux meds (whatever I have on hand - ranitidine, extra Nexium, omeprazole, tums), and drinking water to dilute the acid, and this is the most important one - I make sure to eat something. It isn't pleasant, when my stomach acid is boiling like that, it makes me nauseous and eating is the last thing I feel like doing. But, I need to eat something because that will give the stomach acid something to work on. If I don't eat, then the stomach acid starts to eat away at the lining of my stomach, and that is what causes the gastritis pain and inflammation. So yeah, from the onset of symptoms, it's meds and water and food, and usually that's enough to stop the horrendous pain before it starts.

Ha ha, online shopping really is dangerous! It's way too convenient! :p I'm glad you were able to get yourself something to cheer yourself up, though.
 
I have a question for all of you. How do you approach your doctors about things you've read or heard about? I hesitate to mention things I've read about online, or if I do I tend to just gloss over it with "someone told me". I guess I'm worried my doctor will be frustrated with me having done research on my own which honestly in the past some of them have been.

And I can understand that, handling anxious patients who spent too much time on Google probably takes a lot of precious time from them.

I often find I know more than I've been told by doctors about my condition because I've researched it on my own, and for me that's a way to lessen anxiety, that I know that "new" symptoms are common with what I have so I don't completely panic every time I feel a new twinge, or I read up on surgery options or medications so I know that there are options out there. Besides, not all doctors agree with each other anyway.

Having been treated pretty terribly by doctors in the past (i.e. being told that my mental health history is the cause of absolutely everything), I'm just sooo cautious with doctors, I don't want to come off the least bit stressed or anxious lest they decide I'm just being "hysterical" again :p

I'm expecting a call from my GI tomorrow and I want to bring up the fact that I want to try another type of PPI, and the idea of surgery in general (maybe she will bring it up, I don't know)and I'm actually really nervous about it.
 
Okay, sorry for the double post and for the coming lengthy rant, but here goes: GI called today, hadn't even gotten my test results, and didn't even read my file enough to know I had reflux problems before we talked. So, completely useless conversation there. I complained about my reflux cough, hoarse voice and chest pains and she suggested that I probably "have a cold". I was quite upset after.

So I called the clinic where I had the manometry and the nurse who performed it called me back 5 minutes later. SUCH A WONDERFUL NURSE YOU HAVE NO IDEA. Truly this is the first medical professional whom I've felt respected and heard by.

Anyways, she gave me the results kind of unofficially over the phone and apparently the reflux wasn't horrible. I was like right under the cutoff level for what they deem "bad" reflux, but like she said I was also fully medicated and had a really good reflux day that day, so she still thinks it's pretty crappy. The majority of my reflux happens when I lay down, apparently. Which is pretty logical, but it's a problem that I can't really sleep propped up. It would probably help.

Another thing that is TRULY crappy is my swallowing. Like, it's abysmal. So she is not recommending surgery, at a glance. They want to at least try everything else first. It's not a hard no, really, but it'd be a less than ideal outcome if I end up having to have surgery.

But she also said the meds I'm on are clearly not sufficient and she's recommending Nexium 40 mg twice a day. So that's 80 mg total. Which feels like a lot but right now I just want the symptoms to cool off so I can live. Surgery might be revisited later if medication cocktails don't work, but since my swallowing is so so bad the risk is I'd just end up having to live on very soft foods anyway or it'd get stuck on the way down. So. That's a bit discouraging as I really am in no mood to be on these meds for the rest of my life.

But my priority is just... something that works, right now, because I'm just miserable. It's so nice to speak to doctors/nurses who get it, who believe you and who seem to actually care that you get adequate treatment. She was very no-nonsense, gave me all the information as-is and was like "we're going to get this fixed, there are more things to try, don't panic."

So the day started with me feeling very very upset and discouraged by yet another doctor who can't be bothered to even check my chart, but I feel somewhat more hopeful after my conversation with the nurse. Just hearing someone say that this isn't the end of the road, and that medical professionals I trust with my care are not going to just leave me feeling like this forever, was just a huge relief.

I'm keeping my fingers crossed that my GI will actually perscribe me the recommended meds, at least now I have someone who's flat-out told me a recommendation so I can always refer back to her. I swear, it's a full time job being sick and making calls and trying to be diplomatic when you encounter difficult people :p
 

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