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Thanks, Ron. But I actually think I have had an easy time with my diagnoses compared to many people. I have a GI who downplays my crohn's and celiac disease. He also listens and we work together to figure out what to do next. Even though he can't see the inflammation in my small bowel with his eyes, he concurs with the CT results. I can't imagine what it would be like to be seeing the other GI who told me I was just stressed (and he said this so kindly, too) instead of my GI who is so supportive!
 
So glad I found this website! Although I'm still undiagnosed, it's great to find a community filled with such positive people and support. I'm looking forward to chatting with you all moving forward.
 
Jabee, your post literally had me in tears, both for what you have been through and for the very supportive encouragement you gave to all of us. (It doesn't help the "water works" when med issues put you, ie me, in a depression.) Thank you. And ditto to what Ron said, welcome to both you and Gordan, and hope you can get as much out of this forum as I have.
 
Once again I've avoided this thread because I feel like a whiner and like I don't have a lot to contribute. But here's my updates:

I get to start LDN soon! My GI emailed me a couple days ago and said he's working on figuring out how to prescribe it to me (it has to be compounded at a compounding pharmacy). I seem to be my GI's very first LDN patient, which is exciting! And I'm fine with being a guinea pig, that's pretty much just the way it goes when you're undiagnosed. It's like, we don't know what's wrong with you, so try this med and hope for the best! :p I do have high hopes for LDN, though. It sounds super promising and low risk. Hopefully soon my GI will work out the details of whatever he needs to do on his end so that I can start taking it. I'll be starting at a very low dose and working my way up to the 4.5 mg (which is the recommended dose for IBD).

I'm still on pred, trying to taper off of it. Currently on 15 mg and going to try tapering to 12.5 mg tomorrow. Wish me luck! I am thankful to pred for the healing it's done for me, but I also sort of hate the side effects and would like to be done with pred for a looong time. :p

I'm having an MRE on Friday. It sounds like the least fun time ever. I have to drink a bunch of the yucky contrast stuff, which is similar to prep in terms of the effect it's going to have on me. After I drink the contrast, I have to lie on my belly in the MRI scanner for like an hour. Ugh! So I'll be full of laxative and putting pressure on my belly and not able to move, great, sounds like a recipe for disaster. I am packing myself a kit, with wipes and pads and spare pants.

I'm also getting an IUD put in in December, because I'm terrified of the new administration (particularly the VP) and their stance on women's reproductive rights. Everything I've read online says that women in the US who don't want kids should just get an IUD now, before those awful men are sworn into office, because an IUD should outlast their term in office. So, that's just what I'm doing because I'm 37 and have zero desire to have a kid. The nurse warned me that when they insert the IUD, I'm going to have cramps that are very painful, "similar to contractions." I'm not too worried about that, though. It'll probably suck for a little while, but I can deal with cramps and pain. It's not like that's a new concept to me!

So yeah, some things are moving in the right direction and some things still suck and some things are going to suck in the near future. :p Hopefully LDN will get me back into remission, that would make all the suckage worthwhile.
 
Cat, do you have to do any prep before hand? With my MRI I had to do two or three days low residue diet (plain white bread, plain chicken, plain potato with no skin, plain white rice) then the day before one sachet of Klean Prep. I think I was allowed to continue eating but the instructions weren't clear so I didn't which I think was my mistake.
I will be honest, the contrast definitely had a laxative effect, however there was no nausea, no cramps, no pain, just the contrast. I managed to hold it for the 20 minute scan (it was already coming out before the scan started haha) then went to the toilet straight from scan, literally out the machine to the toilet, then they made me lay down for a bit as they gave me buscopan and it makes my heart rate rocket, then toilet, then I managed the 25 minute journey home but before the engine was off was out the car heading for the bathroom haha.
So, lesson from the rambling is yes you can hold it, it's not too awful and if you have an entirely empty digestive tract it will be escaping within 20 minutes...

I'm so glad your GI has agreed to LDN that's awesome! I hope he manages to find a pharmacy soon for you so you can get started. I hope the pred taper goes okay for you after last time. I would be interested to hear how you get on with the IUD actually, I'm considering it for my endo as I don't feel my pill is being absorbed properly as I'm getting breakthrough bleeding and pain. I can understand wanting to get it sooner than later given the uncertainty with healthcare right now for you to be honest.

I've had some bloods done including electrolytes yesterday and as always they all came back normal! I give up haha! My chest pain is still there but not much I can do right now. I was given domperidone to try though to see if it helps my nausea so that will be interesting, I've only got 7 days worth but if it helps I hope it will really help me fight my corner for a gastric emptying study! I will save one for Christmas Day though...
My weight is still down, 42.9kg/94.5lbs so that's frustrating, but dietician next week so fingers crossed something will come from that. I've managed to eat well the last couple of days but usually I have a good couple days then back to bad so I will see how it goes. It sounds awful but I'm not too bothered about trying to push it before I see the dietician, I feel like maybe if she sees the way my weight has been maybe she can rattle my consultant too. Sigh. Such a long road this!
 
Sarah, my only instructions for the MRI were to be NPO for 4 hours prior to my appointment time. My appointment is at 1 PM (that's when I have to arrive at the hospital to start drinking the contrast, and the scan itself is at 2 PM), so I have to stop eating and drinking at 9 AM on Friday. And I'm not a breakfast person anyway, at most I'll have something like a Boost or a smoothie just so I can take my prednisone (I'm supposed to take it with food or milk), and I will drink a bunch of water prior to 9 AM so that I stay hydrated, and that's it, I won't have any solid foods that morning just because I know it won't sit well with me. Eating too early in the morning always makes me nauseous. And I'm doing the low-FODMAP diet still, which is sort of similar in some regards to low-residue - I'm eating a lot of fish and rice, mainly. So I think that'll be okay. But yeah, I'm fully expecting to have an urgent need for the bathroom at some point during this fun time, so I'm preparing myself for that with supplies. Even if I do crap myself, I will have wipes and spare pants & underwear and pads etc on hand. And a plastic bag to sit on in the car just in case!

I will keep you posted on how the IUD goes. I'm opting for the "Mirena" IUD which is the one with hormones, so I was told that I shouldn't really have a period anymore which will be nice. I'm having it put in on Dec 12th so I will let you know then how it went. I'm currently on the Nuvaring, which has been fine - I had been on the pill in the past, but when this IBD or whatever it is came along, I was afraid I wasn't absorbing the pill very well because I was having so much diarrhea. And I reeeeeallllly didn't want to have an oopsie pregnancy when I was so ill! (Or at all, I'm just not a kid person - I like my nieces & nephews but I just do NOT want a kid of my own.) So the ring has been great, no problems with it, but fear of the unknown for the next 4 years has made me want to seek out a more semi-permanent option. I think it'll be fine once I get over the initial cramps - according to everything I've read, usually the first half hour or so after insertion is pretty bad and then there's mild cramping for a few months and then you barely even notice that the IUD is there. So that's the expectations that I'm going in with. It'll suck for a short while but will be well worth it in the long run, I think.
 
Yeah I can't do breakfast often either, I haven't for years. I actually think if I had had some food in my system before mine the contrast wouldn't have affected me quite so badly, there was literally nothing in its way! Sounds like you're pretty well prepared though :)

I'm actually on the mini pill so same hormones as the IUD, and I don't get periods as such but the last few months I'm getting some breakthrough bleeding for a few days at a time so suspect I may need to swap. I'm not using it for contraception (I'm laughably single) but to keep my endometriosis under control.

I may ask about getting it out in at my next laparoscopy! I figure that way I will get all the pain out the way at once haha!
 
I've literally never been a breakfast person - I can remember being about 5 years old and my mom was trying to make me eat some yogurt and it was making me feel so ill, so even when I was a child I was not a breakfast person (and this IBD or whatever didn't come along until just before I turned 30). I can usually choke down something liquid like Boost in order to take my pred, and I do love breakfast foods - I sometimes have eggs and turkey bacon for dinner - but I never do well when I try to eat in the mornings.

That's an interesting thought, though, maybe I should try to eat a little something before my 9 AM NPO cutoff on Friday. I wonder if that would slow down the laxative effect of the contrast for me. Well, I guess I'll see how I'm feeling on Friday morning and play it by ear. I could try a few bites of food and stop if it makes me too nauseous I guess. More likely though I'm probably just going to stick with my Boost/smoothie plan.

I'm married, so, even though it's usually only once a week or so that the hubby and I end up being intimate, obviously I absolutely still need good birth control. My GP mentioned the possibility of my hubby getting a vasectomy, but I know hubby won't go for that. He actually kind of wants kids (shudder) but with my health and my aversion to children, especially babies, just no. I'm not putting my body through the horrors of a pregnancy just to create a selfish, needy, germy, loud tiny person whom I'm emotionally and financially responsible for. It all sounds awful and exhausting to me! :p But yeah, without hubby getting the snip snip done, it's up to me to make sure no babies are happening.

I was actually hoping to get the IUD done sooner, but you can't have an MRI if you have an IUD. So I am having my MRI first and then getting the IUD. I've never had a laprascopy, I don't know if they can put in an IUD during that or not, but if you can get it done while under sedation/anesthesia then that would probably be ideal! You could sleep through the worst of the cramps!
 
Cat-a-Tonic said:
I've literally never been a breakfast person - I can remember being about 5 years old and my mom was trying to make me eat some yogurt and it was making me feel so ill, so even when I was a child I was not a breakfast person (and this IBD or whatever didn't come along until just before I turned 30). I can usually choke down something liquid like Boost in order to take my pred, and I do love breakfast foods - I sometimes have eggs and turkey bacon for dinner - but I never do well when I try to eat in the mornings.
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You sound a LOT like me. Nausea is a big problem for me, too, in the early mornings if I try to eat. I was told that it was due to acid reflux but I think it's just the opposite - lack of stomach acid. Food from the night before hasn't digested so it's just sitting in my stomach. About the earliest I can eat anything most of the time is around 9am or 10am - by then, it's almost lunch time.

I LOVE breakfast foods, too. I used to be a major cereal eater, but I have Celiac disease and the gluten-free cereals aren't that appetizing. I don't mind Chex and Cheerios, but they are not my favorites. I like cereals I cannot eat like Honey O's, Life, Quaker Squares, Basic 4, and Total Raisin Bran. All of them are full of gluten, sadly. My real favorite is eggs cooked over-easy with a medium runny yolk, bacon, and sausage. I love going to Cracker Barrel and ordering the Sunrise Sampler - but I ALWAYS substitute Egg Beaters for real eggs. Egg Beaters are SO nasty! Eggs are full of good protein and are really healthy - in moderation. I always buy the good kind - organic and/or pasture-raised. :)
 
Over easy is my favorite way to cook eggs, too! Although lately I've been doing scrambled with some goat feta cheese thrown in as a change of pace - yum! I'm not a sausage fan, but I love turkey bacon and will on occasion eat real bacon too. I'm making myself hungry! :p
 
Cat yes a laparoscopy is done under general so seems perfect really haha.
I'm totally the same, I can't eat early at all it never sits well, but I love breakfast food. My favourite has to be pancakes, maple syrup and bacon on the side.
 
Yum, I love pancakes too! And waffles!

My hubby has been eating this cereal lately, it's like these honey nut oat clusters (I forget the actual name of the cereal). It looks yummy but so painful, I know my guts would be in pain for days if I tried it. I'm jealous that he can eat this cereal with zero repercussions. Healthy people don't know how good they've got it.
 
Yummy is right, I think I'm going to make waffles and eggs for dinner. For years, everyone has poo-pooed (seems the appropriate words for this forum:rof:) eggs as unhealthy because of cholesterol, etc., but I look at old days, not too long ago, when everyone ate eggs, and people were a lot healthier then. I know people worked harder physically then, too, but still! I recently saw a little news blurb about a lady in her 100s and they asked her her secret for long life. In the interview, she disclosed she had bacon and egg every breakfast.They are even discovering it's healthy and a good food for controlling diabetes now. I will take my eggs medium runny yolk also. ;)
 
SandyUte said:
Yummy is right, I think I'm going to make waffles and eggs for dinner. For years, everyone has poo-pooed (seems the appropriate words for this forum:rof:) eggs as unhealthy because of cholesterol, etc., but I look at old days, not too long ago, when everyone ate eggs, and people were a lot healthier then. I know people worked harder physically then, too, but still! I recently saw a little news blurb about a lady in her 100s and they asked her her secret for long life. In the interview, she disclosed she had bacon and egg every breakfast.They are even discovering it's healthy and a good food for controlling diabetes now. I will take my eggs medium runny yolk also. ;)
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My great-grandmother lived to almost 101 and she ate eggs, bacon, sausage, and biscuits made with lard every day. According to the AHA, she should have died WELL before her time. The fat kept her brain healthy whereas, most people who go on low-fat diets or calorie restrict are experiencing dementia. Whatever you eat feeds your brain. That's why they figured out that fish oil and Omega fatty acids were not only good for your heart - they were good for your brain as well. Also, eggs have virtually no sugar or carbs and they fill you up a LONG time so you eat less but still feel full. The Paleo diet emphasizes eating naturally (fruits are pretty limited in the diet due to sugar content, but they are better than most desserts).
 
This is purely anecdotal obviously, but my grandma has severe dementia/alzheimer's, and my grandpa was also starting to experience some symptoms of dementia before he died (he was repeating himself at times, and basically lost his ability to do math - he used to do his own taxes but couldn't even figure out how much to tip at a restaurant towards the end of his life). They both ate a TON of fast food, especially KFC. You know those little containers that KFC mashed potatoes come in? My grandma literally had hundreds of them. So if eggs and bacon are anti-dementia foods, KFC seems to be a pro-dementia food. Not that anybody would think that KFC is a health food, but in my experience it's really super terrible for you. My grandparents have both had heart issues, so there's that too. My grandma even said once that she thought KFC extra crispy was probably responsible for her heart attack (that did not stop her from eating it though, eek! Fortunately she's in a facility now where they feed her a much healthier diet). And my grandpa ate KFC up until the end of his life, he refused to give up his favorite food treats even though his heart was not well at all.

MissLeopard, 101 is super impressive! My grandpa died at 84, after nearly 10 years of being really ill (kidney failure, heart issues, diabetes, arthritis so bad he was in a wheelchair, etc). And my mom's parents died quite young (I think her mom was in her mid 50s - breast cancer - and her dad was maybe 60 - colon cancer - they both died before I was born). My grandma who is still alive is 84, but she's been declining rapidly with her dementia, so I don't think she'll be around for a whole lot longer.

This is really making me want to have breakfast foods for dinner tonight. I've got some gluten-free blueberry waffles in the freezer, and I have eggs and turkey bacon in the fridge. Oh! And I have oranges! I can make OJ in my juicer! That's a rare treat for me because it's so acidic, but I can usually get away with it if I only have it sporadically. Yum yum!

Sandy, I saw that article about that woman, she's currently the world's oldest human, I think she's 117 years old?! That's insane! But she said that she eats raw eggs every day. Nope! I will continue cooking mine, not going to do raw eggs. :p The yolks can be runny but not totally raw, yuck!
 
Cat-a-Tonic said:
This is really making me want to have breakfast foods for dinner tonight. I've got some gluten-free blueberry waffles in the freezer, and I have eggs and turkey bacon in the fridge. Oh! And I have oranges! I can make OJ in my juicer! That's a rare treat for me because it's so acidic, but I can usually get away with it if I only have it sporadically. Yum yum!
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I actually had breakfast for dinner last night! I went to the store to pick up a prescription and bought some egg white patties for sandwiches and sausage patties and defrosted both and put them on a gluten-free/grain-free bagel (Against the Grain; LOVE that brand) and put a slice of Cracker Barrel Vermont White Cheddar cheese on the top. SO GOOD! I've been craving Udi's Breakfast sandwiches lately, but this was MUCH better! :)
 
Yum! I had turkey bacon and eggs over easy and OJ from my juicer for dinner last night. That was delicious. Didn't have the waffles, I was too full after everything else, so I'll save the waffles for another time.

I have to ask, though, what on earth is a grain-free bagel? How is that even possible? I'm doing a lot of GF foods at the moment because gluten is discouraged on my low-FODMAP diet, but honestly gluten isn't an issue for me and I've been having it regularly with no issue, so I'm still sort of new and an outsider to the world of GF products. Grain-free bagels I have never heard of before! That's definitely a new one to me!
 
Cat-a-Tonic said:
Yum! I had turkey bacon and eggs over easy and OJ from my juicer for dinner last night. That was delicious. Didn't have the waffles, I was too full after everything else, so I'll save the waffles for another time.

I have to ask, though, what on earth is a grain-free bagel? How is that even possible? I'm doing a lot of GF foods at the moment because gluten is discouraged on my low-FODMAP diet, but honestly gluten isn't an issue for me and I've been having it regularly with no issue, so I'm still sort of new and an outsider to the world of GF products. Grain-free bagels I have never heard of before! That's definitely a new one to me!
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Grain-free means that the item is made with non-grain flour such as coconut or tapioca. The bagels are made with tapioca flour. I discovered the brand when I was eating Paleo/Primal and have eaten them ever since. They are REALLY good with Organic Valley cream cheese spread. I've only ever been able to find the sesame version in stores near me, but they have a cinnamon raisin version, too, which I've been wanting to try. I have also tried the regular pizzas, flatbread pizzas, baguettes, and rolls. I bought the pita bread, but haven't tried it yet.

http://againstthegraingourmet.com/gluten-free-breads
 
Ds used to eat against the grain gourmet
Pitas
Baguettes
Rolls
Pizza crusts and bagels
But be aware it has a lot of milk and cheese in them which is why ds can't have them anymore
But they do taste great imo
 
Cat-a-Tonic said:
I've literally never been a breakfast person - I can remember being about 5 years old and my mom was trying to make me eat some yogurt and it was making me feel so ill, so even when I was a child I was not a breakfast person (and this IBD or whatever didn't come along until just before I turned 30). I can usually choke down something liquid like Boost in order to take my pred, and I do love breakfast foods - I sometimes have eggs and turkey bacon for dinner - but I never do well when I try to eat in the mornings.

That's an interesting thought, though, maybe I should try to eat a little something before my 9 AM NPO cutoff on Friday. I wonder if that would slow down the laxative effect of the contrast for me. Well, I guess I'll see how I'm feeling on Friday morning and play it by ear. I could try a few bites of food and stop if it makes me too nauseous I guess. More likely though I'm probably just going to stick with my Boost/smoothie plan.

I'm married, so, even though it's usually only once a week or so that the hubby and I end up being intimate, obviously I absolutely still need good birth control. My GP mentioned the possibility of my hubby getting a vasectomy, but I know hubby won't go for that. He actually kind of wants kids (shudder) but with my health and my aversion to children, especially babies, just no. I'm not putting my body through the horrors of a pregnancy just to create a selfish, needy, germy, loud tiny person whom I'm emotionally and financially responsible for. It all sounds awful and exhausting to me! :p But yeah, without hubby getting the snip snip done, it's up to me to make sure no babies are happening.

I was actually hoping to get the IUD done sooner, but you can't have an MRI if you have an IUD. So I am having my MRI first and then getting the IUD. I've never had a laprascopy, I don't know if they can put in an IUD during that or not, but if you can get it done while under sedation/anesthesia then that would probably be ideal! You could sleep through the worst of the cramps!
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The only kids I like are mine and I honestly didn't want any kids before I got pregnant with my daughter, my oldest. I can say though that my kids are what keep me going. The main thing with kids is ignore what others think or tell you about raising them. Everyone constantly told me that my kids were too spoiled or too clean or too whatever. I said oh well I guess it will be my fault if they turn out to be horrible. Annnnnd guess what? My bio kids are the most incredible little people! My daughter and son are so supportive. They ask me constantly if I'm ok, can they help me with anything etc. The thing about children is that they are a direct reflection of you. It's all in the respect and nurturing you give them. I promise they're only needy, selfish tyrants for the 1st 3 years if you're lucky 😀
I did have a laparoscopy for endometriosis and you're definitely out during them. Usually they don't give anesthesia for IUD insertion but you could definitely ask.
 
my little penguin said:
Ds used to eat against the grain gourmet
Pitas
Baguettes
Rolls
Pizza crusts and bagels
But be aware it has a lot of milk and cheese in them which is why ds can't have them anymore
But they do taste great imo
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Yes, they use mozzarella cheese and eggs as a binder. The first time I tried it, I thought it had an "interesting" texture, but now I don't notice the difference. :)
 
MissLeopard, it sounds like I probably couldn't eat those. Especially if they use coconut meal - coconut is my #1 trigger food, even a little bit will make me ill for days. The last time I got coconut-ed, I was sick for 4 days. It was miserable. And I'm lactose intolerant, too, so if there's a lot of dairy in them then that's also not good for me. (I can do goat/sheep cheese just fine, but cow dairy is a problem for me.)

Well, today's my MRE. It's just past 8 AM here and 9 AM is when I have to start being NPO, so I'm forcing down a smoothie and also trying to drink as much water as I can. My stomach is not totally happy with that but I really do need to get as much hydration and nutrients as I can now, so I'm just making myself drink. I will be glad when this experience is over with! I just need to get through today. Tomorrow will be MUCH better.
 
Good luck with the MRI Cat!
I had pancakes for lunch today too after all this talk of breakfast foods haha. I can't stand eggs though they make me feel so nauseous, I've never liked them even as a kid.
 
I survived! It wasn't a fun time but I managed not to crap myself, so I can't complain too much. It took much longer than I thought, because they were running late. I was supposed to start my scan at 2 PM but it was after 3 PM when I finally got into the MRI machine. At any rate, it's done with now and I'm home and resting.
 
Weirdly enough, the contrast has almost suspiciously NOT been causing me trouble. Yesterday it seemed to mainly make me full of gas - I kept thinking I had to use the bathroom, but all that would come out was a large amount of gas and maybe a tiny bit of stool (but mainly gas). Today the gassiness is gone and I've had exactly one bowel movement which was perfectly formed. And that's it! I keep waiting for the diarrhea to kick in, but I don't think it's going to. If anything, the contrast backed me up a bit and firmed things up. Which is the opposite of what I was expecting!
 
Cat-a-Tonic said:
Weirdly enough, the contrast has almost suspiciously NOT been causing me trouble. Yesterday it seemed to mainly make me full of gas - I kept thinking I had to use the bathroom, but all that would come out was a large amount of gas and maybe a tiny bit of stool (but mainly gas). Today the gassiness is gone and I've had exactly one bowel movement which was perfectly formed. And that's it! I keep waiting for the diarrhea to kick in, but I don't think it's going to. If anything, the contrast backed me up a bit and firmed things up. Which is the opposite of what I was expecting!
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When I had the oral contrast for my CTE, I had to use the restroom before the scan and I had a LOT of gas, too. Also, a lot of mucus came out in place of stool. Not sure why that happened with the mucus, but I didn't have any diarrhea either.
 
About to head to my disability hearing, and never felt so torn in my life. If you're the type, I could use all positivity you're willing to send.
 
Whine time. I'm still waiting for my GI to figure out how to prescribe LDN to me already. I feel like I've been waiting forever! I'm excited to try LDN but I'm just waiting and waiting on my GI (last week he emailed me saying he's working on it, this morning I emailed him asking for a status update and haven't heard anything back yet...). I apparently his first ever LDN patient, and he's very thorough, but come on. I've literally been waiting months for this! Just prescribe the LDN already!
 
Sounds like it's not going to happen this week. Ugh, angry. My GI responded to my message saying that he's very busy this week and he's looking into it. Clearly he's not so busy that he can't respond to my emails, so why can't he just write the stupid prescription already?? Grr!

On a related note, with how awful and frustrating this year has been as a whole, my brother gave me boxing gloves for my birthday. Which is good because I really want to punch something! :p
 
Cat I'm sorry your GI is taking so long to do the LDN prescription! Has he found a compounding pharmacy yet? Has he given you any indication of how long the MRE results will take? Also I'm glad you didn't have any nasty side effects from the contrast, that must have been a huge relief!

I have yet another dietician appointment tomorrow, I've kind of accepted she won't be able to do anything more to help right now but I guess it will be good to check in with her. I'm worried about weigh in simply because I don't want to disappoint her with the weight loss. Which is silly really because it's not intentional and it's not exactly something I can control. Oh well hey!
 
Yes, my GI's nurse recommended a compounding pharmacy in my city, so we've got that part all set (I looked them up to be sure they're good, and I'm satisfied - they do compound LDN and they seem reputable). For the MRE results, I am not sure exactly how long it takes. I presume about a week or two. I don't expect the MRE to find anything so I'm not overly anxious about those results.

Hopefully the dietician will take your weight loss seriously, at the very least! I mean, you've been following her instructions as best as you could, right? And you've still lost more weight and been in pain? That should tell her that this isn't working and she needs to give you more help. If she's halfway decent at her job then hopefully she'll get that and will do something more to help you. Do bring up the subject of tube feeding with her again, the worst she can say is no. Good luck tomorrow!
 
That's great you found a pharmacy! I really hope the GI doesn't keep you hanging on too long! How is the pred going?
I know it's a different system but I know here it's two weeks for a routine MRE to get results from radiographer to consultant. I know how you mean about not expediting it to find anything though, I hoped mine would show something useful but kind of knew it wouldn't.

I've still not heard from my GI so I may call them again tomorrow if I can't get my dietician to do it on my behalf. I just feel it would have more impact coming from her you know?

I have to admit as the probiotics and a few diet changes seem to have helped a lot I'm starting to doubt whether I do have IBD, I'm starting to think maybe it is just severe IBS and possibly gastroparesis. Although I know that still doesn't really explain the inflammation found on my colonoscopy or the fact that at 24 I developed a hemmie. I'm not sure that's normal.

Yeah I'm hoping the dietician is concerned enough about the weight loss to. I will be honest I've not always been great at drinking my ensures but a lot of the time recently either nausea has been too much or all the liquid I need to drink to keep my hydrated so my POTS behaves means I'm too full to drink the ensure. So I've not exactly been a perfect patient, but I've been trying to eat and I don't feel like my intake has dropped dramatically enough to have a 2kg weight loss in 8 weeks. I believe that's 4-5lbs.
 
Pred is going okay. I managed to taper down to 10 mg today. I'm worried that I'll have issues again once I try to taper below 10 mg, but I'll cross that bridge when I come to it. For the time being I'm down to 10 mg and doing okay at that dosage. I'm planning to taper to 9 mg at some point next week. I want to see how the IUD goes before I taper again - I get my IUD put in on Monday.

Inflammation on your colonoscopy is definitely not normal - you may very well have gastroparesis, but that doesn't necessarily mean you don't have IBD as well. That's the fun thing about chronic illnesses, they tend to bring their friends along. I developed arthritis at 31, that's certainly not normal (when my grandpa was alive, we'd compare our hip pains as we both had hip arthritis at the time - but of course, he was in his 80s and me in my 30s!). I don't know if there's a standard age for developing hemorrhoids, but I'd bet money that 24 is not it! I think hemmies usually happen with pregnant women or older people? Of course I've now had many hemmies myself so I am not a good gauge of who gets hemmies.

I just googled, and 2 kg is roughly 4.4 lbs. When you're already so thin, any weight lost is weight that you can't afford to lose, and I'd say that 4.4 lbs is pretty significant when you're already so thin. And I know that when I lose 4 or 5 lbs, my GI definitely takes that seriously, even when I'm at a healthy weight (heck, 17 lbs of weight lost in a month was what landed me in the hospital - and I was still within the "healthy" weight range even after losing 17 lbs, I went from 146 to 129). Plus the fact that your weight was lost unintentionally - there's obviously a big difference between intentional and unintentional weight loss. So, given all of that, I would think that your dietician and GI would take this seriously (or they should take this seriously!).
 
I hope the taper goes better than last time, the last thing you need is everything to flare up again. I hope the IUD placement goes well and isn't too painful, definitely have a hot water bottle or heating pad on standby.

Oh yeah I know, I already have the M.E/CFS and POTS combination, they are good friends and often stick together. Early on in my diagnosis journey I did read that women with endometriosis have a higher incidence of IBD than the normal population of women but then IBS is very common in endometriosis too. So who knows! And POTS and gastroparesis seem to sometimes go hand in hand (studies I've found so far say about 9%) so there's that too. I think I will definitely question my GI about the inflammation and if she is saying not IBD I will ask why. Yeah I think I'm about 95lbs maybe? 43kg bang on this morning. Not cool at 5'7" that's for sure. I think my dietician will take it more seriously than my GI in all honesty. Hopefully though the fact it has been unintentional that will give her a jolt you know?

Just to top it off I think I might be coming down with a cold. I swear as people who are chronically ill we should be exempt from viral illness...
 
Oh I know it, it's always like insult on top of injury when I come down with a cold or whatever. Like, really, I'm not sick enough already? I haven't already met my lifetime quota of being sick, I need to deal with a cold as well now? And it seems like colds last longer for me than for healthy people - the last cold I had lasted about a month! I hope yours is over with quickly and is not too bad.

95 lbs at 5'7" is frighteningly thin. I'm 5'8" and I believe underweight for me would be 122 lbs or below, so you're quite underweight. Even with my flare that landed me in the hospital a few months back, I didn't approach being underweight as 129 was my lowest weight, but even so my weight loss was dramatic enough that they admitted me, so I'm still puzzled as to why they haven't done more to help you yet.

And yes, I have a microwaveable stuffed animal that when you heat it up, it holds its heat for up to an hour. It's like a portable heating pad and it looks like a cute sheep. :p I'm going to microwave it just before I head to my IUD appointment so that it's nice and hot. I have a feeling that I'm going to need a heating pad for this so I am going in prepared!
 
Cat - when I had my IUD placed, they made sure to time it with my cycle, so that it was right around the same time as my period, because, as I understood it, the cervix is already more "open" so insertion should be easier. Granted, I had given birth, but my child was born via emergency c-section, so I'm not sure if that gave me any "real" advantage or not (ha!). Since you use the ring, I'm guessing you can "manipulate" your cycle? If so, I would ask if they still say the same thing about being on period making it easier!

Sarah - I too am shocked that they aren't taking you more seriously at this weight! I hope things improve when you see your dietician.

I went back to work for "real" (instead of just working from home) for the first time in 2.5 weeks today. Felt nice to be out in the world a bit again, even if the lunch part of my day didn't settle well - a very nice group took me to PF Changs (an asian chain here in the US) and I tried to be "safe" by having egg drop soup and tuna rolls...but I still ended up with D about an hour after my first bite :( .

Of course now I have to go to a full day conference for work tomorrow! We have to get there at 7:30am for breakfast, eat lunch there, and stay until 5pm!! I really hope that my immodium carries me through (I plan to pack the liquid in my bag, I find I can dose that in a more "as needed" way than the pills). Plus it's supposed to snow overnight and through the morning, and I have a 45 minute drive in normal traffic to this place - sigh.

Dh is the best, though. He went out and filled my car with gas already tonight for me, AND has offered to get up early and make coffee at, like 4:30am, so I have time to do all my makeup, hair, etc. (why yes I can be high maintenance!) before I have to leave around 6am (we're estimating that's when I should head out, if it's snowy).

Hope everyone is happy and as healthy as can be!
 
Wildmtnhoney said:
Cat - when I had my IUD placed, they made sure to time it with my cycle, so that it was right around the same time as my period, because, as I understood it, the cervix is already more "open" so insertion should be easier. Granted, I had given birth, but my child was born via emergency c-section, so I'm not sure if that gave me any "real" advantage or not (ha!). Since you use the ring, I'm guessing you can "manipulate" your cycle? If so, I would ask if they still say the same thing about being on period making it easier!

Sarah - I too am shocked that they aren't taking you more seriously at this weight! I hope things improve when you see your dietician.

I went back to work for "real" (instead of just working from home) for the first time in 2.5 weeks today. Felt nice to be out in the world a bit again, even if the lunch part of my day didn't settle well - a very nice group took me to PF Changs (an asian chain here in the US) and I tried to be "safe" by having egg drop soup and tuna rolls...but I still ended up with D about an hour after my first bite :( .

Of course now I have to go to a full day conference for work tomorrow! We have to get there at 7:30am for breakfast, eat lunch there, and stay until 5pm!! I really hope that my immodium carries me through (I plan to pack the liquid in my bag, I find I can dose that in a more "as needed" way than the pills). Plus it's supposed to snow overnight and through the morning, and I have a 45 minute drive in normal traffic to this place - sigh.

Dh is the best, though. He went out and filled my car with gas already tonight for me, AND has offered to get up early and make coffee at, like 4:30am, so I have time to do all my makeup, hair, etc. (why yes I can be high maintenance!) before I have to leave around 6am (we're estimating that's when I should head out, if it's snowy).

Hope everyone is happy and as healthy as can be!
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Hope the best for you and everyone.
 
Wildmtn, my doctor told me that as well, that they usually time IUD insertion to happen at a particular time in the menstrual cycle. But for me, because I just need to get this done ASAP before the end of the year (because I've met my out of pocket max for the year, so my insurance will pay 100%) but I had to have it after my MRE because you can't have any type of MRI if you have an IUD - so, for me the timing isn't working out with my menstrual cycle. And I haven't had kids. Oh, and they told me to take ibuprofen beforehand, but I'm not going to do that because I don't want to make my guts unhappy. So, with all of that, it's probably going to suck more for me than for the average woman, I think. Still, it's something I want to get done, and I'm prepared mentally to deal with pain & cramps. The nurse did tell me that the "Mirena" IUD is a bit larger, so if I absolutely can't deal with it once it's inserted, she's going to bring along another, smaller IUD (I forget what that one is called) and said they can try that one instead. So at least I have that option, but I think the Mirena lasts longer, so I'm aiming to be okay with that one. I just have to get through the initial suckiness - everything I've read says that the first 20-30 minutes are the worst, and from there it gets way less horrible.

(With regards to the ring, I don't think I'd get my period if I took the ring out now - I always take it out on the 25th of the month, get my period around the 27th, and put a new ring in on the 1st. So I just had my period like a week ago, I think my body would know that it's too early for another period so early in the cycle. So I'm just going to leave the ring in for now and take it out when the IUD is inserted, I guess.)

Oh yuck, I hate driving in snow. I drive a tiny car with tiny tires, and although it's a great car in most regards - very reliable, great gas mileage, can park it anywhere - it doesn't do so well in snow. So I drive really, really, really slowly in snow. :p Every single person who drives behind me in snow is probably cursing me out but I don't care, I'd rather go slow and not crash. Anyway, be safe driving to your conference, and I hope your guts play nice and don't give you too much trouble!
 
Yes definitely and colds always mess my digestive system up so that's really not helpful! And the cold and flu meds make that side even worse too so I have to suffer whether I take the meds or not lol. I usually have the colds that take a few days to build up and then drag on for ages which is frustrating but hopefully not this time. To be fair I've not had a cold in ages!

Yeah I'm certainly not happy that my GI hasn't done more to help in relation to my weight, I mean I've always been slim and around maybe 110lbs (I'm guessing there as I've always used stone) but 95lbs is not cool.

I have a collection of microwavable heat pads, I think it's like 7 or 8 now, it's a bit of a problem. I also have an electric one which is amazing! But yes taking one with you sounds like a really good idea for the IUD insertion. I hope it goes smoothly for you!

The dietician appointment just kind of went. I really need to force myself to have two ensures a day, it may mean slightly less food but if I stick to little and often it should be okay. We are also trying another supplement too which is super high calorie per millilitre so it's like 30-40ml three times a day and that's it. Plus you can add it to smoothies or like porridge or whatever so that could be good especially on the days I'm really struggling with volume. Other than that it's just waiting on the GI to act on the dieticians recommendations really. Because my appointment was in the afternoon I had an extra 800g weight compared to first thing so at least that looked better haha!

Wildmtnhoney I hope the conference goes as well as possible and the imodium does the trick! That's lovely that DH does things like that for you :)
 
Sarah, I just ordered myself a new microwaveable heating pad. :p All of mine look like stuffed animals - I have 3 so far, the new one will make it 4. And I have 2 plug-in heating pads as well (one for the couch and one for the bed). The stuffed animal microwaveable ones, I have the sheep, a cow, and a cat which is long and you can put it around your neck (with my migraines, I sometimes get pain which radiates down into my neck, and putting heat on my neck sometimes helps a bit). The new one I ordered looks like a fox, so cute. It should be here tomorrow, so I'm going to bring the fox with me on Monday to my IUD insertion. :)

Colds always make my guts feel worse as well, which leads me to believe that there must be some sort of autoimmune/immune system involvement going on. It seems to me that it goes like this - I catch a cold, my immune system turns on to fight the cold, while my immune system is active it remembers that it likes to attack my guts, so it does that for the duration of the cold. That's what it feels like anyway. That's how I can tell when I have a cold and not just allergies, if my guts start feeling worse.
 
You guys, I finally get to start LDN for real! I just got a call from my GI's nurse, my GI sent over the prescription to the compounding pharmacy. I can go pick it up first thing tomorrow. I'm so excited! I've been waiting ages for this! :D
 
Thanks Ron! I'm slightly in shock that this day is finally here, ha ha. I feel like this is almost as exciting as getting a diagnosis! I've been wanting to try LDN for so long and I finally actually get to! It still doesn't seem quite real. I'm very hopeful and excited. I go to pick it up tomorrow morning and I take my first dose tomorrow at bedtime. It takes awhile, weeks or sometimes even months, to fully kick in - but, I'll still be on prednisone for probably a couple more months anyway (likely 10 weeks, as I plan to taper by 1 mg per week and I'm currently on 10 mg), so hopefully by the time I'm off of pred, the LDN will have kicked in.

I'm just so excited, I feel like I want to celebrate! Instead of a pity party, for once it's just a party! :D I fought so hard for this, I begged my GI and bugged him and pestered him and showed him research on LDN and emailed him and called him and emailed some more and bugged his nurses and was just generally a real pain in the ass. It's been months of me fighting to be put on LDN. And I won that fight! It took a long time and a lot of energy and frustration, but I won. That in itself feels awesome. I'm an undiagnosed person and I fought to be put on a fairly experimental/new treatment, and I got it! That's crazy. And wonderful. :)
 
Cat, I'm so excited for you! And a little jealous. But you worked hard to get that prescription. Please keep us posted on how the LDN goes. I've done some research on it, and it really does sound like it has a lot of success with not many side effects. And it sounds like it helps with a lot of different conditions, which is good for us who aren't actually diagnosed. I really hope it works for you and makes you feel awesome!
 
Thanks akgirl! I take my first dose tonight at bedtime, so we'll see how it goes. I definitely did work hard to get on LDN. I couldn't believe it was finally real - once I left the compounding pharmacy with my LDN in hand, I got into my car and all my emotions just came out in this weird laugh-cry thing. I probably looked like a crazy person. :p I was alternately sobbing and giggling. And I'm pretty sure at one point I just cackled while tears were running down my face. Good thing I don't wear makeup, ha ha, because I would have ruined it for sure today!
 
LDN has been going fine, no side effects and it might be already giving me some benefits, not sure as it's only been 2 days (everything I've read says it takes weeks/months to kick in, but I feel like it might be helping already, but not sure because it obviously hasn't been weeks/months yet!). I was told to expect vivid dreams and/or sleep interruptions for the first few days, but I haven't experienced that at all - if anything, I am sleeping better than I was. :p I think my bladder is feeling less irritated and less urgency - they did tell me that I might experience benefits to other things besides my IBD, and I think my bladder is benefitting? Guts are doing fine as well. So far so good!

IUD insertion went okay, some cramping but nothing too terrible. The nurse kept expecting that I'd either need to hold her hand or that she'd need to hold me down or something, she kept hovering around me to the point that I laughed out loud at her. :p (I didn't need her to do either!) At home in my pajamas with my heating pad on now. Minor bleeding and some cramping still, but I expected that, and the cramping is steadily getting better with time. I figured I'd probably spend the evening with my heating pad on, and that's how it's going, but honestly I'd probably also be fine without the heating pad at this point. Like, compared to my IBD flare cramps, this is nothing. So if you also get an IUD, I think you'll do fine. Compared with my other issues, this has been fairly easy to get through.
 
Sigh, whining ahead. I got my flu shot, like a good patient...and now it seems I have a strain that it didn't cover. Hit me like a ton of bricks last night/this morning. Fever, cloudy head, running nose...and the most fun - some vertigo if I move too fast! (I think that's because my ears are all messed up, though). And of course mucusy D, because what would an illness be without that?
 
Wildmtn, I hope you're feeling at least a bit better now. That's awful! I always get my flu shot, but it seems like I get the flu anyway about 30% of the time - not sure if that's due to the dominant strain not being in the vaccination, or if my immune system is just garbage (probably a combo of both). Vertigo is horrendous, I had labyrinthitis a few years ago which caused me terrible vertigo for 3 months - I wouldn't wish that on my worst enemy. Even with this bad flare and hospitalization I had this year, I remember thinking, at least it's not vertigo! So I really feel for you, and hope you are feeling much better very soon.

LDN still going fine for me. I was told to expect sleep disruptions/vivid dreams. I haven't really had any vivid dreams, and for the first two nights I slept fine, but for the past 2 nights I haven't slept well. I wake up and can't fall back to sleep and my mind is racing and I feel jittery, like I've had coffee. Fortunately, I was told the sleep disruptions should only last about a week tops, so this should be going away soon. I'm going to take an OTC sleep aid tonight to hopefully get some better quality sleep. Other than that, no side effects from LDN and I'm feeling pretty good!
 
Thanks Cat! The vertigo seems to only appear if I lay flat for awhile, so I'm avoiding that for now and have been much better on that front...even though yesterday I nearly fell off the toilet during an episode (omg!). It's very helpful that I already have a wedge pillow (for reflux) in bed, so I'm sleeping more upright anyway. I thought my fever broke during the night, but now I seem to be 100F again, and feeling shivery so I guess not :(

Another thing that bothers me, that is silly really, is that I'm way overweight, but have been slowly losing weight since I got this new job, just by being more active, I think. But now I'm afraid I'll lose weight "badly" from being sick, and that bothers me more than I expected. It's like "I was doing so well! Stop acting up body!!"

I'm glad to hear the LDN is going as well as can be expected this early for you! I was just reading somewhere else that people are even using it for Sjogren's. I'd never really looked into it before, but I may!
 
Definitely do look into LDN, it apparently is used for a variety of illnesses with mostly good results. And it has very few side effects. Most doctors don't know much about it - I had to print out studies and bring those to my GI because he was not familiar with LDN.

And I know what you mean about weight loss. I'd like to lose a few lbs myself, pred has made me a bit chubby, but I absolutely hate losing weight due to illness. It feels wrong. Like, there's a right way to lose weight - diet, exercise, etc - and there's a wrong way - being sick and not absorbing nutritents/calories correctly and having a lot of diarrhea and having no appetite, etc. I'd love to be healthy enough to lose weight the right way and not the wrong way! Losing weight the wrong way, it makes me feel like I have to regain what I've lost to get healthy (and then lose it again the healthy way). I don't want my weight loss to say "sick girl", I want it to scream "healthy girl"! So I get it, or at least that's how it is for me.

Ugh, sorry the flu is still sticking around, that sounds miserable. I know what you mean about almost falling off the toilet due to the vertigo, when mine was at its worst I felt like I was going to fall off the bed, or even fly off the earth! Moving around as much as you can should help, that's what I was told with mine. With vertigo that originates in the inner ears, the brain is getting mixed signals about where it is in space - the more you move around, the more info you're giving the brain about where it is in space, and the faster you should recover from that. Obviously don't go crazy or anything, rest as much as you can too, but do get up to walk around your house slowly and carefully at times (hold on to the walls, or even use a cane if need be for stability). Hope you feel better soon!
 
Wildmtnhoney said:
Thanks Cat! The vertigo seems to only appear if I lay flat for awhile, so I'm avoiding that for now and have been much better on that front...even though yesterday I nearly fell off the toilet during an episode (omg!). It's very helpful that I already have a wedge pillow (for reflux) in bed, so I'm sleeping more upright anyway. I thought my fever broke during the night, but now I seem to be 100F again, and feeling shivery so I guess not :(
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I'm sorry you're still not feeling well. I have used Oscillococcinum in the past when it was too late to use antivirals like Tamiflu and it shortened the time span. I also use Vitamin C supplements, honey, and tea to feel better.
 
Cat-a-Tonic said:
I know what you mean about almost falling off the toilet due to the vertigo, when mine was at its worst I felt like I was going to fall off the bed, or even fly off the earth! Moving around as much as you can should help, that's what I was told with mine. With vertigo that originates in the inner ears, the brain is getting mixed signals about where it is in space - the more you move around, the more info you're giving the brain about where it is in space, and the faster you should recover from that. Obviously don't go crazy or anything, rest as much as you can too, but do get up to walk around your house slowly and carefully at times (hold on to the walls, or even use a cane if need be for stability). Hope you feel better soon!
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Vertigo is the WORST! I've had a spell of it all day today and it just feels awful. My ENT doctor suspects I have Meniere's disease but did not formally diagnose me yet. His words were - "Let's wait and see if it resolves." The symptoms have been continuous for several years, but I just started seeing him. I'm getting my tonsils out next month, so I wonder if he thinks it will help or something. Anyway, I sat in a weird conference room chair that I've sat in before (I hate them) and they always give me vertigo. I don't know why, either, but I always feel like I'm going to fall backward and it makes me anxious. :(
 
Hugs Miss Leopard,
Both my parents suffered from vertigo, my dad used to be bed bound for at least three days at a time with a bucket beside the bed . He always described it as being seasick on dry land. My mother used to suffer dropouts . One minute she would be sitting on a chair and next she would be on the floor . She would get so disoriented she would fall off whatever she was sitting on. I have been to emergency a couple of times with severe attacks. I take phenerghan 25 twice a day now (anti-histamine) and it seems to help. I haven't had an episode since I have been on it. All of my family have had chronic sinus problems. They seem to go hand in hand with vertigo. Ron.
 
Ron50, I have a family history of recurrent vertigo as well. So far I've only had the one 3-month bout with it myself (knock on wood), but I know of at least 3 people on my dad's side who have/had labyrinthitis recurrently. I really, really, REALLY do not want to experience that again so I hope that somehow the recurrent vertigo genes skipped me and that my labyrinthitis episode was just a fluke. Vertigo is horrendous.

I think that for me, my labyrinthitis was triggered by water in the ear. I had taken a shower and got some water in my ears, and it felt like I couldn't get it all out of my left ear. That ear then clicked for a few weeks. Then it all sort of hit me over the course of a week - that Monday I was fine. Tuesday I was slightly dizzy, Wednesday I was more dizzy. I woke up that Thursday and the world was spinning. It was like being on a lopsided carousel that was going 120 mph! It slooooowly and gradually got better, but I had vertigo for 3 months total. I don't ever want to do that again. I couldn't move my head without vomiting, I couldn't take myself to the bathroom. I couldn't keep food down at first except for Jolly Rancher candy, so that was all I ate for the first week. I couldn't shower, and even when I could shower I couldn't wash my hair - it made my head move around too much to shampoo my hair, I couldn't do it without puking. I was pretty gross for awhile. :p But anyway, yeah, since it was apparently water getting into my ear and causing an infection (? my doctors are still unsure as to what exactly happened) in the inner ear, I'm hoping that was just a fluke and not part of my family history of vertigo. I am super, super protective of my ears now. I do not get water in my ears under any circumstances!

MissLeopard, I think certain chairs do that to me as well, it's not pleasant. I hope your issues resolve and that it's not Meniere's. There was a girl on here a few years back who eventually got diagnosed with Meniere's, and I recall that she was not doing well at all. Vomiting daily and just generally really miserable. I don't know much about Meniere's aside from what she had said about her experience, but I know she was suffering a great deal. I hope you don't have that as well!
 
ohhhh, my FIL had Meniere's - I remember him just feeling awful for days. It got some better with strict salt control.

Thanks for the info on getting up and moving Cat - I've been doing that a bit more since I read your post this morning, and I *am* getting less vertigo overall (whew!) - and have even not had any (knock on wood) for about 2 hours now!!
 
That's great, Wildmtn! Glad to hear it helped! Walking helped my vertigo as well when basically nothing else did (they had prescribed me a med called Meclizine which they said should help with the vertigo, but all it did was make me super sleepy - apparently it's like the prescription version of Dramamine). So for me, I didn't take any meds for it and just walked as much as I was able to, and that did help. So that's the only thing I can attest to as far as alleviating vertigo. Do be careful though, like I said earlier, hold onto walls or use a cane - you don't want to fall!
 
Thank you for the support. The vertigo worsened last night while I was in the shower and I had to grab on to a bar for support because I felt like I was going to fall forward, which has never happened before. Usually, it feels like I'm in the hull of a ship and I sway side to side. The room would not stop spinning for at least a minute. Very scary. I think I'm going to contact my ENT's office and see if they can give me something better for the vertigo. The previous ENT I saw prescribed Klonopin, which is a highly addictive medicine, and it did not help with the vertigo - it only made me feel loopy and groggy like I was drunk. I disposed of it after that. Meclizine has limited results - it only seems to prevent attacks, not stop them if they are already occurring. :(
 
Umm hey guys :) I'm new and I don't really know if this is the right place to post but someone said to check out the undiagnosed section (is this it?). I was diagnosed with seronegative inflammatory arthritis 2 years ago and have been taking methotrexate for almost a year.

I've had issues with my bowels for as long as I can remember which I just put down to being normal for me but over the last few years I've been having more and more cramps and diarrhoea and mucus in my stools. My weight is steady which makes me think maybe it's more IBS not IBD but the fact that things got better with methotrexate makes me think that there may be an inflammatory element. I've been really embarrassed by it so I've never actually spoken to a doctor about it, but I am going to make an appointment with my GP to discuss what's going on with her.

I just wondered if you guys know how to work out the difference between IBS and IBD since some of their symptoms are similar but obviously have much different causes.

Thanks in advance!
 
Cat-a-Tonic said:
MissLeopard, I think certain chairs do that to me as well, it's not pleasant. I hope your issues resolve and that it's not Meniere's. There was a girl on here a few years back who eventually got diagnosed with Meniere's, and I recall that she was not doing well at all. Vomiting daily and just generally really miserable. I don't know much about Meniere's aside from what she had said about her experience, but I know she was suffering a great deal. I hope you don't have that as well!
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The ENT said he suspected it and then I told him I have a family history (my aunt has it on my mom's side), to which he replied that I have a higher risk. My aunt gets severe ocular migraines, worsening hearing loss, and vertigo. I don't get migraines, fortunately, but the vertigo is really bad. I also have fluctuating hearing loss where the ringing in my ears gets REALLY loud and the pressure in my ear builds to such a point that I lose hearing in that ear until they both go away. The previous ENT was a jerk and said there was NO WAY I had M.D. because I'd have WAY worse than I am now, but the new ENT suggested it before I even said anything.
 
Wildmtnhoney said:
ohhhh, my FIL had Meniere's - I remember him just feeling awful for days. It got some better with strict salt control.

Thanks for the info on getting up and moving Cat - I've been doing that a bit more since I read your post this morning, and I *am* getting less vertigo overall (whew!) - and have even not had any (knock on wood) for about 2 hours now!!
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The ENT said that if I have Meniere's, he will put me on a strict low-sodium diet of no more than 2g a day. That's going to be REALLY difficult. He also said they prescribe a certain type of diuretic that's supposed to control the hydrops (excess fluid build-up in the ears which causes the symptoms).
 
I missed seeing your last 2 posts as I was writing mine. An extremely low sodium diet does sound difficult, but you could do it on a trial basis to see if it helps I guess.
 
Pinger_genguin said:
Umm hey guys :) I'm new and I don't really know if this is the right place to post but someone said to check out the undiagnosed section (is this it?). I was diagnosed with seronegative inflammatory arthritis 2 years ago and have been taking methotrexate for almost a year.

I've had issues with my bowels for as long as I can remember which I just put down to being normal for me but over the last few years I've been having more and more cramps and diarrhoea and mucus in my stools. My weight is steady which makes me think maybe it's more IBS not IBD but the fact that things got better with methotrexate makes me think that there may be an inflammatory element. I've been really embarrassed by it so I've never actually spoken to a doctor about it, but I am going to make an appointment with my GP to discuss what's going on with her.

I just wondered if you guys know how to work out the difference between IBS and IBD since some of their symptoms are similar but obviously have much different causes.

Thanks in advance!
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This is the right place
 
Cat-a-Tonic said:
That's awful. :( Good luck with your ENT, hopefully they can do something to help.
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I actually just called them a little while ago and the MA said she would talk to the ENT for me and call me back later today. She said that the ENTs there usually try to avoid prescribing anything for vertigo because they've had limited results, so she said there are alternatives. I remember the ENT mentioning ear exercises where you turn your head different ways and it's supposed to restore balance, but I have not tried them. My aunt and friend have tried them for vertigo and it didn't work for very long, but I may give it a try.

I actually got an attack as I was going down the hallway and had to grab on to the bar (I work in a retirement community) to keep from falling. Walking around is a necessary component of my job, so this makes me want to avoid it as much as possible. :(
 
Take it slow and easy with the walking, and do use those grab bars as much as you need to. If you have a cane, use it during these attacks. I think you're about my age? (I'm 37.) I know it feels a bit awkward, especially at first, for young people like us to be using a cane, but if you need it for stability then there's no shame in using a cane. And full disclosure, I now own like 5 canes. I have several designs and colors so that I can coordinate my cane to my outfit (I have arthritis in my hips as well, so sometimes I need a cane for that, and I used my cane a lot when I was dealing with vertigo). If you don't have a cane, look into getting one, as this sounds like it's an ongoing issue for you. There are some really cute ones out there - well, as cute as a cane can be anyway.
 
Pinger_genguin said:
Umm hey guys :) I'm new and I don't really know if this is the right place to post but someone said to check out the undiagnosed section (is this it?). I was diagnosed with seronegative inflammatory arthritis 2 years ago and have been taking methotrexate for almost a year.



I've had issues with my bowels for as long as I can remember which I just put down to being normal for me but over the last few years I've been having more and more cramps and diarrhoea and mucus in my stools. My weight is steady which makes me think maybe it's more IBS not IBD but the fact that things got better with methotrexate makes me think that there may be an inflammatory element. I've been really embarrassed by it so I've never actually spoken to a doctor about it, but I am going to make an appointment with my GP to discuss what's going on with her.



I just wondered if you guys know how to work out the difference between IBS and IBD since some of their symptoms are similar but obviously have much different causes.



Thanks in advance!
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The only way to tell is by colonoscopy. I have Seronegative arthritis too. I have/had almost every symptom of Crohn's (fissures, diarrhoea, cramps, mouth ulcers, anaemia, weight loss, elevated CRP) but apart from a small patch of inflammation on one colonoscopy (had 3 so far) - all endoscopy tests have been negative for Crohn's. I have had 3 Pillcams too. So IBS!

My GI wants to see ulcers before calling it Crohn's. I think I have sub clinical bowel inflammation because of the arthritis. Anyway I am on Humira now which treats both (although my gut symptoms are terrible at the moment). Was on methotrexate for a year before that.
 
Cat-a-Tonic said:
Take it slow and easy with the walking, and do use those grab bars as much as you need to. If you have a cane, use it during these attacks. I think you're about my age? (I'm 37.) I know it feels a bit awkward, especially at first, for young people like us to be using a cane, but if you need it for stability then there's no shame in using a cane. And full disclosure, I now own like 5 canes. I have several designs and colors so that I can coordinate my cane to my outfit (I have arthritis in my hips as well, so sometimes I need a cane for that, and I used my cane a lot when I was dealing with vertigo). If you don't have a cane, look into getting one, as this sounds like it's an ongoing issue for you. There are some really cute ones out there - well, as cute as a cane can be anyway.
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I have really tried to make sure that I stand up slowly and walk steadily to prevent further attacks. I just called the ENT back (they close at 4pm) and the doctor wants me to have something called a VNG balance test. The soonest appointment they have is January 20th, so I'm having it in the morning at 8am. My mom has to drive because the MA said some people are too dizzy and nauseous. I asked what to do in the mean time so she's going to call me on Monday. Unfortunately, I have to endure until then... :stinks:
 
Lorikeetie, have you been looked at for other illnesses besides IBD/IBS? Behcet's comes to mind because of the mouth ulcers. And obviously with elevated CRP, that means you've got inflammation going on somewhere, so I'd bet money that it's more than IBS.

MissLeopard, I hope you're able to have a restful weekend without your symptoms being too awful. While you're waiting for the test, maybe you could do a trial of that low-sodium diet, see if that helps at all? And do as much walking as you can, like I said that was the only thing that helped my vertigo. Maybe you could try out those exercises you mentioned earlier, too. I recall that I tried those as well for my vertigo but they didn't seem to help for me - they could be beneficial to you, though, I've talked with some people who have said that those exercises help.
 
Cat - no I haven't. I totally agree with you about being more than IBS. My GI had thought Crohn's a few times, but I then get a normal colonoscopy so he says IBS. My first gastroscopy showed GERD and my second showed non-specific gastritis. I think faecal cal has come back positive at times.

I have scalp psoriasis and seronegative arthritis - both associated with a higher risk of Crohn's!! We will see, it has been 5 years now with terrible symptoms.
 
Lorikeetie said:
Cat - no I haven't. I totally agree with you about being more than IBS. My GI had thought Crohn's a few times, but I then get a normal colonoscopy so he says IBS. My first gastroscopy showed GERD and my second showed non-specific gastritis. I think faecal cal has come back positive at times.

I have scalp psoriasis and seronegative arthritis - both associated with a higher risk of Crohn's!! We will see, it has been 5 years now with terrible symptoms.
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I hope you get answers soon
 
Whine time sorry guys!

My dietician prescribed me another supplement to try which are shot style super high calorie for low volume ones that say "fat emulsion" as part of the description. I've literally had two of the 40ml doses and I have awful floaty yellow D :(

So I won't be continuing those! But I'm just so frustrated. Am I right in thinking that both the floating and yellow indicates some sort of malabsorbtion issue? And that's not an IBS thing? Also can't yellow indicate a liver/pancreas/gallbladder issue? Or malabsorbtion in the terminal ileum of bile?

Surely that's a sign that this is more than just IBS? I will be bringing this up with my gastro consultant when I finally see her but just feel like I need to go in prepared.
 
Sarah, I think floating stool means undigested fat in the stool? I'm not for sure on that. Yellow can just mean that it went through you too quickly, I believe. Probably your body couldn't handle that amount of fat all at once and just jettisoned it all out the other end, that would be my guess. I'd definitely call the dietician and let her know what happened and see if there's another type of drink you could try.

How's everybody doing today? Wildmtn, is your flu any better? I had my flu shot but I can hear people having coughing fits at work so I'm trying to avoid everyone and wash my hands often. I read somewhere that there are something like 65% more flu cases now than at this same time last year, so like you said, there must be a strain going around that wasn't in the flu shot. Yuck!

I'm doing okay-ish. LDN is still going well, my guts are calm and quiet. I got some scary news though on Saturday, I found out my grandma almost died. She was found with no pulse and not breathing and her face was grey. The staff at her facility tried to rouse her, and after a short time she gasped and started breathing on her own (I didn't know the heart could restart itself but apparently it did? They hadn't started CPR yet nor had they defibrillated her). She's apparently okay now but at the hospital they did zillions of tests and could find nothing wrong. So she's not on any heart meds or anything, and basically there's nothing to stop this from happening again since they don't know what caused it to happen. So, I spent the weekend crying and worried and stressed. I can't lose my grandma so shortly after losing my grandpa (he died in May). I just don't think I could handle that! So physically I'm fine, LDN is being good to me, but mentally & emotionally I'm a bit of a mess.
 
I'm doing much better each day, thanks for asking! I think having had the vaccine really did reduce the duration, so that's good.

Of course now...I'm having bleeding. It doesn't feel like a fissure, so I'm guessing an internal hemmie? Bright red, in the toilet and when wiping. I have a GI appt Thursday, and I'm wavering on calling today. I mean, I doubt they can get me in sooner, and I really DO NOT want an ED visit
 
Bright red blood in the toilet sure sounds like it could be an internal hemmie, and I'd wager that it's probably safe to wait until your appt on Thursday. (Don't wait if you bleed enough that it makes you light-headed or dizzy - I've had many internal hemmies and they sometimes can bleed a LOT and I have ended up going to urgent care when mine bled enough to make me light-headed.) At your appointment, they should be able to do an anuscope and confirm that it's a hemmie, and they might prescribe something like cream or suppositories to help shrink it.

Glad to hear your flu is getting better! I seem to be coming down with a cold myself now, likely thanks to all the coughing people at work, ugh. I think it's just a cold and not the flu, though. I don't have fever, nor aches. I was a bit chilled this morning but I think that's just because it's winter and it's been bitterly cold here lately. Mostly I just feel run-down, have a bit of a cough and sniffles and a sore throat. And my guts are unsettled but that happens with every cold/virus I get. So seems to be a pretty standard cold, I think. Not fun, but could be way worse.
 
and...I'm running a fever again this morning :(

I think I may have to suck it up and call my GP's office, because a fever a week after recovering from a fever doesn't seem like a good thing.
 
Wildmtn, I've had flus like that in the past, where it seemed to get mostly better and then came right back full-force. I seem to recall that's not uncommon with the flu. But I do agree that you should probably call your GP just to be safe, don't want to mess around with a fever. I hope it goes away for good soon!
 
The fever broke - who knows what it was about.

Saw GI today. I do have a fissure (no hemmies) even though I didn't have any real pain (maybe I'm just going numb from having a fissure there before, over and over - it's always at 12 o'clock!). I have an Rx for nitroglycerin ointment for it. I am also *still* having trouble swallowing, despite the PPI trial getting my eosinophil count way down on my last upper endoscopy. This GI is the EOE specialist at this hospital, though, and he says that they have seen people who have never had reflux have a response to PPI trial even though they really do have EOE inflammation, and not reflux causing their issues. The new plan is to drop the evening dose of PPI, and see if anything changes as far as swallowing issues getting worse (which seems silly to me, since it never got much BETTER), do another barium swallow to make sure there aren't motility issues or a missed stricture (already scheduled for mid-January), and then decide if/when we'll do another upper endoscopy to see if the eosinophil count is back high again, on once daily PPI -- which would point more toward EOE than reflux (which he really seems to think is my issue, is EOE inflammation).

I also went to the dentist today. Was supposed to just have 2 fillings, but ended up with the first half of a root canal on one tooth :-O (thank you sjogrens and no saliva, per dentist). The nerve was so inflamed that I also have an Rx for antibiotics from the dentist, because even though he mitigated the problem and put antibiotic stuff in the tooth cavity/pulp, he was shocked that I didn't have an abscess by how bad everything looked once he started drilling. He leaves on vacation tomorrow, so he went ahead and wrote the rx and will let me decide if I fill it and use it - clearly I don't want to have to, but I also don't want a bad tooth infection!
 
Are they treating the EoE with swallowed steroids and or top eight elimination diet??
Eosinophils are patchy and you could get "good" numbers by simply missing the patch
Hope they can scope you soon so you can get treatment
 
He typically treats adults with swallowed steroids, he said, but is willing to talk about elimination if I am once we repeat the scope, which probably won't happen until February :( Since my numbers were SO high the first scope (75 eosinophils in an area) he is thinking, like you said, that we just missed them the 2nd scope and/or I got some anti-inflammatory response from the PPIs, but just not enough.

Thanks again for all your info earlier, Little Penguin! I am glad I have read through it, and it helped me make the decision to go with this dr (who is the specialist in EOE here at the university hospital).
 
One more thing: I am pretty sure the tooth the dentist worked on is indeed infected, despite his attempts to prevent that. The cheek is swollen and warm this morning and I was in a TON of pain last night. So I'll be filling that Rx today. Which scare the daylights out of me, if I think about it, because it is amoxicillin. He wrote ON the Rx for me to eat yogurt *and* take probiotics while taking this med...but we all know I'm prone to C-Diff :( So hope I don't end up with it!
 
Wildmtnhoney said:
One more thing: I am pretty sure the tooth the dentist worked on is indeed infected, despite his attempts to prevent that. The cheek is swollen and warm this morning and I was in a TON of pain last night. So I'll be filling that Rx today. Which scare the daylights out of me, if I think about it, because it is amoxicillin. He wrote ON the Rx for me to eat yogurt *and* take probiotics while taking this med...but we all know I'm prone to C-Diff :( So hope I don't end up with it!
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I hope the best for you.
 
Cat I will mention it when I see her on the 4th I think, I will also give them another go once Christmas is out of the way just in case. How is the LDN going? Have you had better luck with the pred taper?

I FINALLY got my gastro appointment date in the post yesterday so will see the consultant again on the 27th January, a whole 7 months since my last appointment! I just hope it will be worthwhile.

Hope everyone has a lovely Christmas for those that celebrate it!
 

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