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Cat, I would not recommend getting naltrexone and compounding it yourself. That sounds like a recipe for disaster.

But, we have found that many integrative medicine specialists (who are often MDs --different from naturopaths) do prescribe LDN. There was one that was completely insistent about my daughter trying despite the fact that there was no research on it in kids at that time.

Generally, I do not recommend integrative medicine specialists at all...but it would be better to get a prescription and get it compounded at a pharmacy than get it abroad.

You could also look into finding a different GI that might be open to it.

Or you could email your GI and not mention LDN ( since he clearly does not want to discuss that), but ask what he plans to do to keep you from flaring and state that you're concerned that Lialda won't be enough to prevent another flare. That should at least make him address your concern, even if it's not necessarily with LDN.
 
Maya, per my last appointment with him, my GI feels like another mesalamine formulation is pretty much the only other thing he feels comfortable with putting me on. Ugh. I have already been on most of them so I let him know I'm not happy with that option.

Initially I was on regular Asacol (the one with 6 tablets per day) and that kept me in remission for a couple years, but then the patent ran out and they stopped making regular Asacol in the US (I think that was in 2012?). My GI put me on Asacol HD at that time, which is 2 big horse pills per day. But that failed. When I was on regular Asacol, I was passing 1 to 2 of the tablets undigested in my stool every day, but still absorbing 4 or 5 of them, so that was enough to keep me in remission. On Asacol HD, I quickly discovered that I was still passing 1 to 2 tablets per day, but since I was only taking 2 tablets per day, I obviously was not getting enough meds into my system and pretty quickly fell out of remission.

So then my GI put me on Delzicol, which was created to replace regular Asacol. It's a capsule - but really, if you open it up, it's an Asacol tablet (apparently without the special coating?) inside of a capsule. So you can't open it up and just take the tablet, you have to take the whole thing. Tablet inside of a capsule, so stupid. And since my body already had some issues with breaking down the Asacol tablets, it had an even harder time breaking down a tablet inside of a capsule. So that didn't work great for me either.

Then I tried Pentasa, but that's made more for small bowel involvement I think? And I don't seem to have much/any small bowel involvement, my pain and symptoms all seem to stem from the colon/TI area. So that didn't go great for me either.

Finally he tried me on Lialda, and that's been the best one since Asacol, I've been on it for a few years now, but obviously it's not enough anymore (to be fair, I think stress was a major contributor to this flare - my grandpa died a few months ago and it's just been a really stressful, bad year all around, so the Lialda just couldn't compete with how crappy 2016 has been - that's my theory anyway).

I think Apriso is the only mesalamine formulation available in the US that I haven't tried yet, that's the only one I can think of anyway. It's frustrating. I don't think more/different mesalamine is going to do anything, and my GI is not at all open to the idea of things like immunosuppressants nor biologics, so I feel like I'm at a dead end and LDN is the only real way out. I'm getting extremely frustrated which is why I even googled getting my own LDN in the first place, it was just sheer frustration and I know it's not wise nor a good idea. I'm just really getting to the end of my rope. I'm down to 9 mg of pred, tapering by 1 mg every 5 days, and I'm starting to really panic about what's going to happen when I'm off of pred. I don't feel like I have a lot of time to seek out another doctor (who doesn't know my history and who will likely treat me as though I have "just IBS") and I'm just freaking out, that's all. Like, am I going to flare up again when my grandma dies, too? She's 84 and has alzheimer's/dementia so she won't be around much longer. What's my body going to do when that happens? Or when the next really stressful thing comes along? That's why I panic-searched getting my own LDN. I'm going to do everything in my power to not get to that point, but I'm also a nervous wreck.
 
Yes that's exactly it Cat, so close but so far! I will probably see the dietician again in four weeks but that just feels like so long right now, it's just such a long time to keep stumbling through with so little energy. And even if at that appointment she decides we will go ahead with tube feeding then we still have to get everything organised so that could easily end up being another few weeks on top. I hate that I'm being so impatient but at the same time it's just been so long now that I'm so over all this waiting for someone to actually do something to try and improve things for me :(

I seriously don't know where to turn. I feel like my body is giving up but my GP doesn't really take it seriously and neither does GI. Dietician I know is doing the best she can within her powers and I don't want to be a difficult patient but right now I really wish I could just phone her up and beg her to place an NG next week and get me on some overnight feeds :(

Maya one tubie question I had, obviously I will have to sleep propped up, what's the best solution for it? I sleep semi propped up because of reflux anyway using two regular pillows and a V shape pillow, but it's definitely not a high enough angle for if they do the NG. Thanks in advance!
 
Cat, I completely understand why you want to try it -- it makes a lot of sense. I just don't know if compounding it yourself is safe. It is definitely very hard to go to a new GI, just can't think of any other options for you.

Though to be honest, without an MRE or biopsies to support an IBD diagnosis, I guess your GI is just kind of stuck :(. Being in undiagnosed land is a very hard place to be!

What about Sulfasalazine? Can't remember if I've suggested it before. It is similar to an -ASA so he might prescribe it.

sarahfh - my daughter actually did not sleep propped up. She probably should have because she had issues with reflux, but because she also has Ankylosing Spondylitis, it is most comfortable for her to sleep flat. She was on a PPI while on her tube feeds and she was ok.
Please, please make sure they monitor you carefully for Refeeding Syndrome if you start tube feeds at home. My daughter had blood work done three times a day in the hospital and that is how we caught it. She needed IV potassium and IV phosphate and actually had arrhythmias because of Refeeding syndrome. It can be fatal, so it is very important that you are monitored carefully. I wish they'd just admit you but I understand that it's hard over there.

Have you had anyone check your electrolytes and albumin? If they're off, they might hurry up with the tube feeds...just a thought. It is absolutely awful to be malnourished. My kiddo was so thin and malnourished that she could not get out of bed. That's when she FINALLY agreed to an NJ tube (she is a stubborn teenager ;)). She was also bribed with a kitten :ybatty:.
 
I have a question. Frequently throughout the day, it's like I can feel stuff coming up in my throat. I especially notice it when I drink water (which seems weird to me, but maybe it's just because that's what I consume most frequently??) and also when I bend over. I was thinking that it could be acid reflux, but it doesn't typically burn; it's just weird and uncomfortable. Also, as far as I know, I've never had acid reflux, and this just started over the past few months. Any ideas?

It sounds like everyone is having a pretty rough go of things lately, and I'm in the same boat. It's so hard to keep fighting when things don't get better and no one seems to understand how sick I really am. Hugs to all!!
 
Maya, nope, I had asked my GI several years ago about sulfasalazine because it can also supposedly help joint issues in some cases, but he said no. He thinks it has too many potential side effects so he vetoed that idea. I just know he's going to stick me on Apriso and tell me to follow up in 3 months, ugh. I realize that he's stuck, but I feel like I'm more stuck. I feel extremely stuck.

Sarah, don't worry about being a difficult patient. I long ago learned that basically I need to be a pain in the ass to every single person in the medical profession. :p It's what's best for me, being quiet and polite does not get me to where I need to be in terms of my illness and treatment, I need to advocate for myself and that means speaking up and sometimes being downright annoying. There have been weeks when I was really ill where I think I called my GI's office every day. I know he thinks I'm a pain in the ass - I saw a letter that he wrote to my GP once (my GP helpfully photocopied it and gave me a copy) basically saying that I'm a total pain in the ass. I don't care, what matters is that he takes my illness seriously and treats me appropriately, and for the most part he does. He's really conservative and by the book so sometimes I have to fight him like hell just to come to a compromise, but I will fight, cry, leave a zillion messages, do whatever it takes. At the end of the day, it's my health and I need to do what's best for me. So be a pain in the ass too! Or at least slightly annoying! Call your nutritionist! Call your GI and GP too! You clearly need help, so start talking to the people who are supposed to help you and let them know what you need!

Akgirl, that's pretty much exactly how my GERD is. I rarely have actual heartburn (although since I've been on prednisone I have had a bunch of heartburn, but it's not the norm for me when I'm not on steroids). I have a hiatal hernia, which is a hernia on the valve that's between the stomach & esophagus - basically, that valve doesn't close all the way and it allows stomach contents to come up my throat. Reflux meds do help - I currently take both Nexium (esomeprazole) and Zantac (ranitidine). Exercise, particularly anything that involves using my ab muscles and/or bending over forward, is my worst trigger. Shoveling snow is the worst, sometimes I feel "stuff" come up every time I bend over to get another shovelful of snow. Sleeping/lying down is my 2nd worst trigger. Even if the "stuff" doesn't feel acidic, it still has a bit of acid in it, and it's enough to screw up your esophagus if it keeps going on unchecked. When mine was at its worst, I would wake up with throat pain every single day. And, since I tend to sleep on my left side, I would weirdly have a sore throat but on the left only - apparently, stomach contents/acid were pooling in my esophagus as I slept, and since the left side was down, that's the side that hurt when I woke up. Not fun. An upper endoscopy can diagnose a hiatal hernia, if you have one. Treatment is usually reflux meds, or if it's really bad, there's a surgery called nissen fundoplication. I opted not to have the surgery, for now, because the potential complications are scary (some people end up worse instead of better after the surgery) and also because I'm fairly well controlled with reflux meds and avoiding certain food triggers (chocolate, tomato sauce, greasy/fried foods are all things I try to avoid, although I do have chocolate in small amounts and that's usually okay - I refuse to completely give up chocolate). My GP initially diagnosed my GERD based on symptoms alone, and it was confirmed via upper endoscopy. So call your doctor and get it checked out and get on some reflux meds, that should help a lot.
 
Thanks, Cat!! That really helps! Sometimes it's good to know that other people experience the same symptoms as you, just so you know you aren't completely losing your mind. :) I actually had an upper endoscopy two years ago, but that was before I started having these symptoms (of course, right?!). I love that your doctor basically called you a pain in the ass!! Honestly, I feel like we have to be that way! Whenever I see a new doctor, I have to decide if I'm going to be nice and polite, or sad and on the verge of tears, or angry and tough! Usually I start off nice and learn that I have to be more stern in order to get people to actually listen to me!

Sandy, you said this a little while ago, but I love that you told your husband that you want "I told you I was sick!" on your tombstone. Can I please have the same? I always tell my husband that one of these days my body is just going to give up and I'm going to die, and THEN everyone will be like, "Hmm maybe she really was sick...."
 
sarahfh said:
Yes that's exactly it Cat, so close but so far! I will probably see the dietician again in four weeks but that just feels like so long right now, it's just such a long time to keep stumbling through with so little energy. And even if at that appointment she decides we will go ahead with tube feeding then we still have to get everything organised so that could easily end up being another few weeks on top. I hate that I'm being so impatient but at the same time it's just been so long now that I'm so over all this waiting for someone to actually do something to try and improve things for me :(

I seriously don't know where to turn. I feel like my body is giving up but my GP doesn't really take it seriously and neither does GI. Dietician I know is doing the best she can within her powers and I don't want to be a difficult patient but right now I really wish I could just phone her up and beg her to place an NG next week and get me on some overnight feeds :(

Maya one tubie question I had, obviously I will have to sleep propped up, what's the best solution for it? I sleep semi propped up because of reflux anyway using two regular pillows and a V shape pillow, but it's definitely not a high enough angle for if they do the NG. Thanks in advance!
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Sarah, I think I had three pillows when I had the NG tube.
 
That's true Cat, you're definitely more stuck :(! Sulfasalazine is a pretty mild medication. I know it has more side effects than Lialda, but I'm surprised that he vetoed it. It is considered so mild that it's barely used for various kinds of inflammatory arthritis any more.

Have they considered a double balloon enteroscopy? We just found a stricture in my daughter's duodenum. It was much further down than a regular scope would go. Hasn't shown up on 3 SBFTs, an MRE or a pillcam! It's rare to have a duodenal stricture in adults, but much more common in kids. But small bowel disease (ileum or jejunum usually) isn't that uncommon in adults.

If IBD was in your colon, it is pretty likely that they would have found it on scopes. BUT if it was hiding in your small bowel, it could have easily been missed. And apparently imaging can miss things like strictures, so it could quite easily miss inflammation, I'd imagine.
 
Akgirl, it's definitely not all in your head! I had an upper endoscopy maybe a year before my symptoms started, too, and it was fine at the time, but a subsequent upper endoscopy after symptoms started did show a hiatal hernia. And I'm glad to hear that you're also a member of the "pain in the ass to doctors" club, ha ha. :) We should just have membership cards that we show to doctors at the start of an appointment, so that they cut to the chase and ask us what we want. :p

I love Sandy's tombstone idea as well, but I don't know if I want to be buried when I die. I kind of have always been obsessed with skeletons, and I kinda sorta want to be made into an articulated skeleton when I die. :p Is that weird? I could scare people on Halloween, or teach students about anatomy, or just hang out in the corner at parties. I'd be a cool, fun skeleton, ha ha. Would people be too creeped out if I really did that? I just want to be a skeleton, I don't even need the part about hanging out at parties (I'm not much of a party girl anyway) although I really do like the part about Halloween. :) Maybe, many many years in the future, my cool skeleton can hang out at Sandy's cool gravestone. I think my skeleton would be up for a road trip.
 
Another suggestion Sarah is I sometimes sleep propped up against the arm on our couch, with a bunch of pillows against it. You can "go down" a level by each pillow you move or reposition. I had to do that when I was having pleurisy pain, then blood clots in my lungs, as well as severe GERD (which GERD I still have, and yes, your symptoms sound very much like GERD).
 
Maya, I mentioned DBE to my GI at one point years ago, but he opted for pill cam instead (which, of course, showed nothing). The current plan for future testing is, the second I start flaring again, I call my GI and get the freaking MRE scheduled immediately. From there, I could ask about DBE if MRE doesn't find anything.

My GI has, for awhile, suspected it's microscopic colitis - that would explain a few things, such as why it doesn't show up visually. It's also got a skip pattern, so they sort of have to luck into biopsying the right areas to find it. Sooo, maybe they just didn't luck into it yet? I've had 3 colonoscopies and one flexi-sig over the past 7 years, so it's seeming more doubtful with each scope I have, but it's still a possibility I think.

I realized that part of why I'm freaking out is because it's almost my sick-iversary. I first got sick on Oct 9, 2009. I came down rather suddenly with what felt like a really horrendous stomach bug, but instead of being a 24 hour bug, it was like a 3 week bug where the LRQ pain never really went away. And then the "bug" came back 6 weeks later, and again a month after that, and that's when my GP said this has to be something like IBD and sent me to my GI. So Sunday is the 7th anniversary of when I first got sick. I think that's giving me some serious anxiety. I need to be mindful of that and to be very kind to myself the next few days.
 
^With regards to my skeleton post, I took a drink of water and then nearly snorted water out my nose with giggles - my drinking cup is in the shape of a skull (and I love it!). :p
 
A skeleton!!!! Please do it! Reading that totally cheered me up. Have you seen those things where you can be turned into a tree? Well a seed is planted in a pod with your ashes or something. I think that's what I want to do! I could be a home for small animals, or if I'm a fruit tree, people could eat me......or maybe that's creepy....?
 
Arrrgggghhhhhhh, the last SEVERAL posts just popped up after what I wrote above (I must not have refreshed my page). Akgirl, you sound a lot like me how I approach doctors. Basically, I take a "nice" approach until another approach is needed/emotions take over (whether anger or tears). Cat, I also don't like the idea of being buried, but those left behind would have a difficult time if I weren't. I've always liked the idea of cremation, it sounds nice and clean, but never considered your idea. Maybe we can "visit" when gone to "the other side," lol. :hallo3:
And Doug said sulfasalazine did nothing for him other than turn his pee orange.
And Cat is also correct, Akgirl, it is not in your head.
(Excuse me while I need to go to the bathroom here, all this bathroom talk on this forum:p ... )
 
If the choice were cremation or burial, give me burial any day (but don't embalm me, ew). I've honestly never liked the idea of cremation at all - I'm sort of terrified of fire, and it seems so... final. Not that death isn't final but to basically erase the body down to a pile of ash, it feels wrong to me. At least with a burial of a body, or with being a skeleton, there's still some semblance of a person there. One of my best friends died (ironically, in a fire) when we were 19. His parents had him cremated and they just keep his ashes at his mom's house. But I'm not close with his mom, I don't even know where she lives nowadays, so I can't just go there and pay my respects, you know? At least with a grave there's that. Or with a skeleton, you can just sit on the couch and watch TV while your cool skeleton friend hangs out next to you. :p I just like that idea so much. Apparently it's rarely done nowadays with human skeletons, though - I think I'd literally have to line up a taxidermist to articulate my skeleton after I die (if it's even legal?). I'm gonna find a way to do it, though, I just love the idea of being a skeleton forever. My grandpa had his own funeral details planned out like 30+ years before he died (he just died in May but he had written his own obituary back in, like, the 80s! We had to make a few updates to it). So I don't think it's too creepy to be thinking about this stuff now.

Okay, so on this creepy subject, does anybody else like watching the "Ask a Mortician" videos on Youtube? I just love her! Her videos have really entertained me, I discovered them on a bad belly day awhile back and her videos were so funny and interesting that it made me forget for awhile about my bad belly.
 
Maya, thank you, I get a lot of hip pain if I sleep too propped up so I'm worried about having to sleep too propped up. I guess I will see how it goes and work it out from there :)
I am pretty scared of refeeding syndrome if I'm honest, I'm pretty sure from how the dietician has been so far she is well aware I'm at risk so will work it into any plans, but I guess time will tell. It will certainly be going on my list of questions should we go ahead! I would probably feel safer being started off with it in hospital though. I wish they would just do it now though, I feel so awful and I just want to get started so I know if it's going to help.

Cat, I'm starting to think I may have to become a slight pain in the arse patient to be honest, I don't want to be but I don't know what else to do. I guess I will just have to see how things go. Also I'm sorry it's the anniversary of you getting sick, must be so frustrating to still be without definite diagnosis after all this time.

Ron and Sandy, thank you, I'm going to give it a go with an extra pillow if/when I try the NG feeds.

I'm definitely feeling a little sorry for myself this evening, getting through work was a struggle and I'm exhausted, my shoulder really hurts and it's very similar to the pain I had before shingles last year :( plus my chest still hasn't stopped aching/hurting/feeling tight and I'm so fed up of it, especially as my GP didn't really take it seriously. I'm pretty sure all this is related to my malnutrition but my GP basically refuses to acknowledge that it could be so I'm stuck :/ I hate to think or say it but I almost feel like I need to get properly sick and have to go to A&E to get someone to take me seriously and actually get help :(
 
sarahfh said:
Maya, thank you, I get a lot of hip pain if I sleep too propped up so I'm worried about having to sleep too propped up. I guess I will see how it goes and work it out from there :)
I am pretty scared of refeeding syndrome if I'm honest, I'm pretty sure from how the dietician has been so far she is well aware I'm at risk so will work it into any plans, but I guess time will tell. It will certainly be going on my list of questions should we go ahead! I would probably feel safer being started off with it in hospital though. I wish they would just do it now though, I feel so awful and I just want to get started so I know if it's going to help.

Cat, I'm starting to think I may have to become a slight pain in the arse patient to be honest, I don't want to be but I don't know what else to do. I guess I will just have to see how things go. Also I'm sorry it's the anniversary of you getting sick, must be so frustrating to still be without definite diagnosis after all this time.

Ron and Sandy, thank you, I'm going to give it a go with an extra pillow if/when I try the NG feeds.

I'm definitely feeling a little sorry for myself this evening, getting through work was a struggle and I'm exhausted, my shoulder really hurts and it's very similar to the pain I had before shingles last year :( plus my chest still hasn't stopped aching/hurting/feeling tight and I'm so fed up of it, especially as my GP didn't really take it seriously. I'm pretty sure all this is related to my malnutrition but my GP basically refuses to acknowledge that it could be so I'm stuck :/ I hate to think or say it but I almost feel like I need to get properly sick and have to go to A&E to get someone to take me seriously and actually get help :(
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Do you need a second opinion?
 
Sarah, I still have nearly 2 hours left of work myself (it's 3:40 PM here) and I'm also totally exhausted, so I totally get that. I've been eating candy just to stay awake. And honestly, with your chest hurting like that, if it were me I'd be tempted just to go to the ER/A&E anyway and have some testing done. That's scary, whether it's your heart or lungs or something else, you should have it looked at. And that would get another set of eyes on your case which is always a good thing. I know it sucks going to the emergency room, but sometimes it has to be done, so do give it some consideration. Just because you're not actively dying doesn't mean you're not, I guess, more passively dying? Or at least not well at all and in need of some medical care. And again, don't worry about being a pain in the ass! Just remember that your health is the most important thing, so if getting your health issues treated appropriately means you're an annoyance or inconvenience to others, screw them. :p YOU are the important one in this scenario!

I was reading some of the LDN threads in that sub-forum earlier, and someone had mentioned that steroids are contra-indicated while on LDN. Sooo, that gave me some slight hope. Maybe, my GI also knows that, and that's why he's taking his time - he knows I still have like 40-something days left on pred (assuming the rest of the taper goes smoothly & according to plan). That would bring us right up to my next appointment with GI, so mayyyybe he's just waiting for that appointment to discuss LDN with me in person. Okay, so probably not, but I'm grasping at straws for any semblance of hope right now! :p I'm probably just being dumb. It's stupid to get my hopes up in the slightest at this point. What's most likely is that I'm going to be put on Apriso and at some point my grandma will die and then I'll have another bad flare and then I'll have an MRE in a timely fashion this time around and it'll find nothing and every doctor involved in my care will shrug their shoulders and say they don't know what's wrong with me. And I'll get another big doctor bill which means I have to put off buying a new(er) car for awhile longer and I have to just keep crossing my fingers and hope that my car will last another year. And at some point I'll get to become a cool skeleton. ;) At least the story has a good ending, hah.
 
Ron, unfortunately getting a second opinion in the UK isn't as easy as in the US. As I haven't been discharged from my current GI I can't get a second opinion without paying privately (I can't afford the £200 initial consultation let alone further testing), and even then I would need my GP to refer me and as the GI hasn't finished investigations yet it's unlikely my GP would make that referral. It's frustrating, as much as I am grateful for the NHS, nothing happens quickly unless you have cancer.

Cat, it's just turning 11pm here, so I'm about to get into bed at last. I didn't want to come to bed too early or I know I would be awake early. I hope the last few hours at work have gone quickly for you!
I still feel like my chest doesn't hurt enough right now, but I'm going to keep an eye on it over the weekend and if it does get bad enough at any stage I will go in. I will probably actually ring our NHS 111 service who provide medical advice and assessment, usually if you say chest pain they make you go in by ambulance.
I will cross my fingers for you that it is just the GI holding off until you are off the pred before making any decision! I think sometimes the only way to keep going is to grasp at straws and hold onto that tiny bit of hope. I really hope they do something to prevent future flares for you though, your body (and I imagine bank account) definitely don't need another flare like this one!
 
When it comes to having a NHS, there would be definite pros and cons. It seems like such another world to me, but when I look at how much we have shelled out in medical costs, yowzers!
I'm not having a great day, still don't feel well, and like some of you more tired than usual. Considering I have narcolepsy, that is saying a lot. Because of a, well, um, medical "complication" I also broke a tooth last night. I got a notification today from our hospital's "patient portal" that my multitude of lab results were in (in prep for seeing kidney doc next week), and if I understood the results (which are always given in very technical terms, not for the layman to understand), they aren't good. If done at my GPs clinic, they never give results until doc has talked to you, but in this case, the nephrologist is in a small clinic of his own and uses the hospital's labs (seperate facility) where they don't coordinate whether doc has talked to you about results. I won't say any more until I talk to him in case all my googling of different values and meanings was misunderstood. I'll let you know when I know more tho.
I sure wish we were all here under different conditions!
 
SandyUte said:
When it comes to having a NHS, there would be definite pros and cons. It seems like such another world to me, but when I look at how much we have shelled out in medical costs, yowzers!
I'm not having a great day, still don't feel well, and like some of you more tired than usual. Considering I have narcolepsy, that is saying a lot. Because of a, well, um, medical "complication" I also broke a tooth last night. I got a notification today from our hospital's "patient portal" that my multitude of lab results were in (in prep for seeing kidney doc next week), and if I understood the results (which are always given in very technical terms, not for the layman to understand), they aren't good. If done at my GPs clinic, they never give results until doc has talked to you, but in this case, the nephrologist is in a small clinic of his own and uses the hospital's labs (seperate facility) where they don't coordinate whether doc has talked to you about results. I won't say any more until I talk to him in case all my googling of different values and meanings was misunderstood. I'll let you know when I know more tho.
I sure wish we were all here under different conditions!
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Amen
 
Sandy, same here about having shelled out a ridiculous amount of money for health care over the years! It's crazy how much it all costs, even with insurance. Thank goodness for payment plans. But seriously, I do need my car to last awhile longer while I pay off some debt...

I hope your test results weren't too scary and that the doctor can give you more info next week. Hang in there!
 
I'm coping a lot better today! Thanks!
And yes, even with double insurance (Doug's work covers family and is a good insurance), plus I have Medicare with my SSD (disability), but still have had many months or years that we payed several hundred in just med co-pays (SSD doesn't cover meds and not all meds are covered equally, esp. with "specialty" meds like for my narcolepsy, which without, I wouldn't even get out of bed most days. That particular med I have had almost $700 Co-pays for a few years, and a couple have about $250 co-pays). That doesn't even count Doug's co-pay for hospital or doc visits for him (but he does have a yearly cap on out of pocket at this point, thank goodness.) I think we could have bought you not only a car, Cat, but a house with what we shelled out. Most people at our income level are in a lot nicer houses at this age in life, but we are in a decent, albeit older, house in a very good, safe, neighborhood, so we are blessed. And we are blessed with the level of care we get from our docs at this point. Sometimes our docs spend quite a lot of extra time with us, (we are complicated) even when they are putting themselves behind schedule. (Now you know who is always putting the docs behind:ylol:.)
 
Sandy, I'm fortunate to have a house at all but mine is also very humble and older and a "fixer-upper" (we've been fixing it up for 8 years and counting and it's still not done, although I'm starting to understand that fixing up a house is something that's never really done!). We luckily bought our house in 2008, when the housing market had crashed and prices were super low, and we got a really great deal. My father-in-law helped us both with some financial stuff and also with a lot of repairs and upgrades to our house. We might still be renting an apartment if it wasn't for all his help! And, maybe most importantly, I hadn't gotten sick yet. I got sick about 11 months after we bought our house, so I wasn't dealing with doctor bills and prescription co-pays and expensive testing and all that jazz when we bought our house. Things might have been very different if I had already been ill, we might have decided we couldn't afford to buy a house. So yeah, I'm lucky to own a house at all, so I try to be mindful of that and thankful for my small but cozy home. And, a little less than 9 more years and it'll be paid off - I'll be 45 when my house is completely paid for. (My car won't last another 9 years though so I do need to figure out something soon-ish in that regard!)

And hah, I'm also the one who is always putting the docs behind schedule! My GI is always late for appointments anyway so I figure the patients after me must also be aware of that fact and won't care much if he's extra-late after I sit and pick his brain and ask a zillion questions and go way over whatever my allotted time is.

Today is my sick-iversary, I've been ill for 7 years as of today. I'm trying to be really nice to myself today. This morning I slept in and am thinking about doing a little sewing. This afternoon I'm going to visit my grandma in her facility, and visit my grandpa's grave, and then tonight going to settle in with some crocheting and watch my Green Bay Packers hopefully beat the Giants.
 
I have to admit I really don't know how I would manage without the NHS, I seriously have no idea how I would afford it if I had to pay for healthcare, my job just doesn't pay enough for it.

Sandy I hope it won't be too long until you get your results! I will be thinking of you.

I'm still struggling with feeling impatient and unwell. I guess it doesn't help that I've mentally got my head round the idea of the NG tube and I just want it all sorted now you know? Plus when the dietician this week said my body at this weight will have used up all my visceral fat too so my body will be working on muscle now because my intake is so low, it kind of freaked me out a bit. Like I know that already but the thing is, hearing someone say it out loud is actually a bit scary. It makes it real.

It probably sounds bad but part of me is hoping my chest pain increases enough to justify going to the out of hours medical centre/A&E while I'm off work today or tomorrow. At least then someone might put two and two together and actually help!
 
Cat-a-Tonic said:
Sandy, I'm fortunate to have a house at all but mine is also very humble and older and a "fixer-upper" (we've been fixing it up for 8 years and counting and it's still not done, although I'm starting to understand that fixing up a house is something that's never really done!). We luckily bought our house in 2008, when the housing market had crashed and prices were super low, and we got a really great deal. My father-in-law helped us both with some financial stuff and also with a lot of repairs and upgrades to our house. We might still be renting an apartment if it wasn't for all his help! And, maybe most importantly, I hadn't gotten sick yet. I got sick about 11 months after we bought our house, so I wasn't dealing with doctor bills and prescription co-pays and expensive testing and all that jazz when we bought our house. Things might have been very different if I had already been ill, we might have decided we couldn't afford to buy a house. So yeah, I'm lucky to own a house at all, so I try to be mindful of that and thankful for my small but cozy home. And, a little less than 9 more years and it'll be paid off - I'll be 45 when my house is completely paid for. (My car won't last another 9 years though so I do need to figure out something soon-ish in that regard!)

And hah, I'm also the one who is always putting the docs behind schedule! My GI is always late for appointments anyway so I figure the patients after me must also be aware of that fact and won't care much if he's extra-late after I sit and pick his brain and ask a zillion questions and go way over whatever my allotted time is.

Today is my sick-iversary, I've been ill for 7 years as of today. I'm trying to be really nice to myself today. This morning I slept in and am thinking about doing a little sewing. This afternoon I'm going to visit my grandma in her facility, and visit my grandpa's grave, and then tonight going to settle in with some crocheting and watch my Green Bay Packers hopefully beat the Giants.
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I hope they do Cat. My team is the Redskins
 
Oh Sarah, I hope you can get admitted without getting worse. Chest pain is scary enough in itself, and (not to scare you, I'm sure you already know) heart problems can come from being undernourished, so is there a way to get admitted just based on that? You have enough to deal with already!
I'll be thinking of you, and all here. . . :ghug:
 
Well it's been a frustrating 24 hours. Short version, chest pain increased, I got the tingly hands and feet, bit breathless, muscle cramps etc. Called the out of hours advice line, they sent me to A&E. They took blood, everything fine (including electrolytes) and told basically they don't know what it is and I could go home.

So that was a waste of time and energy. I'm still no further forward, no closer to figuring out why and no closer to feeling any better. To be honest I feel pretty terrible today. I'm seriously so frustrated and fed up :( I don't even know where to go from here, my GP is useless, A&E were useless, so what now?

The only useful thing that A&E said is that the tingling etc could be caused by hypocalcaemia. But they didn't offer any further information on that.

I seriously want to give up now.
 
sarahfh said:
Well it's been a frustrating 24 hours. Short version, chest pain increased, I got the tingly hands and feet, bit breathless, muscle cramps etc. Called the out of hours advice line, they sent me to A&E. They took blood, everything fine (including electrolytes) and told basically they don't know what it is and I could go home.

So that was a waste of time and energy. I'm still no further forward, no closer to figuring out why and no closer to feeling any better. To be honest I feel pretty terrible today. I'm seriously so frustrated and fed up :( I don't even know where to go from here, my GP is useless, A&E were useless, so what now?

The only useful thing that A&E said is that the tingling etc could be caused by hypocalcaemia. But they didn't offer any further information on that.

I seriously want to give up now.
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Sarah please know that everyone is here to support you. Maybe you could get another opinion.
 
Sarah, I sure hope a few hours has led to you feeling at least some better. Ron is correct, we are here for you. :ghug:
 
Thank you for the support, it really does mean a lot right now. I'm feeling a little better but still got the chest pain and don't feel quite right. I've left a message for my dietician asking if I can speak to her, I want to find out if this could be related to my malnutrition or something.

I'm honestly so close to just stopping all the vitamins and supplements and nutritional drinks and forcing myself to eat despite the nausea/pain/bloating/fullness/diarrhoea etc. So close to discharging myself from gastro and the dietician and giving up trying to sort out this chest pain and get myself better. I just don't care anymore what happens.

Sorry for all the negativity, I just don't know where to turn :(
 
Sarah, I completely understand the negativity, don't apologize. Sometimes you get to what feels like a dead end and it's okay to be angry, upset, sad, or whatever you're feeling. I can understand the logic behind your thoughts - you've been so ill for so long, but nobody seems able to help, so you may as well just make yourself worse in a desperate attempt to get some actual help. I know that feels like it makes sense, but please don't make yourself feel worse on purpose. It's only going to bring more misery for you, hun, and there's no guarantee that anybody will be able to help or that anything will immediately change. I know it's hard, but keep trying to take care of yourself and keep fighting to get some real help and answers. Your body has already been through a lot, so try to be as gentle as possible to it, don't make it worse on purpose.

Keep leaving messages for your dietician, GI, GP, and anybody else you can reach. Let them know that you're deteriorating and in pain and in need of help. (Like I've said, be a pain in the ass! These people are here to help you, so reach out and let them know that you need help.) Go back to A&E if need be - I had to go in 3 times before I was finally admitted to the hospital.

I hope you're okay. I know that things like depression and anxiety are really common when you're dealing with a chronic illness, I've dealt with those things myself and it makes a difficult situation feel impossible sometimes, and with you talking about not caring anymore about what happens, it sounds to me like you're dealing with some of those things as well. I'm worried about you, both physically and mentally it sounds like you're in a really bad place right now. Please take care of yourself as best as you can and let us know what happens, if you're able to get ahold of your dietician or if you go back to A&E. And feel free to message me anytime, I'm here for you and listening if you need somebody to vent or talk to.
 
I definitely feel like I'm at my dead end :( I have no doubt that this situation has made me depressed, once again I'm on the wait list for some talking therapy of some sort, but wait lists here are at least 6 months.

To be honest, I don't want to do it to make myself worse so someone will actually help, I actually just don't want to do any of it anymore :(

My dietician didn't call today, so I will leave it tomorrow then call again Thursday if still nothing. I see the GP Monday so I will just leave it all until then. I don't have the energy to keep chasing to be honest. I barely have the energy to look after myself right now as it is.

Thank you Cat, it means a lot and I'm so glad I have here to come too.
 
Sarah, friend, so many of us here have been in that hopeless state because of lack of understanding from the medical profession. To hear (which I knew from this forum already) others go through it has tears in my eyes right now. I ache for you! I know you are tired of fighting for yourself, (and it's not that you wish ill for yourself), but to stop fighting does bring getting worse. I'm getting ready for my own doc appointment, which I'm nervous about, but thought I would read one of my favorite threads to give me a little hope. I'm a religious person, so was going to pray about the appointment after (still will),and now will say a special prayer for you as well. God doesn't always answer my prayers the way I want (He knows a little more than me), but I seem to always find some comfort or peace in the end if I'm "listening." I hope this peace finds its way your direction (as well as healing). :ghug:
 
Sarah, what I do when I'm feeling hopeless and like giving up is, I give myself a day. One day all to myself, where I can just cry and punch pillows and yell and give up and cry some more and eat bad things or not eat at all. A whole day to have a pity party for myself and vent out a crap ton of emotions that I've been bottling up and to just feel whatever emotions I need to feel, to let it all out and to let myself feel sorry for myself. That really seems to help, and the next day I feel better about picking myself up and dusting myself off and carrying on the fight for my health. So, maybe take a day, as one day shouldn't put you too far behind in terms of your nutrition/malnutrition. But see if you can't carry on once you've had a pity party day, at least for a little bit longer.

Speaking of having a pity party, I need to vent a bit. My prednisone taper is not going well, again. I'm only tapering by 1 mg every 5 days, which shouldn't be problematic at all. But it is. A little while back, I had tried to taper from 10 mg down to 7.5 mg, and I ended up having a lot of abdominal pain. So then I went back up to 10 mg (and the pain disappeared), and my GI told me to taper down by 1 mg every 5 days instead, and he wrote me a new prescription for some 1 mg tablets. I tapered from 10 mg to 9 mg with no problem. But 2 days ago, I tapered from 9 mg to 8 mg, and I've had some mild-moderate abdominal pain ever since, mostly in the LRQ. Ughhhh. Really frustrating! So I have sent my GI yet another email asking what to do now. I'm thinking it's probably best that I go back up to 10 mg for awhile longer, as clearly my body does okay at that dose but doesn't seem to like anything much lower at the moment. Maybe a few more weeks of 10 mg will be enough that I can taper down successfully. I'm really frustrated in the meantime, though. Speaking of punching pillows, I'm thinking of buying boxing gloves and a punching bag so that I can really punch something substantial when I'm feeling like this. Ugh.

Sandy, good luck at your appointment - I hope everything goes well and that you're doing okay and that your lab numbers aren't as scary as you were thinking. I'm not religious, but I'm glad you're able to find some strength and serenity through that outlet. Let us know how things go at the appointment, will be thinking of you.
 
Sandy, thank you, I hope your appointment goes as well as possible today.

Cat, I have basically being doing that the last couple of days to be honest. I know I need to dust myself already it's just been tough. It really doesn't help that my bowels really aren't happy and my nausea is high so I feel even less like eating and drinking. I'm slightly worried I could have caught a stomach bug while at A&E :(
I'm sorry you're struggling so much with the taper, I hope the GI is happy to let you stay on the 10mg a while. I do know some people seem to end up staying on steroids for months and months, some almost a year, so hopefully he won't mind. And hopefully it will prompt him to try a better maintenance med for you.
 
Hi all. Had my appointment which left me with some mixed news, tired now, will tell more about it tomorrow. Hang in there everyone, with all you have going on. :ghug:
 
Sandy I hope the appointment went as well as possible and you are doing okay.

Cat how is the taper going? Have you gone back up to 10mg?

I hate to sound like a broken record and moan again but I've had another set back in this battle and I just don't know what to do, I really am closer and closer to just giving up. My dietician called this morning, she still hasn't been able to get hold of my GP so has written to him instead. The dietician team don't have the authority to authorise NG feeding, my GP would have to do it. And my GP has been useless when it comes to my malnutrition. So I can basically assume that it's not going to happen.
I see the dietician again 7th December. Still nothing from gastro. GP on Monday.

I am on the brink of giving up. I have spent this week periodically bursting into tears, writing down what I want at my funeral and where I want my ashes scattered just in case, and finding ideas of what to write in my resignation letter for work because I'm pretty sure I'm going to have to quit. If I don't they will just sack me anyway. I bought myself yet more pjs/lounge clothes and a huge snuggly scarf to try and cheer myself up today. My bank account can't cope with my low mood haha!
 
Sarah, poor dear, I so feel for you. (And yet again we are alike - I am actually crocheting a big snuggly scarf/shawl for myself today, just taking a break from it now because my hand cramped up.)

Can you beg or demand that your GP do something to help about your malnutrition? It sounds like he just has to give the okay on the tube feeding? Put up a fight if you have to, tell him you're not leaving the exam room until he gives the okay on it. If you're this close to giving up on life, I say fight like hell first for this chance - you have nothing to lose, right? Don't plan your funeral just yet until you kick, scream, cry, throw a tantrum, do whatever it takes at that GP appointment on Monday to get him to give the okay to your dietician. (I say this as someone who has already planned that I want to be an articulated skeleton after I die.) As long as there's a chance that you could get him to agree to the tube feeding, don't let that chance go by. Make him help you! That's supposed to be his job, so tell him you literally feel like you're dying and tell him exactly what you need to get better, which is tube feeding. Be strong, you can do this on Monday. Even if you cry, it's okay (I've found that sometimes doctors respond well to crying and will sometimes more easily cave in and give you what you're asking for). I once saw a fake award on the internet that said "Cried but did the thing anyway." I think you must earn that award on Monday - do the thing! Get him to okay the tube feeding! I am so cheering you on from across the pond, and I will wear my big snuggly scarf in solidarity with you. You got this, you can do this!
 
Are you hanging in there Sarah? We aren't going to let you be alone in whatever ailments you are going through. (Same goes with everyone here.) I just said another extra prayer for you, Sarah, specifically. Then I couldn't help but add the names of those of you I know from here.:ghug:
I know quite a few of you aren't religious, which I understand especially in this day and age, with all that happens in this world. That said and though I say I'm religious, that doesn't mean I always act, say or think what a religious person should be acting like, saying or thinking (but I do put in some effort). I am a very imperfect person. What I am saying when I say a "religious person" is just that I have a belief in a higher power than those of us here as mere mortals. I also know there are various degrees of religious belief amongst us, some may be Christian or Jewish, etc., and some may not prescribe to any religious organization but have some spiritual beliefs, but as stated above, I do get a lot of peace from my beliefs mostly through prayer and a few personal experiences, especially when going through physical or emotional trials. But enough about religion, I also believe that each person should be entitled to find their own truths and beliefs. And I value each and every one of you for who and what you are.
Ok, I'm finally able to tell about my doc appointment. I would have written about it earlier, but life got in the way with things to do and then ended up with a migraine. Actually, it is (I hope) very good news for the most part. The good news is that I did misunderstand the previous lab results, and I'm not in any stage of kidney failure. (Whew!!!!!) The bad news is that I'm still having a lot of "bladder spasms." He put me on a long term med to help with the bladder spasms, and at first I didn't think it was going to do any good because I was still having the urgency and burning and pain until the next day (yesterday), but it is apparently a med that needed to be built up in the system and it is making a lot of difference right now, and much needed relief. YAY! But what is causing all of this is still up for debate, as it doesn't appear to be my kidneys. He says it appears to be "structural." He wants me to see both my gynecologist and a urologist to see if they can determine exactly what structural abnormalities are causing this, and causing far too many infections. As usual, it isn't going to be something typical that is causing my problems. But at least I have some relief from this at the present. Some of the pain/urgency is still there, but at a much more minimal level, and I can handle what I have. I also was able to make it through the night with only one trip to the bathroom instead of about six or eight. This should help in so many ways. Yay, yay, yay!!
 
Hi everyone. I just wanted to update you on my personal progress. I had surgery yesterday (Wednesday) with the expectation that the doctor would officially diagnose endometriosis (you cannot have an official diagnosis without surgery), but it turns out that the cause of my pain was a very large cyst on my right ovary. He gave my mom the pictures from the laparoscopy and, compared to the left side, the right side was huge. I think the reason I ended up in the ER is that the cyst was leaking and causing back pain. My doctor had to drain the cyst and then remove it.

Anyway, I'm out of work until at least the 18th, but it may have to be extended if I'm still in a lot of pain. I'm spending all my time sleeping and resting. I'm trying to get up and walk around as much as possible to prevent blood clots, too. :)
 
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I almost cried at work just now, but for once it was happy tears. I had a co-worker who has UC, and he was my confidante. I could vent to him about anything I was going through and he'd understand, and he has such a positive attitude that always made me feel better. Well, he retired in the spring, so I haven't had an "in real life" IBD'er to talk with and I really miss his company. He just came by to visit, and it was like old times. He's on my facebook so he was aware of my flare and hospitalization and fails with my pred taper and everything, and he said I'm looking better than he expected (even with my pred chipmunk cheeks, ha ha). It was seriously so nice to be able to talk with him in person again, though. He really cheered me up! :) I wish I could have such a positive attitude, I don't know how he does it. He's like a ray of sunshine and I'm like a gloomy cloud, hah. But sometimes you can get a rainbow out of me. ;)
 
Cat-a-Tonic said:
I almost cried at work just now, but for once it was happy tears. I had a co-worker who has UC, and he was my confidante. I could vent to him about anything I was going through and he'd understand, and he has such a positive attitude that always made me feel better. Well, he retired in the spring, so I haven't had an "in real life" IBD'er to talk with and I really miss his company. He just came by to visit, and it was like old times. He's on my facebook so he was aware of my flare and hospitalization and fails with my pred taper and everything, and he said I'm looking better than he expected (even with my pred chipmunk cheeks, ha ha). It was seriously so nice to be able to talk with him in person again, though. He really cheered me up! :) I wish I could have such a positive attitude, I don't know how he does it. He's like a ray of sunshine and I'm like a gloomy cloud, hah. But sometimes you can get a rainbow out of me. ;)
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That is good, Cat.
 
Sandy I'm glad it's not kidney failure, that must be a huge relief! I hope they can figure out what is going on soon so you can start some sort of treatment.

MissLeopard I'm glad your surgery went well, hope the recovery goes smoothly for you. It took me about 3-4 weeks after both my endometriosis surgeries (laparoscopic) to feel back to normal if I remember rightly, so don't put too much pressure on yourself to be back to normal straight away. Both times I was told it was a week recovery time, what a lie haha!

Cat I'm glad you got to chat to your colleague, that must have been lovely. How is the pred taper?

Well, I'm still not really any better to be honest. Feeling very weak and exhausted and generally terrible. The chest pain is still there. I visited my GP yesterday, he is trying me on gabapentin in case the pain is like nerve pain or more upper gastro related and we will be keeping an eye on it. I'm still pretty sure it's my body trying to give up but I will try the gabapentin. I'm actually hoping it might help some of my other pain to be honest. The GP hasn't yet received the letter from the dietician, but he will keep an eye out for it. I explained one thing in it will be about overnight NG feeds and he said it would be gastro who would have to arrange that as far as he is aware, so looks like this is going to go round in circles. I explained about having not heard from gastro and the problems I'm having with the nausea/upper abdo pain/spasms/reflux/feeling full easily and for a long time etc and he is going to chase gastro up for me so again that's something at least!
If it is my gastro who has to decide on tube feeds I'm really not hopefully about it happening to be perfectly honest. My gastro is useless and is the one who said my weight isn't a concern because I've not any more weight since referral to her (well nothing significant just a few pounds fluctuation). I have no idea how I will get around that. But I might take a copy of the NICE guidelines on nutritional support with me, that might help. Plus I'm trying to find as much information as I can on POTS and gastroparesis is I can too to try and get her to go a gastric emptying test.

I'm feeling a slight bit more positive today, I guess because my GP actually listened and is trying something. I said about how low my weight and BMI have been for so long and he looked a little surprised/shocked, it kind of made me think that they don't actually absorb some of the information they write down. I just wish things would happen sooner that I know they will. Although physically I feel awful haha. I've slept for 12 hours and could easily nap, I'm getting cold easily and breakfast has made my stomach pain and nausea go up and it's still in my stomach 5 hours later!

However, I'm going to bake banana bread to eat while mum and I watch Strictly Come Dancing tonight :) Oh and the kitty cats have been extra snuggly this week so that's nice :)
 
Miss Leopard - I hope the surgery provided not only some answers, but some lasting relief.

Sandy - I'm so glad it's not kidney failure!

Cat - I know you've been missing that co-worker, glad you got to see him again :)

Sarah - I'm so sorry you feel perpetually "stuck" with these practitioners, but I'm glad your GP appears to be listening! And banana bread sounds great!

Hello to everyone I am missing!

I am annoyed over here. I got a letter from the teaching hospital, where 99% of my care is....that my GI doctor is no longer employed (it states she has "retired" but I know they moved her from the "main" campus, with LOTS of patients, to a satellite office, with only a few, just recently, and she has only been there 4 years). W T F? First it was the dr that dx me w/Sjogren's, now the dr who is (was?) helping with the eosinophilic esophagitis dx. I feel like I'm driving them out of practice!! :O I sent an email to her office, begging for help on what to do next. My endoscopy still appears to be scheduled in the system, but I'm not sure if that is still "valid" or not, since the dr who ordered it is gone. And of course I need new GI to follow up with after that. We'll see if they get back to me Monday/Tuesday and what they say. I'm not super hopeful, at this point. I may need to go back to my "other" old GI....what a mess!!
 
Wildmtnhoney said:
Miss Leopard - I hope the surgery provided not only some answers, but some lasting relief.

Sandy - I'm so glad it's not kidney failure!

Cat - I know you've been missing that co-worker, glad you got to see him again :)

Sarah - I'm so sorry you feel perpetually "stuck" with these practitioners, but I'm glad your GP appears to be listening! And banana bread sounds great!

Hello to everyone I am missing!

I am annoyed over here. I got a letter from the teaching hospital, where 99% of my care is....that my GI doctor is no longer employed (it states she has "retired" but I know they moved her from the "main" campus, with LOTS of patients, to a satellite office, with only a few, just recently, and she has only been there 4 years). W T F? First it was the dr that dx me w/Sjogren's, now the dr who is (was?) helping with the eosinophilic esophagitis dx. I feel like I'm driving them out of practice!! :O I sent an email to her office, begging for help on what to do next. My endoscopy still appears to be scheduled in the system, but I'm not sure if that is still "valid" or not, since the dr who ordered it is gone. And of course I need new GI to follow up with after that. We'll see if they get back to me Monday/Tuesday and what they say. I'm not super hopeful, at this point. I may need to go back to my "other" old GI....what a mess!!
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I hope you can get a doctor who can help soon.
 
Hi Sandy,
I am glad you don't have to add kidney failure to your resume, it is no fun. I am officially at stage two renal failure from nephrotic syndrome. If I don't take cyclosporine twice a day I lose seven grams + of protein a day. My neph and I had a big talk a few weeks back. I asked if my type two diabetes could be causing my increasing problems with neuropathy. we think the neuropathy may be starting to reach my organs particularly my colon. I am having increasing problems with constipation. I am having a lot of trouble controlling oedema , my legs are filling with fluid again as are my lungs. My neph said it is not kidney related . He thinks it is my heart. I'm having increasing problems with premature ectopic heart beats and now at times my pulse is dropping into the forties and fifties. He has lowered the dose of one of my bp meds . My pulse has risen but so has my bp. He said my type two is well controlled and does not profile as the type that causes nerve damage. My question then was well what the hell is causing it. He said that he was pretty certain that the same auto-immune disease causing my kidney problems is also causing my neuropathy , arthritis and possibly causing neurological problems causing my erratic heartbeat. I asked what would happen if I just stopped taking all of my meds. He did not answer my question , just said please don't. Last time I saw my GP we had a talk about my rising blood sugars, his advice was to stop testing it. I really believe that the greatest medical problem that we face on this board is stress and depression from not knowing anything. Hugs to all.. Ron.
 
ron50 said:
Hi Sandy,
I am glad you don't have to add kidney failure to your resume, it is no fun. I am officially at stage two renal failure from nephrotic syndrome. If I don't take cyclosporine twice a day I lose seven grams + of protein a day. My neph and I had a big talk a few weeks back. I asked if my type two diabetes could be causing my increasing problems with neuropathy. we think the neuropathy may be starting to reach my organs particularly my colon. I am having increasing problems with constipation. I am having a lot of trouble controlling oedema , my legs are filling with fluid again as are my lungs. My neph said it is not kidney related . He thinks it is my heart. I'm having increasing problems with premature ectopic heart beats and now at times my pulse is dropping into the forties and fifties. He has lowered the dose of one of my bp meds . My pulse has risen but so has my bp. He said my type two is well controlled and does not profile as the type that causes nerve damage. My question then was well what the hell is causing it. He said that he was pretty certain that the same auto-immune disease causing my kidney problems is also causing my neuropathy , arthritis and possibly causing neurological problems causing my erratic heartbeat. I asked what would happen if I just stopped taking all of my meds. He did not answer my question , just said please don't. Last time I saw my GP we had a talk about my rising blood sugars, his advice was to stop testing it. I really believe that the greatest medical problem that we face on this board is stress and depression from not knowing anything. Hugs to all.. Ron.
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It is not bad but I do have neuropathy in my leg and have wondered if there is any connection with the Crohns Disease.
 
I suspect that auto immune is the connection Ron. I was dxed by a neurologist. He did nerve conductivity test which showed moderate to severe motor sensory peripheral neuropathy in both legs and my left hand. That was several years ago. Although he was aware that I had treated for colon cancer he said that none of the chemo agents I was on cause neuropathy. He did not know what caused it and did not try to help me at a cost of over $500.00 for two short consultations. That is the other side of being undiagnosed , it is very expensive. Ron50.
 
Wow, there are so many things I want to respond to here and just not enough time and space. I really appreciate the statement, Ron50, that "the greatest medical problem that we face on this board is stress and depression from not knowing anything." In fact, I think that is the crux of this thread particularly.
I relate to so many of the myriad of medical problems that all of you have, and it is amazing to me how many med problems we all share that aren't "necessarily" (supposedly?) related to IBD. It also amazes me how unaware most doctors seem to be of our suffering and what the standard med practices put us through. Many years ago I saw a movie about an egotistical doctor who suddenly found himself with a cancer diagnosis and on the receiving end of how patients are treated. The bottom line in the movie is he transformed from a "know-it-all" to a (cured) caring doctor, kind of the "happily-ever-after." I do think most doctors have some degree of compassion, at various stages, but I still think on the other hand most doctors have no clue what those of us with challenging medical problems go through, even an inkling of the totality of it all. I often wish that these doctors who treat us each had to go through a few days of the not feeling well, plus the very real fears of what is going to happen and being treated like they treat us, including the dismissive attitude we encounter far too often. I think the med profession as we have it now would be transformed radically, and globally. Of course, that is an impossible wish at any level, but I still think about it.
However, life goes on and all any of us can do as patients is the best we can do, and since we are human, sometimes not even our best. Same with the docs, and I'm very aware of that. I'm just glad that we weren't born 100 years ago, when the modem medical profession was still in its infancy. I think many of wouldn't be here if that were the case, so I guess I should be grateful die what we have.
Ok, enough of my philosophizing for the day. I can just send my hug, love and support for all, but can't change the world as I would like to. :ghug:
P.S. I have to add, sometimes it would be nice for even loved ones to go through my little fantasy I've wished on doctors, just so they would "get it."
 
Sarah, thinking of you today! I know I promised I'd wear my big snuggly scarf in solidarity with you, but we're having a bit of a heat wave (it's 75 F outside!) so a scarf like that was not in the cards today, I'm sure you understand. (I did wear a lightweight scarf around my neck instead, but it's not exactly snuggly, sorry.) You said you have an appointment today, with the GP I think? Please let us know how it goes. I hope you can make some progress. And, yum, banana bread! I love adding chocolate chips and cinnamon to banana bread, it's such a nice treat. I hope you enjoyed yours and are doing okay.

Sandy, the first year of my illness, my hubby wasn't exactly understanding about my illness and there were even times that he insinuated that I couldn't possibly be that sick all the time, etc. Well, he did get a taste of his own medicine, or mine rather. :p He started experiencing LRQ pain and vomiting that would come on out of nowhere. He didn't want to tell me at first, but there was a point in time where he went to his friend's house, planning to stay there for hours, but came home after a short time because he was having one of these episodes. Hmm, so pain, GI symptoms, having to miss social events - sound familiar? ;) It turns out his was actually kidney stones (the LRQ pain was apparently referred pain from his kidney?). And his stones were impacted, but his doctors didn't know that at first, so they took a "wait and see" approach to see if his stones would pass on their own (spoiler alert, they didn't). For 6 months, hubby suffered with pain and vomiting that would come on out of nowhere and debilitate him, until he finally had surgery with a laser to blast the stones. I think that's about as close as anyone can get to getting a taste of IBD without actually having it. Now he's much more understanding! Honestly, his kidney stones saved our relationship, as funny as that sounds to say. And he now "gets it" as much as a healthy person can get it. I think it's great for all healthy people to get a taste of what chronic illness and chronic pain is like - I wish I could inflict kidney stones on everybody, ha ha. :p (Side note, hubby thinks I put a voodoo curse on him to give him a taste of what I go through - I didn't, but I like that he thinks I have powers like that, hah!) I don't necessarily want all healthy people to develop IBD, but like you said, just for them to get a taste of what we go through, it's not a bad thing (though they may disagree, ha ha).
 
That's funny, Cat! It's funny how something normally awful can be a blessing in disguise!
Incidentally, I know I have a very small kidney stone, but according to two doctors not big enough to cause pain. The stone has to be big enough to plug the ureter from what I understand, which is what causes the pain, that or being in the tube with it's often jagged edges, but mine is still in the kidneys. Actually, sometimes I waffle about whether I believe still there isn't some kind of kidney failure going on. A few years ago my GP had some alarming lab values that indicated I was at about stage 2 kidney failure (like you, Ron) and sent me to this nephrologist. By the time I saw him (at an unrelated facilty), my lab values were "almost normal," and he claimed all the records that were sent over were normal, never saw the "alarming" labs. He followed me for a couple years until I didn't see the point in it any more. I find myself in a similar situation now, only this time my lab values really weren't all that concerning (I did misinterpret them) and I didn't have blood drawn except by this specialist, before my appointment and after I had been on cipro so any infection would have cleared. I also know it wasn't a UTI because no infection grew out on urine culture done at the other clinic (tho I did have elevated white blood counts and red blood cells). I'm getting some relief with the anti-spasmodic for bladder he put me on, but not enough. On top of that, it makes me more tired, which I can't afford with my narcolepsy, and my mouth so extremely dry my dentist just gave me a prescription toothpaste, of all things.
I'm a little grumpy again, I understand where you are coming from Sarah, it does get hard to fight for yourself anymore. But I'm also convinced, (but not trying to push it on any of you, like I said, I also believe that is personal to us all what we believe) that we all do have a purpose here on earth, and that this earth is just a temporary "home."
It's odd I can think that when I find myself of little use many days, kind of good for nothing but a couch potato and even Doug with his diagnosed IBD has to take care of much more than I do, including me in a sense.
Today is definitely one of those days. I'm starved but nauseous, bloated, pain in belly, much more than a little fatigued, and just plain not well. And I have to have a tooth capped that I broke during a seizure a while back. (Did make it to the dentist today.) Hopefully, I'll figure out what I should be doing sooner than later and be able to contribute toward something. I'm sooooo tired.
 
I have been diagnosed with kidney stones on three occasions and there were a few more that I just handled myself. I don't get calcium stones , I have high uric acid levels and it forms little sharp crystals in my kidneys. Fortunately they pass with urine. Unfortunately they pass painfully. I have had the same problem with my gallbladder only they were little black cholesterol stones. I thought the kidney stones were a little worse than the gallstones till one of them blocked off my pancreatic duct. I honestly wished I would die. I lost my gallbladder so no more stones. One of my great loves in life is fishing. Like most things I do I fished alone. I had a kidney stone attack about forty miles offshore. I was in my mid fifties and I only just made it back home. It was probably the bashing of the hull on the water that was shaking them loose. That was my last trip out, I sold my boat. Now I just muck about in the creeks. I haven't fished for over a year. I listen to my doctors rattle on about how I need to get exercise. If I could exercise I would be out fishing every weekend. Doctors just don't understand. Ron.
 
Ron50, can you kayak at all, maybe on a small stream or pond? That's what I do, we have 2 kayaks (one is a large heavy 2-person kayak that fits me, the hubby, and our dog - the other is a small inflatable kayak that I can take out by myself and when uninflated it fits in the trunk of my small car). I don't fish, but I enjoy being out on calm, peaceful water. And it's not a very high-exertion type of exercise on calm, small bodies of water. You can just float around if you want and paddle back to shore when you're ready to call it a day. That's how I kayak anyway.

Sandy, and Sarah, to add a different perspective to what Sandy said - as I've mentioned, I'm not religious. I don't necessarily think that we have a purpose on earth set by some mystical higher power, but I do feel that life is absolutely important and should not be wasted. I don't see any evidence of an afterlife, I think this life is probably all we get and therefore it's very special and we cannot waste it or end it prematurely. This is all we get so we have to make the best of it! Death does seem to me to be permanent and this life is short and impermanent, so I try to do my best with what I have, even if my best doesn't feel like much some days. As sick as I've been, I'm going to fight like hell to keep going and I am confident that better days are on the way. I'll have plenty of time to be dead later (that sounds funny but you know what I mean!).

I also look to my grandfather - he had told me several times that "nothing good happens after the age of 75, so make sure you don't live past that age." (That was the age at which his health massively deteriorated.) But, he sure stuck around past that age, his actions spoke much louder than his words. He didn't want to live, he had a lot of very bad health problems - but my grandma was still around and having dementia issues, and so he wanted to stick around to care for her, even when her dementia made her very difficult and downright abusive to live with (towards the end, they were fighting a lot and she was even hitting my grandpa, but he still stuck around through that - he knew it was the dementia and not really her). He could have ended his life quickly & painlessly at any time by simply stopping his dialysis - he even talked about doing that, and I know he was serious. But, he didn't do it. He made it until age 84 and passed away peacefully in his sleep, and a few months before he died, he told me he's had "a hell of a life" (in a good way). So, I'm going to follow his example and not his words, and stick around as long as I can, even when things are hard, because I want to have "a hell of a life" too.
 
Cat that's okay, we had a few days last week that were oddly warm. Today is definitely cold again though! I ended up seeing the GP Friday as I was feeling so unwell, I updated Friday, post number is 11750 :)
To be perfectly honest, I feel a bit like I'm getting weaker by the day I have no idea what's going on! Made it into work for the meeting but not my shift today, but now I'm completely drained. I'm basically losing my job, we are looking at redeployment to something with a bit more flexibility and closer to home. I'm very close to just handing my notice in though because I'm so exhausted from this constant merry-go-round and I can't see any resolution health wise on the horizon so I don't feel like I have much choice.
I just wish someone would f-ing do something to help me, day by day I'm getting more scared that this malnutrition is going to kill me.
One thing this whole thing makes me wonder is how people survive with anorexia for years and years at my weight and lower!

Sorry for sounding like a broken record!
 
sarahfh, have you weighed yourself recently? Are you continuing to lose? Could you use that to get to a GI quickly?

My daughter was just admitted for weight loss and a J tube surgery. Her GI admitted her last Tuesday and she had the surgery on Thursday. Considering her history of extreme weight loss and refeeding syndrome, we did not want to mess around. She felt absolutely awful, looked awful and was getting very few calories a day (her GJ tube did not work any more). Her electrolytes were all off too.

I wish someone would just admit you - I know how awful it is to be malnourished. I know the UK is different but this just seems crazy!! I hope someone who knows the UK system better will have some ideas for you, to speed all this up.

Sending hugs!
 
Sarah, for what it's worth, I was anorexic for a few years in my teens. In a nutshell, I was 16 years old, 5'8" and 122 lbs which is technically already underweight for that height - but, my mother, who is sometimes oddly hyper-critical, made a mean comment about how I looked so gross and disgusting in a swimsuit. I felt so shamed and horrible, and things spiraled and I ended up basically starving myself for 3 years. I kept my weight between 105 and 108 - any lower than 105 and I felt like I was too noticeably skinny (I didn't tell anyone what I was doing, nobody noticed, and I didn't want anybody to notice and force me to get help - and as far as I know nobody did notice, or at least nobody said anything and nobody made me get help). If I got above 108, I felt so fat and worthless and I'd punish myself by punching myself in the stomach and restricting food even more than usual and calling myself fat, stupid, ugly in the mirror. At one point I got a stomach virus and my weight dropped below 100 lbs and I couldn't stand up straight, it was shocking and I knew that was too skinny even for me at that time. And eventually I got some help and advice from a good friend who I confided to, and I was able to get out of that spiral after 3 years, and get to a healthier weight, and more importantly, a healthier mindset. I never got any actual professional help for it and to this day my parents apparently never noticed what I was doing. I'm now 36 years old and about 143 lbs (and I feel chunky thanks to the pred flab but I'm not going to spiral again).

Anyway, I don't recall but I'm sure you've said what your BMI is - I just googled, and 105 lbs at 5'8" would be a 16 BMI, so that was me at about my skinniest ever (even with my IBD, 115 lbs is the lowest I've ever dropped down to, and with this recent flare the lowest my weight got was 129 lbs). I probably was not far off from dying when I dropped below 100 lbs when I had that stomach bug during my anorexia. I felt so weak, awful physically and mentally, I will never forget how bad I felt during that time (really, I felt awful mentally the entire 3 years - I think it's much more mental than physical, it just manifests outwardly as physical but it was all about self-hate and control internally).

I think my long and rambly point is, if somebody had noticed or known what I was doing, I would have been hospitalized immediately. And I was frighteningly thin even at 108 lbs, so I really don't know how anybody didn't notice, I really felt like an invisible girl during my entire adolescence (my parents didn't notice when I had head lice for 3 months, when I was suicidally depressed and stealing razor blades and hiding them in my room, they really didn't notice anything I did during my teen years - now, as an adult, I don't tell them that I love them because I'm not sure that I do, and they just scratch their heads and wonder why). So I just want to confirm what you said, I feel like it's so wrong that if anybody had an inkling of what I was doing, I'd be in the hospital, but for someone in your shoes they just let you continue to suffer. It's so wrong, and it's sad because I didn't want help at that time but clearly you do want and need help! Like Maya said, maybe if you've had some recent weight loss they can admit you based on that? Or if you tell the doctor about how you're basically unable to work anymore, they might take things more seriously because of that consideration? I'm just grasping at straws but I know you need help, and it's unbelievable to me that they still haven't admitted you. Like Maya said, I wish they would just admit you already! Is there anything at all you can do - call the GI, go back to A&E, allow yourself to faint in a public place? Anything at this point, you've gotta get some help, now!
 
My kiddo's BMI was 15 at her lowest point (82 lbs and 5'2). They were honestly worried about organ failure, though teens with eating disorders do sometimes have much lower BMIs (as low as 11 or 12). They, of course, then have all sorts of problems including very serious heart problems and can go into cardiac arrest and die very quickly.

I never knew how scary and dangerous extreme weight loss was (from whatever cause, illness in this case) until my daughter was hospitalized 3 separate times for it (this was the fourth time for the J tube surgery!).

sarahfh - I don't know how the ER works there (or the A&E) but here, they will admit you if you go and are "sick enough." Unfortunately, they decide what "sick enough" is (unless you have a GI that is asking them to admit you). Admitting through the ER is pretty common here.

Cat, I can't believe no one ever noticed how sick you were, that is awful!
 
Maya I hope your daughter recovers from the J tube surgery quickly, how is she getting on?

Cat I'm so sorry you went through such a horrible time as a teenager, sending lots of gentle hugs your way! Well done for recovering yourself though, that must have been so so tough. You should be very proud of your strength. The ironic thing is if I had an eating disorder I would have been hospitalised a long time ago.

For what it's worth, my BMI at last weigh in was 15.5, I'm 5'7" and last weight was 45.1kg which I believe is 99lbs. I don't have any scales but I'm pretty sure I'm back to the 44.5kg mark so 98lbs after the last couple of weeks of nausea and feeling so poorly. My bloods at A&E were fine, electrolytes fine.

I was at A&E last week with my chest pain but I wasn't sick enough to be admitted. At this point I feel like the only way of someone taking me seriously is purposefully making myself extra weak and dehydrated and pass out in public but that's such a dangerous game to play I don't really know if I want to risk it. I just don't know where to turn anymore :(
 
Thanks, guys. Sorry that was so rambly, that turned into my own little therapy session. :p Yeah, I don't know why nobody noticed me or said anything - I used to scare myself at times, walking past mirrors or reflective windows - I'd get a glimpse of a girl who was way too thin and obviously sad, and then I'd realize - that's me! So even I, in my disordered thinking, could see it - I don't know why others couldn't be bothered to notice or help. Anyway. That was the skinniest I've ever been and obviously a really dark time too, and Sarah, like you said, that's something that'd warrant immediate hospitalization. It's just so frustrating to me that someone like you who obviously needs help and wants help for a different situation (but similar outcome) just isn't getting it, and there are probably anorexic girls like how I was as a teenager who are having help basically forced upon them (not that they don't need it, but you want the help and many anorexics don't). It feels like such a double standard.

And 98 lbs at 5'7" is definitely frighteningly thin. I'm not surprised you don't have any energy, you've got no reserves of anything! Did they check other bloodwork besides your electrolyte levels when you were last at the hospital? Vitamin levels? Did they check your heart to make sure it's still healthy? Surely something's majorly got to be out of whack for you to be having chest pains, and obviously there's also got to be an underlying cause as to why you can't eat without feeling awful. I know you've been to A&E once already, but I would honestly think it's a good idea to go again. I ended up going to a walk-in urgent care clinic once, and then the ER twice before they decided I was, as Maya said, sick enough to be admitted. So for me 3rd time was the charm. I think it is a good idea to go back to A&E and see if they can do further testing and/or admit you. You obviously haven't improved any, and have probably gotten worse since you were last seen, so they can at least use your previous visit there as a reference point. It's worth a try, right?
 
Cat there's nothing wrong with getting rambly, I've done it a few times myself especially recently! My brain definitely isn't what it was that's for sure.
I totally avoid mirrors to be honest, and photos of myself. I hate both so much right now. I hate that I'm begging for help and getting nowhere :(

They did U&E, albumin, FBC, iron, some sort of enzyme test for my heart, CRP and something else I can't remember what. Blood sugar too. My haemoglobin was a little high but nothing too bad and I have no idea what that would mean anyway tbh. They did an ECG but that was it. I would go to the walk in in the city but I know there's not much they can do so I feel like what's the point in wasting my energy?! The chest pain is not too bad so long as I don't do anything, it's just the weakness and lack of energy right now that's the worst.
 
So none of your electrolytes were off? Did you get the results or did they just tell you that? I'm wondering if they were a little off but not enough for them to do anything.

Your hemoglobin being high could be a sign of dehydration actually.

It seems like your two options are to wait until things get bad enough for someone to do something (which sounds dangerous) or to try and get to a GI ASAP and get him/her to fight for you. I don't know if that's even possible?

My daughter is doing ok. The J tube surgery is a more involved surgery than the G/GJ tube one (which is just poking a hole in your stomach). It involves using part of the small bowel to make a blind limb or a tunnel for the tube to go in, so that it does not slip out and formula does not go into the abdominal cavity (which can cause peritonitis).

So she is doing ok - recovering slowly. Getting up and walking around more easily and in less pain now, but still on pain meds. She spent 2 days in the hospital pre-op and 4 days post-op.

sarahfh, I know I've asked this before but they haven't done a gastric emptying test yet, right? Are you able to drink your formula? Which formula is it?

When my daughter was trying to drink her shakes (which failed miserably), we found that keeping them cold helped. She also had to sip them because if she drank too fast she'd throw up (since her stomach does not empty properly). So we put them in a thermos that she carried around all day, sipping. That helped her get a bit more down.
 
That's just what they said, over here we never get given the actual numbers, so I guess it's possible that they were only slightly off to be honest. I didn't know that about haemoglobin!

My GP has chased up my GI appointment, so I'm kind of hoping I hear something from them soon enough to do something, because I really have no idea where else to turn. I've not had a gastric emptying test yet no, that's what I think GI should do next. I have Ensure Plus Juce which I think for you guys is just called Ensure Clear? I don't get on with the milky ones at all. I did try Peptamen but it brought me out in a rash, which was frustrating as it was the easiest on my digestive system. So long as I drink them fairly slowly like the 300ml over about one and a half hours it's not so bad.
I've been lucky in that I don't seem to vomit (thank god) but I get a lot of nausea, pain, reflux and just generally feel full quickly and for long periods of time.

I'm glad she is doing okay, I hope the J tube helps more than the GJ did! I can't imagine having to watch your child go through all the tube surgeries and refeeding and everything that comes with Crohn's and gastroparesis, you must be made of strong stuff.
 
It sounds very much like Gastroparesis. I really hope you hear something soon. Will be thinking of you!

We have now had every kind of tube there is pretty much (NG, NJ, G, GJ and J) so if you have any questions, you can PM me.
 
Thank you Maya, depending how things go I may well be taking you up on that!
Having another night lying (well, propped) awake due to nausea and reflux and just waiting for 3am to roll round as that's usually when it settles so I can sleep. Only an hour to go...
 
I got behind on my reading of everyone's posts, so I read almost two week's worth today. There was so much I wanted to respond to as I was reading, but I think I forgot most of it.

Cat and Sandy, I completely agree about people not being able to understand unless they're sick themselves. It honestly drives me insane. My husband was not very supportive when I first got sick, but he has gotten a lot better over time, even though I know there's still no way he really gets it. I actually specifically chose the doctor that I'm seeing now because in her online bio, it talked about how several years ago, she was really sick herself and no doctor would take her seriously. She hasn't technically helped me at all yet, but I do appreciate the fact that she seems to believe me and feel empathy for what I'm going through. And she hasn't given up......yet.

Sarah, reading your posts about wanting to give up made me so sad. But I completely understand. I can't tell you how many times I've told my husband that I wish my illness would just kill me already. I don't want to die yet, and I'm not suicidal or anything. I want to live, but I don't want to live like THIS. I want to live a happy, healthy life! I just try to remember that there's still a chance that someone will be able to fix me, and I'll get to live the happy, healthy life that I always saw for myself. It only takes that ONE doctor. But apparently that doctor is hard to find. And sometimes it feels completely hopeless. Also, if it's possible for you to quit your job, I would really consider it. I know sometimes people can't for financial reasons, and I don't know what your situation is. I worked full-time for about a year of my sickness. I eventually quit to start grad school......but in reality, I know I quit because I couldn't physically handle working anymore, and I thought grad school would be somewhat easier on my body. I was able to take a lot of online classes, which was helpful, but it was still torture. This past spring (after 1.5 years in school) I decided to take a leave of absence from school, because it was still too hard on me; and I was supposed to begin internships, which I knew would be impossible. Taking this leave of absence was one of the hardest decisions I've made (I'm a total perfectionist and overachiever), but I don't regret it one bit. If I get better, I would like to return to school. But if I don't, I'm going to be a stay-at-home cat mom forever, I guess. It's definitely not where I saw myself or where I want to be (did I mention I had a 4.0 in grad school while being sick?!), but it's what I have to do. So if you need to take some time off (months, years), then I say do it. You need to take care of yourself. <3

Sending hugs to everyone!
 
Sarah, in your signature you mention you also have several other chronic illnesses - I wonder if you could get on disability? I'm not sure how it works over there, but that way you hopefully wouldn't have to worry about money so much? I know I could never afford to stop working (and without my job, I wouldn't have health insurance), so I am one of those who needs to just keep working no matter what. If you're in a similar situation, then I feel for you because it really sucks having no choice but to work even when you're really ill. Hopefully you can figure something out, though. Freelance work when you're well enough? Selling crafted items online? I sell handcrafted things on Etsy, in fact I just made a nice sale today which I'm happy about. It definitely isn't enough to pay the bills, but any little bit of extra money helps.

Akgirl, I love the phrase "stay-at-home cat mom" and I'm definitely stealing that from you! :) I'm sorry you had to give up school, but it sounds like you're doing what's best for you and your health right now, even if that's a difficult choice to make. I'm glad that your husband is somewhat understanding, and that's pretty cool that you were able to find a doctor who understands chronic illness from the perspective of a patient (something I sometimes think my GI is sorely lacking - he's obviously never been sick a day in his life). Hopefully that doctor can indeed figure things out. I also have yet to find "that doctor" who can magically tell me for sure what's wrong with me. I was hoping I'd luck out when I was hospitalized, as I had a whole new GI team suddenly looking at my file, but I struck out yet again.
 
Random little update -- I finally got around to scheduling with a new GI to follow up with since the latest one was let-go. Turns out there is one who "specializes" in EoE at the teaching hospital, knew I was coming for endoscopy, and had already flagged my file! So I am on his cancellation list, and in the meantime have an appointment in December (so far out! The endoscopy is Nov 9th!!). But still good news overall.

In a little bit of bad news - my son has had D since Monday. He was feeling a bit better Weds and Thursday, then took a really bad turn yesterday - with everything he ate or drank going right through him. Took him in to our old GP, since that is who he still sees and it was interesting - they seemed to suddenly be more concerned about possible chronic GI issues than ever before! We are hoping it's *just* a bad virus, but I'm keeping a close eye on him over the weekend, with some strict instructions on when/if to take him to the ED (they were on the edge of sending him yesterday, but he is managing, somehow, to stay hydrated despite the watery D - they actually gave me kudos for that, and mentioned how it must be my experience). And of course to call the office Monday to check in on how's he's doing. He's 15. I so hope this isn't the beginning of anything. Please keep us in your thoughts.
 
Wildmtnhoney said:
Random little update -- I finally got around to scheduling with a new GI to follow up with since the latest one was let-go. Turns out there is one who "specializes" in EoE at the teaching hospital, knew I was coming for endoscopy, and had already flagged my file! So I am on his cancellation list, and in the meantime have an appointment in December (so far out! The endoscopy is Nov 9th!!). But still good news overall.

In a little bit of bad news - my son has had D since Monday. He was feeling a bit better Weds and Thursday, then took a really bad turn yesterday - with everything he ate or drank going right through him. Took him in to our old GP, since that is who he still sees and it was interesting - they seemed to suddenly be more concerned about possible chronic GI issues than ever before! We are hoping it's *just* a bad virus, but I'm keeping a close eye on him over the weekend, with some strict instructions on when/if to take him to the ED (they were on the edge of sending him yesterday, but he is managing, somehow, to stay hydrated despite the watery D - they actually gave me kudos for that, and mentioned how it must be my experience). And of course to call the office Monday to check in on how's he's doing. He's 15. I so hope this isn't the beginning of anything. Please keep us in your thoughts.
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Will do.
 
Akgirl that is totally it! Like I don't want to die but I don't want to keep going like this either. I'm really hoping I soon find that doctor.

Cat I do have other conditions yes, there are two disability benefits in the UK and one is easier than the other to get although both require an assessment. It's something I'm considering. I can't really afford to be on disability in a lot of ways but I can't really manage a lot of jobs so its a catch 22 for sure.

Wildmtnhoney that's so great you've managed to get on the cancellation list for that GI, I hope he will be helpful for you! I will keep your son in my thoughts.

As for me still feeling crap but still plodding on. I've just eaten a ready made pasta salad thing but I didn't realise until it was too late that it had cheese in so I'm in for a rough 48 hours I reckon. Although my nausea has been horrible all week so I expect that it will have been a mistake but oh well hey. I have to keep trying to eat.

On a positive note today I had one of those encounters that really cheers you up. The woman in the pharmacy carried my Ensure prescription out to my car for me (she could tell I don't have the strength to carry all 50 odd bottles haha) and we got chatting and I explained a bit about what's going on as she had such trouble with her weight too and nausea, no appetite etc, it was just so nice to talk to someone who gets it! She's doing a lot better with an antidepressant which is known to increase appetite and since having her second baby. But god it was nice to speak to someone in real life!
 
Wildmtnhoney, how is your son now? I sure hope it was "just a bug" too. And Sarah, I'm glad you had somebody to talk to and help you, even if just for a moment. Sometimes those little moments are what gets us through. How is everyone (else also) doing these days? I haven't been on this thread for awhile because I found myself getting more and more irritated at doctors and ERs (A&Es), until finally yesterday I had a little meltdown of sorts. I think a lot of us understand that not being suicidal, but not wanting to go on living the same way either. Yesterday I ended up having a bit of a gripe session elsewhere on the forum (my own little therapy session, Cat, and oh the things I could tell you about my growing up years!) then talking to Doug until about 3am. He did have to take a day off work today because he wouldn't have been functioning with his own issues, bless his heart. He is such a kind and tender hearted man. My complaints aren't any one thing, it's the accumulation of how treated by some docs/facilities plus having a zillion issues at the same time at various levels of severity. It all started with health care professionals couldn't get it thru their heads that someone can have a stroke in their 30s, and it has snowballed from there. (I'm now 55.)
Sarah, I can't believe they haven't hospitalized you either, with your BMI and length of time in such a state and wanting help. I agree that it is ironic that anorexics who often don't want the help have it thrust on them, then there are people like you who would love to be able to eat and can't get the help they need.
I have a sister who is 5'8" and years ago down to 78 lbs (yes, anorexic) and survived! We still can't figure out how. She was taking in size "0" clothes! She also was able to pull herself out of it, on her own, but to this day if she gets a pound over 130 she has a conniption fit, and almost obsessive compulsive about some things. One of my best friends (and Doug's cousin who introduced us), however, had a sister with anorexia (before they even had the term "anorexia," in the late 60s and early 70s) who spent time in the state (mental) hospital, then when they thought she was doing okay, she was let out on her own for awhile and living in an apartment on her own. When family hadn't heard from her on Thanksgiving day one year as was usual, they sent Doug's dad, who lived nearby, over to her place (the cousin's family lived 3-4 hours away), and found her dead. I'm not saying this to scare anyone, just explaining health care profession should understand how important malnutrition is. And no, things in their own notes don't always sink in.
So we keep on keeping on, as best we can. I'm just glad all of you are there, who have a lot more understanding than the general population. Thanks!
 
Once again I've been a grumpypants and have kept it out of this thread because my complaints feel minor in comparison to what many others are going through. It's all stupid stuff, like, I hurt my toe (it was kind of impressive, actually, I felt it go "pop!"). I self-diagnosed it as Turf Toe which makes me sound like a football player. The treatment is very similar to that of a broken big toe - tape it to the toe next to it and try not to move it around too much. So that has been annoying and a bit painful, but really is minor. Lots of other minor stuff too, like work has been stupid and stressful, I have too little money and too many debts, pred is making me chubby, blah blah blah. It's just all stupid stuff that doesn't really matter.

So yeah, I'm just a big ball of complainyness lately. (What else is new!) How is everybody else doing? Sarah, how are you? Wildmtn, how's your son?
 
Thanks for checking in! The lomotil helped, and as of today he hasn't taken any! So hopefully just a weird bug!?!

In not so great news, I've been running a fever off and on today. Not high. Just 101, then down...then inching up to 100.3....then back down....but now I have a headache and am generally blah and couldn't go into work today because of it, and I had things I wanted to do. I still did some work from though.

Tomorrow I have an appointment with the dr who follows me for my DVT and blood thinner, so I hope this fever thing doesn't interrupt that.
 
Sorry for being MIA, my brother has been staying this week :)

Sandy I'm sorry to hear about your sister and your best friend's sister, that must have been awful!
I think sometimes we all need to have ourselves a little meltdown in order to carry on, especially being undiagnosed!

Cat don't worry about being grumpy! I definitely feel like for the most part I only ever moan on here haha. I hope the toe heals quickly for you though, that sounds painful.

Wildmtnhoney I'm glad your son is doing better, that must be such a relief. I hope your fever breaks before the appointment and it's a helpful appointment.

As for me nothing much to report to be honest, still pretty much the same. I'm doing a phased return at work so gradually building my hours back up. My brother came to stay this week which was lovely, I've barely seen him over the last couple of years for various reasons, so that's cheered me up :) although I have definitely pushed myself a little too much both energy wise and food wise so this weekend will be a quiet one for sure!
After an especially long night nausea and reflux wise I treated myself to a replacement fitness tracker, I have a Fitbit HR but the buckle gives me a rash, so I've ordered a Jawbone instead, I didn't go for the HR one because I have a finger HR monitor thing for my POTS. I find the steps and sleep tracker really useful to pace with the M.E/CFS :) Feeling a little guilty about spending money on myself, but I'm going to sell the Fitbit to pay for it.

But yeah, nothing new to report really! Still not getting anywhere medically but I don't seem to have gotten any worse over the last couple weeks, still just the same level of struggling.
 
Sarah, don't feel guilty about spending money on a treat for yourself - as long as you're not bankrupting yourself or becoming a hoarder, a treat every so often is fine. And in my opinion, treats are totally needed. We deal with so much crap (on both a literal and figurative level!) that we really deserve to treat ourselves sometimes. :)

And it sounds like that's a good investment for your health, anyway. I have an older Fitbit One and I love being able to track my steps and sleep on it. It has gotten me through good times and bad. It showed me just how much I was walking when I was in Japan (I averaged 8-10 miles per day!) and it even survived going through a wash & dry cycle in a Japanese laundromat! It also showed me just how little sleep and what poor quality of sleep I was getting when this flare was at its worst - I could pinpoint the times that the sharp pains in my belly woke me up. It's definitely a very handy tool to have, I would be lost without my fitness tracker. Even if it's not always tracking my fitness but sometimes my illness.

So yes, to quote Parks & Rec, treat yo' self! I am an expert in this, I probably treat myself far too much. :p I was having a rough day on Wednesday so I went out and bought myself new boots. I didn't actually need new boots, I have at least 4 pairs already, but these were cute and on sale and I just wanted them and they make me happy. And as a bonus, they actually do help my injured toe feel better! I wore my new boots yesterday and had almost no foot/toe pain. So, treat yo' self, and bonus if it helps your health in some way. :)
 
Hi everyone!

I haven't been here in a while, been feeling kind of stable and busy with work. But I thought I'd pop by and update you all and check in how everything is going for you.

For me, things are kind of the same. Not great, but not terrible. The doctors are still trying to figure out what's wrong and the theory right now is achalasia. Which I suppose is possible. I'm being transferred over to a dr who specializes in it and I'm going to have another upper scope soon. Depending on how things look, it might be time to discuss surgical options for my hiatus hernia and perhaps also achalasia if that is indeed what I have.

How are things with all of you?
 
Thanks Cat, I'm feeling a little less guilty for spending money on myself now but I do need to get a few bits on ebay in general.

Last night was another bad night here, it was 6am before I got to sleep thanks to nausea, reflux, pain and D :( I kept thinking I was going to be sick, I kept getting the watery mouth thing happen it was horrible! So today I've had one piece of flapjack to eat and that's it because I just can't face anything else and even the flapjack wasn't a good idea at all :( The nausea hasn't really let up and I've had a lot of mucus with the D today, plus of course the LRQ pain. I'm so so over all this BS now, I'm so close to my breaking point. Sorry for moaning, just struggling a lot right now. If tomorrow is another bad day I may use Wednesday to go to the GP/walk in.

Izzie I hope the specialist doctor is able to finally give you an actual diagnosis and treatment!
 
mini update and whine, and a rave:

I wasn't feverish at all at the dr friday, but my blood pressure was low, which likely explains how I've been feeling since last Weds (generally worn out, slightly lightheaded, and generally "off"). Friday morning I was soooo dizzy I made my dh drive me in to the appointment, which should have tipped me off. Then I greyed out walking down the hall, they almost sent me to the ED...fun times. In the end, we agreed I'd stop taking one of my meds (I take a med for ADHD, that also helps to keep my blood pressure HIGH, but it makes my heart race, so I take ANOTHER med to lower my heartrate, but they were thinking that med may be lowering my blood pressure, too, so I stopped it temporarily). Unfortunately, despite not taking that med all weekend, I keep feeling ick all weekend, still had greying out episodes, and when I'd check my bp at home, it was consistently low. So I'm off to my GP this afternoon (in just about an hour-ish). My mom has to drive me, and I hate that. Just....having to beg favors, ya know? At least I have family nearby!


On a totally unrelated topic, and mostly aimed at the women here: Korean skincare ROCKS! So, part of my "taking care of myself" thing was to go ahead and take the time to try the multi-step process...yes, it makes the mornings and evenings take a bit longer, but I turn on some music I like, and I find I enjoy pampering myself more than just scrolling facebook with my coffee, or mindlessly zoning to 'net stuff in the evenings anyway. Plus, I've gotten my 13 year old, acne-scarred dd a few of the products, and, OMG her scars are HEALING! Like, right before our eyes!! I have to explain, that she started getting acne at age 8 (poor baby!) and had her first cyst before age 11. She's been on, and is still on, accutane. She is still getting new breakouts around her lower face (most likely hormonal) but her forehead has been clear for awhile, with just scars. So we decided to try some scar remedies, with dermatologist approval. I think the snail cream is doing the most help. She looks...well, healed! I am super impressed. Plus, I'm getting compliments on my appearance, too :) I'm not a young chicken, but my endocrinologist looked absolutely insulted when she realized I was a full year OLDER than she was, after she teased me about being in my 20s (she thought, before checking my chart, I was early 30s....erm, not quite) :D So that's my plug for S. Korean skin care LOL
 
Just have to say I'm in the category of wanting to whine myself right now. I won't start to explain why because then I would never shut up. I just hope we all feel better.
 
It's a whiney day for me also. My arthritis is acting up badly and I don't know why (it's not raining, not snowing, not bitterly cold out, there's not weird weather on the way, I haven't been jogging). And why do people need to make comments when someone walks with a cane? I hardly ever use mine but I need it today and at least one person at work has been like, "Wow, a cane! Did you hurt your foot?" Um, no, and none of your business, and go away because I'm in a mood. :p I feel like I'm about 85 years old, limping around with my cane and my bum hip. The next person who tries to talk to me about my cane is going to get hit with it, ha ha. ;)
 
I feel whiney too. The last two days I have missed appointments with my physical therapist because of issues with the Crohns
 
Aw, I'm sorry Cat and Ron! Being not well stinks, doesn't it? It's funny (ironic funny, not ha ha) how people can jump to assumptions, isn't it? Since I lost weight with some of my GI issues (I was overweight), everyone keeps telling me how great I look and that it must be nice to be feeling better. I got so tired of explaining so now I just politely smile and say thanks, and find myself seething underneath. I also use a cane when out of the house, but now have used it so long nobody says anything anymore (again, except how much better I look). Then again, I used to use a wheelchair most of the time out of the house in the past so in that sense I have improved (will still very occasionally use it if have to go great distances and Doug is there to push me. My electric chair died and I don't have the strength to push myself far. When using the chair is when I get comments). I've got to find a way to get rid of anger and depression about med problems in a healthy way. And Ron, I've also missed PT appts (not in PT currently) in the past because of med issues. I was going to PT to try to get migraines under control, and would miss either because of tummy, or more often and ironically, a migraine. Hope you feel better soon.
 
Cat, Sandy and Ron I'm sorry you're struggling too, thinking of you all.

Wildmtnhoney with the fevers were you sweating a lot? Dehydration can cause low blood pressure that's all, especially if you've not been getting enough salt. Maybe try some of those re-hydration powders and see if they help?

I'm still struggling with nausea and stuff, so fed up now. Barely managing any intake so feeling crap, but have to try to keep going!
 
sarahfh said:
Cat, Sandy and Ron I'm sorry you're struggling too, thinking of you all.

Wildmtnhoney with the fevers were you sweating a lot? Dehydration can cause low blood pressure that's all, especially if you've not been getting enough salt. Maybe try some of those re-hydration powders and see if they help?

I'm still struggling with nausea and stuff, so fed up now. Barely managing any intake so feeling crap, but have to try to keep going!
Click to expand...

Sending support and prayers
 
So hello again guys! Cat may remember me from 2014 but many of you may not know me or my story.

When my problems started i was 15 years old. I had no 'trigger' and got very ill. Lost an awful lot of weight and was going to the toilet up to 15 times a day. Now i'm nearly 5 years down the line, turning 20 this month and still have no diagnosis. I live on a cocktail of Codiene, Immodium and a drug called Colestid (Colestipol). I feel rough every day and still go to the toilet up to 15 times a day. I'm in total agony every waking minute of the day. I have been on anti depressants for a year now too. I don't think i'd be here without them.

So on Monday i had a call from my consultants office. They have a date on 21st November for yet another colonoscopy. This time under anesthesia because i cant cope without anymore. I'm tired and fed up of feeling ill. Not looking forward to the prep either. Not sure how i'll cope.

So back for some good old chatting therapy because otherwise i'll never get through another scope.
 
Hi Rose, welcome back! I have kept you in my thoughts and was wondering how you were doing. Sorry to hear it hasn't gone so well. What about the situation with your mother, is that any better? I recall she wasn't exactly supportive of you.

Good luck with the scope. I had my last scope under anesthesia also (the sedation failed me the time before that) and that was nice, I literally remember nothing whatsoever and no pain, no discomfort aside from a mildly sore throat (they apparently intubated me once the anesthesia kicked in). So that part should be a breeze for you, but yeah, the prep isn't so fun. The good news is, since you've been having a lot of bathroom trips anyway, it shouldn't take much prep to clean you out fully. I highly doubt you'll have to drink the full amount of prep - once you start going "clear" you can stop (I was told that yellowy liquid is okay and flecks are okay but no solids). Keep us posted on how that goes!
 
Nice to "meet you" Rose, but very sorry it's under these circumstances. I'm also very glad you get anesthesia this time, my heart goes out to those who have difficulties or no sedation at all. Of course, the people that have the most difficulties with these scopes are generally those that have some sort of inflammation in the first place. Hopefully, though, this will give you some long sought after answers and therefore better treatment. And Cat is right, it should be pain free this time!
Sarah, Wildmtnhoney, Ron and everyone else, I know everyone is going through a lot right now. You all have my hugs and support. I wish I could take the difficulties away, but obviously can't, but it is nice to know others understand, isn't it? I have to go get ready for an appointment or would say more (maybe it's a good thing I have to go, I talk too much). Hang in there. :ghug:
 
RosannaKate said:
So hello again guys! Cat may remember me from 2014 but many of you may not know me or my story.

When my problems started i was 15 years old. I had no 'trigger' and got very ill. Lost an awful lot of weight and was going to the toilet up to 15 times a day. Now i'm nearly 5 years down the line, turning 20 this month and still have no diagnosis. I live on a cocktail of Codiene, Immodium and a drug called Colestid (Colestipol). I feel rough every day and still go to the toilet up to 15 times a day. I'm in total agony every waking minute of the day. I have been on anti depressants for a year now too. I don't think i'd be here without them.

So on Monday i had a call from my consultants office. They have a date on 21st November for yet another colonoscopy. This time under anesthesia because i cant cope without anymore. I'm tired and fed up of feeling ill. Not looking forward to the prep either. Not sure how i'll cope.

So back for some good old chatting therapy because otherwise i'll never get through another scope.
Click to expand...

Sending support.
 
I've just had a big moan in the vent away section then read a couple of pages of this thread.
I'm so glad other people understand the not suicidal but not able to cope any more thing.
I'm waiting for a call back from my gp and I really want to tell them I can't keep going like this but I feel like they'll just chalk me down as suicidal. I've been suicidal and depressed in the past and this isn't the same at all but what gp is going to listen to my opinion about my mental or physical state! Pretty sure I know my mind better than anyone else but even I feel disconnected from it most of the time. This constant fog in my brain is so weird, hard to deal with on one hand but also not on the other as my mind isn't connected to me anyway.

Hope all of you are doing ok xx
 
How is everyone getting on?
Has anyone got any fun plans for the weekend or is it lazy weekends all round?

Kitty welcome to the undiagnosed club, I'm so sorry you're having such a hard time right now, was the GP helpful? I completely understand not being suicidal but not wanting to live this life, it's such a strange and conflicting feeling. How far into the investigative/diagnostic process are you?

I've managed my two shifts this week, although I'm totally exhausted now! I've still not been managing much in the way of intake but today I've managed to force myself to eat a little more so hopefully that will help. I've also bought some scales so I can keep an eye on my weight, although I'm not sure I want to know regularly what my weight is doing. I even made it out for a cuppa with a friend in the week which was really nice :) I'm going to spend the weekend resting though as work has been tiring beyond what I expected.

Cat how is your foot doing? Have you tried to taper the pred again or just sticking to the 10mg for now?
 

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