Undiagnosed Club Support Group

[Cat-a-Tonic]

Sandy, I completely sympathize with you, I get migraines with aura as well and I know they are no fun (I get the nausea as well, and also extreme sensitivity to light & sound plus the head pain). The last migraine aura I got, was actually my first full day in Japan! It was a great trip but at first it was not so fun. I had a bleeding hemorrhoid even before getting on the plane and I was passing blood quite a lot (I joined what I consider the IBD version of the "mile high club", I pooped blood on an airplane ha ha). So we got to Japan and I was not only bleeding but also I was super exhausted from the jet lag (I just don't sleep on planes so I had been awake for over 24 hours). So we got to the hotel, I felt awful but I managed to get some sleep, woke up the next morning, still bleeding, and as I was trying to eat a bit of breakfast in the hotel, I felt a migraine aura come on! I went back to my room and cried - I was feeling miserable and home was SO far away and we were going to be in Japan for 3 weeks, I didn't know how I could handle that and had a slight emotional breakdown. Then, though, basically a miracle happened. The aura went away and I didn't get a migraine! And within a day or so after that, I stopped bleeding and started feeling really well. So yeah, it could have been much worse, I was so glad it didn't turn into an actual migraine and was just a stand-alone aura for some odd reason (that's never happened before, I always get a migraine after an aura).

Happy, yeah, I see my GI on the 22nd anyway. I'm feeling slightly better today and went to work with the intention of working the full day (it's one of those days where I have to work all day, I'm covering for basically my whole department as everyone else had already requested the day off). So I'm thinking that I'll rest all weekend and will hopefully continue to feel better. If so, then I'll just wait until my GI appointment. If I feel worse or don't improve, I'll call my GI's nurse on Monday morning and let her know what's going on. Monday will be the 2 week mark since I started on the Entocort, and I know it can take up to a month to work. My GI appt will actually be the 4-week mark of how long I've been on Entocort, so my goal is really just to have it fully kicked in by then! I don't think I have an infection - my poo doesn't smell funny so it's likely not c diff, and there's no blood either. Hardly any mucus in fact! It's mainly just d, or if I take a Lomotil to slow down the d then it'll be more formed. It really just feels like a stubborn flare to me, I don't think it's anything more. I don't have a fever or anything like that, just my typical flare symptoms.

Izzie, I don't digest beef at all anymore. I stopped eating red meat when I was a teenager, and apparently because I haven't really eaten beef in 20+ years, my body has stopped producing the enzymes necessary to digest beef. If I try to eat beef, it feels like it just sits in my stomach and rots, it's a very uncomfortable feeling and it brings nausea along for the ride. Before my current flare, though, I'd been experimenting with other types of meat with pretty good results. I can eat lamb, I can eat bison. I also do a lot of chicken, fish, turkey. So maybe try other types of meat (in small amounts, and maybe try it when you don't have work/plans for the following day just in case it goes badly).

Anybody have plans for the weekend? I play to mostly rest. If I get ambitious then I might do a bit of sewing. I have a ridiculous amount of sewing projects that have piled up lately - I have some pants to alter, I have some pillowcases to sew, I have some random things like a jacket that needs to be taken in as it's too big, a dress that's too small (I might turn that into a top with a peplum as it's too tight in the hips area), oh and I have a quilt that I want to make for my cousin's new baby, and I want to try sewing some mittens from old sweaters. So yeah, I might start tackling some sewing projects! That's something that isn't too strenuous and makes me feel worthwhile.

 

[Wildmtnhoney]

Good(ish) news, I emailed the new GPs office, and they put in a referral for a Rheumatologist for me, and that office should call next week to schedule an appointment re: Sjogren's.

In the meantime, I'm just hanging in here. I actually nearly NEEDED the stupid depends twice yesterday. I'm pushing my luck being out and about during the day because of them, and barely made it home and in the bathroom in time, and once had to make an emergency stop at a starbucks (thank goodness I was in a familiar neighborhood!). Yet I am still making plans for today! I guess I'm not learning, or am just getting stubborn.

At the same time, I have been approved for forbearance of my student loans due to medical reasons, and while that relieves a financial burden, it made me cry out of frustration, because I *want* to be working! I've even applied for a few jobs this week. All are a bit "pie in the sky" because I need them to be flexible with ability to work from home, and set my own hours, but I figure the worst that can happen is I stay unemployed. I'm also still waiting on a disability hearing - it's been a year since I appealed my denial. So it feels funny to apply for jobs while also saying I'm disabled. But I feel I have to do something.

 

[Cat-a-Tonic]

Wildmtn, I think it's good to be stubborn. You're showing the illness that you're going to live your life in spite of what it throws at you. I say good for you!

As for disability, I read somewhere on the forum that it's almost always universally rejected the first two times that you try, but on the 3rd try they tend to take it more seriously. I've also read that getting an attorney involved can help expedite the process, but I don't know how much that would cost. Oh, and the final tidbit of wisdom that I've read about disability, is to describe your symptoms as if it were your worst-ever day with your health issues. Don't put down on the paperwork what a standard day looks like for you, put down what your worst day looks like.

 

[jcashen87]

Guts are back to being full-on painful, waking me up at night. My fatigue is a little better. Although this morning i noticed a little blood in my stool again, along with the normal mucus. I am nervous about the prep for my colonoscopy, if I miss a meal I feel weak. But I Know I need answers and this is the best way to fully understand what is going on in me.

 

[SandyUte]

I have to add I was on disability for many years when they arbitrarily decided I wasn't disabled (long story, but basically because I had a case worker with a bee up her butt). And yes, having an atty involved makes a huge difference, and they take their fee out of the back pay you get (words because of stroke and stress right now are not staying well with me lately, can't think of the term for this), so you don't have to pay anything up front. Because my situation was different and I had already been on disability for a lot of years, we didn't get a lawyer (because they couldn't guarantee they would get paid like they pretty much can in new situations they take on), but I had a doctor who went to bat for me, made all the difference in the world, and eventually my SSI was reinstated after a long fight. But be aware, if you do get a job, they will hold that against you. All my battle happened right at the beginning of when I was put on oxygen from pulmonary embolism, and our appeal was still a huge battle, however. But fight is what you should do for whatever you feel is right! (And it's so hard when not well).
My lovely plans (NOT!) this weekend are to see my mother off who is moving to Indiana and I may never see again while she is alive because she is declining rapidly with dementia and is 87 years old and I can't look after her anymore without help. (She's moving where a sister will look after her. ) I've also been dealing with a large extended family in the area right now from all over who have done some things that have really ticked me off and I'm about to disown the lot of them. They treated a brother's (with brain damage) girlfriend very rudely (because she's a little odd herself, like my brother, and over a bathroom issue, ironically, where she had diarrhea and needed a bathroom desperately, but her behavior scared some kids) over last weekend on family reunion camping trip, so when I was nice to her they are now snubbing me. They were also rude to Doug because they thought he should do more when my turn to be in charge of dinner, but he was sick because of their food, and I needed him to keep our dog out from underfoot, plus he does about everything at home so I was trying to give him a break. During this messed up trip after we were evacuated from first campsite due to a wildfire, there was a mixup on whether a dinner in my mom's honor planned for last Monday would be held. It was, but it was a miracle my mom got there for that day due to mix up, one sister felt hurt when she didn't get message dinner was still on so planned another dinner for yesterday which I was told was canceled, but they, including ones who went to other dinner, still had this one and this time I wasn't invited. I'm ready to disown almost all of them for one reason or another.
Sorry, still grouchy.
Oh, the migraine aura without headache after is called either silent migraine, or ocular migraine.
I also get to have an MRI Saturday to see if there are any changes in small benign cyst on pituitary gland in head which could be causing the headaches. It shows up sometimes, not others, depending on who doing the scan. I was originally told "you have a brain tumor and I'll see you in three weeks" (at another clinic years ago), part of the reason I hate doctors.
Sorry so long.

 

[SandyUte]

Guts are back to being full-on painful, waking me up at night. My fatigue is a little better. Although this morning i noticed a little blood in my stool again, along with the normal mucus. I am nervous about the prep for my colonoscopy, if I miss a meal I feel weak. But I Know I need answers and this is the best way to fully understand what is going on in me.

If waking you up, you definitely need the scope. I have diabetes and was nervous about missing meals, but Gatorade helped, tho many finding it harder to drink because of association with scopes. Good luck, let us know how it goes.

 

[Cat-a-Tonic]

Sandy, that sounds like a whole lot of stress, I'm sorry. I hope your weekend goes as smoothly and as stress-free as possible.

As for Gatorade, I'm drinking some right now. I definitely associate the light/clear colors (lemon or that clear/white cherry flavor) with prep, and I don't have those flavors at any time except for when I'm doing prep. I associate the other colors, like red and purple, with flares. So since I'm flaring, I'm having a red one right now. I feel like I need the electrolytes anyway, I feel like I've been fairly dehydrated at times with this flare.

Speaking of that, I think the flare is improving - I was able to eat a snack earlier today with no cramping/d/nausea afterwards!! So now I'm eating a sandwich to see how that goes. So far so good.

jcashen, don't worry too much about the prep. It is admittedly the worst part of the whole thing (the scope itself is a breeze because of the sedation, it just feels like taking a nice nap with no memory of the scope). There are a couple of preps that aren't too bad - ask your doctor about Prepopik or the Gatorade & Miralax prep, both of those are not vile to get down. I suggest you read through this thread as it has a lot of good tips for doing prep:
http://www.crohnsforum.com/showthread.php?t=44105

 

[Izzie]

The way I got through colonoscopy prep was by rinsing my mouth with apple juice in between sips of the prep. I couldn't really DRINK the juice because there was just too much liquid but it helped get the nasty flavor out as I wasn't allowed to mix my prep with anything but water.

 

[Izzie]

Very frustrated today. My cough is coming back and it's a very distressing symptom for me. At least this time I have hope that it can and will go away since it was essentially gone for a month. Not sure what I've done to set it off this time but I'm pretty sure it's dietary. It's strange, my reflux symptoms have always been like this. It cycles through good, bad, almost gone, good again, bad again etc. without discernible cause.

I did slip up and have milk like a week ago, and I've had red meat twice this week, so I'm hoping that's the cause. I think I need to cut out more foods and figure out when to take my meds for best effect. Right now I space them out maybe a bit too much.

I think I just relax when I feel better and slip up here and there and then it adds up. I'll have a carbonated drink one day, a sip of my friend's coffee, a bite of chocolate etc. and I just cannot do that. When I feel well I forget how very not worth it it is and then I get sick and remember and it takes weeks and weeks to get back on track...

It does convince me however that I feel psychologically quite well when I'm healthy. It's only when the symptoms come back that I get really anxious and feel down.

Easier this time than the last, I was thinking I would cough like this for the rest of my life. But it's gone away before and it will again!

 

[ronroush7]

Very frustrated today. My cough is coming back and it's a very distressing symptom for me. At least this time I have hope that it can and will go away since it was essentially gone for a month. Not sure what I've done to set it off this time but I'm pretty sure it's dietary. It's strange, my reflux symptoms have always been like this. It cycles through good, bad, almost gone, good again, bad again etc. without discernible cause.

I did slip up and have milk like a week ago, and I've had red meat twice this week, so I'm hoping that's the cause. I think I need to cut out more foods and figure out when to take my meds for best effect. Right now I space them out maybe a bit too much.

I think I just relax when I feel better and slip up here and there and then it adds up. I'll have a carbonated drink one day, a sip of my friend's coffee, a bite of chocolate etc. and I just cannot do that. When I feel well I forget how very not worth it it is and then I get sick and remember and it takes weeks and weeks to get back on track...

It does convince me however that I feel psychologically quite well when I'm healthy. It's only when the symptoms come back that I get really anxious and feel down.

Easier this time than the last, I was thinking I would cough like this for the rest of my life. But it's gone away before and it will again!

Do you have acid reflux? I think that used to make my wife cough after she ate.

 

[Izzie]

Do you have acid reflux? I think that used to make my wife cough after she ate.

Indeed I do. But already maxed out on meds, so there's not much I can do other than wait it out and eat very reflux friendly foods...

 

[ronroush7]

Indeed I do. But already maxed out on meds, so there's not much I can do other than wait it out and eat very reflux friendly foods...

Best wishes.

 

[MissLeopard83]

Very frustrated today. My cough is coming back and it's a very distressing symptom for me. At least this time I have hope that it can and will go away since it was essentially gone for a month. Not sure what I've done to set it off this time but I'm pretty sure it's dietary. It's strange, my reflux symptoms have always been like this. It cycles through good, bad, almost gone, good again, bad again etc. without discernible cause.

I did slip up and have milk like a week ago, and I've had red meat twice this week, so I'm hoping that's the cause. I think I need to cut out more foods and figure out when to take my meds for best effect. Right now I space them out maybe a bit too much.

I think I just relax when I feel better and slip up here and there and then it adds up. I'll have a carbonated drink one day, a sip of my friend's coffee, a bite of chocolate etc. and I just cannot do that. When I feel well I forget how very not worth it it is and then I get sick and remember and it takes weeks and weeks to get back on track...

It does convince me however that I feel psychologically quite well when I'm healthy. It's only when the symptoms come back that I get really anxious and feel down.

Easier this time than the last, I was thinking I would cough like this for the rest of my life. But it's gone away before and it will again!

Sorry about your cough. I'm having the same thing going on and I went to see my GP today because I've been having headaches when I cough. I thought the headaches were the result of a sinus infection, but she said that she didn't see any sign of one. She thinks that my cough is related to my cryptic tonsils and/or acid reflux. She told me to take Prilosec, but I told her that it caused horrible stomach pain for me. She asked if H2 inhibitors do the same thing, but Pepcid has never caused a problem. She told me to take it daily for 2 weeks and see if that helps.

 

[Izzie]

Sorry about your cough. I'm having the same thing going on and I went to see my GP today because I've been having headaches when I cough. I thought the headaches were the result of a sinus infection, but she said that she didn't see any sign of one. She thinks that my cough is related to my cryptic tonsils and/or acid reflux. She told me to take Prilosec, but I told her that it caused horrible stomach pain for me. She asked if H2 inhibitors do the same thing, but Pepcid has never caused a problem. She told me to take it daily for 2 weeks and see if that helps.

Sorry to hear that you're dealing with the same! Coughing is irritating, I have a very social job and have to use my voice a lot, and sitting in class isn't so great when you're clearing your throat every 30 seconds either... I hope it passes with the new meds!

Personally I'm just crossing my fingers that I'll get to see a damn surgeon soon because it doesn't seem to matter how much medication I am on, things aren't getting much better...

 

[MissLeopard83]

Days like today really suck. I woke up feeling low in energy and just generally fatigued. I tried cleaning up my room as it was driving me crazy all week, but I was only able to spend about 2 hours doing it before feeling like I needed a nap. I keep getting hot flashes, which made me think I was getting a fever, but my temp is 99.3, so it's borderline. To top it off, my mom got on to me for not taking the dog for a walk while she was out all day. Unfortunately, I still live at home since my bills have been stacking up and I haven't had time to look for a place to live. I want to move but I'm worried about debt. Anyway, with the way I was feeling and the fact that it was over 100 degrees outside, there was no way I was going outside for a walk since I don't tolerate heat very well.

 

[ronroush7]

Days like today really suck. I woke up feeling low in energy and just generally fatigued. I tried cleaning up my room as it was driving me crazy all week, but I was only able to spend about 2 hours doing it before feeling like I needed a nap. I keep getting hot flashes, which made me think I was getting a fever, but my temp is 99.3, so it's borderline. To top it off, my mom got on to me for not taking the dog for a walk while she was out all day. Unfortunately, I still live at home since my bills have been stacking up and I haven't had time to look for a place to live. I want to move but I'm worried about debt. Anyway, with the way I was feeling and the fact that it was over 100 degrees outside, there was no way I was going outside for a walk since I don't tolerate heat very well.

Sending support

 

[Izzie]

I'm starting to think I have SIBO or something. I feel so bloated and nauseated and awful all the time and I have something approaching the dreaded D that's getting worse by the day, I've probably gone to the bathroom 20 times today. And it's just different, you know how when your bathroom habits suddenly change and even if you're not horribly sick, you know something is Up.

I really don't want to have to call the GI for this, but if it's not better in a few days I'm going to have to.

What can help a minor stomach... infection or whatever, anyway? Probiotics?

 

[ronroush7]

If you have the D's, try Imodium

 

[MissLeopard83]

I'm starting to think I have SIBO or something. I feel so bloated and nauseated and awful all the time and I have something approaching the dreaded D that's getting worse by the day, I've probably gone to the bathroom 20 times today. And it's just different, you know how when your bathroom habits suddenly change and even if you're not horribly sick, you know something is Up.

I really don't want to have to call the GI for this, but if it's not better in a few days I'm going to have to.

What can help a minor stomach... infection or whatever, anyway? Probiotics?

I always found that Kaopectate settled my stomach and gut better than Imodium ever did. Usually, when I took Imodium, I'd have to take Pepcid, too, but the Kaopectate settles the stomach and intestines. It's bismuth-based which is the same ingredient in Pepto-Bismol (my mom used to give me PB when I was a child and had stomach upset and it always worked but Imodium was a hit or miss).

I think it's a good idea to consult with your GI because, if you have SIBO, you need to have the breath test done to confirm and then be placed on Xifaxan to clear it up or another non-absorbed antibiotic. You probably already know but SIBO can exacerbate intestinal problems.

Hope you feel better soon.

 

[ronroush7]

I always found that Kaopectate settled my stomach and gut better than Imodium ever did. Usually, when I took Imodium, I'd have to take Pepcid, too, but the Kaopectate settles the stomach and intestines. It's bismuth-based which is the same ingredient in Pepto-Bismol (my mom used to give me PB when I was a child and had stomach upset and it always worked but Imodium was a hit or miss).

I think it's a good idea to consult with your GI because, if you have SIBO, you need to have the breath test done to confirm and then be placed on Xifaxan to clear it up or another non-absorbed antibiotic. You probably already know but SIBO can exacerbate intestinal problems.

Hope you feel better soon.

I also hope you feel better soon.

 

[SandyUte]

Izzie, IMO probiotics can help some, depending on where the problem lies. I was getting so many infections at one point (GI and otherwise) that I was put on a six month course of antibiotics, then started to get yeast infections. The probiotics really helped with that, but you have to be careful to get some that are properly packaged, stored and freighted in conditions that don't damage their useful properties. Some brands also work better for one person than another, and vice versa. I know when I tried a different brand from my original which worked well, the other not so much, but both were respected brands.
This sounds awful to say, but all out of state family have now gone, and other than my mother, it is almost a good riddance to some, family or not. In the mean time, I had an MRI my neuro scheduled (yes, on a Saturday!) and found it so relaxing compared to the rest of this past week or so, I almost fell asleep, lol. (The MRI was just a routine one I have periodically to make sure my brain is still there, ha ha.) My migraine decided to finally appear full fledged today right after, but I'm grateful it waited until after we said our goodbyes to my mom. I also found my mom more lucid and more motherly than I have almost ever seen her, so that was a nice way to say goodbye, with good memories. I slept all afternoon and now doing much better. (Plus a little dopey,so I don't care as much. ) I wish some of you could find some relief.
Hugs to all.

 

[Izzie]

Sandy, you know you're used to hospitals when you can find an MRI relaxing

 

[SandyUte]

That's the first time I've been relaxed for an MRI, but like I said, compared to dealing with my family... although things have calmed down a lot...
In the middle of the night I got a whole new migraine aura and one of the worst ever headaches. Still not well physically, but sure will be a lot better tomorrow. Hope you are recovering.

 

[MissLeopard83]

Today has been an afternoon and evening of running back and forth to the bathroom with diarrhea several times. I took 3 Kaopectate caplets and had another 2 bouts of diarrhea afterward. The Kao helped with my crampy stomach, though, but I don't know what is going on with the crampy gut. The only thing that changed recently is the fact that I'm taking Align. I have not yet taken Linzess because I have not been constipated since Friday. My BMs are a weird orange-clay color, too, so I don't know what's going on.

Anyway, I plan to call my GI office tomorrow to see if there are any updates on the insurance approval for my CT enterography. I hope it will happen soon so I can put in my time-off request.

 

[ronroush7]

Today has been an afternoon and evening of running back and forth to the bathroom with diarrhea several times. I took 3 Kaopectate caplets and had another 2 bouts of diarrhea afterward. The Kao helped with my crampy stomach, though, but I don't know what is going on with the crampy gut. The only thing that changed recently is the fact that I'm taking Align. I have not yet taken Linzess because I have not been constipated since Friday. My BMs are a weird orange-clay color, too, so I don't know what's going on.

Anyway, I plan to call my GI office tomorrow to see if there are any updates on the insurance approval for my CT enterography. I hope it will happen soon so I can put in my time-off request.

Hope all works for the best for you.

 

[ShellK]

Had a sleep test last night do ongoing fatigue.....worst night sleep in ages! Came home and thankfully it was my day off so I could nap. Thankfully the days D didn't kick in until I got home curtesy of being up and out of the centre by 5.30, than an hours drive home .

 

[Cat-a-Tonic]

MissLeopard, orange stools for me always seem to indicate inflammation. When this flare started, my stool was very orange. It's slowly become less orange and more normal/brown as the steroids have sloooooooowly started working.

On that note, I'm still only doing so-so. But I'm better than I was. So I'm torn as to whether I should call the doctor now or just wait for my appointment in 2 weeks. I'm thinking I'll wait, because some slow improvement is still improvement. And I've only been on the steroids for 2 weeks and I know they can take up to a month to work. So I guess I just need to continue to try to be patient (or, more realistically, be impatient and whine about it). My co-worker came by my desk a little while ago and commented on how I still don't look well. Gee, that's because I still don't feel well. My patience is definitely on the fritz.

Edited to add: I decided to bite the bullet and contact my GI's office. I emailed him (usually his nurse answers his emails but she's very good). I let my GI/his nurse know that I'm still feeling pretty unwell 2 weeks into the steroid regimen. Also, I mentioned to them that it's disconcerting to me that I haven't had any headaches. Usually Entocort gives me frequent, strong headaches. I haven't had a headache at all so far though this time around. I raised the possibility in the email that I'm afraid I may have either got a bad batch or a placebo. We'll see what my GI or his nurse has to say.

 

[MissLeopard83]

MissLeopard, orange stools for me always seem to indicate inflammation. When this flare started, my stool was very orange. It's slowly become less orange and more normal/brown as the steroids have sloooooooowly started working.

This small bowel scan can't come soon enough. I was really in a bad way yesterday and my gut would not stop cramping. I finally had to take some Kaopectate and hope for the best, but I ended up seeing mucus later. I really would not be surprised to hear that the inflammation is hiding in my small bowel. The color was a weird orange-clay - that's the best way I can describe it. It was definitely not the typical brown and it was really watery. It kind of reminds me of the diarrhea spells I would get before I went gluten-free. They were a pale clay color.

 

[MissLeopard83]

I just got a call from my the imaging department owned by my GI group and they set up the CT enterography scan this week on Friday at 10:30am. I have to arrive at 9am to drink the oral solution and have the IV line put in for the contrast.

 

[ronroush7]

I just got a call from my the imaging department owned by my GI group and they set up the CT enterography scan this week on Friday at 10:30am. I have to arrive at 9am to drink the oral solution and have the IV line put in for the contrast.

I wish you the best

 

[jcashen87]

Hope you find answers MissLeopard. Cat I hope you feel better soon.

I go in for my colonoscopy Thursday. Tomorrow morning I start fasting. I have always forced myself to eat even when I barely wanted to for fear of losing more weight. Missing meals is gonna suck!

I've got mucus and little bits of blood back in my stool. My guts are more tender and hurt more the past 5 days or so. I guess if the inflammation is active at least they'll see it right away in this first test and get me on meds hopefully. Hopefully it's not all hiding in my small bowel if I have this. I don't want to wait longer. I can't keep feeling so fatigued and anxious over why my body has taken a nose dive.

 

[ronroush7]

I hope everyone feels fine soon.

 

[Cat-a-Tonic]

jcashen, good luck with the scope. Make sure that they know to take biopsies, as some things can only be found on biopsy. You might also want to let them know that you've been bleeding, so they can keep an eye out for the source of the bleed. Keep us posted on how the prep and scope go!

MissLeopard, the CT contrast in the IV is very disconcerting. It gives you a feeling of a lot of warmth "down there", it honestly feels like you've wet your pants! So be prepared for that, it's not too bad as long as you know to expect for that feeling to happen (and it doesn't last long, maybe 30 seconds to a minute). Good luck with your CT and let us know how that goes!

As for me, I'm not really doing much better. Still pale, nauseous, exhausted, generally feeling crappy. My GI's usual nurse must be on vacation because a different nurse responded to my email and it only said that I should call her. Ugh, that's worthless. I'll try to call that nurse on my lunch break today but I'm not expecting her to be much help. I see my GI on the 22nd so I'm just hoping I can manage okay until then.

 

[MissLeopard83]

jcashen, good luck with the scope. Make sure that they know to take biopsies, as some things can only be found on biopsy. You might also want to let them know that you've been bleeding, so they can keep an eye out for the source of the bleed. Keep us posted on how the prep and scope go!

MissLeopard, the CT contrast in the IV is very disconcerting. It gives you a feeling of a lot of warmth "down there", it honestly feels like you've wet your pants! So be prepared for that, it's not too bad as long as you know to expect for that feeling to happen (and it doesn't last long, maybe 30 seconds to a minute). Good luck with your CT and let us know how that goes!

As for me, I'm not really doing much better. Still pale, nauseous, exhausted, generally feeling crappy. My GI's usual nurse must be on vacation because a different nurse responded to my email and it only said that I should call her. Ugh, that's worthless. I'll try to call that nurse on my lunch break today but I'm not expecting her to be much help. I see my GI on the 22nd so I'm just hoping I can manage okay until then.

I wonder if I should wear some disposable underwear just in case! :lol2:

I've never had a CT before (I don't think). According to their website, the scanner is open (more open than an "open" MRI) because you can see all around you which makes me feel better about claustrophobia. I took the whole day off work since it will take at least an hour for the scan. I know some people who feel yucky after the contrast, so I'm going to allow myself time to recuperate. I'm really hoping this gives me the answers I've been looking for.

Cat, do you think the symptoms you're having are related to the prednisone? I know it made me feel really ill when I took it and RAVENOUS! I could not stop eating. I was on prednisone so much as a teenager that I think I developed Cushing's which reversed itself when I discontinued the steroids. I've still got the characteristic "buffalo hump" on the back of my neck.

 

[Cat-a-Tonic]

I don't think you'll need disposable underwear. It just makes you feel like you've peed yourself, but I don't think there's any risk of actually peeing yourself. And yeah, I've had a couple CT scans now and the scanners are very open and much faster than an MRI (the downside, of course, is that you get radiation with a CT but you do not with an MRI).

Oh, and yes, I forgot to mention that part! You mentioned possibly feeling yucky after the contrast. Yes, do plan for that - the contrast gave me wicked diarrhea. I barely made it home without messing my pants, in fact (on second thought, you may want to do disposable underwear/depends after all). For me it came on suddenly and it was very urgent and very watery, so have some cream and wipes on hand. And of course the urgency hit me as I was getting out of the car - I had to scramble to find my house key and rush to the bathroom!

As for steroids, I'm on Entocort, not prednisone - Entocort is specifically for IBD and it's milder than pred (pred is systemic so you get tons of side effects - Entocort is more topical than systemic, it has a special coating so it releases at the terminal ileum and colon area). But yeah, the last couple times I was on Entocort, I did get ravenously hungry. This time around, so far I really don't have much appetite at all, and I'm kind of forcing myself to eat. I don't think the Entocort has kicked in yet, though. Once it kicks in then I should be eating everything in sight.

 

[MissLeopard83]

I, unfortunately, had to call off work this morning. I woke up really early this morning and just felt weird, like my head was disconnected from my body - really lightheaded. I went back to bed again after going to the bathroom thinking I was just tired, but when I woke up at 6am to get ready for work, I still felt really lightheaded and also nauseous. I took my blood pressure thinking it was low or something, but it was 117/80 (normal) and I wasn't running a fever. I'm not sure what caused it, but I felt horrible. I hate calling off work and have only done it one other time back in April when I had a nasty GI bug.

Anyway, I just woke up a little while ago with a headache and realized I hadn't taken my morning meds besides my thyroid pill. I tried to eat something but my headache is getting worse. And worst of all, I'm missing the open enrollment for insurance today. The other day to attend is Friday, but I won't be there due to my CTE scan. This sucks.

 

[MissLeopard83]

Also, I felt really fatigued during the last hour of work yesterday. It hit me all of a sudden and I thought I was going to fall asleep at my desk. I hate when that happens and I can't stand not knowing what's causing it.

 

[ronroush7]

Also, I felt really fatigued during the last hour of work yesterday. It hit me all of a sudden and I thought I was going to fall asleep at my desk. I hate when that happens and I can't stand not knowing what's causing it.

Do you take iron/b12? Have you had your blood checked?

 

[MissLeopard83]

Do you take iron/b12? Have you had your blood checked?

Both were normal back in April. I was experiencing the same symptoms of fatigue and dizziness then. I saw an ENT thinking I had an inner ear problem but he didn't really check me out that well and said I probably had benign positional vertigo. Vertigo does not cause fatigue, though.

 

[ronroush7]

Both were normal back in April. I was experiencing the same symptoms of fatigue and dizziness then. I saw an ENT thinking I had an inner ear problem but he didn't really check me out that well and said I probably had benign positional vertigo. Vertigo does not cause fatigue, though.

Wonder why he would say that.

 

[Cat-a-Tonic]

MissLeopard, in my experience vertigo can absolutely cause fatigue. I had labyrinthitis 2 years ago (basically, inner ear inflammation which causes horrendous vertigo) and it made me terribly fatigued. My brain had to work overtime, every second of every day my brain was trying to figure out where it was in space because it was getting incorrect info from my inner ear. That's incredibly exhausting! I was told to walk as much as I could because that would help me recover, it'd help my brain re-learn where I was in space and how to balance and all that. So for several weeks, I was off of work, and my husband would drive me to a store and we'd slowly walk a lap of the store, me with my cane for stability. It'd take about an hour to do one slow lap. And that would be all I could do for the day, that amount of slow walking utterly exhausted me when my vertigo was that bad. So in my experience, yes, vertigo definitely can cause fatigue!

 

[Cat-a-Tonic]

I should give an update on how I'm doing today. Holy cow, I feel like a human being! I have an appetite, I'm not nauseous, I'm not crazy exhausted, my guts are pretty calm, oh and I have the start of a headache (which is actually a good thing because it likely means that the steroids are kicking in FINALLY - I tend to get recurrent, terrible headaches/migraines from Entocort). It took awhile but I think I'm finally on the road to saying goodbye to this flare-up. Phew!

 

[jcashen87]

I'm starting my bowel prep later this afternoon. Jell-O sucks! I wish I liked it but I'm forcing some down. I've been so weak and crappy feeling the past month and a half but I always manage to eat. I go in at 9 AM for the scopes. So I have to wake up at 3 to do the second part of my prep juice.

Never been put under before, my anxiety has been so bad I get anxiety over being in well trained Dr's hands. Stupid I know but when my health is compromised I just have crazy anxiety over every little thing to do with my body. My gut has been kicking my ass the past week so my motivation to get through this is to finally know what's going on.

Best to you all in this forum.

 

[ronroush7]

I'm starting my bowel prep later this afternoon. Jell-O sucks! I wish I liked it but I'm forcing some down. I've been so weak and crappy feeling the past month and a half but I always manage to eat. I go in at 9 AM for the scopes. So I have to wake up at 3 to do the second part of my prep juice.

Never been put under before, my anxiety has been so bad I get anxiety over being in well trained Dr's hands. Stupid I know but when my health is compromised I just have crazy anxiety over every little thing to do with my body. My gut has been kicking my ass the past week so my motivation to get through this is to finally know what's going on.

Best to you all in this forum.

Best to you also.

 

[Cat-a-Tonic]

jcashen, I know it's easier said than done, but try not to worry too much. As you said, you're in good hands with experienced doctors. They will monitor you throughout the scope and make sure that everything goes okay. I've had 5 scopes with sedation now and my doctors and nurses took great care of me every time.

What probably will be best for you right now is some distraction - this should help both the anxiety and it will keep you distracted from the unpleasantness of doing prep. Watch a favorite movie or show or read a good book, play a video game, whatever helps take your mind off of things and helps you to relax a bit. Take some deep breaths and do something nice for yourself.

And yeah, Jello sucks. What flavor are you having? I think I had mango last time and it was fairly gross.

 

[jcashen87]

Thank you Cat, so far I have managed to enjoy myself at home and keep my mind off it. That really is the best thing for me, to just be doing something that keeps my mind occupied. Bonus if I enjoy it!

I have the green stuff in the little pudding cups, my wife is going to make some other flavors later

 

[MissLeopard83]

MissLeopard, in my experience vertigo can absolutely cause fatigue. I had labyrinthitis 2 years ago (basically, inner ear inflammation which causes horrendous vertigo) and it made me terribly fatigued. My brain had to work overtime, every second of every day my brain was trying to figure out where it was in space because it was getting incorrect info from my inner ear. That's incredibly exhausting! I was told to walk as much as I could because that would help me recover, it'd help my brain re-learn where I was in space and how to balance and all that. So for several weeks, I was off of work, and my husband would drive me to a store and we'd slowly walk a lap of the store, me with my cane for stability. It'd take about an hour to do one slow lap. And that would be all I could do for the day, that amount of slow walking utterly exhausted me when my vertigo was that bad. So in my experience, yes, vertigo definitely can cause fatigue!

Hmmm, didn't think of that. I think another part of my problem is that now that I have a bathroom in my office, I no longer need to get up and walk to the bathroom. That means that I'm sitting at my desk more, so I need to get up and walk around just to get the blood pumping. I also need to exercise more.

Anyway, I'm feeling a little bit better after taking another nap. I'm making some late lunch since my stomach is growling. I'm hoping to rest again later. I think part of the fatigue is the fact that I may not have been getting enough sleep at night. Either way, I'm hoping I feel better tomorrow morning so I can get back to work.

 

[Cat-a-Tonic]

Yes, MissLeopard, walk as much as you can. If you have one of those fitness trackers or a step counter on your phone, that can help motivate you to reach a goal of walking a certain amount of steps per day. I find that definitely helps me, and the more I walk, the better I tend to feel (when I was in Japan earlier this year, I was walking an average of 8-10 miles every day, and my guts felt fantastic). Where I work, there's bathrooms on each floor. I work on the 3rd (top) floor of the building. Sometimes, if I want to get some walking in and get my blood moving, I'll walk downstairs to the basement, use the bathroom down there, and then walk back up the stairs to my desk. There's a gym in the basement, too, so if I'm really motivated to walk then I'll even spend a few minutes on the treadmill while I'm down there. So if there's things like that that you can do at your workplace, definitely do them. Since you have your own office, presuming it gives you a bit of privacy and isn't all glass windows, you could do things like squats, lunges, tricep dips from your desk chair, etc right in your office when you feel the need to get your blood moving a little bit. Any exercise you can do, even if it's just little bits here and there, will be beneficial. I can't wait to get back into exercising myself, this flare has kept me away from the gym for too long!

jcashen, eww, green jello! I think the only worse flavor is lemon (probably because I associate that with colonoscopy prep too!). Yeah, that stuff is not great. If your wife is making you "food" during your clear liquid diet, see if she could make you something like clear chicken broth (obviously just the broth, no pieces of chicken, but broth itself should be fine). That's almost like eating soup and has a fair bit of sodium, which you lose when you're having diarrhea. That's my go-to "food" when I'm prepping. Glad to hear you're doing well with the distractions! Keep us posted on how things go tonight and tomorrow.

 

[MissLeopard83]

I just got done eating and I feel lightheaded again after being up for about an hour. I finally gave up and took some meclizine to see if that helps. I know it's going to make me tired again, so I'm planning to lay down in a little bit. I'm not sure what's going on but my blood pressure was a little elevated the last time I took it (128/75). It's not too bad, but it should be lower if I've been resting all day.

 

[Cat-a-Tonic]

Meclizine was the med that they prescribed me when I had labyrinthitis. I didn't like it, though, it made me SO tired. I took like 3 naps a day but I also don't feel like it did much for my vertigo. (I think I read somewhere that it's basically just prescription-strength dramamine). It's apparently the only med that does anything at all for vertigo, though. I have a relative who has chronic/recurrent labyrinthitis and she swears by Meclizine. She even drives when she's taken it (I would be afraid that I'd fall asleep behind the wheel!). So yeah, I am leary about taking that stuff just because it makes me so ridiculously drowsy. I don't think it affected my BP ever though. Hope you feel better soon and have a good nap!

 

[SandyUte]

I should give an update on how I'm doing today. Holy cow, I feel like a human being! I have an appetite, I'm not nauseous, I'm not crazy exhausted, my guts are pretty calm, oh and I have the start of a headache (which is actually a good thing because it likely means that the steroids are kicking in FINALLY - I tend to get recurrent, terrible headaches/migraines from Entocort). It took awhile but I think I'm finally on the road to saying goodbye to this flare-up. Phew!

I still have a migraine, I don't have an appetite except to stop the sugar lows, (very bad one last night) have D, I'm nauseous, I'm crazy exhausted, my ears are ringing like crazy, my muscles keep spasming, and I can't stand chicken broth, but do still like green and yellow Jell-O.

I'm NOT human anymore.

 

[jcashen87]

I still have a migraine, I don't have an appetite except to stop the sugar lows, (very bad one last night) have D, I'm nauseous, I'm crazy exhausted, my ears are ringing like crazy, my muscles keep spasming, and I can't stand chicken broth, but do still like green and yellow Jell-O.

I'm NOT human anymore.

Weird my muscles have been spasming for like a few weeks. I was thinking maybe low iron was doing it to me. I try to stay pretty hydrated through everything I am going through.

 

[ronroush7]

Weird my muscles have been spasming for like a few weeks. I was thinking maybe low iron was doing it to me. I try to stay pretty hydrated through everything I am going through.

Not sure but it might have to do with enough potassium in your system.

 

[Cat-a-Tonic]

What muscles specifically are spasming for you two? I sometimes get bad toe & foot spasms/cramps, and apparently that indicates low potassium. Also, apparently sweating can be enough to drop potassium from borderline to low. During the times that I'm able to work out regularly, I often find myself having toe/foot cramps right at the end or immediately after a workout. Forget protein shakes after a workout, apparently I need potassium shakes!

Sandy, I'm so sorry to hear you still aren't feeling well at all. That really sucks. I hope you can start feeling at least somewhat human, soon. Do your migraines respond to anything? I get sinus migraines sometimes (especially when I'm on Entocort), and I've found that, of all things, crying seems to help a bit. It apparently relieves the sinus pressure somewhat? I also sometimes get a little relief from eating small amounts of chocolate, I presume it's the caffeine content (too much will make things worse though). Hopefully you have something that will give you some relief, or at the very least hopefully I just gave you a good excuse to eat chocolate. I hope things improve very soon!

Edited to add: Ha ha Ron, I must have missed your response about potassium as I was writing my post!

 

[ronroush7]

 

[jcashen87]

A blood test showed good potassium levels but that was a while ago. I haven't been exercising just feel too crappy to do that. My spasms seem random mostly are on my bicep area or sometimes could be my thigh.

 

[SandyUte]

Have to love your smiles, Ron.
I've had problems for years with cramps in feet and calves, and sometimes even in my thighs and hips. It's usually (but not always) in the middle of the night, but as of late, they have been hitting much more, actually horrifically more, intense and frequent. A neurologist a long time ago suggested I try more calcium, which didn't do anything. Then another doctor suggested magnesium, which helped some. My current p-doc, trying to keep me away from a muscle relaxer and my 22nd med on my med chart, suggested I drink tonic water (with quinine), which helped me get through some of the most intense cramps I've ever had, but it adds to the already ringing ears that I was also complaining at that very visit, plus it makes my chest hurt, makes my heart race more often than it already did. I already take a blood pressure med, two cholesterol meds (but one is to help with my everyday diarrhea - welchol), plus two other heart meds to regulate heart rhythm. Plus blood thinners, meds for epilepsy, meds for diabetes, etc, etc. I am going to ask that he check some vitamin and mineral levels when I see him Friday, though. They can't be normal.

 

[SandyUte]

Forgot to say most my migraines respond best to things I can't have anymore, like ibuprofen since I'm on blood thinners. I try to stay away from narcotics as family has a predisposition to addiction, but do occasionally take a tramadol, which is narcotic like but not an actual narcotic. Diet Coke also helps with my migraines some, but I am also supposed to limit the caffeine. I also don't want to get addicted to it again, but seem to have developed an intolerance to carbonated beverages when I went through my gastritis and esophagitis. I'm just complicated.

 

[SandyUte]

A blood test showed good potassium levels but that was a while ago. I haven't been exercising just feel too crappy to do that. My spasms seem random mostly are on my bicep area or sometimes could be my thigh.

With your problems of late, that could well have changed by now. I would ask for a recheck.
The hard part is what you are going through now, the sedation really is no big deal. I know it's easier to say then to go through it, but I have been through it many times. Hugs!

 

[jcashen87]

I just started drinking this Gavilyte prep, boy it is nasty, the lemon packet did nothing to flavor this stuff

 

[MissLeopard83]

Wow, I just got off the toilet after sitting on it for an hour. I was REALLY constipated and full of stool. I was napping and then woke up at 6:30 to some really bad cramping in my lower abdomen and I realized that I hadn't had a BM in 3 days after taking Kaopectate on Sunday. I immediately went to the bathroom and lost about 20 lbs (that's what it feels like because I feel so much lighter). My lower gut was so bloated and distended from the cramping. I wonder if the lightheadedness/dizziness fiasco was caused by the constipation? My gut still feels a little raw, but I'm so glad I had a BM. The only thing is - I saw bright red blood when I wiped back there which makes me think that my hemorrhoids are back again. It didn't hurt when I wiped, though, and it normally burns when I have hemorrhoids. Regardless, I feel a whole lot better - albeit still a little drowsy from the meclizine.

 

[jcashen87]

In the past when I have been constipated sometimes I get blood from the stretching that occurs just getting it out.

 

[ronroush7]

Wow, I just got off the toilet after sitting on it for an hour. I was REALLY constipated and full of stool. I was napping and then woke up at 6:30 to some really bad cramping in my lower abdomen and I realized that I hadn't had a BM in 3 days after taking Kaopectate on Sunday. I immediately went to the bathroom and lost about 20 lbs (that's what it feels like because I feel so much lighter). My lower gut was so bloated and distended from the cramping. I wonder if the lightheadedness/dizziness fiasco was caused by the constipation? My gut still feels a little raw, but I'm so glad I had a BM. The only thing is - I saw bright red blood when I wiped back there which makes me think that my hemorrhoids are back again. It didn't hurt when I wiped, though, and it normally burns when I have hemorrhoids. Regardless, I feel a whole lot better - albeit still a little drowsy from the meclizine.

Glad you feel better.

 

[Lorikeetie]

Has anyone had trouble swallowing food (coughing/chocking), but their gastroscopy looked fine? I have to wait a few weeks to follow up with my GI.

 

[jcashen87]

Half that nasty bottle of gavilyte down and 7 trips to the John and I am pretty much going clear.

Im going clear faster than i thought.

Maybe I won't have to down the whole other half tomorrow morning. I will drink a bit for good measure, but I am not feeling half bad as i thought i would. I have had lots of Gatorade and Chicken broth today.

I will never want to eat Jello again either probably. Until another one of these tests pops up

 

[Wildmtnhoney]

I got to meet my 4th GI today.

Her take is that I have post-infectious IBS. Part one of the plan is that hopefully a regimented intake of immodium will help with the D (it has helped keep me out in public in the past, so the plan is that taking it regularly will keep me...regular). Part two is a referral to pain management for local injections at the site of the RLQ pain to see if that helps.

Parts 3 and 4 are basically the same thing, and are are interesting.

First off - I never, since no longer being pregnant, have felt heartburn. I felt it at the ends of all 3 pregnancies, but never consistently, just with meals, and only those last few, really big weeks, etc. Since then, though -- it's just not something that bothers me. I burb occasionally, sure. But heartburn? Reflux? Nope. I read on hear the trials some of you go through and I feel for you, but I can't fully relate, you know?

So - Lately I've been having trouble swallowing my bigger meds. First it was the big "dry" meds that were also the "chalky" ones, like magnesium. Then it was *all* the big ones. Then, yesterday, I was out eating with my son and I had salad and a mini baguette. The first good bite of bread got STUCK in my throat - not high, but kinda low, about the same place my pills have issues. I had to drink like half my drink to get it to finally swallow all the way, and it hurt quite a bit. I figure since I mostly stick to a self-imposed "low residue" diet I just don't have the opportunity for this to happen super often. But of course since I was in seeing a GI, and this had *just* happened, I brought it up.

It appears I somehow forgot that during my barium swallow studies in 2014 (which I can't seem to find online right now) they found a Schatzki ring (I think I even posted about it back then...I should probably look for that!). This new GI wants to do an upper GI and plans to enlarge the ring. I asked to do it with full anesthesia, so it will be out a ways - but I just don't feel comfortable with them stretching/tearing scar tissue in my esophagus with me just under sedation.

In the meantime, way back then they had "suggested" I "try" PPIs (and raising the head of my bed)...but I didn't understand it, and I never saw any benefit so I went off of them. Now I get it. I *have* to be on one, because apparently I *have* reflux, whether or not I'm "feeling" it, or else I wouldn't have the ring. Dh won't go through raising the head of the bed again, but he found a nice big wedge pillow on amazon for me, so I guess that's that.

---Oh, and my dad has/had a Schatzki ring, too. I remember because I was there for his procedure to stretch his. Of course, he is now back to occasionally having "tough" foods like meats get stuck again recently, which isn't making me think too highly of this procedure. But he was so bad off before the first one, that when food would get "stuck" any liquid he would try to drink to help move it along would just regurgitate back up. I'm hoping that since I'm not there yet, I won't ever get that bad.

Now off to look for my own post about the tests I had run back in '14!

 

[MissLeopard83]

In the past when I have been constipated sometimes I get blood from the stretching that occurs just getting it out.

When I had my colonoscopy, it revealed some small internal hemorrhoids which I wasn't surprised by because I seem to get them regularly. My primary care doctor gave me some Linzess samples, but I haven't started taking it because of reading some bad reviews that say it causes watery diarrhea. She said I could start the lower dose (145mg) and take it every other day.

 

[Izzie]

Has anyone had trouble swallowing food (coughing/chocking), but their gastroscopy looked fine? I have to wait a few weeks to follow up with my GI.

Yupp! I had two gastroscopies and neither of them showed anything. I have esophageal dysmotility that finally showed on a manometry - the cause of which is still unknown.

The foods that bother me most are grainy, dry things like rice, quinoa, crumbly baked goods etc. I wouldn't say that I choke or cough so much as just feel it get stuck further down, though.

 

[jcashen87]

I was pretty much running clear last night, I'm up early to flush anything else!

Nervous a bit as I just hate doing anything at the Dr. But answers are finally around the corner. Will update how it went, I guess I'll have some preliminary results and they're going to biopsie along the way through my system!

 

[ShellK]

I got to meet my 4th GI today.



Her take is that I have post-infectious IBS. Part one of the plan is that hopefully a regimented intake of immodium will help with the D (it has helped keep me out in public in the past, so the plan is that taking it regularly will keep me...regular). Part two is a referral to pain management for local injections at the site of the RLQ pain to see if that helps.

Post infectious IBS is what the GI thinks I have, I'm still waiting for scopes though and I'm not totally convinced. Immodium is the only thing that gets me out the door for work some mornings! Hope you have some success with using it and stopping the D.

SandyUte migraines are awful, I get them way too much. Hoping for relief for you!

 

[Cat-a-Tonic]

Wildmtn, reflux doesn't necessarily mean heartburn - honestly, I actually rarely get heartburn. But I get "stuff" coming up my throat all the time, even just plain water. And I don't always feel it either, in fact I apparently usually don't feel it. A few years back I had a pH impedance test, which is basically they put an NG tube in for 24 hours and it has sensors on it, so it checks things like, how often are you refluxing, how acidic is your reflux, how high in your throat does the reflux go, how long do the episodes last, etc. I felt like I didn't have a very bad reflux day during the test, but the results were honestly shocking. The results said I had 48 separate episodes of reflux in 24 hours, and half of those episodes reached the top of my throat. (I swear I didn't even notice!) And the longest single episode lasted over 5 hours! (And there were 47 other episodes besides that one!) My reflux isn't very acidic most of the time, which is why I don't have so much heartburn. But I apparently do have crazy amounts of reflux basically all the time. So that was a very enlightening test result.

As for swallowing, I have been having more issues with that the past few weeks - I think it's the steroids. I know my reflux tends to be worse when I'm on steroids, so that's part of it. The other part is that the steroids have given me terrible dry mouth. So between the dry mouth and the increased reflux, I've definitely been having issues swallowing lately.

Jcashen, glad to hear the prep went well. Good luck today! I hope you get a worthwhile result!

MissLeopard, sounds to me like it might be a small fissure. I get those sometimes when I pass a large/hard stool as well. It's like I get a tiny tear in my anus because it just can't stretch quite far enough to pass a stool like that, so it bleeds a little bit and it can cause a little bit of stinging pain as well. If it's not a hemorrhoid, it's probably a fissure. The good news is, it will probably heal on its own in a few days. You said there was blood when you wiped, but you didn't say anything about blood in the toilet so I'm presuming it wasn't a large amount of blood? For me, hemorrhoids tend to produce a large amount of blood in the toilet but fissures just a little bit and usually just when I'm wiping. So to me that sure sounds like a fissure and it'll likely heal on its own.

Speaking of constipation, I'm joining you in that club today. Throughout this flare, I've been taking zofran to keep the nausea at bay. Zofran tends to constipate me if I have taken too much. Well, I must have taken too much! The bad part is when the hard stool moves through my "pain spot" in the LRQ - in a flare, that area becomes painful especially whenever food/stool moves through it. I definitely had a bad time with pain this morning before I was able to have a bowel movement. Not fun.

 

[MissLeopard83]

Wildmtn, reflux doesn't necessarily mean heartburn - honestly, I actually rarely get heartburn. But I get "stuff" coming up my throat all the time, even just plain water. And I don't always feel it either, in fact I apparently usually don't feel it. A few years back I had a pH impedance test, which is basically they put an NG tube in for 24 hours and it has sensors on it, so it checks things like, how often are you refluxing, how acidic is your reflux, how high in your throat does the reflux go, how long do the episodes last, etc. I felt like I didn't have a very bad reflux day during the test, but the results were honestly shocking. The results said I had 48 separate episodes of reflux in 24 hours, and half of those episodes reached the top of my throat. (I swear I didn't even notice!) And the longest single episode lasted over 5 hours! (And there were 47 other episodes besides that one!) My reflux isn't very acidic most of the time, which is why I don't have so much heartburn. But I apparently do have crazy amounts of reflux basically all the time. So that was a very enlightening test result.

As for swallowing, I have been having more issues with that the past few weeks - I think it's the steroids. I know my reflux tends to be worse when I'm on steroids, so that's part of it. The other part is that the steroids have given me terrible dry mouth. So between the dry mouth and the increased reflux, I've definitely been having issues swallowing lately.

Jcashen, glad to hear the prep went well. Good luck today! I hope you get a worthwhile result!

MissLeopard, sounds to me like it might be a small fissure. I get those sometimes when I pass a large/hard stool as well. It's like I get a tiny tear in my anus because it just can't stretch quite far enough to pass a stool like that, so it bleeds a little bit and it can cause a little bit of stinging pain as well. If it's not a hemorrhoid, it's probably a fissure. The good news is, it will probably heal on its own in a few days. You said there was blood when you wiped, but you didn't say anything about blood in the toilet so I'm presuming it wasn't a large amount of blood? For me, hemorrhoids tend to produce a large amount of blood in the toilet but fissures just a little bit and usually just when I'm wiping. So to me that sure sounds like a fissure and it'll likely heal on its own.

Speaking of constipation, I'm joining you in that club today. Throughout this flare, I've been taking zofran to keep the nausea at bay. Zofran tends to constipate me if I have taken too much. Well, I must have taken too much! The bad part is when the hard stool moves through my "pain spot" in the LRQ - in a flare, that area becomes painful especially whenever food/stool moves through it. I definitely had a bad time with pain this morning before I was able to have a bowel movement. Not fun.

I had actually already flushed several times before I wiped, so I'm honestly not sure if there was blood in the bowl. It was such a large amount of stool (TMI, I know) that I didn't want to clog the toilet. Everytime I thought it was over, another cramping episode would start and I'd have another BM. It started out hard and pellet like and then got very loose at the end. I literally did not get off the toilet until an hour passed.

I wondered about the hemorrhoids vs. fissures. When my GI did the colonoscopy, he remarked that he saw "several small, non-bleeding internal hemorrhoids" but, because he is thinking IBS, not IBD, it makes me wonder. I know, from reading here, that you can have rectal inflammation but not have it anywhere else. I go for my CTE tomorrow, so I'm hoping that will give some clue as to what's going on.

I find the results of your acid reflux test shocking. I was diagnosed with GERD when I was 16 years old after a lot of vomiting (long story; it was not induced vomiting). I never had a test, though, to check how bad the GERD was. My GP at the time prescribed Nexium, but I can't remember how long I took it or if it even worked. My current GP actually asked me a bunch of questions at my last visit on Friday and, when I told her about my chronic cough again, she believes it's due to GERD. I do get heartburn sometimes, but a lot of times, I just have reflux with no burning sensation. I know it's there because I can feel stuff backing up into my esophagus. She told me to take Pepcid everyday for 2 weeks, but I keep forgetting to take it. She wanted me to take a PPI, but I told her about the horrible stomach pain I got with Prilosec, so she nixed that idea.

 

[ronroush7]

I had actually already flushed several times before I wiped, so I'm honestly not sure if there was blood in the bowl. It was such a large amount of stool (TMI, I know) that I didn't want to clog the toilet. Everytime I thought it was over, another cramping episode would start and I'd have another BM. It started out hard and pellet like and then got very loose at the end. I literally did not get off the toilet until an hour passed.

I wondered about the hemorrhoids vs. fissures. When my GI did the colonoscopy, he remarked that he saw "several small, non-bleeding internal hemorrhoids" but, because he is thinking IBS, not IBD, it makes me wonder. I know, from reading here, that you can have rectal inflammation but not have it anywhere else. I go for my CTE tomorrow, so I'm hoping that will give some clue as to what's going on.

I find the results of your acid reflux test shocking. I was diagnosed with GERD when I was 16 years old after a lot of vomiting (long story; it was not induced vomiting). I never had a test, though, to check how bad the GERD was. My GP at the time prescribed Nexium, but I can't remember how long I took it or if it even worked. My current GP actually asked me a bunch of questions at my last visit on Friday and, when I told her about my chronic cough again, she believes it's due to GERD. I do get heartburn sometimes, but a lot of times, I just have reflux with no burning sensation. I know it's there because I can feel stuff backing up into my esophagus. She told me to take Pepcid everyday for 2 weeks, but I keep forgetting to take it. She wanted me to take a PPI, but I told her about the horrible stomach pain I got with Prilosec, so she nixed that idea.

My wife has acid reflux and coughs a lot.

 

[MissLeopard83]

My wife has acid reflux and coughs a lot.

Yep, it's actually very common according to my GP. She asked if I feel a "thick substance" in the back of my throat when I wake up in the morning and I do. I have to clear my throat a lot during the day to keep it clear and not cough.

 

[Wildmtnhoney]

Yep, it's actually very common according to my GP. She asked if I feel a "thick substance" in the back of my throat when I wake up in the morning and I do. I have to clear my throat a lot during the day to keep it clear and not cough.

Interesting!! I've just thought I often had post-nasal drip of some sort, like from allergies or something, making me have that "something in the back of my throat" feeling. Never would have connected it to reflux!

 

[jcashen87]

My upper scope was fine, but my lower scope he couldn't get past the transverse colon end because of a stricture. So structures don't generally happen in UC do they? He took biopsies, no meds yet

 

[Izzie]

I too have the dreaded reflux cough. Doesn't seem to go away no matter how many drugs I'm on. Though if I try and take less, it gets much worse.

I'm very frustrated lately. I am feeling overall much better - I no longer have really bad pain after every meal, I can kind of eat a normal amount, I no longer belch 500 times in a day, maybe 20 at the most. I do get heartburn but most days it's maybe an hour in total as opposed to having it for most of the day like I used to. The cough is sticking around but everything else honestly has gotten better. But I'm still so frustrated and fed up, I just want it to be gone. I feel ungrateful that I can't be happy about being better, but I don't want to be sick at all, I want it to be gone.

 

[Cat-a-Tonic]

jcashen, I believe strictures typically can happen in Crohn's, but not so much in UC. And my understanding of UC is, that typically the inflammation often tends worst at the bottom, so the rectum and left colon usually have bad inflammation and then it gets not so bad as you go further up the colon. And obviously ulcers are seen with UC but may or may not be seen in Crohn's. If they couldn't get through the transverse colon because of a stricture, that does not really sound like UC to me (although I am not a doctor nor a medical professional of any kind so check with your doctor for sure!). Strictures don't tend to happen in healthy people though so I would guess it likely is some type of IBD. Hopefully the biopsies will show definitively what's going on. It sounds like you're pretty close to getting some answers though!

 

[jcashen87]

thanks Cat. I have suspected Crohn's for a while. My blood tests and fecal tests have all pointed to inflammation. I've had GI problems my whole life, I'm just eager to get on with treatment of it turns out that's what it is.

 

[Cat-a-Tonic]

I can definitely understand wanting to get on treatment. It's miserable to suffer with IBD especially when it's undiagnosed. I've only been ill for about 7 years now, I can't imagine having these issues my whole life! That sounds awful. But hopefully you won't have to wait too much longer to get on treatment. Biopsy results don't take too long, usually about a week or so in my experience.

 

[SandyUte]

Interesting!! I've just thought I often had post-nasal drip of some sort, like from allergies or something, making me have that "something in the back of my throat" feeling. Never would have connected it to reflux!

Same!

 

[SandyUte]

...A few years back I had a pH impedance test, which is basically they put an NG tube in for 24 hours and it has sensors on it, ...

That would be an interesting test to have. I think it would answer a lot of questions in regard to swallowing, for a lot of people here.

The bad news, Doug had a GI appt yesterday and because of more than usual D and tenderness in his abdomen, and family goings on the past couple weeks, the GI thinks Doug picked up a bug from my family's cooking. I'm sure I did too. No more group meals for us if we go camping with them again.
And lucky me, it appears from what I was told in the ER I just happen to be one of the people that gets a rare type of migraine (complex or hemiplegic), which affects only .03% of population, as opposed to the 13% of population with general migraines.
The good news, my headache is much improved today. Finally.
Yay! Yahoo! Yippee skippy!

 

[ronroush7]

That would be an interesting test to have. I think it would answer a lot of questions in regard to swallowing, for a lot of people here.

The bad news, Doug had a GI appt yesterday and because of more than usual D and tenderness in his abdomen, and family goings on the past couple weeks, the GI thinks Doug picked up a bug from my family's cooking. I'm sure I did too. No more group meals for us if we go camping with them again.
And lucky me, it appears from what I was told in the ER I just happen to be one of the people that gets a rare type of migraine (complex or hemiplegic), which affects only .03% of population, as opposed to the 13% of population with general migraines.
The good news, my headache is much improved today. Finally.
Yay! Yahoo! Yippee skippy!

I am glad your headache is so much better , Sandy. Dance of joy.

 

[SandyUte]

 

[Cat-a-Tonic]

Sandy, sorry to hear you got a bug! I'm always leary of group meals as well. I try to avoid big potluck meals because you just don't know who made what or how long it's been sitting out for, etc. Next month we're going to a corgi picnic (seriously, it's a picnic with about 80 corgis in attendance!) but unfortunately it's an event where everyone brings a dish to pass, ugh. I try to eat a meal beforehand and/or only eat my own food at the picnic - I guess that's one of the good things about having a digestive illness, is that at least I have a legit excuse to be a super picky eater. And if people think I'm a food snob or whatever, well, I'd like to see them live a day with my illness - then they'd surely think twice before eating that potato salad that's been sitting out in the sun for 3 hours.

 

[Wildmtnhoney]

I think I'm in too much of a shock to cry, but I may do that later.

I just received a letter from the rheumatology department at the university hosptial I was referred to. They won't see me. They say that because I only tested "positive" for Sjogren's on the "early" test, and because it isn't yet FDA approved for diagnosis, that I don't have it, and they go on to say that my symptoms can be attributed to other things. They admit that there is a published study confirming the link between this test and Sjogrens, but they only confirm one such study exists (I was sure there were more, but I'm too wound up to look right now).

I wonder if this is why the Dr that diagnosed me is no longer in clinic at the university hospital.

I am soooooo angry. And sad. And confused.

I don't know if I should stay on Plaquenil or not. I feel like I don't know anything anymore, and I don't even know who I should ASK! My GP felt this was all over her head, hence the referral.

I feel so lost.

 

[ronroush7]

Sorry.

 

[Wildmtnhoney]

Update!

Bausch &Lomb use the SAME test in their novel early Sjogren's test!! So I just emailed my Opthamologist for his advice!!

 

[MissLeopard83]

I had my CTE scan today and that barium sulfate solution is NASTY. I don't think I'll want anything with blueberries for a while (it was blueberry flavored but very chalky). I had some really stringy mucus attached to a BM while at the imaging center and a LOT of gas and bloating (the barium distends your abdomen). I got home and ate lunch and now I'm having a bunch of gurgling in my gut. Also, my right upper abdomen is causing discomfort again. I took my Bentyl, but it's not doing anything.

I hope to get the results of the CTE next week and, hopefully, have some answers.

 

[Cat-a-Tonic]

MissLeopard, ew, that blueberry drink sounds foul! I had a lemonade-based contrast drink for mine and it definitely put me off of lemonade for a long time, so I can relate to you not wanting blueberries anytime soon! As for not feeling well after the drink, yeah, for me it was just a case of having to pass the contrast from my system, and then I felt better. So don't take any anti-diarrheal medication for a bit so that you can get that stuff out of you ASAP. Hopefully you can rest and recover over the weekend? Feel better and I hope you get those results quickly (and that they're worthwhile!).

Wildmtn, I don't know hardly anything about Sjogren's but I hope one of your doctors can give you some actual help! That's horrible that they won't even take you on as a patient. Are there other tests for Sjogren's besides the one that you had? Is the Plaquenil doing anything so far? (I seem to recall that it's one of those meds that takes like 3 months to kick in? So if that's the case then maybe stay on it for 3 months and see if it's doing anything for you then?) I wish I could be more help, but I'm definitely here listening and cheering in your corner - you can get this figured out! Don't give up!

 

[MissLeopard83]

MissLeopard, ew, that blueberry drink sounds foul! I had a lemonade-based contrast drink for mine and it definitely put me off of lemonade for a long time, so I can relate to you not wanting blueberries anytime soon! As for not feeling well after the drink, yeah, for me it was just a case of having to pass the contrast from my system, and then I felt better. So don't take any anti-diarrheal medication for a bit so that you can get that stuff out of you ASAP. Hopefully you can rest and recover over the weekend? Feel better and I hope you get those results quickly (and that they're worthwhile!).

Yeah, I haven't taken any Kaopectate for the symptoms because I don't want that junk stuck in my gut for more than it needs to. So far, it hasn't caused any diarrhea, just a lot of gas.

There was a lady in the TV room where I was (much nicer than the typical waiting room; it's a little more private and I didn't want everyone watching me drink that stuff) and she got to drink something that looked like fruit punch or raspberry flavored contrast. I envied her because she only had to drink 2 bottles of 16oz and had no trouble getting it down. I told her I wished I could drink what she drunk when she acted sympathetic for my situation of drink three bottles. Turns out, she had the same procedure done before and didn't tolerate the barium very well - she threw it up 2 minutes after she started drinking it.

As for this weekend, my mom and I are going to look at apartments near work since I'm planning to move before the end of the year. I'm looking forward to it.

 

[Cat-a-Tonic]

Have fun apartment shopping! I hope you can find a good one!

Ugh. I went to the gym earlier today and maybe that wasn't the smartest idea. I was thinking that if any part of my body would object to me working out, it'd surely be my guts? Nope. It's my hip! I have arthritis in both hips thanks to the presumed IBD, but my right hip has always been worse than the left, and it's the right hip that's aching pretty badly now. Which is weird, because usually my arthritis responds positively when I exercise, and I even made sure to do my hip-friendly physical therapy exercises which usually makes my hips happy. I presume this is a flare-related pain though because flare-ups can definitely cause an increase in my joint pain. So, yeah, fun. I'm 36 and limping around with my bad hip like I'm an old lady. I have a cane (several, in fact, because sometimes a girl just has to accessorize) but I don't really want to use it if I can avoid it. We'll see. I'm going to spend the evening on the couch with my heating pad on my hip, and will see how it's feeling tomorrow. I guess if I do need my cane tomorrow, I won't be out of place when I go to visit my grandma. She's been using a walker and many of the residents in her memory care unit are in wheelchairs. I'll fit right in, ha ha!

 

[MissLeopard83]

Have fun apartment shopping! I hope you can find a good one!

Ugh. I went to the gym earlier today and maybe that wasn't the smartest idea. I was thinking that if any part of my body would object to me working out, it'd surely be my guts? Nope. It's my hip! I have arthritis in both hips thanks to the presumed IBD, but my right hip has always been worse than the left, and it's the right hip that's aching pretty badly now. Which is weird, because usually my arthritis responds positively when I exercise, and I even made sure to do my hip-friendly physical therapy exercises which usually makes my hips happy. I presume this is a flare-related pain though because flare-ups can definitely cause an increase in my joint pain. So, yeah, fun. I'm 36 and limping around with my bad hip like I'm an old lady. I have a cane (several, in fact, because sometimes a girl just has to accessorize) but I don't really want to use it if I can avoid it. We'll see. I'm going to spend the evening on the couch with my heating pad on my hip, and will see how it's feeling tomorrow. I guess if I do need my cane tomorrow, I won't be out of place when I go to visit my grandma. She's been using a walker and many of the residents in her memory care unit are in wheelchairs. I'll fit right in, ha ha!

I can definitely commiserate. I have bad hips, too, and my doctor calls it trochanteric bursitis. She tested me for RA since it runs in my family, but the rheumatoid factor was normal. Some days are worse than others and I can never tell what sets it off. Sometimes, it's walking too much. Other times, it's from sitting too much. I can't make my hips happy. They get stiff easily, too, which is painful when I want to get up and walk around. I'm 33. Why do our bodies do this to us? LOL! :voodoo:

 

[SandyUte]

I think I'm in too much of a shock to cry, but I may do that later.

Oh my! I just received a letter from the rheumatology department at the university hosptial I was referred to. They won't see me. They say that because I only tested "positive" for Sjogren's on the "early" test, and because it isn't yet FDA approved for diagnosis, that I don't have it, and they go on to say that my symptoms can be attributed to other things. They admit that there is a published study confirming the link between this test and Sjogrens, but they only confirm one such study exists (I was sure there were more, but I'm too wound up to look right now).

I wonder if this is why the Dr that diagnosed me is no longer in clinic at the university hospital.

I am soooooo angry. And sad. And confused.

I don't know if I should stay on Plaquenil or not. I feel like I don't know anything anymore, and I don't even know who I should ASK! My GP felt this was all over her head, hence the referral.

I feel so lost.

Oh my is right! I had a sister who had definite Sjogren's and lupus (but died of unrelated breast cancer), and another sister or two with "probable, we'll watch and see" Sjogren's. My mother also has it. It is my understanding a diagnosis is quite subjective. See https://www.sjogrens.org/home/about-sjogrens/diagnosis, I hope that helps. Many hugs.

P.S. If I remember correctly, a big part of what got the Sjogren's diagnosis was elevated ANA levels. Have you had that tested?

 

[SandyUte]

Tho the ache part of my migraine is much improved, because of reoccurring "auras" and other migraine symptoms, I had three shots today, one for anti nausea, one for pain, and one steroid, dexamethasone, which is known to help prevent future migraines for awhile (tho doesn't help with pain or anything of current one). We went home with instructions for rest, but as we are having a houseguest tomorrow (Doug's high functioning but very set in his ways autistic brother), we have to get the place ready for him, and still haven't unpacked from our camping trip all the way. ughhhh! I've been really snapping at Doug, poor guy.
(P.S. we need to move to get rid of some of our junk.)

 

[SandyUte]

Hugs to all of us with arthritis too! I not only have a cane (several), but have a wheelchair (but seldome use it anymore). The wheelchair was prescribed because of weakness, however (in my 30s) but I have used it during bouts of back spasms, from arthritis etc.

 

[Izzie]

I've been having this absurd stuffy nose issue the past few weeks. I had a cold several weeks ago and I don't feel the slightest bit sick anymore but when I lay down at night, it's like my sinuses just stuff up completely.

Am visiting a very ill, possibly dying close relative in hospital tomorrow and I'm worried about possibly having something contagious though I really haven't had the slightest bit of fever or feeling sick whatsoever in the past 3 weeks. It's probably pollen. I don't want to miss this visit as it's not looking good and it might be my last chance to see him.

I've spent far too much time in hospitals this past year...

 

[ronroush7]

Support

 

[MissLeopard83]

I've been having this absurd stuffy nose issue the past few weeks. I had a cold several weeks ago and I don't feel the slightest bit sick anymore but when I lay down at night, it's like my sinuses just stuff up completely.

I've had this issue, too, due to some inflammation in my nostrils, according to my GP. She gave me some samples of Nasonex (Rx only) but it ran out, so I tried Flonase, but it didn't work so well for me. I recommend Rhinocort (budesonide). I bought the generic version at Walgreens and it's 120 sprays for about $14. It works well. I spray it in my nose at night before I go to bed and my nose stays open all night. My mom also uses Breathe Right strips since she doesn't like using spray. Whatever you do, do not use spray like Afrin as your body gets addicted to it even if you follow the directions. When you stop using it, your nose gets even more stuffed up than before.

 

[jcashen87]

Trying to eat light the day after my colonocopy, everything seems to hurt a bit more as food passing through. I have that pain in my gut which i associate with the iron pills, eans theyre kind of working but man they churn my gut really bad. The stricture I guess I have had almost doesn't compare to the damn iron pills.

Energy still real low, I work weekends so Im trying to go back to work tomorrow and just do my office work. No outside crap. Feeling sort of angry that I haven't been able to live anything of a normal life for me the past month and a half with this fatigue. I don't go out of the house unless its to sit at my desk so i can get a little money and keep my insurance.

Hopefully the Iron Infusion will perk me up, I want to push for another blood check of B12 and potassium too, because a lot has changed since my last full lab work of these things in June.

Feel good being close to a probable diagnosis though. It seems like Strictures only typically happen in IBD/ Crohns. My GI couldn't get the scope past it but took the biopsies. Can't wait for the results so I can get treatment.