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sarahfh said:
Another one that's been struggling here! I've actually been away visiting family so that was extra fun! I'm living on antisickness meds the last couple of weeks which is frustrating and not managing to eat much but still getting diarrhoea with a lot of mucus.

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

I can't believe I have to drink another litre of Klean Prep before the MRE tomorrow, I have to drink it in 20 minutes rather than the hour and a half I got today. And I didn't even manage it all in that time, it took me 2 hours to drink three quarters of it :/
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Oh man, that prep is absolutely the worst. I was confined to the toilet most of the night. I used MoviPrep which had a HORRIBLE flavor and I had to gulp it to keep from throwing it back up. It worked, though, because my doctor said my gut was completely cleaned out. I think it worked a little TOO well if you catch my drift. LOL! I hope the MRE gives you some answers. I'm still awaiting the results of my biopsies of mucosa and the small polyp he removed. Good luck to you! :)
 
MissLeopard83 said:
Oh man, that prep is absolutely the worst. I was confined to the toilet most of the night. I used MoviPrep which had a HORRIBLE flavor and I had to gulp it to keep from throwing it back up. It worked, though, because my doctor said my gut was completely cleaned out. I think it worked a little TOO well if you catch my drift. LOL! I hope the MRE gives you some answers. I'm still awaiting the results of my biopsies of mucosa and the small polyp he removed. Good luck to you! :)
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I am sorry.
 
I can't even imagine some of the diets, etc. that some of you have to be on. But then, again, I have my own issues that most of you here will never have to deal with either on top of a few GI issues, and I also have numerous other serious issues. I'm not surprised that doctors have been skeptical of my problems at first, looking back. (I'm also glad they are all now mostly well documented.) I'm especially glad this forum is here, to help support each other.
Regarding family being supportive, or should be supportive, I've found that even those that should know the best, those that have seen the affects my specific illnesses cause me on a daily basis, sometimes even those family members with their own long term chronic illnesses, will never get it. It can feel quite lonely. I was recently told by one such family member with a chronic serious illness of their own, when I was worried about being able to get up in time for a family morning activity (I also have narcolepsy, which prevents me from getting into the deep sleep cycles which most people do and everyone needs, and it wakes me frequently in the night, and so frquently sleep late. Fatigue is an understatement with me), to just go to bed earlier. That to me is like telling someone with crohn's to just control it, like they had any choice. When I told them as much they told me they were sorry, then expected me to just go on like nothing had happened. But it let me know they (one of my closest family members) just didn't get it. I love that family member dearly, but we used to empathize with each other about others not "getting it" and I don't know how that can be repaired. They were the one person I thought understood. Frankly, that has been part of my depression lately.
On another family note, yesterday was a hard day. My mother, who in spite of dementia can be quite manipulative, managed to get me (and Doug) to drop all activities. I had plans to meet with someone else later in the day I hadn't seen in months because of my health, which health caused many cancelled get-togethers in the past and then some trust issues. At any rate, Mom had some musculoskeletal pain under her right ribs, called me in a panic (several times before I woke up as well as after) insisted I take her to her clinic, then when appointments were arranged Mom told me she was going to lunch with her friends but thought she would be back before we got there. Arrrgghh! Once to the clinic, because one blood test suggested she had a potential serious problem (possible blood clots in lungs or elsewhere, tho symptoms didn't show it, I know, I've had them and the doc didn't think so either, but we had to make sure), she ended up in the ER for more tests. My mom was a little confused as to why she was there and wanted to go home, which of course couldn't happen at that point until tests were done. Because the blood pressure cuff kept pinching my mom (lousy uncaring nurse on top of that), her blood pressure which was normal at the doctor's office kept going up. It was up to 220/80 toward the end and they almost couldn't let her go home. Finally, after several complaints about the way they were dealing with the BP cuff, another nurse found a manual cuff, was more gentle with her and they were able to get her blood pressure to an acceptable level and send her home. We got home about 10:30 pm.
Of course, I didn't sleep well, tho exhausted, have a headache, my blood sugar levels are crazy, allergies and asthma going crazy, and I keep having "bathroom issues" now.
Just had to vent.
 
Well, I'm still feeling pretty unwell, but we did manage to make the drive to pick up my grandma's car yesterday without incident. All I had eaten yesterday was a small bowl of soup and like 2 bites of white rice, so my system was still pretty empty and I didn't need to make a pit stop, thank goodness. This morning I'm back to cramps and bathroom trips though even though I barely ate yesterday. Ugh. I emailed my GI asking if I can go back on Entocort because this sure doesn't feel like remission anymore. And that's really frustrating. I'm afraid he's going to want to do more scopes or whatever if I'm actively flaring but I don't want more scopes (I don't have all my flare symptoms right now anyway, I'm not chilled and I haven't had night sweats, and I haven't lost much/any weight). I just want a short run of Entocort to get things back under some semblance of control. We'll see what he says and if he agrees with me or not. Sometimes I have to fight him to get the things I need to feel well. (He's a good doctor but he likes to be thorough and sometimes that means lots of tests and in the meantime I feel like crap.)
 
My head is hurting again from my chronic coughing. August 5th can't come soon enough. I'm also tired of taking Bentyl and not having any relief from my abdominal cramps/spasms. Hopefully, the results of my colonoscopy will come back this week as I am anxious to see the pathology report. Even if it isn't what I think it is, I just want answers as I am tired of getting the run-around from my GI doc. I don't want him telling me "it is just IBS and/or gas pain." Bentyl and simethicone aren't helping and they would if IBS was truly the cause. The only thing that seems to help is Kaopectate, but I get really bad constipation with it so I am reluctant to take it. :(
 
I took a nap from 4:45 to 7 and woke up with a bloated lower abdomen and cramping. I hate when this happens as I, of course, feel like crap. I also have a dull headache which I think is related to my possible sinus infection or whatever is going on in my head when I cough. I'm just not feeling well. I am planning to take a shower soon and get ready for bed as tomorrow is a work day. I just keep trying to focus on the positive - that my birthday is on Tuesday and I will be spending the day with my grandmother, going antique shopping and having lunch. I haven't been able to spend much time with her at all since I started working full-time in December. Weekends always fly by and I don't go over to their house much because time just slips away. I'm so looking forward to Tuesday.
 
I so admire how you just keep fighting, MissLeopard, in spite of all you have going on. I sincerely hope you get both some relief and answers soon.
Tuesday is also my honey's birthday. I hope you do something nice for yourself, as I hope I can do something nice for Doug. (Can't figure it out yet.) I'll now be thinking of you too on your birthdays. You deserve a break and I hope you can find some little escape from all you have going on. (((Hugs)))
 
SandyUte said:
I so admire how you just keep fighting, MissLeopard, in spite of all you have going on. I sincerely hope you get both some relief and answers soon.
Tuesday is also my honey's birthday. I hope you do something nice for yourself, as I hope I can do something nice for Doug. (Can't figure it out yet.) I'll now be thinking of you too on your birthdays. You deserve a break and I hope you can find some little escape from all you have going on. (((Hugs)))
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Thank you for the kind words. Sometimes, I feel like I'm whining or being a hypochondriac due to years of people telling me there's nothing wrong with me. I'm hoping I get the biopsy results this week so I have some answers.

I hope your husband has a nice birthday and you are able to spend some quality time.
 
MissLeopard, I hope you have a really nice day with your grandmother and a great birthday. Hopefully your body will calm down enough to allow you to enjoy the day.

Sandy, I hope Doug has a good birthday as well and that you can figure out a nice birthday treat for him.

How's everyone today? I'm still bad. I really think I've fallen out of remission and it sucks. I took 3 bentyl and 3 Zofran just to be somewhat functional at work today. And I'm not sure that I'm going to make it through the whole work day. The good news is, I had emailed my GI but he doesn't always look at those messages so I called his office this morning. I was afraid he'd be away since I know he takes off a good chunk of the summer. Fortunately he is in the clinic today and I got to speak with his nurse at length about what's going on. It sounds like she's going to recommend to my GI that he prescribe me some Entocort, which has gotten me out of flares in the past. So now I'm just waiting for the nurse to speak to him and then call me back - she said she'd probably call this afternoon, so I'm just waiting now. Waiting and trying not to cry at my desk at work. And sometimes failing at the trying not to cry part.
 
Cat-a-Tonic said:
MissLeopard, I hope you have a really nice day with your grandmother and a great birthday. Hopefully your body will calm down enough to allow you to enjoy the day.

Sandy, I hope Doug has a good birthday as well and that you can figure out a nice birthday treat for him.

How's everyone today? I'm still bad. I really think I've fallen out of remission and it sucks. I took 3 bentyl and 3 Zofran just to be somewhat functional at work today. And I'm not sure that I'm going to make it through the whole work day. The good news is, I had emailed my GI but he doesn't always look at those messages so I called his office this morning. I was afraid he'd be away since I know he takes off a good chunk of the summer. Fortunately he is in the clinic today and I got to speak with his nurse at length about what's going on. It sounds like she's going to recommend to my GI that he prescribe me some Entocort, which has gotten me out of flares in the past. So now I'm just waiting for the nurse to speak to him and then call me back - she said she'd probably call this afternoon, so I'm just waiting now. Waiting and trying not to cry at my desk at work. And sometimes failing at the trying not to cry part.
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Sorry you're not feeling well. I cried at my desk recently and closed the door. I'm in a public area and people stop in my office all the time. It was right after I received test results from my GI nurse that didn't help with finding a diagnosis. I was so frustrated. It sucks feeling that way at work. :(

My day, so far, has been rather slow. I was supposed to be moving my office this morning, but it will probably be the afternoon today before anything happens. Worst case scenario, I'll have to move Wednesday since I'm out tomorrow.

I didn't eat well at lunch. The cafe has a limited amount of choices for me to choose from that are gluten-free. I think I may take another Bentyl just in case my gut decides to revolt since I ate red meat again. I don't know why I do it because I know it bothers me, but, like I said, choices are limited and I was in a rush to get out the door this morning so I didn't have time to pack a lunch. Their grilled chicken is kinda gross and I knew salad was not a good idea due to gas and bloating. :stinks:

ETA: I'm having a lot of what I assume is mucus in my stool. I've been paying close attention to what my BMs look like and I had some yucky diarrhea and abdominal cramps today. I'm sure my diet for the last 2 days didn't help. I keep checking to see if my colonoscopy results are in, but I haven't seen anything on my patient portal. :(
 
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I seem to recall colonoscopy results in the US usually take about a week (my last c-scope was about 4 years ago although I did have a flexible sigmoidoscopy last year). So hopefully you'll get those results soon. As for mucus, in my understanding, everybody has mucus in their digestive tract. It helps the stool move through. Passing visible mucus doesn't necessarily mean anything, although in my experience I tend to pass more mucus during a flare. It's one of those symptoms that doctors don't really pay attention to though because a normal, healthy person can pass visible mucus. It is really disconcerting when it looks like you just blew your nose into the toilet, though!

I don't even have an office door, I'm a cubicle dweller. So usually I go to the bathroom and sit in a stall and cry when I feel the need to cry at work, but sometimes those pesky emotions come out when I'm in my cube.

I'm doing better, though - my GI did put through a prescription for Entocort. I was told that the nurse would try to call me this afternoon, but if she didn't have a chance to call, that I should just check with my pharmacy this afternoon and see if they have that prescription for me. So I looked online at my prescriptions just now and sure enough, there's Budesonide (generic Entocort) waiting to be picked up. Phew! I am very, very happy about that. Steroids seem to be the only thing that gets me out of a flare. And I'm pretty sure I'm flaring - in spite of self-medicating with things like zofran and bentyl, I've still had about 7 or 8 bathroom trips today, all of them with orangey-colored diarrhea. I *only* get that orangey color to my stool when I'm flaring. I've also still had zero appetite today. I've literally only eaten about 3 bites of mac & cheese and maybe 8ish Sun Chips. Once the steroids kick in, though, I will turn into an eating machine. :p I get HUNGRY and eat EVERYTHING when I'm on steroids. I'm kinda looking forward to that part because it sucks to have no appetite!
 
Cat-a-Tonic said:
I seem to recall colonoscopy results in the US usually take about a week (my last c-scope was about 4 years ago although I did have a flexible sigmoidoscopy last year). So hopefully you'll get those results soon. As for mucus, in my understanding, everybody has mucus in their digestive tract. It helps the stool move through. Passing visible mucus doesn't necessarily mean anything, although in my experience I tend to pass more mucus during a flare. It's one of those symptoms that doctors don't really pay attention to though because a normal, healthy person can pass visible mucus. It is really disconcerting when it looks like you just blew your nose into the toilet, though!

I don't even have an office door, I'm a cubicle dweller. So usually I go to the bathroom and sit in a stall and cry when I feel the need to cry at work, but sometimes those pesky emotions come out when I'm in my cube.

I'm doing better, though - my GI did put through a prescription for Entocort. I was told that the nurse would try to call me this afternoon, but if she didn't have a chance to call, that I should just check with my pharmacy this afternoon and see if they have that prescription for me. So I looked online at my prescriptions just now and sure enough, there's Budesonide (generic Entocort) waiting to be picked up. Phew! I am very, very happy about that. Steroids seem to be the only thing that gets me out of a flare. And I'm pretty sure I'm flaring - in spite of self-medicating with things like zofran and bentyl, I've still had about 7 or 8 bathroom trips today, all of them with orangey-colored diarrhea. I *only* get that orangey color to my stool when I'm flaring. I've also still had zero appetite today. I've literally only eaten about 3 bites of mac & cheese and maybe 8ish Sun Chips. Once the steroids kick in, though, I will turn into an eating machine. :p I get HUNGRY and eat EVERYTHING when I'm on steroids. I'm kinda looking forward to that part because it sucks to have no appetite!
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I was surprised to see my endoscopy results so quickly. I think it was posted 2-3 days after the procedure, but it was only 1 tissue sample. I have no idea how many he took this time, including the small polyp. I've called the GI nurse in the past, but I don't want to do that this time because I really want to see them myself. I hate it when she just says "negative" when I ask if they received the results. She says it so nonchalant like, "This won't make you frustrated." Don't get me wrong, though, because she has been a huge help as far as getting me in to see the doctor quicker (it was the next day), so I appreciate her for that.

Anyway, my office isn't moving today because the room I'm supposed to move to isn't set up. It's been a bit crazy today, anyway. One of the maintenance guys asked if it would be tomorrow, and I said, "I don't know. I'm off tomorrow." So I wonder if I'll move on Wednesday.
 
aRG! I was trying to vent about an accident I had in public, and the post disappeared. That about sums up how my day is going.

I'm off to see how adult diapers are rated on amazon.
 
I've had an interesting time today. Went to a family gathering of sorts, where my mother started discussing my illness with a distant family member I don't see more than once or twice a year. Which is fine, I don't mind people talking about it. However, my mother started detailing the horrors of every possible illness my doctors have considered I might have.

And I was just like *sigh*. Nothing has really been 100% ruled out and like, even if it had she never shared those horrific "what ifs" with ME, she's always been pretty positive even when scary things have happened so I kind of felt like oh wow, this is how you really feel then, huh? That and I honestly don't want to think about what a horrible life I might have if I had/have *insert worst case scenario of any illness*.

It really upset me and I didn't understand the purpose of it. Looking for sympathy I guess. But it made me feel even more anxious. I don't know if I should bring it up with her or just drop it.
 
It's always interesting hearing what other people really think, isn't it? That said, I'm sure your mother has her own worries about you and just needs to let off some steam because she's concerned. On the other hand again, it, it would be nice if she talked to you about her fears first, or got your permission to talk about what is okay to talk about with your condition, especially if it is something that is sensitive (and nobody wants to think worst case scenario.) And since it does make you upset or anxious, I would definitely talk to her about how that makes you feel when she talks to others about it. I'm sending hugs. :ghug:
 
SandyUte said:
It's always interesting hearing what other people really think, isn't it? That said, I'm sure your mother has her own worries about you and just needs to let off some steam because she's concerned. On the other hand again, it, it would be nice if she talked to you about her fears first, or got your permission to talk about what is okay to talk about with your condition, especially if it is something that is sensitive (and nobody wants to think worst case scenario.) And since it does make you upset or anxious, I would definitely talk to her about how that makes you feel when she talks to others about it. I'm sending hugs. :ghug:
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Thanks :)

And yeah I mean I'm not going to control what she says to other people when she's venting, that's fine, but when I'm sitting RIGHT there I don't see why we need to bring up every possible horror that could happen.

She was like "people DIE from it!" - granted about things I likely don't even have but nothing is certain yet. I don't see why she has to scare me to drum up sympathy from some random relative we're not even close to. I'll try to bring it up with her at some point.
 
I would feel the same way in those circumstances. I hope it goes well when you do talk to her. That is always a difficult thing for me (telling others when I've been offended, etc.), but usually for the best in the end. Good luck. And more hugs. :hug:
 
Wildmtnhoney said:
aRG! I was trying to vent about an accident I had in public, and the post disappeared. That about sums up how my day is going.

I'm off to see how adult diapers are rated on amazon.
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I got some last week when I was doing my colonoscopy prep. Adult diapers are no fun at all, but got some good ones that were pretty comfortable and of maximum absorbency without being bulky. They were Always Discreet brand. Depends makes one very similar called Flex-Fit. I bought Always because they were on sale at the drugstore and I had a coupon. Hope this helps and you feel better. :)
 
MissLeopard83 said:
Sorry you're not feeling well. I cried at my desk recently and closed the door. I'm in a public area and people stop in my office all the time. It was right after I received test results from my GI nurse that didn't help with finding a diagnosis. I was so frustrated. It sucks feeling that way. :(
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I just came on to vent and say pretty much that! Just talked to GP about results and he seems to think it's all ok. I don't want something to be wrong but I KNOW I'm not well. So frustrating that I am sitting in my office trying to work so I don't cry!
 
I may not be crying at work but I'm currently terribly nauseated and have the runs, at work. No way I can leave since no one can cover for me and I don't get off for another 4,5 hours. This is not. fun.
 
Izzie, work days like that are the worst! :( I'm sorry to hear it and I hope you're home and resting now. My day was basically like that yesterday although I was able to self-medicate enough to be somewhat functional at work. Still, it wasn't a fun time. I'm presuming you're at least allowed regular bathroom breaks at your job?

I'm literally on day 1 of the steroids and already feeling an improvement. My appetite is up and so is my energy. Guts are feeling better, too. Usually Entocort doesn't kick in this quickly for me (it usually takes 1-2 weeks!) so I don't know if this is placebo effect or what. At any rate, I'm happy that I can eat somewhat normally and am feeling like a human again.
 
Cat-a-Tonic said:
Izzie, work days like that are the worst! :( I'm sorry to hear it and I hope you're home and resting now. My day was basically like that yesterday although I was able to self-medicate enough to be somewhat functional at work. Still, it wasn't a fun time. I'm presuming you're at least allowed regular bathroom breaks at your job?

I'm literally on day 1 of the steroids and already feeling an improvement. My appetite is up and so is my energy. Guts are feeling better, too. Usually Entocort doesn't kick in this quickly for me (it usually takes 1-2 weeks!) so I don't know if this is placebo effect or what. At any rate, I'm happy that I can eat somewhat normally and am feeling like a human again.
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I rarely get D or really bad nausea so I didn't have the foresight to carry the appropriate OTC meds in my bag... Lesson learned. :lol:

It was okay. I get as many bathroom breaks as I want which is nice but I do think my coworkers think it's a bit suspect when I disappear like 5 times an hour. I enjoy my job but it's very social and lately when I haven't been on top physically I feel like I'm not doing as well as I used to. Which people have picked up on. They don't say anything critical really but I'm very often asked if I'm tired or if I'm feeling okay because sometimes I'll just stand somewhere staring into space when I'm in pain or my iron levels are crappy and I'm fatigued all the time.
 
I spent time with my grandmother today for my birthday and we had a lot of fun. Somehow, at lunch, we got into the discussion of what I've been doing with my GI doctor and how I'm going to find the answers as to why I'm feeling so crummy. She brought up a very good idea - my dad was tested as a kid for all sorts of food allergies or sensitivities with a skin test which is something I've never had. I've never seen an allergist. My grandmother and I have a lot in common, including sensitivities to makeup and food (I think she is gluten sensitive, too), and she's been dealing with GI issues all her life. A skin prick test could help me figure out quicker which foods to stay away from so I can avoid symptoms.

Anyway, today was a very good day. I was able to enjoy myself without feeling abdominal pain for most of the day, though it caught up with me this evening when we got home after dinner. I just took some Kaopectate and Bentyl a little while ago, and it's getting better. I saw a rainbow and a VERY beautiful sunset (it was so unique!) on the drive home from my dinner out with my family. I had a lot of fun. :)
 
MissLeopard83 said:
I spent time with my grandmother today for my birthday and we had a lot of fun. Somehow, at lunch, we got into the discussion of what I've been doing with my GI doctor and how I'm going to find the answers as to why I'm feeling so crummy. She brought up a very good idea - my dad was tested as a kid for all sorts of food allergies or sensitivities with a skin test which is something I've never had. I've never seen an allergist. My grandmother and I have a lot in common, including sensitivities to makeup and food (I think she is gluten sensitive, too), and she's been dealing with GI issues all her life. A skin prick test could help me figure out quicker which foods to stay away from so I can avoid symptoms.

Anyway, today was a very good day. I was able to enjoy myself without feeling abdominal pain for most of the day, though it caught up with me this evening when we got home after dinner. I just took some Kaopectate and Bentyl a little while ago, and it's getting better. I saw a rainbow and a VERY beautiful sunset (it was so unique!) on the drive home from my dinner out with my family. I had a lot of fun. :)
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I am glad for the nice time you had.
 
@ MissLeopard,
Screenshot_2016-07-26-21-44-02-1_zps6lobdw59.png
 
33 is about the perfect age. My mom used to say every year just gets better, but now at 87 she just says the golden years are really leaden years.
 
Man oh man. Forgot my meds tonight, took about... 5-6 hours before I realized. And wow I feel terrible, my entire stomach/esophagus/mouth is burning like crazy. I find it so strange how I can go from fairly functional human being to feeling absolutely horrid within a few hours because I didn't take a pill the size of my pinky finger nail :p It's bizarre.

Hopefully I didn't give myself gastritis by being a forgetful dumb. Hope the rest of you are well.
 
Izzie said:
Man oh man. Forgot my meds tonight, took about... 5-6 hours before I realized. And wow I feel terrible, my entire stomach/esophagus/mouth is burning like crazy. I find it so strange how I can go from fairly functional human being to feeling absolutely horrid within a few hours because I didn't take a pill the size of my pinky finger nail [emoji14] It's bizarre.

Hopefully I didn't give myself gastritis by being a forgetful dumb. Hope the rest of you are well.
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Hope you feel better soon.
 
Izzie said:
Man oh man. Forgot my meds tonight, took about... 5-6 hours before I realized. And wow I feel terrible, my entire stomach/esophagus/mouth is burning like crazy. I find it so strange how I can go from fairly functional human being to feeling absolutely horrid within a few hours because I didn't take a pill the size of my pinky finger nail :p It's bizarre.

Hopefully I didn't give myself gastritis by being a forgetful dumb. Hope the rest of you are well.
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I hate it when I forget to take my meds at the proper time. I've done that a lot lately because I'll fall asleep for a "nap" and then sleep too long so I wind up not taking my bedtime dose of Bentyl. Because of it, I wake up with painful spasms and I have to wait to take it for an hour after taking my thyroid medicine. I just woke up from my "nap" a little while ago and realized, once again, that I hadn't taken my meds but it's too early to take the thyroid pill, so I took the Bentyl. I don't know why I keep turning my alarm clock off in my sleep. It's so aggravating. :voodoo:
 
I just sent my GI doctor an email through the patient portal asking if the results of my scope are back. I don't know if he'll answer it, though, as he didn't answer my last question. I meant to call the office yesterday but never did since I was pretty sure they would put me on the phone with the nurse (it seems like she's the only one who can discuss the results besides the doctor) and I didn't want her to just tell me her interpretation of it since she tends to be abrupt. I would like them to post the results on the portal, but I'm not sure if they do it or the pathologist posts them. It's been 8 days since the scope was done.
 
MissLeopard83 said:
I just sent my GI doctor an email through the patient portal asking if the results of my scope are back. I don't know if he'll answer it, though, as he didn't answer my last question. I meant to call the office yesterday but never did since I was pretty sure they would put me on the phone with the nurse (it seems like she's the only one who can discuss the results besides the doctor) and I didn't want her to just tell me her interpretation of it since she tends to be abrupt. I would like them to post the results on the portal, but I'm not sure if they do it or the pathologist posts them. It's been 8 days since the scope was done.
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Best of luck.
 
I just got up the nerve to call the office to ask them if the results were in. The front office is apparently is not made aware when the results are received and the rep I spoke to said she would have the nurse call me. I asked if the results were going to be posted online so I could see them myself instead of talking with the nurse and she was very cordial and said she would pass on the message. Hoping I get them either today or tomorrow.
 
I came back from my lunch break to find that multiple documents had been loaded to my patient portal. I looked at it and one of them was the pathology report from my colonoscopy. It says that there was no evidence of Crohn's Ileitis, IBD, and Colitis (both microscopic and collagenous). So, again, no answers. I'm glad that nothing showed up, but it also leaves unanswered symptoms again. I'm not sure if I want to push for a small bowel MRE or if I just want to give up. It's so frustrating when you feel something but no one can figure out the source... :(
 
MissLeopard83 said:
I came back from my lunch break to find that multiple documents had been loaded to my patient portal. I looked at it and one of them was the pathology report from my colonoscopy. It says that there was no evidence of Crohn's Ileitis, IBD, and Colitis (both microscopic and collagenous). So, again, no answers. I'm glad that nothing showed up, but it also leaves unanswered symptoms again. I'm not sure if I want to push for a small bowel MRE or if I just want to give up. It's so frustrating when you feel something but no one can figure out the source... :(
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Don't give up.
 
ronroush7 said:
Don't give up.
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It's really difficult not to, especially when my GI doctor keeps pushing the IBS diagnosis on me. I see him next Friday (8/5) as a follow up. I don't know what his next move will be or if he'll quit testing altogether.

Earlier, I was looking up allergy specialists as I'm planning to ask my GP (I also see her on Friday, 8/5) for a referral. I really want to get the skin scratch and prick test so I can figure out which foods are bothering me (I already know gluten is a trigger but I also suspect corn). I hope I can get it done before my insurance year starts over on Sept. 1st and I have to pay my deductible again.
 
MissLeopard83 said:
It's really difficult not to, especially when my GI doctor keeps pushing the IBS diagnosis on me. I see him next Friday (8/5) as a follow up. I don't know what his next move will be or if he'll quit testing altogether.

Earlier, I was looking up allergy specialists as I'm planning to ask my GP (I also see her on Friday, 8/5) for a referral. I really want to get the skin scratch and prick test so I can figure out which foods are bothering me (I already know gluten is a trigger but I also suspect corn). I hope I can get it done before my insurance year starts over on Sept. 1st and I have to pay my deductible again.
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I would get a second opinion.
 
ronroush7 said:
I would get a second opinion.
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My mind keeps going in circles and I keep thinking, "Is it really worth it to spend more money when they haven't found anything yet?" The only thing I have not had done that probably should be done is a scan of the small bowel, but I'm starting to wonder if it is food allergies after all and all I need is a change in diet. I don't know. It's very confusing and frustrating to hit another wall. Also, my symptoms are not as bad as other people who post here. I have constipation most of the time and I'm gaining weight, not losing (I'm actually overweight). The only time I see blood when I wipe is if I have hemorrhoids. I just wish someone could tell me what is going on. I hate the unknown....
 
MissLeopard83 said:
My mind keeps going in circles and I keep thinking, "Is it really worth it to spend more money when they haven't found anything yet?" The only thing I have not had done that probably should be done is a scan of the small bowel, but I'm starting to wonder if it is food allergies after all and all I need is a change in diet. I don't know. It's very confusing and frustrating to hit another wall. Also, my symptoms are not as bad as other people who post here. I have constipation most of the time and I'm gaining weight, not losing (I'm actually overweight). The only time I see blood when I wipe is if I have hemorrhoids. I just wish someone could tell me what is going on. I hate the unknown....
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That is probably why you should keep pushing until you get an answer.
 
ronroush7 said:
That is probably why you should keep pushing until you get an answer.
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I really want to talk to my GP to see what she thinks about all of this. I wish I could talk to my former GP, but she's not under my current insurance, unfortunately. I'm glad I get to see my new GP next Friday as I want to hear her perspective. I feel like she really listens to me (at least she did at my first and only visit so far). I'm sorry if it sounds like I'm whining. Sometimes, it just helps to get it out in a place where people will understand... :sign0085:
 
Sandy, my grandpa told me something similar about the so-called "golden years." He told me that nothing good happens after the age of 75. From what I've seen of what he went through and what my grandma is going through in more recent years (he lived to be 84 and my grandma is currently 84), I believe him. It doesn't seem like things are so golden when you're falling apart either physically or mentally. I'm 36, and if I'm already dealing with several chronic health conditions at my age, being elderly does not sound like a fun time to me. I'm looking forward to that brief period of time where I can be retired (if I can ever afford to retire!) and before my body falls apart completely. I plan to cram in SO MUCH TRAVEL during that little window of time, if I ever even get to that point.

MissLeopard, I also encourage you to not give up - but it is okay to take a break if you're having doctor (or doctor bills) fatigue. I also would encourage you to seek a second opinion. There is no "typical" case of IBD - some Crohnies are overweight, some experience constipation instead of diarrhea. Having symptoms like that though, that aren't commonly associated with IBD, does make it harder to get a diagnosis. That doesn't mean you should give up, though. You know your body best and you know something is wrong and that it's more than IBS. So take a break if you need to, seek out a new doctor when you're ready to get back to looking for answers, and don't give up. :)

Izzie, I also hope you didn't give yourself gastritis, that's never any fun! Maybe you could set a reminder on your phone so that you don't forget in the future to take your meds? Just so long as you remember what the reminder is for. :p My hubby sets himself reminders in his phone but then forgets what they're for, so his phone will chirp and he'll be like, why'd it do that? And I'm like, it's reminding you to call your mother. :p Hah.

How's everyone today? I'm still fighting my way out of this flare. It turns out I did lose weight in the flare, about 5 lbs, and I haven't gained back so much as an ounce yet even though I'm eating more normally the past couple of days (currently scarfing some shrimp tempura in an effort to get a few extra calories in me). I had wanted to lose a few lbs, but in a healthy way and not like this. The flare made me feel really weak as well, like walking up 1 flight of stairs has completely winded me, so I think gaining back a lb or two might help me feel less weak. I'm sure when the steroids fully kick in then I'll be able to gain a couple lbs, I always gain weight when I'm on steroids! But for now I'm still in that grey area of feeling kinda okay-ish but still not like myself.
 
Cat-a-Tonic said:
MissLeopard, I also encourage you to not give up - but it is okay to take a break if you're having doctor (or doctor bills) fatigue. I also would encourage you to seek a second opinion. There is no "typical" case of IBD - some Crohnies are overweight, some experience constipation instead of diarrhea. Having symptoms like that though, that aren't commonly associated with IBD, does make it harder to get a diagnosis. That doesn't mean you should give up, though. You know your body best and you know something is wrong and that it's more than IBS. So take a break if you need to, seek out a new doctor when you're ready to get back to looking for answers, and don't give up. :)
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Why is it so hard to think rationally when you get frustrated? I had to talk myself out of giving up just because I haven't found answers. I'm seriously thinking about switching to another doctor in the same group, but she's further away from where I live. She specializes in IBD - specifically, Crohn's disease - so I think she could offer more insight. I think the doctor I'm currently seeing just wants to play it safe. He's not thinking outside the IBS box at all. Everything out of his mouth just pushes aside the way I'm feeling. His specialty is related to pancreatic and biliary diseases so I don't think he has much experience in this department to offer a differential diagnosis. My 33 years of living tells me that this is not normal and the pain I experience differs from day to day but one thing stays the same - the pain/discomfort in my upper right abdomen is ALWAYS there.

I wonder if my GP would order tests if my GI won't when I see them the same day? If I feel like I'm not getting anywhere when I go for my follow-up, I'm going to fire/dump him and schedule an appointment with the other doctor.

Thanks for the cheering up and support. :)
 
I'm going to put this on the other sub-forum, but does anyone have experience with Addison's disease? It's the only thing I have not been tested for that could be a possibility. I'm going to mention it to my GP when I see her next week and see what she thinks. I did a search on the symptom checker under my patient portal for my abdominal pain, fatigue, dizziness (comes and goes), joint and muscle pain, headache, and heat intolerance and it brought up Addison's. I also crave salty foods on a regular basis, but my sodium level was normal on the CBC back in April.
 
MissLeopard, funny you should ask - my GI had me tested for Addison's at one point. Addison's can mimic a lot of IBD-like symptoms, and it responds really well to a low dose of steroids. I believe 7.5 mg of prednisone is the ideal dose for Addison's. When I was ill and flaring with no answers, at one point I demanded to try a trial of pred. I was put on 10 mg for 5 days, and I felt SO GOOD during those 5 days. Because I had such a fantastic response to such a low dose of pred, and also because my sodium is often low/borderline, my GI felt like Addison's fit pretty well. So I had the ACTH blood test, but my results came back negative, so I don't have Addison's. It was a good thing to rule out, though.

As for your GP ordering tests, it probably depends on your GP and on what tests. I know my GP does colonoscopies (I've always had my GI do my scopes though, but it's good to know I can fall back on my GP to do those if need be). And he can certainly order bloodwork, it was my GP who ordered the ACTH test for Addison's in fact. He can order x-rays and CTs and MRIs as well. Not sure about GI-specific things like pill cam, it was my GI who had ordered that test for me. But my GP seems to be able to order most tests.

And don't worry about it, pain/symptoms plus frustration does not equal clear thinking. :) That's what the forum is here for, support first and foremost. We support each other when we're able to and we reach out for support from others when we need it. Everybody here is going through similar things, we can all understand your frustration as we've all been there ourselves!
 
Cat-a-Tonic said:
MissLeopard, funny you should ask - my GI had me tested for Addison's at one point. Addison's can mimic a lot of IBD-like symptoms, and it responds really well to a low dose of steroids. I believe 7.5 mg of prednisone is the ideal dose for Addison's. When I was ill and flaring with no answers, at one point I demanded to try a trial of pred. I was put on 10 mg for 5 days, and I felt SO GOOD during those 5 days. Because I had such a fantastic response to such a low dose of pred, and also because my sodium is often low/borderline, my GI felt like Addison's fit pretty well. So I had the ACTH blood test, but my results came back negative, so I don't have Addison's. It was a good thing to rule out, though.

As for your GP ordering tests, it probably depends on your GP and on what tests. I know my GP does colonoscopies (I've always had my GI do my scopes though, but it's good to know I can fall back on my GP to do those if need be). And he can certainly order bloodwork, it was my GP who ordered the ACTH test for Addison's in fact. He can order x-rays and CTs and MRIs as well. Not sure about GI-specific things like pill cam, it was my GI who had ordered that test for me. But my GP seems to be able to order most tests.

And don't worry about it, pain/symptoms plus frustration does not equal clear thinking. :) That's what the forum is here for, support first and foremost. We support each other when we're able to and we reach out for support from others when we need it. Everybody here is going through similar things, we can all understand your frustration as we've all been there ourselves!
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Thank you. My GP is an internal medicine specialist and I know my other internist that I saw prior was very comprehensive in the kind of tests she would run. I just recently started seeing this GP, however, and she's in a group setting rather than private like the former was, so I don't know if they require her to set up referrals or if she is allowed to do testing for disorders. She referred me to my GI when it was discovered I had fatty liver disease, but he said it was nothing to be worried about.

The only thing that seems off for Addison's disease is that it says most people have hypercalcemia, hypoglycemia, and hyponatremia - all of which my lab work for CBC and CMT was normal. I was not fasting, though, so it makes me wonder if I need to have it redone. This is something I'll bring up with my GP. I know Addison's is an endocrine disorder, so she may want me to see an endocrinologist. We shall see...
 
Things to know
Skin prick test or blood tests for IgE food allergies produce a "false positive" 50% of the time
IgE food allergies occur within 2 hours of ingestion
An allergist would be able to help you determine these but random testing us not recommended
Mixed IgE allergies are things like Eosinophilic disorders these are dx through biopsy in the upper Gi tract looking for EOS
Traditional skin prick tests are not as useful for finding these triggers some use patch testing but most eliminate the top 8 allergens and then rescope and treat with elimination diet /swallowed steriods

Food sensitivities or intolerances can cause a host of issues but there are no valid blood or skin tests for these- some folks try to get IgG blood tests but you produce IgG to everything so not a valid test
Food intolerance typically required a food diary and elimination diet

http://www.kidswithfoodallergies.org/page/food-allergy-topics.aspx
 
MissLeopard I'm sorry the colonoscopy results weren't quite what you were hoping for. I can understand the internal debate over pushing for small bowel imaging, it's one I had for some time. Thankfully being in the UK I didn't need to consider the financial implications, but I would say if you have any doubt it's definitely worth getting it done even if it's just so you can feel like you've done all that you can to figure out what the route cause of your symptoms are.

Cat I'm sorry you seem to be flaring, I hope the steroids kick in quickly for you!

I just wanted to pop in and say I survived the Klean Prep and MRE. But yikes the oral contrast, that stuff was worse that the Klean Prep for making me run to the toilet, even before I had drunk the whole lot and got into the scanner! Plus thanks to my heart thing anyway the Buscopan gave me a resting heart rate of 124bpm which was interesting. Unfortunately the whole thing seems to have irritated my intestines and my pain has been higher than usual and I'm living on antisickness meds.
So now I'm in the anxious wait for results. I hate it so much. It could be up to 2 months before I hear from my consultant with results. I've basically given up now that it will show anything and I'm slowly accepting I'm going to be stuck with the IBS diagnosis for now.
Dietician on Wednesday though so hopefully that will be helpful, the GI wants me to try the low FODMAP diet and I want someone to actually give a crap about the fact I can barely eat and weigh less than I did at 14!
 
For those of you that have trouble remembering to take your meds (totally me!), there's this great app called Mango Health. You say which med you need to take and at what time, and it will remind you. And when you don't say that you've taken it, it'll remind you again in 10 minutes. It also discusses side effects and interactions between meds. I use it every day, and it really helps me so much! You can also win gift cards for taking your meds as you're supposed to.....I actually won a $75 gift card once!

MissLeopard, I completely understand the struggle of trying to decide if you should keep fighting for a diagnosis or if you should just give up. I ended up taking a break from testing and treatments for a while because it just got to be too much for me, but then I realized that doing so wasn't going to help me get better, so I'm back at it again. It's totally understandable if you need to take a break. All this doctor stuff can be exhausting!
 
I am so ready to go home and rest. The weekend cannot start soon enough. My whole lower abdomen feels full or bloated. I'm not having cramps right now, but I just don't feel well. I can't wait to take a nap when I get home...
 
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My crazy milk intolerance/allergy/whatever it is continues to be an interesting thing. I accidentally had milk today - had mashed potatoes at a friend's and afterwards we realized that instant mashed potatoes has milk in it.

Now I'm in bed with the same old joint pain. Though I haven't even had a twinge of it in the past few dairy free weeks. It's so interesting and strange to me!

I do seem to have triggered a mild case of gastritis by missing my meds but as long as I stick to bland foods I'm sure it'll pass in a few days. Other than missing meds I honestly have been feeling much better the past few weeks. Hopefully I'll get back to it!

Oh and am dealing with another sick elderly relative. Brain tumor, this time. Operable and benign, but when a person is elderly, that's a risky procedure... So we'll see, will spend tomorrow visiting in the hospital though.
 
Last night was the worst and is a prime example of why I'm not ready to give up on finding a diagnosis other than IBS. My right upper abdomen was spasming so bad that I couldn't stand up straight. I took some Bentyl 10mg but it hardly touched it so I took another and laid down for a "nap." I ended up waking at 9am this morning so I had 12 hours of sleep and now I'm kind of groggy. I took my thyroid medicine so I have to wait a full hour before eating anything. I don't know what set off the spasms last night. I was really constipated yesterday so I decided to have organic black bean chili for lunch, which I've had before and it didn't bother me. I had gluten-free breaded chicken tenders and tater tots for dinner, which I've also had before and it didn't bother me.

I'm supposed to go out with my aunt tonight for a belated birthday dinner but I have no idea where I want to go that's safe. I really didn't want to even schedule it last night, but she does this yearly, so it was expected. Say some prayers that I can figure out where to go that won't give me an upset stomach or horrible cramps/spasms.
 
MissLeopard83 said:
Last night was the worst and is a prime example of why I'm not ready to give up on finding a diagnosis other than IBS. My right upper abdomen was spasming so bad that I couldn't stand up straight. I took some Bentyl 10mg but it hardly touched it so I took another and laid down for a "nap." I ended up waking at 9am this morning so I had 12 hours of sleep and now I'm kind of groggy. I took my thyroid medicine so I have to wait a full hour before eating anything. I don't know what set off the spasms last night. I was really constipated yesterday so I decided to have organic black bean chili for lunch, which I've had before and it didn't bother me. I had gluten-free breaded chicken tenders and tater tots for dinner, which I've also had before and it didn't bother me.

I'm supposed to go out with my aunt tonight for a belated birthday dinner but I have no idea where I want to go that's safe. I really didn't want to even schedule it last night, but she does this yearly, so it was expected. Say some prayers that I can figure out where to go that won't give me an upset stomach or horrible cramps/spasms.
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Praying. I hope you get answers soon.
 
I am a 28-year-old male.

I am at my desk at work right now for the first time in nearly 2 weeks. I feel pretty tired and weak which is why I have missed work lately.

I am undiagnosed but going in for my colonoscopy and endoscopy next week. My intestines lost all function at 9 months old and I was hospitalized 6 weeks. I was misdiagnosed with celiacs until I was 9 when a Ped GI did 3 endoscopies and a gluten challenge. He then said I Had GERD with scarring at the bottom of my esophagus, I have been on Prilosec ever since. I had rarely experienced much acid reflux but fast forward to my early and mid-twenties I have lots of digestive pain, usually daily mucus and occasional blood in the stools.

I was told IBS and given Bentyl which did nothing, I didn't force the issue early enough most likely because the pains and rough digestion have always persisted. Now some lab results have shown low iron, 19 UG/DL. 6% Transferrin Saturation. But normal TIBC

HGB was at 11, but has gone up to 13 since I think my stomach is less upset than a month ago. My C-RP levels at 5.5. And a stool sample showed blood even when i Can't see spots of blood in it.

So I am thinking as I Have for a while i have some sort of Inflammation in my bowels. Most my pain is from my belly button side to side and down to just below where i wear my pants. Sometimes the pain i feel in my back like its chewing through me. I have went from 135 pounds down to like 120 in a few months. This last couple months for my gut was the hardest which is why i finally demanded to see a GI and stop getting bentyl and anti-depressants from my PCP. he also loves to tell me to manage my stress better and make sure I am not Bi-Polar. Sounds like many here have been treated as mentally ill too when it was other things.

Anyway, I feel like I am in the right place to talk about these things, it gives me comfort and has been good fo my mind just to feel not so alone. I do hope i dont continue feeling so weak. I love to go out on my boat and fish, but I have been so drained lately I can barely get out of bed. Hopefully it gets better soon.
 
Welcome jcashen87! Managing stress has honestly been the worst piece of "advice" I've been given by bad doctors. Especially considering I was never stressed before I was sick in the first place. The only time my current, good doctor has mentioned stress has been when asking how I'm dealing with the stress of being sick and if I feel I need further support, but never as an excuse for my symptoms.

My GI is coming back from vacation this week and I'm hoping my barium swallow will happen soon so I can just get it over with. They need to figure out why I have motility issues and how severe they really are before I can see a surgeon. IF I can see a surgeon.

I hope so though because since my little medication mishap where I was late taking them one night I've been feeling like crap again. The cough is coming back, as is the constant heartburn. Trying to curb it with extra meds but it's a slow process. It seems absurd to me that being late by 4-5 hours taking one little pill should make me sick for a week or more... I'm keeping my fingers crossed so hard that I'll end up being a decent candidate for surgery in the future.

My next dietary experiment is cutting out grains for a while. With how much better I feel off dairy I figure I should make sure nothing else is messing me up. I'm also trying to eat as many nutrient dense foods as possible. My tendency to only want instant noodles when I'm feeling bad is probably not helping my various deficiencies :shifty-t:
 
I woke up from a nap a little while ago with a bloated lower abdomen again and feeling like I had food sitting in my stomach that hadn't digested. I felt HORRIBLE and took Pepcid AC to help with the stomach and some Gas-X to deal with the bloating. I also drank some of my favorite Argo Tea which helped me feel better, too. I'm really starting to wonder, now that this is becoming a habitual thing, if I should get tested for gastroparesis. My stomach is often yucky when I wake up in the mornings - so much so that I don't want to eat because it makes me nauseated. I see my GI this Friday, so we'll see how that appointment goes. I may fire him and go see someone else if this doesn't go well.
 
Missleopard have they done a delayed gastric emptying test on you ??
You have to eat two scrambled eggs /toast and water and then they take pictures ( scans) over 4 hours to see how long it takes to empty .
You sound a lot like my Ds prior to being dx with gastroparesis
When things sit in your stomach you are just plain miserable

Good luck with your Gi
Did you get biopsy results back yet or did I miss that ???
 
my little penguin said:
Missleopard have they done a delayed gastric emptying test on you ??
You have to eat two scrambled eggs /toast and water and then they take pictures ( scans) over 4 hours to see how long it takes to empty .
You sound a lot like my Ds prior to being dx with gastroparesis
When things sit in your stomach you are just plain miserable

Good luck with your Gi
Did you get biopsy results back yet or did I miss that ???
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No, I need to get tested. It's one of the tests that my GI hasn't even discussed yet. It makes sense because I think I have GERD from a lack of stomach acid and slow emptying. I hate the way food tends to sit in my stomach and it feels like a brick - especially when I lay down and take a nap and it makes me feel miserable. I have hypothyroidism that is being treated with medication but I know it's a risk factor for delayed stomach emptying.

My biopsy results came back earlier this week and my colon was negative for any form of IBD. I'm planning to ask my GI this week when I see him Friday for a small bowel MRE since I know it can hide there.
 
I'm finally doing a little bit better. It's been a week that I've been on the steroids and they seem to have finally kicked in today. Yesterday, I stupidly attempted to walk my dog. That went pretty badly, I nearly passed out several times. I literally had to talk myself out of passing out, it was not good. I barely managed to make it through the walk, then I felt really awful for most of the day.

Today, though, I woke up and actually had an appetite! And I've only been to the bathroom once so far this morning instead of 5 or 10 times. That's a definite improvement. Not sure if I trust it enough yet to walk the dog again, though! I'm going to give it a few more days before I attempt any type of exercise. I do feel a lot less unwell today than I've felt in awhile, though. It seems very promising.
 
Cat-a-Tonic said:
I'm finally doing a little bit better. It's been a week that I've been on the steroids and they seem to have finally kicked in today. Yesterday, I stupidly attempted to walk my dog. That went pretty badly, I nearly passed out several times. I literally had to talk myself out of passing out, it was not good. I barely managed to make it through the walk, then I felt really awful for most of the day.

Today, though, I woke up and actually had an appetite! And I've only been to the bathroom once so far this morning instead of 5 or 10 times. That's a definite improvement. Not sure if I trust it enough yet to walk the dog again, though! I'm going to give it a few more days before I attempt any type of exercise. I do feel a lot less unwell today than I've felt in awhile, though. It seems very promising.
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Hope it continues to improve.
 
I woke up this morning feeling nauseated and just generally not well. I cannot wait to find a diagnosis. This is really frustrating not knowing what's going on with my own body and not having answers...

The good news is that I made it into work and my office is finally moved! It was scary being in the office next to the construction as they were banging the wall with a sledgehammer and it got SO loud that I was getting a headache. I was worried they were going to come through my wall. The new office is MUCH cooler which helps with my heat intolerance, so I am super happy! :)
 
I got to work two days in a row this weekend! Now I'm just taking my usual days off Monday and Tuesday. I feel the fatigue slowly getting better. My gut pains have been worse, I've taken more iron and eaten somethings I should've probably avoided but as long as the fatigue gets better I can make it til next Thursday for my scopes.

Hope everyone is fast approaching answers and relief. The not knowing has bothered me for years, unfortunately I'm one of those people that sometimes tried to act like I'm ok, or it really was IBS. Or that it would go away. This spring and summer it finally got so bad though. I'll feel better with answers regardless I think.
 
Cat - glad to hear you're feeling a little better!

MissLeopard - construction in the workplace is such a hassle, hope you enjoy the new space!

I'm feeling so-so. Very dizzy and fatigued, I think it's the anemia making itself known. And I have to go to work tomorrow. As in, I HAVE to there's no one to replace me and I just can't leave my coworkers to do all the heavy lifting so I have to.

I tried to eat some red meat today in an effort to combat the iron deficiency but MAN I cannot digest red meat well. I feel like it's still sitting in my esophagus. Pretty icky feeling. Hell maybe it IS still stuck there, with my motility issues who knows.

Still I must say that overall I am feeling better. My cough and breathing issues have gotten much better since Ranitidine was added and I quit dairy, and the constant cough was really getting me down, so that makes me happy. I still have to clear my throat a lot but much less than before and usually it's only if I eat something bad.

Chest pains are still happening but not as often. I do have heartburn probably a few hours a day still but none of the craaazy belching attacks I used to get. Now I might get one or two good belches in after a normal sized meal. But that's a far cry from the 100+ I used to get after eating anything no matter the amount. The LUQ pain I would get is basically non-existent atm.

Sometimes it's hard to see improvement when you're still feeling pretty blah, but if I really think about it honestly things have improved. Knowing how it usually goes it might be back to crappy next week, but it's nice that things are seemingly moving in the right direction.
 
I am so sore and achy. I helped move my furniture out of my old office into the new and I'm paying for it. I also had a craving for a hamburger tonight and decided to indulge since my mom and dad had a contractor over and I didn't know if dinner was ready (it was; she made a salad). Anyway, red meat has been giving me grief the last few times I've eaten it, but I needed the protein, apparently.

I'm planning to get to bed here soon after taking some Tylenol. I hope I'm able to get some sleep as achy legs usually mean tossing and turning. :(
 
I just found out that my employer is switching insurance companies when our new insurance year starts Sept. 1st. This is a problem for me because the company they are switching to (BCBS) does not cover the GI group I've been seeing, so I will probably have to switch to another gastroenterologist in the network, otherwise I will have to pay 2x what I'm paying now. I'm hoping that the new insurance is a PPO rather than the HMO I have now so I have more options...
 
MissLeopard, I have a BCBS PPO plan through my work and it's pretty decent as far as the number of doctors that accept that insurance. And it sounds like you have been leaning towards getting a 2nd opinion anyway, so maybe not such a bad thing to have to quit seeing this particular GI.

I had red meat yesterday too - I had lamb, which usually sits fine with me. Today though I'm SO gassy! I go to the bathroom thinking I'm going to poo, but all that comes out is a ton of gas. I'm not sure if it's a flare thing, like if I'd be gassy right now regardless of what I ate because my body just isn't digesting things correctly. At any rate, I'm eating much more simply today. No lamb for me for awhile.

It's times like this I really miss Japan. You could go into any convenience store in Japan and buy rice balls. It was such a perfect thing, just rice with a little bit of fish in the center and maybe some seaweed, and that's it. I would sometimes grab a rice ball for a snack or for breakfast. US convenience stores don't carry rice balls and I wish they did. Japan really knows how to do tummy-friendly, easy food. My belly was quiet and happy the whole time I was in Japan and I'm sure the food played a big part in that. I miss Japan!
 
Cat-a-Tonic said:
MissLeopard, I have a BCBS PPO plan through my work and it's pretty decent as far as the number of doctors that accept that insurance. And it sounds like you have been leaning towards getting a 2nd opinion anyway, so maybe not such a bad thing to have to quit seeing this particular GI.

I had red meat yesterday too - I had lamb, which usually sits fine with me. Today though I'm SO gassy! I go to the bathroom thinking I'm going to poo, but all that comes out is a ton of gas. I'm not sure if it's a flare thing, like if I'd be gassy right now regardless of what I ate because my body just isn't digesting things correctly. At any rate, I'm eating much more simply today. No lamb for me for awhile.

It's times like this I really miss Japan. You could go into any convenience store in Japan and buy rice balls. It was such a perfect thing, just rice with a little bit of fish in the center and maybe some seaweed, and that's it. I would sometimes grab a rice ball for a snack or for breakfast. US convenience stores don't carry rice balls and I wish they did. Japan really knows how to do tummy-friendly, easy food. My belly was quiet and happy the whole time I was in Japan and I'm sure the food played a big part in that. I miss Japan!
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I won't find out until later this month what kind of plan it will be - PPO or HMO. Yes, you are right about the 2nd opinion - but I was hoping to stay in the same GI group, just a different doctor. It's a really good group and highly respected, so it stinks to have to change to a non-affiliated doctor. The one I was hoping to change to in the group has a specialty in intestinal disorders, including IBD. :(

ETA: I just realized, though, that BCBS means that I could see doctors at research hospitals and I couldn't before so that's a HUGE plus! We have one near to us that my mom and dad have both used and they have BCBS, too, through my dad's work. I am so glad I realized that. I'm sure I'll be able to find a great GI doc at that hospital! :)
 
Yep, that's where I go too, a research/teaching hospital (through the University of Wisconsin system). They have a lot of cutting-edge technology and most of the doctors are quite good, so hopefully you can find a good new GI as well. (There's of course always at least a few bad doctors in every system, so I'd still encourage you to do a bit of research on what doctors you'll be able to see once you get the details of your new insurance.)

Blerg, I'm having a worse day today than yesterday. The gas has finally subsided but I just feel really unsettled belly-wise and I'm back to being a bit light-headed. I'm trying to get some electrolytes into me in case that's the cause of the light-headedness. I had a banana earlier for potassium, and now I'm eating a few chips for the sodium. I don't really feel like eating, though, I *still* don't have much appetite. It's weird to be on steroids and to not be ravenously hungry (which is what I usually am on steroids). I guess they still haven't fully kicked in? It's been something like 8 days on the steroids now so I think I just need to be more patient. I hate being patient when I feel like crap, though.
 
Cat-a-Tonic said:
Yep, that's where I go too, a research/teaching hospital (through the University of Wisconsin system). They have a lot of cutting-edge technology and most of the doctors are quite good, so hopefully you can find a good new GI as well. (There's of course always at least a few bad doctors in every system, so I'd still encourage you to do a bit of research on what doctors you'll be able to see once you get the details of your new insurance.)

Blerg, I'm having a worse day today than yesterday. The gas has finally subsided but I just feel really unsettled belly-wise and I'm back to being a bit light-headed. I'm trying to get some electrolytes into me in case that's the cause of the light-headedness. I had a banana earlier for potassium, and now I'm eating a few chips for the sodium. I don't really feel like eating, though, I *still* don't have much appetite. It's weird to be on steroids and to not be ravenously hungry (which is what I usually am on steroids). I guess they still haven't fully kicked in? It's been something like 8 days on the steroids now so I think I just need to be more patient. I hate being patient when I feel like crap, though.
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During some down time, I looked online at the research hospital's website at the GI doctors and found 3 that I'm interested in - particularly the woman doctor I found because she's done several studies in gluten sensitivity and she also has specialties in functional bowel disorders, motility disorders, slow transit constipation, etc. There is also a male doctor, too, who specializes solely in intestinal disorders, including IBDs, Celiac disease, etc. It looks very promising. :)
 
I am having a moment of freak out.

On the up side - I have an appointment with yet a new "wonderful" new GI for next Weds.

However, the dr that got me that referral, is the one who also gave me the Sjogren's diagnosis, has been "let go" from the teaching hospital I go to!! I've done some poking around, and it's nothing nefarious, they just couldn't keep up with her patient load. Basically, she brought in too many special-needs patients (like me) and wanted to get them on specialized treatment (like IVIG for Hugh's syndrome) and the hospital was having a hard time keeping up with her. So, they let her go!! I'm upset at the hospital, confused about where to go for treatment next (do I wait for her to get setup at a new office?) and freaking out because one of the meds I'm on for one of my conditions is a controlled substance, which means I need written Rx's every month. Luckily another Dr had offered to write it, so I'm going to call and see if that offer still stands. (fingers crossed!)

In the meantime, the Depends FlexFit aren't super annoying, even if wearing them made me cry tears of frustration. They didn't make annoying "paper" sounds that dh or the kids could hear (at least they didn't say anything, even when I asked a few minutes after walking into a room). And they weren't any more bulky than an overnight pad. And eventually they gave me the confidence I needed to run errands out for a full day. I was away from home for 6 hours! And I even ate a pastry and not just food I had packed for myself!! So I call that a tentative victory. I have a big enough purse that I can hide 2 spares plus flushable wipes in their own makeup bag within the purse, so they don't draw any attention. Here's hoping I can out get more often.
 
I would see if you could find another doctor because you don't know how long before the one who was let go will find a new office.
 
I'm currently awake at 4 in the morning with really bad chest pains. Back pains, more like. This has been happening a few hours after I take Ranitidine for the past few days or so. I'm not sure what it is but I get nauseous, feel like I have a rock sitting in my stomach, and then I get the pain, it usually passes in 30 minutes but it's quite painful when it's happening.
It's too bad because the medication has been helping with my other symptoms. Though I will say that I find it absurd that I'm on 80 mg of PPIs and 300 mg of h2-blockers and Gaviscon as needed daily and I'm still not feeling okay. It's better, with this amount of medication, but I'm nowhere near back to normal.

I'm so concerned about the semester starting, I'm not sure how I'm going to try to keep up with classes when sometimes I can't fall asleep until the early morning. Had to call in sick to work today too, even though it messed things up for my coworkers. I was so dizzy all morning I could barely stand for more than 10 minutes at a time.

I'll have to wake up in 3 hours to call the GI's office to check in on test results and ask some questions. Being sick is like having a side job. Moonlighting as a professional patient :p
 
Izzie said:
I'm currently awake at 4 in the morning with really bad chest pains. Back pains, more like. This has been happening a few hours after I take Ranitidine for the past few days or so. I'm not sure what it is but I get nauseous, feel like I have a rock sitting in my stomach, and then I get the pain, it usually passes in 30 minutes but it's quite painful when it's happening.
It's too bad because the medication has been helping with my other symptoms. Though I will say that I find it absurd that I'm on 80 mg of PPIs and 300 mg of h2-blockers and Gaviscon as needed daily and I'm still not feeling okay. It's better, with this amount of medication, but I'm nowhere near back to normal.

I'm so concerned about the semester starting, I'm not sure how I'm going to try to keep up with classes when sometimes I can't fall asleep until the early morning. Had to call in sick to work today too, even though it messed things up for my coworkers. I was so dizzy all morning I could barely stand for more than 10 minutes at a time.

I'll have to wake up in 3 hours to call the GI's office to check in on test results and ask some questions. Being sick is like having a side job. Moonlighting as a professional patient :p
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Have you called your doctor about what is going on?
 
jcashen87, I hope you get answers soon. I can't imagine having GI problems most of my life, but know it happens, too often.
Cat, the steroids you are on are not as strong as some like pred, but steroids nonetheless. It could be just taking longer to work, but Doug never had increased appetite with your med either. It did work, slowly, though. I can't think of the name of it at present, but remember asking Doug awhile ago if that is the same one he takes occasionally, and it was. (He also just finished a course.)
We just got back from a family reunion/camping trip, something I don't care to repeat with walking plus GI problems and not close to bathroom facilities. I had more bathroom issues than Doug, by far. I also continue to have problems with cramping in legs/feet etc., especially at night, and wonder if anyone has had this problem as a result of lacking nutrients because of gut (diarrhea) issues? I have been using the tonic water (with quinine) my doc suggested in spite of also having heart issues and tinnitus, and my heart does race a little more and my ears ring more, but it is better than being in agonizing pain half the night.
I'm really sick of being slightly nauseated and having frequent bowel movements and the gassy, bloated feeling so many of us get. Between this and just life stresses, too many lately, I'm at the end of my ropes, and afraid to complain to any doctor because I know they will blame it on stress right now, and have had recent scopes (hence the gastritis and esophagitis diagnosis, which seem to have been treated correctly, plus the known extreme GERD, and "IBS" of course.) Still, I've had too many times things are blamed on stress. Of course, stress doesn't help, but I know it is not the cause of my GI problems. I do know that my GI thinks I have gastroparesis in addition to "IBS", and does take my complaints seriously generally, but never did any specific tests for gastroparesis either. Is that normal to tell someone they likely have it but not test? I'm just a little confused. And I hope this made sense because I am, well, stressed.
 
Izzie said:
I'm currently awake at 4 in the morning with really bad chest pains. Back pains, more like. This has been happening a few hours after I take Ranitidine for the past few days or so. I'm not sure what it is but I get nauseous, feel like I have a rock sitting in my stomach, and then I get the pain, it usually passes in 30 minutes but it's quite painful when it's happening.
It's too bad because the medication has been helping with my other symptoms. Though I will say that I find it absurd that I'm on 80 mg of PPIs and 300 mg of h2-blockers and Gaviscon as needed daily and I'm still not feeling okay. It's better, with this amount of medication, but I'm nowhere near back to normal.
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That sounds similar to what happened to me when my GI put me on Prilosec. I was already on Bentyl, which lowers stomach acid production, and the Prilosec made it so there wasn't enough stomach acid to digest food. I would eat and about 5 minutes later, my stomach was so painful and it felt like I had a brick sitting in there. I discontinued the Prilosec and it immediately went away. I was only on it for about 3 days. A lot of doctors will put patients on antacids without taking into account that most cases of acid reflux are caused by a lack of stomach acid instead of too much. My GI thought I had ulcers, but the upper GI endoscopy proved him wrong. I'm actually pretty sure I have hypochlorhydria and gastroparesis.

http://www.eatnakednow.com/13-signs-you-have-hypochlorhydria/
 
I seem to be having swallowing issues now. I have always had lower GI issues. I alway seem to be coughing/chocking on food. Had a few occasions when food seems too get stuck in my oesophagus, I try drinking something and it just gurgles on top of the food. Going to have a upper GI endoscopy to see what is happening.
 
Had a full blown migraine today. Told work I would try to sleep it off after taking the meds....pain in my head went after a while but I was so dizzy I couldn't have driven and we live 25mins out of town so I didn't end up going in at all. I am thankful my bosses have been good so far with my gut issues and migraines too. Only good thing is I won't have trouble with D for a day or so because I took codeine as well as the other meds and without fail it helps my D [emoji38]
 
Ron - The doctor was still on vacation returning tomorrow, so I'll have to wait. This only seems to be happening when I take Ranitidine though, so I'm just going to not take it today and see what happens. Hope you are well!

MissLeopard - I have a rather large hiatus hernia which is probably the root cause of my reflux. I don't think I ever had too much or too little stomach acid, I never had a problem prior to the hernia, but when you have a structural issue like mine it seems like stomach contents just go where they want. I'm not even slightly functional without meds and I was practically bed-ridden and ready to jump off the nearest tall structure before I was put on PPIs so I must say I'm a big fan of them :p

I don't think this is ideal though, and I am hoping for surgery moving forward but for now I can't do much but keep taking the medication because it is at least keeping me somewhat functional. Luckily this only seems to happen with Ranitidine and not my regular PPI dose (which doesn't rly do enough on its own, sadly).
 
Izzie said:
Ron - The doctor was still on vacation returning tomorrow, so I'll have to wait. This only seems to be happening when I take Ranitidine though, so I'm just going to not take it today and see what happens. Hope you are well!

MissLeopard - I have a rather large hiatus hernia which is probably the root cause of my reflux. I don't think I ever had too much or too little stomach acid, I never had a problem prior to the hernia, but when you have a structural issue like mine it seems like stomach contents just go where they want. I'm not even slightly functional without meds and I was practically bed-ridden and ready to jump off the nearest tall structure before I was put on PPIs so I must say I'm a big fan of them [emoji14]

I don't think this is ideal though, and I am hoping for surgery moving forward but for now I can't do much but keep taking the medication because it is at least keeping me somewhat functional. Luckily this only seems to happen with Ranitidine and not my regular PPI dose (which doesn't rly do enough on its own, sadly).
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Was at surgeon Monday to see if I needed hernia operated on. He asked about acid coming up. I had said no but noticed I had a little last night.
 
Strangely for me my main symptom when my reflux started was never actual reflux or heartburn. I had pain near my ribs on the left side and couldn't stop belching. As it's gotten worse I've also gotten the typical acid reflux symptoms - heartburn, chest pains etc.

In my country doctors seem very hesitant to perform fundoplication surgeries due to the risk of complications and unsatisfactory results. Though really, I'd be happy if I could just get to a point where the medication helps fully. I'm hoping I'll be able to see a surgeon for a consultation later this year, but I need some further testing regarding my esophageal motility first.
 
Ughhh. I'm still flaring. It's something like day 10 or 11 of being on the steroids and they apparently still haven't kicked in yet. Today I'm really pale, crampy, nauseous, weak, dizzy, exhausted, just feel awful. Getting seriously impatient for the Entocort to start working already.
 
Cat-a-Tonic said:
Ughhh. I'm still flaring. It's something like day 10 or 11 of being on the steroids and they apparently still haven't kicked in yet. Today I'm really pale, crampy, nauseous, weak, dizzy, exhausted, just feel awful. Getting seriously impatient for the Entocort to start working already.
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I know when I was taking Prednisone or Advair for asthma, it always made me feel REALLY hungry and really tired. Just generally unwell. I always hated taking them, but, before I found out I was Celiac, my asthma was completely out of control and I would get really bad bronchitis. Fortunately, my asthma hardly ever flares up and I haven't taken steroids in several years. I hope you feel better soon.

As for me, I woke up this morning wanting to go right back to bed. My left upper leg was crampy and sore. I'm on a very light period right now due to the progesterone shot (the second one I've had since being put on it in March) for endometriosis. I have to say that the cramps and pain are not nearly as bad as before I was on the shot. I finally talked myself into getting ready for work and I'm here. I'm looking forward to sleeping in tomorrow, but I have two doctor's appointments, as well. They are really spaced out - one at 9:45am and the other at 4pm. I keep trying to get the 4pm one moved up but no one has cancelled yet, so they asked me to call tomorrow to check.

Also, I started the Pepogest last night and also took some this morning. I'm not sure if I want to keep taking it because I felt a weird minty sensation in my throat, but it's enteric, so it's not supposed to open in the stomach. At least my breath is minty, but it feels weird.
 
Hi Cat,
Perhaps you should see your doctor, even your GP--you could have an infection in addition too, or rather, than a flare. You should have some blood work and stool samples done. I hope you feel better soon.
 
Yesterday at a neurologist appointment I started to get a migraine with classic migraine aura, and told the doc so as he came in. I also mentioned my stomach was more upset than normal because of the oncoming headache so did he have anything I could have (ie a basin) in case I did throw up. Before I knew it, he was out the door to get me a soda, came back, asked maybe two questions about my headache and what I take for them, told me he wanted me to have an MRI and instructions how to set it up, then was gone before I had a chance to ask a single question. I think he just didn't want me to throw up in his exam room. I get home, the headache allmost disappears, but my stomach has not recovered yet from the extra nausea, which has never happened before when the headache all but dissipates.
I want a life and don't think I'm ever going to get one. I was hoping I could handle camping, it about did both Doug and me in. Right now I'm at wits ends with my neuro problems and GI problems combined (not to mention multiple other things. I sometimes wonder what area I don't have a problem in). I would like to be able to go one night without having to run to the bathroom at least a couple times for a BM (as well as several times a day), without the "slight" nausea almost all the time, without my sleep disorders and headaches, without slower gait and weakness and almost constant ringing in the ears. I've noticed that lately I can't bend over without extreme gut pain and I have a high pain tolerance. I would like to be able to walk one half mile at a time without being sick for two days after. I'd like to be able to go with even just 20 mg Prilosec per day and not have acid reflux all night. I'd like to not have to take 21 different kinds of meds per day, most of them prescriptions, all doctor ordered, and most have several pills per prescription per day, and I don't know one I could remove without serious consequences. The heart meds? No. The seizure meds? Absolutely not. The stomach meds? Only if I want to live in the bathroom. Blood thinner? I don't want any more strokes or blood clots in my lungs. Diabetes meds? Not a good idea. The asthma meds? Only if I would don't want to breathe. Okay, I guess I could take out the multi vitamin and see what deficiency I come up with next.
Sorry, just had to rant. Feeling a little sorry for myself.
 
SandyUte, I don't have half of your medical issues and I've been feeling the same way the past few days just with my acid reflux issues. I hope there's relief for both of us soon!
 
The past few days I've had an upset stomach, frequent bathroom visits and a lot of gas and just feeling like I'm having constant mild food poisoning. I'm wondering if it's that I ate meat and somehow can't digest it well? In any case it's annoying and I don't know what to do to stop it or if I should bother the GI with it or not. I've had this twice in about 6 weeks or so. I feel like the more meds I take the more sensitive my entire system gets.
 
Izzie said:
The past few days I've had an upset stomach, frequent bathroom visits and a lot of gas and just feeling like I'm having constant mild food poisoning. I'm wondering if it's that I ate meat and somehow can't digest it well? In any case it's annoying and I don't know what to do to stop it or if I should bother the GI with it or not. I've had this twice in about 6 weeks or so. I feel like the more meds I take the more sensitive my entire system gets.
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I have found that steak bothers me.
 
Izzie said:
The past few days I've had an upset stomach, frequent bathroom visits and a lot of gas and just feeling like I'm having constant mild food poisoning. I'm wondering if it's that I ate meat and somehow can't digest it well? In any case it's annoying and I don't know what to do to stop it or if I should bother the GI with it or not. I've had this twice in about 6 weeks or so. I feel like the more meds I take the more sensitive my entire system gets.
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I cannot digest red meat very well and always end up with GI upset so I stay away from it and stick to chicken, turkey, and fish as much as possible. When you haven't eaten meat for a long time, your stomach isn't making as much acid as it would for digesting meat on a regular basis. When I was a vegetarian and then started to eat meat again, it was a very rough transition. I remember being sick for about 2 weeks. If it helps, you might want to try some digestive enzymes.
 
SandyUte I only have a tiny bit of your problems and I can feel very sorry for myself some days. Having chronic pain is mentally draining!
I can relate to the migraines having had a two day one this week, only took one day off work and the second day when I went to work it came back [emoji22]. One of my bosses is starting to make noises about how sick I've been the last year. I love where I work but that is stressing me as I can't control it.

Izzie I have that gas (burping) often when my whole system is upset and it is just like as if you have food poisoning ick. I also don't know how to fix it!

Today my guts flared [emoji31] and now tonight I have a lot of pain in my right side, mainly in the back kinda similar to what I felt when I had gall problems before I got it out. Not sure what is causing it but dang I hate that pain!!!
 

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