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Cat-a-Tonic said:
Wildmtn, we're scope buddies! I got admitted to the hospital today for this stupid stubborn flare. I was really dehydrated again today and my stupid guts can't even handle Ensure, they can barely handle water. So I went to the ER and they decided to admit me. I'm doing prep in a couple hours and scope tomorrow. Good luck to you! I hope we both get some answers!

As for how I'm doing, actually somewhat better - they gave me IV steroids in the hospital and that's working better than the Entocort. I'm also on clear liquids right now so I feel better just because there's no food in my system. (I won't have to do very much prep, I'm already pretty close to being cleaned out.) It sounds like I'll have to do Golytely, though, which so far I've avoided. The nurse here is funny, she said "the only thing light about Golytely is the name." [emoji14] Ohh good, I can't wait. I'm sure my angry guts will love that, hah.

Not sure when I'm getting out of the hospital, I'll be here through tomorrow at least. So I'll be on sporadically checking in with you guys although I will surely be pretty out of it after my scope tomorrow.
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Best to you both
 
I got some very good news today which uplifted my spirits. I saw some beautiful townhomes this weekend with my mom (though we didn't get to see one of them on the inside) and got an information sheet. The complex was recently acquired by a new management firm and is currently under renovation so they are low on occupancy right now. I inquired for more information and was told that a 1 bed/1 bath would not be ready until December (over 3 months away). I told my friends at work today about them and 2 of them are old enough to be my mom so they act very motherly (1 of them has a daughter that also eats lunch with us). One of them used to work in apartment complexes as the office manager and asked if they had a waiting list I was able to apply for since there was no deposit or application fee. I asked them by email, but there was no such list at the time. On the advice of that friend, I wrote an email to the main management firm suggesting that they start a list of qualified people since we were interested first and that way we could be notified as soon as a unit came available. Apparently, it worked because I got an email this evening from the office manager saying they have a list and I could start the online application. They do a credit check and income verification so you have to qualify to be put on the list. I meet the income requirements and I have great credit that I've been building for the last 2 years (it's been going since 2006, but I really started working on improving it). I hope to hear soon that I've been approved! On the off chance I find something I like better, I've not lost any money and it's not a hard credit check, so it won't affect me. :)
 
Wow, a lot of testing going on at present and hopefully you will all have definite answers. Wouldn't it be nice if some or all of you are officially moved out of the "undiagnosed club? " But hopefully you stick around here in an unofficial capacity.
Cat, I'm sorry you had to be admitted but considering all the circumstances, it sounds like the best place for you right now. Going thru dehydration over and over is really hard on the body and dangerous (let alone everything else you've dealt with.)
Long story greatly condensed, but I found out today I likely have a small kidney stone, and have had for months. Why don't doctors communicate results of tests they run? Grrrrr. My gripe for the day.
 
Sandy, even if I did get diagnosed tomorrow (I'm not holding my breath), I would never leave this club. I started it years ago and it's been going strong ever since, it's like the child I never had. So don't worry about me, you can't get rid of me! :p

Yeah, I'm actually pretty happy to be admitted, because I feel like I'm actually getting proper help in this flare finally. And, IV steroids are awesome. I'm finally getting some relief - apparently the entocort didn't work but steroids do still work for me, because the IV steroids seem to have made a big difference. I'm currently doing colonoscopy prep and I don't even hate that! Seriously, Golytely is giving me more gentle d and far less cramps than the flare has given me. :p It's crazy but I'm actually in a good place right now, literally and figuratively.

The only downside right now is that they won't be able to tell me until tomorrow morning when my colonoscopy will be. It could happen first thing or I could end up waiting a good chunk of the day to have my scope, no idea just yet. Apparently they don't figure out that schedule until that morning. I did meet with the doctor who is overseeing the colonoscopy team, and he seemed pretty good. He acknowledged that I'm a tricky case. I think both he and I are realistic - since I'm in a flare, there is a chance that something will be found tomorrow, but of course given my track record of having totally normal test results, there's also a very good chance that I'll remain undiagnosed. So I'm not getting my hopes up. A diagnosis would be great but I'm not going in with that expectation - either I'll come out of it as expected, still without a proper diagnosis, or I'll be pleasantly surprised. Either way I'm okay.
 
I knew you were the one that started this thread, Cat, and would still be around. We are all happy about that. :)
I'm just glad you're getting good treatment right now and I'm hopeful for the diagnosis for you, that would be awesome, but you have a good attitude if not. I hope you don't have to wait all day for the scope, and get to feeling all the way better (as much as possible) soon.
 
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Best wishes for you having scopes tomorrow! Hope it goes well.

I've mentioned before that I also get migraines and the weekend saw a real bad one, did all the things I know to do and took migraine medication and panadeine both Sat and again Sunday. Seeing by Sunday night I couldn't cope anymore I begged Hubby to take me to the hospital emergency department. We are right in between 2 hospitals (about 20 mins to either) and decided to go to the new one they built recently at Byron Bay rather than the Base hospital still being upgraded in Lismore. I am so glad we did! I have never gone in and been triaged straight away and straight into a bed! Nurse had anti nausea needle and endone to me within 30mins! That started to work especially the anti nausea jab. Then I was also given a CT scan of my head because I stuck my tongue out crooked when they did the neurological check [emoji13]. Been a few years since I had one so reassuring there is nothing nasty going on in my brain at least! After a few hours and some aspalgin with something (not sure what) to help it not irritate my stomach I was sent home feeling much better although very sleepy! Woke Monday and felt better and with a day off work took it easy and napped a bit.

Good side to all that codeine is it totally stops the D!! Tuesday arvo before it has started to wear off and go from being 'normal' heading back to D! Still waiting for the confirmation paperwork for my scopes in a few weeks time. Hoping there might be answers there but so far my tests have not been far out of normal range.
 
ShellK, so sorry you deal with migraines also. But very glad you were treated well at the new hospital. Yes, sticking the tongue out crooked is one way they check for stroke, if it is, you generally stick the tongue out toward the side where damage is going on. Glad yours turned out not to be the case. (This sticking out tongue crooked can also happen with migraine, but more common with strokes, so I'm glad they were thorough.)
Good luck with your scopes, let us know how things turn out.
Hope all is going well with all those having their scopes today, this very day. :hug:
 
Cat - sometimes the hospital is the best place to be. I hope you get some answers, and if not at least adequate treatment so you can feel better!

Me? I've been having the dreaded D non stop since my strange reaction to alcohol, along with some pretty intense crampy pains and craaaazy nonstop heartburn. So. Yeah. I am never drinking again - which is something I've said several times before in my life but this time I'm fairly certain I'm scared off the stuff for good. Yuck!

At least the strange brain fog is gone and I don't feel hungover anymore which considering it's day 3 I'm very happy about :p
 
Double posting to add a question, sorry: but when you guys get the D, does it feel like... a regular stomach flu/food poisoning type of D or is it different? Because I've been getting this every other week or so for 2-3 days at a time where I feel like I've just eaten something terrible and am sick. Have to run to the bathroom constantly, nauseated, weak/shaky, cold etc.

I'm not sure if it's a side effect of Ranitidine, if all the meds I'm on for reflux has somehow triggered some kind of IBS or if it could be a sign of IBD.

It's very annoying and to me it seems connected to Ranitidine but I'm not sure, and when I stop taking it my reflux affects my breathing and I cough like a maniac so I'm not too keen on stopping it either...
 
I'm trying to stay late at work tonight because I'm getting off early on Thursday for the GYN doctor's appointment, but the fatigue is killing me. I raided my co-worker's chocolate stash and got some more Coke Zero, but I'm so ready for the night to be over with. It's really difficult to stay awake but I can't fall asleep at my desk. :(
 
Izzie said:
Double posting to add a question, sorry: but when you guys get the D, does it feel like... a regular stomach flu/food poisoning type of D or is it different? Because I've been getting this every other week or so for 2-3 days at a time where I feel like I've just eaten something terrible and am sick. Have to run to the bathroom constantly, nauseated, weak/shaky, cold etc.

I'm not sure if it's a side effect of Ranitidine, if all the meds I'm on for reflux has somehow triggered some kind of IBS or if it could be a sign of IBD.

It's very annoying and to me it seems connected to Ranitidine but I'm not sure, and when I stop taking it my reflux affects my breathing and I cough like a maniac so I'm not too keen on stopping it either...
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This is what WebMD says about the side effects of Zantac:

Possible Side Effects While Using This Medicine

Call your doctor right away if you notice any of these side effects:


If you notice these less serious side effects, talk with your doctor:


If you notice other side effects that you think are caused by this medicine, tell your doctor.
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I'm back from my scope. The results are........ normal. Of course, because my results are always normal. They did take a lot of biopsies so we're waiting on those now. My GI is also waiting on those results before deciding whether to put me on pred and/or enteral nutrition.
 
Cat,
Try to contact the GI's office to make sure that they check for microscopic/lymphocytic/mastocytic colitis (not to be confused with mastocytosis). They need to do a special staining to check for this condition. Here is section on the forum:http://www.crohnsforum.com/forumdisplay.php?f=258
That is what my son probably had when he was young. Here is a good paper that summarizes the current thinking about the condition: http://www.hindawi.com/journals/grp/2012/950582/
:hug:
 
I had mentioned microscopic colitis to the doctor who was overseeing the procedure - that's one of the things that my GI has long suspected (would at least explain why I'm always normal visually, and I know that microscopic colitis has a skip pattern so it can be missed if they don't biopsy the right spot). So I think they know to look for that. I'll remind them again the next time the nurse comes in.
 
There apparently was just a shift change with the nurses, so I told my new nurse, and she's going to write it down and ask the doctors when they're doing rounds tomorrow morning. They're also not for sure going to release me tomorrow - the nurse who was leaving said they're going to see how I'm doing and then assess.
 
Can I just ask you guys about your 'flare ups'. Obviously I'm speaking to the undiagnosed here; how long do your flare ups usually last for? This latest episode of mine has been ongoing since about April of this year.
 
Hi Drobs, it's unfortunately different for everyone. Flare-ups can last for days, weeks, months, sometimes even years. I've been in my current flare for just over a month.
 
Hey Drobs. I was just recently diagnosed and my worst flare was from early May to just a week ago I started feeling a bit better. I've had them last just as long and longer before. This one was the hardest on me though.
 
Jsashen, did you get the results of your CT scan or do you have to wait?
Cat, I'm sorry you didn't get a definite diagnosis ... yet. I'm still glad for you that they are taking your complaints seriously tho, and not just treating you like it's "all in the head." Did they decide where to go from here?
Miss Leopard, to answer your question, i would think if that nausea, etc were the result of a side effect to the med, it would be there all the time. Just my opinion.
You're not going to believe what happened yesterday. I developed a full fledged migraine as I went to drive to the grocery store. I had to turn around and drive right back as I could only see in spotches,then had to sleep moat of the rest of the day. I'm doing a lot better, but still not well. I'm just hoping this doesn't stick around for two weeks like the last one.
 
Ahhh Cat still no clear answers but at least the dr you have seems to be good at keeping on trying to get it worked out.

So the codeine wore off [emoji37] and d started but unfortunately after I was at work. Lots of pain yesterday so I thought it was on the turn. Even Immodium didn't seem to be doing much today [emoji30]

My biggest fear right now is that I'll have these scopes and they will find....nothing.....[emoji15]. I see how you are struggling here and I'm feeling the same and it's tough more days than not just to try and function 'normally' ie work and be a wife, mum and grandma. Anyone else have counselling or mental health issues to go along with all this?
 
Oh one other question re the scopes. When I told them at work I was scheduled my boss (who had one a year or so ago) expected I was coming back to work the next day....now I have had a colonoscopy before and other ops and I find the anaesthetic alone knocks me around for a day or so. So if I was having an afternoon procedure I would still be errr doughy/tired for at least the next day. I know the patient info says no driving for 24 hours so how am I supposed to go to work and concentrate (desk job....boring accountant here [emoji13]). What are you experiences with 'recovery' post scopes? How much time did you/ were you recommended to have off work?
 
ShellK said:
Ahhh Cat still no clear answers but at least the dr you have seems to be good at keeping on trying to get it worked out.

So the codeine wore off [emoji37] and d started but unfortunately after I was at work. Lots of pain yesterday so I thought it was on the turn. Even Immodium didn't seem to be doing much today [emoji30]

My biggest fear right now is that I'll have these scopes and they will find....nothing.....[emoji15]. I see how you are struggling here and I'm feeling the same and it's tough more days than not just to try and function 'normally' ie work and be a wife, mum and grandma. Anyone else have counselling or mental health issues to go along with all this?
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My doc gave me a referral to a therapist that specializes in those dealing with long term effects of health problems. My problem, I haven't been well enough to check it out yet. But yes, I plan on going.
 
Sandy, I'm currently in "hurry up and wait" mode. They've got a bunch of tests that we're waiting for results on (the biopsies from the scope, they also did the prometheus blood test, and a 24 hour stool test to check on my pancreas function I think). Hopefully something will be enlightening once those results start coming back. In the meantime I'm still here in the hospital, they had mentioned yesterday that I might be discharged today, but I've been feeling so unwell this morning and still waiting on the results so it sounds like I'm here at least another day. Which is a relief because I don't feel ready to go home just yet, and I feel like more tests (imaging, like an MRE) should be warranted if these results don't show anything. There's something going on and it's actively yelling at me from inside my gut so let's track it down and fight it already!
 
SandyUte I don't have the results of my CT yet. I meet with my surgeon tomorrow afternoon. I was expecting I might have them then, and we can talk them over. Hopefully, the spot that stopped the scope in the transverse colon is the only piece they will be taking from me!
 
jcashen87 said:
SandyUte I don't have the results of my CT yet. I meet with my surgeon tomorrow afternoon. I was expecting I might have them then, and we can talk them over. Hopefully, the spot that stopped the scope in the transverse colon is the only piece they will be taking from me!
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Hope the best for you
 
Today has been kinda "iffy" so far. I've had some news that I did not like - my co-worker next door does not like the girl she is sharing her new office with - apparently, the other girl is kinda ADHD, but she's hardly ever in there since she works with the residents. She's probably in the office a total of 30 minutes in an 8 hour shift. Her manager came and talked to her and I overheard the manager saying something about moving me to another office and moving the current occupant to mine. I moved less than a month ago! I finally have a window that looks outside and MUCH more space whereas the other office is VERY small - smaller than my old office and has NO windows! I told my co-worker that I cannot move to that tiny office since I have claustrophobia - especially since there are no windows - AND it's in an opposite area of the building from where I spend most of my time so I'd be constantly walking back and forth. Then, she said, "Why don't you move in my office," but I know that would never work since this co-worker likes to talk. If they are going to move offices around, they should move the occupant of the tiny office to the one next to me and have her share and then move the current office mate to the other side. The tiny office person is actually in the other office talking with the co-worker right now. I was so frustrated about the idea of moving again - especially since it's a petty reason and makes no sense. :(

Anyway, my day has been OK, but I'm still having the crazy bleeding from the progesterone shot and I see my OB/Gyn tomorrow. I researched what they typically do for irregular bleeding due to the shot, and I'm seeing people that were prescribed estrogen for their bleeding problem, but I do not want to take the pill again. There's something called tranexamic acid (synthetic lysine) that helps stop the bleeding, but you cannot use it with hormones - so that's out - since it can cause blood clots and so can hormones. Whenever I think the bleeding is done, I see it again later in the day. :(

I'm also hoping my GYN doctor will find the cause of my pain last week that sent me to the ER. I'm truly thinking I have an ovarian cyst - it could possibly be due to endometriosis (the cysts are called endometriomas or "chocolate cysts" due to the blood). Hopefully, he will do an ultrasound and further bloodwork to determine the cause so I don't experience that pain again.

End of rant.
 
Anybody ever tried the low-FODMAP diet? It was the one thing that the dietician (or nutritionist? I can never remember which one is the legit one) had recommended. It looks like something I could do when I'm more recovered from this flare. It's actually fairly close to what I already eat when I'm healthy. Rice, fish, oatmeal, etc. I think I'm going to try it but would love any insight or advice from anyone else who's tried it.
 
Cat-a-Tonic said:
Anybody ever tried the low-FODMAP diet? It was the one thing that the dietician (or nutritionist? I can never remember which one is the legit one) had recommended. It looks like something I could do when I'm more recovered from this flare. It's actually fairly close to what I already eat when I'm healthy. Rice, fish, oatmeal, etc. I think I'm going to try it but would love any insight or advice from anyone else who's tried it.
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I have not, but my friend at work swears by it. She is gluten-intolerant, as well, and says the low-FODMAP has really helped with her IBS symptoms. She told me I should try it (funnily enough, the GI doctor did, too) but I'm not so sure I'm ready to be more restrictive with my food choices. I found a great cookbook, though, on Amazon.

https://www.amazon.com/Complete-Low...TF8&qid=1472070510&sr=8-1&keywords=low-fodmap
 
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Cat-a-Tonic said:
Anybody ever tried the low-FODMAP diet? It was the one thing that the dietician (or nutritionist? I can never remember which one is the legit one) had recommended. It looks like something I could do when I'm more recovered from this flare. It's actually fairly close to what I already eat when I'm healthy. Rice, fish, oatmeal, etc. I think I'm going to try it but would love any insight or advice from anyone else who's tried it.
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I've looked into it and tried a few recipes. Some of what they say is ok still upsets me but then some days one thing will and others it won't [emoji37]. There is an app developed by Monash Uni (Australia) that seems good.

Something you might want to look at also is GAPS which is a gut healing protocol. Uses things like bone broths and probiotics foods to help heal or at least improve the gut function.
 
Shell, yeah, there are a few recommendations on the FODMAP approved foods that I know I'll be avoiding anyway (pork, grapes - I can only have grapes if I peel off the skins and that's such a pain to do). I do a lot of things like rice & fish anyway though, and I also see that buckwheat/soba noodles are allowed, and nori seaweed, and eggs. Before this flare, I was trying to eat more of a Japanese-style diet since my guts did so well in Japan. Guess what I ate in Japan - rice, fish, nori, eggs, soba. ;) So it wouldn't be that much of a stretch really.

For now though I'm focusing on Enteral nutrition. I had my first enteral drink tonight. It was drinkable although not delicious. The smell and taste for some reason reminded me of a horse barn. My husband sniffed and tasted it and he said it was like cheese. Still, I drank the whole container without any difficulty, no nausea, no cramping. I really do want to try doing an EEN diet for a few weeks or even months, so now I know that the first one I tried is at least drinkable. I'm going to talk with the nutritionist/dietician/whatever the proper term is lady tomorrow. Hopefully she can write me a script for ideally a couple months' worth of EEN. That'll be one hurdle down, my other goal that I've wanted from the beginning is to switch from Entocort to prednisone. Still waiting on the test results before any decisions are made there.
 
Well, it apparently wasn't a schatzki ring after all. It all looks more like eosinophilic esophagitis. Lots of biopsies were taken. They dialated my esophagus more as a matter of course than because of any one finding -- they didn't see any one specific stricture, etc. Now I just get to wait until I get back in to see my GI, and also wait on the biopsy results.
 
My biopsies were normal. Hmph. The doctor did come and talk to me about that and he's just waiting for the fecal fat results, and if those are normal then we're going to do an MRE.
 
Cat-a-Tonic said:
My biopsies were normal. Hmph. The doctor did come and talk to me about that and he's just waiting for the fecal fat results, and if those are normal then we're going to do an MRE.
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Cat it is very refreshing that even with the results not showing anything your GI can see past that and keep doing what tests you need and hopefully treatment too. Hope you can get relief if not answers.
 
Cat-a-Tonic said:
Anybody ever tried the low-FODMAP diet? It was the one thing that the dietician (or nutritionist? I can never remember which one is the legit one) had recommended. It looks like something I could do when I'm more recovered from this flare. It's actually fairly close to what I already eat when I'm healthy. Rice, fish, oatmeal, etc. I think I'm going to try it but would love any insight or advice from anyone else who's tried it.
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Yes low FODMAP and low fibre diet. Made a bit of a difference - worth doing. My worst foods are gluten, garlic, onion. Once my gut healed I got dairy back in ok. The only significant thing that changed my symptoms was pentasa/salazyprin even though I only have an IBS diagnosis.
 
Last night, right before bed, my lower abdomen felt like a balloon - very tight and bloated. I took some Phazyme, probiotics, and a water pill and laid down to sleep. I woke up and feel nauseous and still bloated. I also took my temperature because I feel like I'm getting hot flashes but it's 97.6 which is normal for me. I'm seeing my GYN doctor today and I'm planning to ask for an FSH test. My hormones feel completely out of whack and making me miserable. I'm also wondering if the shot is causing some of these symptoms. Anyway, I hope he decides to do some tests to figure things out. If everything comes back normal, I'm really at a loss. I'm still on the fence about seeing another GI when my insurance changes over, but I still don't have the answers I need. My worry is that I will have tons of medical bills and no answers. :(
 
Cat I'm sorry your flare has been so bad this time! That must be so frustrating that your biopsies have come back normal but I'm glad your GI still wants to do the MRE, I hope that will give you answers. My GI wants me to try low FODMAP but my dietician wants to focus on weight gain first. I've done all the research for low FODMAP though and I'm willing to try, I'm just not sure I can stick to gluten free as bread is my real safe food.

I had my MRE weeks ago now and still have no results so I'm assuming that everything was normal or I would have heard something by now. So I guess I'm stuck with the refractory IBS diagnosis and no real way of moving forward. I'm so fed up now. My malnutrition is really catching up with me now and I feel awful most of the time. I've missed so much work recently I don't think I will have a job by the end of the year to be honest.

I have just done a 5 days symptom diary for my dietician and I've managed to end up with bad days and an average day there so hopefully that will help her see that I need help more than just the Fortijuce/Ensure juce (Ensure clear in the US). Honestly right now I would be perfectly happy with an NG tube for overnight feeding to get some calories in me and give me some energy. Probiotics have settled the D a little but the nausea is still pretty much constant and the GP/GI won't give me a stronger antisickness. The pain is still there and again GP/GI won't give me anything more than paracetamol. My BMI is still 15.3 after a year of constant symptoms and I can't even carry the vacuum up the stairs without feeling like I will pass out.

So yeah, a whole year of being like this with maybe a handful of symptom free days and I'm no closer to feeling better. Great. Oh and my endometriosis seems to be coming back after my surgery 2 years ago so that's extra pain and no chance of another surgery as my weight/malnutrition make it to risky.

Sorry for the moan guys, I'm just having one of those days.
 
Sarah, I'm afraid I'm going to end up just doing Ensure Clear as well as I think that was the only drink I've tried so far (besides plain water) that hasn't given me diarrhea. I tried an enteral drink yesterday and it didn't give me nausea or anything, but this morning I've already had 4 episodes of bad and very explosive d, so I guess that's not the drink for me after all. I completely understand your frustration as I'm in a similar place myself right now. When they bring my tray of food to my hospital room, I pick at the jello and have a bit of the chicken broth and that's all I eat (that at least doesn't seem to make things worse). But obviously I can't eat like this long-term and I had lost about 11 lbs before coming into the hospital (they haven't weighed me since Monday but I presume I've probably lost a couple more lbs). I need to at least stop the weight loss and ideally stop the diarrhea, but nothing's working so far. Hopefully the MRE finds something, anything, but I'm not holding my breath.

As for low FODMAP, can you have rice? Bread is really safe for me but so is rice, so I'm just going to eat as much rice as I can and then slowly add in more foods, I think that sounds like a workable plan. And since I know chicken broth seems okay and I didn't see it on the naughty list for FODMAP, so I could do rice and broth. I think.
 
They may be funny about you having just the Ensure clear, my dietician explained it to me as they don't have all the required nutrients and stuff to be a sole source of nutrition, but they are fine as a supplement. Just sort of a heads up! That's awful that the one yesterday had such bad results for you. Have they considered doing elemental formula at all? I know the brand here Elemental 028 does at least come in a few different flavours, although I hear they are still an acquired taste.

Are they giving you anything to try and slow the D down or are they focusing on working out why? I really hope they work it out soon for you so you can start feeling better! Are they keeping an eye on your electrolytes?

As for FODMAP yes rice is allowed, this website has a pretty comprehensive list of what you can and can't have http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

And this is the book I got which explains it all pretty well, although it's obviously a UK link I'm sure you can get the book in the US too https://www.amazon.co.uk/Complete-L...TF8&qid=1472132887&sr=8-2&keywords=low+fodmap
 
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Sarah, the enteral drink I had yesterday was one of the semi-elementals, yes. There are a few others I can try, there's a nutritionist/dietician here who is trying to get some other samples for me. And yeah, they're mainly trying to figure out the cause of my issues, rather than stop the d right now. (If they were trying to stop the d they wouldn't make me do colonoscopy prep, hah.)
 
Ahh I see, I hope the dietician can get some better samples so you find something that works for you! Haha that's true, I guess at least if you do have the MRE while inpatient you won't need to do much prep with your current D...

I had a little chat with my mum which has made me feel a little better and less crazy, she agrees with me that something needs to be done about my nutrition sooner rather than later because my life is kind of falling apart from being so weak. She also agreed with me that although it would suck and seems a bit awful/extreme that a hospital admission to get started on something like NG tube feeding overnight would be the best thing. I'm at high risk for refeeding syndrome so it would have to be done as an admission or with very close community monitoring. But I daren't bring it up with the dietician in a lot of ways, I don't want her to think I'm being dramatic or attention seeking or whatever, or that I'm trying to undermine her expertise. I just can't see a way out any more.
 
Sarah, it's no fun being in the hospital, that's for sure. But, sometimes it's necessary when you need more help than you're currently getting or able to do for yourself. You're definitely not being dramatic! You're legitimately ill and need more help than you're receiving as an outpatient right now. Go, get yourself admitted, it'll be okay. :) And hey, if it makes you feel better, you're in a country where a hospital admission won't cost your life savings! ;) I shudder every time I think about how much this admission is going to cost me, even with insurance. Every time a nurse brings me a kleenex or a fresh towel or a cup of water, I'm wondering if that's another $20 being added to my bill. :p

I discussed some more with the nurse and the nutritionist/dietician, and we decided that I should try the Vivonex a bit longer. The nurse said sometimes it could just take awhile for my body to calm down and adjust to the elemental formula (which shouldn't make my guts angry, it's supposed to provide gut rest). So I'm going to try it for a bit longer and see if things calm down any. Wish me luck!
 
I've never actually had an overnight in a hospital, I've had 4 surgeries but they were all day case, so the idea of an admission is a little daunting to be honest. I am SO glad we have free healthcare here, I mean of course it has its flaws but so does the American system. I don't think it's possible to have a healthcare system which is perfect for everyone all of the time.

Because of the tight budget within the NHS it can be very difficult to be admitted to hospital here though, I'm not actually sure I will even be considered ill enough for an admission to get my nutrition sorted, never mind the cost of a feeding pump and the feed and all that stuff. Which is a little scary and depressing. I guess I will have to see what the dietician says in a couple of weeks, but if it's anything like my treatment so far I will be left to continue like this indefinitely.

I hope the formula gets a bit easier on your guts! Hopefully they just need to warm up to it a little bit and it will help in the longer term. Have the stronger steroids made any difference at all?
 
Sarah, Monday night was actually my first ever overnight in a hospital as well. I know it's scary, but believe me, if I can do this you can too. And it is a big relief to finally feel like my flare is getting some proper care.

I will say, before you go, make sure you've packed well. Things to entertain yourself (ipod, book, laptop, etc) and toiletries are a must! I keep texting my husband to bring me things from home. Necessities are things like lip gloss and lotion (it gets really dry in the hospital), deodorant, feminine hygiene products. They did provide me with soap and shampoo and a toothbrush, but your own soap and shampoo from home are surely nicer (they don't give you nice things in the hospital), so bring whatever you might need. Spare socks & underwear to change into as well and slippers if your feet get cold. Also, this might be just me, but I feel so much more comforted when I have a teddy bear or stuffed animal. :p So I had my husband bring me my teddy bear. At the risk of sounding like I'm a child, he also brought me a Lego set and it was a nice distraction putting that together (I swear I'm an adult, ha ha).

I'm actually just now trying to psych myself up to drink my 2nd carton of the elemental drink! My guts are quite gurgly so I've got my heating pad on and am trying to get things a bit calmer too before I drink it. As for the steroids, I think they've helped a little bit, but my body is still quite angry at me. I've lost even more weight, too. Before this flare, my weight was 146 lbs (I'm 5'8"). On Monday when I was admitted to the hospital, exactly one month after the flare had started, my weight was at 135. This morning my weight was at 131. So I've lost 15 lbs in just over a month. It's scary because I'm not a big girl to begin with and the weight loss is obviously still not under control if I lost basically 4 lbs in 4 days while in the hospital. I still need to get this turned around.
 
It sounds like everyone has been doing pretty badly lately, and I'm not any different! I've been having bad abdominal pain/cramps every day for a couple weeks now. And my muscle aches/tiredness have been worse as well. My legs feel like I ran a marathon, when I've done no exercise whatsoever! Man I'm tired of this!

I wanted to answer a few questions I saw. Izzie, when my stomach is really bad, I do have other flu-like symptoms as well. I'll get sweaty, shaky, hot and cold, stuff like that. It's not fun at all. I saw a question about seeing a counselor. I've seen a couple over the last two years, mostly to try to deal with losing my mom though. It got to the point where it was too hard for me to physically go to my appointments, so I ended up having to stop. Depression and anxiety are very common (and I think bound to happen) when you're chronically ill. If you're physically able to, I think seeing a counselor is a great idea.
Cat, I've tried the low FODMAP diet and also the GAPS diet. I think I ended up getting a little relief from the low FODMAP diet, but nothing significant. That was also at the start of my illness, and I think I've gotten worse over time. I'd say it's worth a shot though. It sounds like it won't be a major change for you anyway.

Sending healing thoughts to everyone!
 
Cat-a-tonic
We set goals for x numbers of calories per day for Ds as inpatient with elemental
Then a reward
If you like teddy bears
Snuggables are great
Bear plus hot pack
Ask for the water filled hot pack that plugs in while inpatient
It is the best
 
MLP, I have had that water-filled hot pad on my belly right now (I think they said it's called a T pad or T pump?). It is indeed lovely although it makes my belly sweat! :p

Still waiting for news on the stool test so I can't have my MRE yet, ugh. Nothing new to report here.

As for treating myself, I just added a bunch of Legos to my amazon wish list. :p I did manage to finish my carton of Vivonex but it was much more difficult than yesterday. Yesterday the taste barely affected me but today it was horrible, I could only do a sip at a time and then had to drink water to get the taste out of my mouth. I hope this gets easier (can't get much harder) to drink this stuff. Took me over an hour just now to drink one. Not looking forward to the next one but I can do it.
 
Can I join please? Had a colonoscopy and gastrocopy which looked normal but waiting on biopsies, frustrated. Just want to know what's wrong with me!
 
Fill the small styrofoam cups with ice
To the top
Not the pitcher
Them drink after you stir it
Make sure it's bitter cold

Oh and longer sips are better since less number of aftertaste per
Carton
 
sarahfh -- my daughter was so malnourished, she did develop Refeeding Syndrome when she started tube feeds. Since she was so malnourished, they did admit her to start the tube feeds, so she was in the hospital when it happened. They did bloodwork three times a day to make sure her electrolytes were ok. Her phosphorus and potassium kept falling and she had to be given IV supplementation. She even developed arrhythmias and had to be on a heart monitor.

She was in the hospital for 10 days because of the Refeeding Syndrome.

I knew her weight loss was serious, but I never realized how serious until she was hospitalized and developed Refeeding Syndrome. They were very seriously worried about her organs, especially her heart.

In her case, a feeding tube was absolutely necessary. They can teach you how to insert an NG tube by yourself. My kiddo was able to insert it every night and take it out in the morning (so no one at school had to know). Plenty of kids learn how to do this. The first night was tough, but after that she got used to it surprisingly quickly.

Good luck!
 
Cat, thank you for those tips, I will definitely remember them if all of this does end in an admission. Like you I have my teddy who always goes to hospital with me for surgeries and procedures! I hope tonight's elemental drink went down easier in the end and doesn't upset your guts too much.

Maya if you don't mind me asking, at what point did they decide to admit your daughter for tube feeding? I understand it will probably be slightly different with her age and everything but I'm just curious.
I've felt like I've been in an uphill battle to even get a referral to the dieticians, my GI and GP seem to think it acceptable that when I first got ill I lost a stone in a couple of months and in the last year I've only gained back 2lbs. My GI has actually outright stated "You're weight isn't a concern for me"! It took me a few months to even be prescribed the Fortijuce drinks (although now switching the the Ensure juce), over 6 to be prescribed any antisickness and about 10 months to get to see a dietician!
My BMI for the last year has been 15.3 and judging by the food diary I've had to complete for the dietician an average day is about 800-1000 calories with one juice supplement and bad days are under 500 with the supplement. From a combination of nausea, no appetite, knowing the pain will increase and partially no energy to prepare things. It's no wonder I feel so awful really!

At this point I'm actually more scared of them doing nothing that the thought of an NG and admission. But because my working diagnosis is refractory IBS, despite the inflammation found on my colonoscopy biopsies, I can't shake the feeling that they will continue to do nothing :(
 
Sarah, if nothing else, it sounds like you need to be admitted to get a fresh set of doctors looking at your case. Any doctor who says your weight loss isn't a concern, that's not a good doctor! At the very least you need a second opinion! A stone is 14 lbs, correct? That's definitely a significant amount of weight to lose in a couple months, and unintentional weight loss should always be taken seriously.

You mentioned BMI, so I googled and plugged in my current weight and height into a BMI calculator to see what mine currently is. I got 19.9. So, 15.3 sounds frighteningly thin to me! I gotta say, I do think you should go to the hospital. Write down everything ahead of time, that helps me - what your symptoms are, how much weight you've lost, and what you'd like them to do to help you. When I went to the hospital, I needed IV fluids right away, but then I told the doctor that I'd like to be admitted, I'd like IV steroids and I'd like to switch from Entocort to prednisone, and I'd like to try EEN. I actually am getting every single thing that I've asked for! The nurse just told me they're taking me off of the IV steroids (which I've been on since I've been here) and switching me to 40 mg oral prednisone. I'm also transitioning to the elemental drinks, I'm having 2 today and my goal is to get 3 down tomorrow (they're really gross tasting so it's a bit hard to drink, but I think they do make me feel better).

So please do go to the hospital soon, if you're debating on whether or not to go then I think that means it is time to go. Get your teddy bear and gather your courage (but it's okay to cry, too, I've cried literally every day I've been here). You can do this, and hopefully you'll end up coming out of the hospital with more answers and feeling better. I don't think I'll leave the hospital with a diagnosis, but I feel pretty confident in the treatment plan of pred + the delicious drinks (I lied, they're not delicious).

Keep us posted on what you do and how it goes. I'll be thinking of you!
 
Maya if you don't mind me asking, at what point did they decide to admit your daughter for tube feeding? I understand it will probably be slightly different with her age and everything but I'm just curious.
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My kiddo was admitted for the first time when she had a BMI of 17. The second and third time (when she developed Refeeding Syndrome) her BMI was down to 15.0.

She does have Crohn's and Gastroparesis, so because she is diagnosed, they did take her weight seriously. Pediatric doctors also seem to take weight much more seriously, because kids need calories to grow and develop.

She was between 16-18 years old when she was admitted, so not even a little kid!

Her diet was a lot like yours -- she managed 400 - 500 calories on bad days and 700-800 calories on good days.

Have you ever had a gastric emptying test for Gastroparesis? Some of your symptoms really sounds like it -- nausea, no appetite, pain after eating and then of course, fatigue and weight loss from not eating.

Can you get a second opinion? I know the system is different in the UK. That is also probably why it is harder to hospitalize you :(.

When we got out of the hospital, we had lab work done every three days for a while to monitor. Then every 5 days. Could they do something like that, if they start you on tube feeds?

However, it is much safer to be in the hospital, especially since you are SO underweight.
 
I just lost my long post - GAH! I just found out today that I need to have surgery for endometriosis. My GYN doctor did an ultrasound on my right ovary (where the pain was) and my uterus. My ovary looks normal (although it had more than one follicle growing due to my PCOS) so an ovarian cyst has been ruled out. He, however, said that the uterine lining was too thick for someone who was on Depo-Provera since it's supposed to be much thinner - which is why I'm probably bleeding so much. My paternal grandmother had endometrial cancer at 67 (she's now 81) so he wants to go in laparoscopic and take biopsies of the tissue to confirm endometriosis as well as rule out cancer and uterine fibroids (he thinks it's endometriosis, but he is thorough). He also wants to do a D&C to remove the lining. He asked if I was planning to have children (I'm 33 and unmarried with no prospects) and I said I didn't know, but it's possible, otherwise, he would have offered an ablation (complete destruction of the uterine lining which stops endometrial tissue from growing). He gave me Tylenol 3 (acetaminophen with codeine) to take for pain. I'm supposed to call the scheduler tomorrow to set up pre-op labwork and the date of the surgery. It's an outpatient procedure, which is good. I don't know how long the recovery process is, but it's probably a few days. I know D&C's cause cramps - my aunt had one a few years ago for abnormal uterine bleeding according to my mom.

I know that surgery has risks and sounds scary, but I'm actually relieved to have a doctor that takes me seriously. If it is endometriosis, it could potentially causing the GI issues because it can grow outside the uterus and onto other organs. I am so glad to have answers, FINALLY!
 
My CT scan showed just the pretty bad stricture in the transverse colon and looked like possibly some inflammation possible stricturing but not as severe right in the beginning of the colon. Right where the ileum dumps out. The small bowel looked good though. My surgeon said since I have only been on Lialda for a week and a half we should give meds a chance to reduce some of this and see if it is manageable. Even though it is scar tissue making up the stricture he seemed to want to try meds.

My GI said surgery was pretty much definite and sent me to this surgeon. Sucks sometimes getting conflicting ideas between Doctors. The surgeon said he wanted to see if i could get on a biologic like remicade or maybe humira to go at it more aggressively. This process can be confusing at times. I will probably talk to my GI after my surgeon reports to him.

Also it is basically being called Crohn's colitis at this point but the biopsies didn't have granulomas or whatever. It was mostly just scar tissued area they biopsied. So they seem like they don't want to be 100% sure it is crohns but more like 95% and will proceed with treatment as it is Crohn's.
 
Hi, just wondering if anyone can help me. For the last three months ive been having irregular bowel movements, a lot of diarrhoea and pain in my lower right abdomen. I have been in hospital since Monday, it is now Friday (NZ). I have had a colonoscopy which showed a few small ulcers on my TI these have been taken away for biopsy. My CRP levels are high (15). I have also had a endoscopy, then endoscopy showed that I had a lot of fluid in my stomach (delayed stomach emptying) and MRI showed nothing abnormal.
I was wondering how common it is to have ulcers on your TI and if biopsies often come back as inconclusive? Or.. will the biopsy taken of my ulcers show something specific?
 
ruby7829 said:
Hi, just wondering if anyone can help me. For the last three months ive been having irregular bowel movements, a lot of diarrhoea and pain in my lower right abdomen. I have been in hospital since Monday, it is now Friday (NZ). I have had a colonoscopy which showed a few small ulcers on my TI these have been taken away for biopsy. My CRP levels are high (15). I have also had a endoscopy, then endoscopy showed that I had a lot of fluid in my stomach (delayed stomach emptying) and MRI showed nothing abnormal.
I was wondering how common it is to have ulcers on your TI and if biopsies often come back as inconclusive? Or.. will the biopsy taken of my ulcers show something specific?
Click to expand...
I don't know about the ulcers but I hope the biopsies show some results.
 
ruby7829 said:
Hi, just wondering if anyone can help me. For the last three months ive been having irregular bowel movements, a lot of diarrhoea and pain in my lower right abdomen. I have been in hospital since Monday, it is now Friday (NZ). I have had a colonoscopy which showed a few small ulcers on my TI these have been taken away for biopsy. My CRP levels are high (15). I have also had a endoscopy, then endoscopy showed that I had a lot of fluid in my stomach (delayed stomach emptying) and MRI showed nothing abnormal.
I was wondering how common it is to have ulcers on your TI and if biopsies often come back as inconclusive? Or.. will the biopsy taken of my ulcers show something specific?
Click to expand...

I would think (and my hubby with crohn's agrees) if the biopsies are of the ulcers themselves, it would show something more specific. Ulcers on the TI sounds like an IBD, which I hope doesn't scare you, but gives you some some answers and peace as to what is going on. Personally, I hate not knowing more than anything. Good luck, and let us know how you are doing.
 
Jsashen, i think you are safe saying you have crohn's. I'm just sorry you are getting mixed messages from the docs. If you are comfortable with what the surgeon recommended, I would definitely try the most conservative approach first. But if you are too miserable, let them know! You are the one that knows your body most.
MissLeopard, your body still sounds like my body was. I'm sorry you are going thru all this uncertainty yourself. Back before I could get any OB/gyn to believe the severity of my cramps, I would go thru weeks of bleeding and cramping. Finally, when I did have a hysterectomy, (in the middle of the start of menopause), my uterous was double the size it should be and very diseased, no choice but to have it removed abdominally. Because of stroke and fact I can't have replacement hormones, they left the ovaries, which developed hard cycts in addition to whatever I had previously (this time not the normal fluid filled ones). These were removed last fall, but mostly to play it safe because of family history of related cancers if it were cancerous. Thankfully, it was not.
But since you are younger, you are wise to hang on to your reproductive organs as long as you can. There are some days I really regret not having had children of my own, but at the same time, if I had, I wouldn't have been able to give him/her (or them) the care they would have deserved because of my own health. But you have to give that every hope you can if that is your desire someday. Good luck with everything. Hugs.
 
SandyUte said:
I would think (and my hubby with crohn's agrees) if the biopsies are of the ulcers themselves, it would show something more specific. Ulcers on the TI sounds like an IBD, which I hope doesn't scare you, but gives you some some answers and peace as to what is going on. Personally, I hate not knowing more than anything. Good luck, and let us know how you are doing.
Click to expand...

Thank you Sandy - The doctors have told me they just don't know what to do at this stage in terms of a diagnosis, they think something is wrong but said that the ulcers were not enough in themselves to diagnose me - if the biopsy comes back as inconclusive for IBD, what else could cause the ulcers?
They gave me a choice about an hour ago to either
1) start a dose of steroid treatment incase it is crohns
2) Start me on a nutritional liquid diet (which is sometimes used to treat mild crohns)
3) wait for biopsy results.

Ive chosen to go on the liquid diet as do not want to start steriods if I dont need them. Very scary time right now, but as you say I just want some answers
 
ruby7829 said:
Thank you Sandy - The doctors have told me they just don't know what to do at this stage in terms of a diagnosis, they think something is wrong but said that the ulcers were not enough in themselves to diagnose me - if the biopsy comes back as inconclusive for IBD, what else could cause the ulcers?
They gave me a choice about an hour ago to either
1) start a dose of steroid treatment incase it is crohns
2) Start me on a nutritional liquid diet (which is sometimes used to treat mild crohns)
3) wait for biopsy results.

Ive chosen to go on the liquid diet as do not want to start steriods if I dont need them. Very scary time right now, but as you say I just want some answers
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I agree with your choice.
 
I agree with your choice too. That is so tough though! You just have to stick around here now as you are officially undiagnosed (poor attempt at humor here). Do keep us posted though. Do you know how long you will be there?
 
SandyUte said:
I agree with your choice too. That is so tough though! You just have to stick around here now as you are officially undiagnosed (poor attempt at humor here). Do keep us posted though. Do you know how long you will be there?
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I'm in hospital over the weekend as I am still needing IV for anti nausea and quite strong pain relief.
I have a question that the doctors cannot seem to answer here that maybe you could shed some light on... Ever since I have had this bad flare up I have also started bleeding (period) however I am on the pill at the moment and am not taking the sugar pills. The theory I have come up with is that because of the amount of diarrhea that I am having, that my pill is not being absorbed. Is there any other reason you can think of? Do you think this is a gynae problem.. although im not sure any gynae problem causes profuse pooing haha.
 
Oh, that statement had me giggling to myself! I'm quite sure that you are not absorbing things as you should be since you have diarrhea, not absorbing meds or nutrients. If you have not had previous gynecological problems when on the pill, I'm sure you're ok in that regard, though I'm not a doctor, of course. Keep an eye on what is going on, though. (Doesn't help with the cramping, does it?)
 
SandyUte said:
Oh, that statement had me giggling to myself! I'm quite sure that you are not absorbing things as you should be since you have diarrhea, not absorbing meds or nutrients. If you have not had previous gynecological problems when on the pill, I'm sure you're ok in that regard, though I'm not a doctor, of course. Keep an eye on what is going on, though. (Doesn't help with the cramping, does it?)
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Gotta be some humour in this situation I suppose, I feel I am becoming a very open person lol. I can't tell what is causing what haha.. if I'm in pain because I am bleeding, or if i am in pain because of whatever else is going on which is why I'm bleeding haha. Its a very messy time. The Gastro team at the hospital has called the gynae team to come and have a chat to me as well. The good thing about this experience is that I feel the doctors are communicating well with me, they are giving me options and are listening to me. This sounds a whole lot better than other peoples experiences with being diagnosed.

I do feel very silly submitting myself to a forum though, but this is all so new to me that it is nice to talk to people who are experiencing similar problems.
 
It can feel very strange indeed how much we expose ourselves, so to speak, and sometimes I say wayyyyy too much. But what you have said is in the norm. ;)
 
ruby7829 said:
Thank you Sandy - The doctors have told me they just don't know what to do at this stage in terms of a diagnosis, they think something is wrong but said that the ulcers were not enough in themselves to diagnose me - if the biopsy comes back as inconclusive for IBD, what else could cause the ulcers?

They gave me a choice about an hour ago to either

1) start a dose of steroid treatment incase it is crohns

2) Start me on a nutritional liquid diet (which is sometimes used to treat mild crohns)

3) wait for biopsy results.



Ive chosen to go on the liquid diet as do not want to start steriods if I dont need them. Very scary time right now, but as you say I just want some answers
Click to expand...
 
Wow that's hard I have had everything pointing towards Crohns for the last couple of years, but my Gi wanted to see ulcers before diagnosing it (none found). Good choice on the liquid diet can alway switch to steroids if the biopsy shows Crohn's. Which hospital are u in? My GI is head of the gastro dept at Waitemata.
 
OMG the nurse told me that there's a possibility I might get to go home today. So now I'm on pins & needles. I would *love* to go home, sleep in my bed, cuddle my pets, spend time with my hubby! I'm almost crying just thinking about it. I can't get myself too worked up because it's only a possibility and nothing definite just yet.

Also, I switched from IV steroids to oral pred today. I'm taking 40 mg. Wooooow, it really hit me kind of hard when I took those tablets! I got a fairly bad dizzy spell, followed by feeling like my heart is racing, and now I just feel really jittery like I've had 10 cups of coffee (and I don't even drink coffee). The highest dose of pred I've had in the past was 20 mg so this is a lot of pred for me. I'm sure my body will adjust, it's just that first dose was a doozy!
 
Cat, for perspective I'm 5ft 7 and weigh 98lbs...
I agree that I could do with a fresh pair of eyes looking over everything to be honest, I have for a while been contemplating a second opinion. She basically said because I haven't continued to lose weight its not a concern. I was pretty pissed off with that to be honest!
I'm ironically too well to be admitted to the hospital other than as a planned admission requested by a consultant or whatever! Which I do struggle to understand a little. It does feel like here there is no "lets treat this before it becomes life threatening" thought.
I'm seeing the dietician again on the 7th so I'm going to stress to her just how much I'm struggling and just basically beg her to do more to help me. There is a walk in here over the weekend but they have historically been useless so I don't think it's worth it. I honestly feel like my body is trying to shut down lately.

Maya, thank you for that, that sounds so terrifying to go through as a parent! I haven't had a gastric emptying test no, my doctors basically disregard the role of my nausea in everything and the impression they give is that because they haven't yet found the answer I shouldn't have so much nausea and so I must be exaggerating or something!
I do actually have another form of dysautonomia though, POTS, and from what I understand it's common to have multiple forms of dysautonomia.
As far as I'm aware over here I could go to hospital to have a tube placed, then the nutrition company could come out and teach me to use the pump and all that then the community nursing team could come out and do bloods every few days. But it depends whether I could get the funding, if I'm not considered ill enough it won't happen.
Honestly, I'd rather be admitted for it though, I live a good 40 minutes from hospital so if I were to get refeeding syndrome (which I understand I'm high risk for) I'm aware it can need very swift medical intervention, so I would feel safer in hospital.

MissLeopard, I've had two surgeries for my endometriosis, the first one I took about 3 weeks to get back to work (it was a physical job though) and the second was more extensive and took 4 weeks to get back to my desk job. I didn't have a D&C though, just the endometriosis removed from the pelvic cavity and outside of the uterus and stuff like that. Ironically for me my GI symptoms didn't start until after my endometriosis surgery :rof:
 
Sarah, you're only an inch shorter than me but 30 lbs lighter! And I am getting concerned about my own weight! I really think you need to go to the hospital, you said yourself you feel like your body is starting to shut down. That sounds seriously scary. I think you should go to the hospital's emergency department, tell them your symptoms and how poorly you're feeling, and ask to be admitted. Don't wait until it's a life or death situation!

As for me, I'm home. Really weak and shaky and low-energy. I'm trying to choke down my 3rd Vivonex of the day. They ended up sending me home with a short burst of pred, I really hope that's enough to kill this flare. (It's 40 mg for 5 days, then 30 mg for 5 days, then 20 for 5 days, then 10 for 5 days, then done.) I have a feeling that on about day 6, I'm going to be calling my GI in tears asking to stay at the higher dose for longer. But we'll see. They're trying to get me an urgent appointment with my GI ASAP but they haven't called me with that info yet. I'm just going to rest all weekend, try to drink as many Vivonex as I can, and try to heal as much as I can. I'm wiped out, being in the hospital is exhausting!
 
Maya, thank you for that, that sounds so terrifying to go through as a parent! I haven't had a gastric emptying test no, my doctors basically disregard the role of my nausea in everything and the impression they give is that because they haven't yet found the answer I shouldn't have so much nausea and so I must be exaggerating or something!
I do actually have another form of dysautonomia though, POTS, and from what I understand it's common to have multiple forms of dysautonomia.
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I know quite a few kids with POTS and Gastroparesis -- it's crazy that they won't test you. Could you ask next time you see your GI? Or see someone else? Nausea, belly pain and so much weight loss is definitely concerning.

It really sounds like you need to be in the hospital for tube feeds.
 
jcashen87 said:
My Biopsy results came back, since it was a stricture they could only get to the outside edge of it for the Biopsy. Once he made sure I have never been an Advil taker he said that it was Crohn's Disease. I think since they couldn't biopsy all their usual spots they didnt get the greatest tissue sample. But with the severity of the stricture and what they could look at, it was enough for him to say i had Crohn's.


Bittersweet day, because he then informed me after conuslting with the IBD specialist with Kaiser Permanente they think I need surgery, he does not want to put me on steroids because he said it is hard to get off and could lead complications for the upcoming surgery. They also have to do a CT scan since they could not get past my stricture in my transverse colon. I worry there is more stricturing further along in my system. Since i Have been in pain for several years but have had normal BM in the morning and just pain daily all my DR thought I had IBS and I was a little too easy to convince of this and try a new med.

I am sort of concerned because I always thought surgery was the last option for Crohn's. Also since they couldn't get past it with the scope who knows how much they might end up wanting to remove! He is putting me on 5-ASA just to help inflammation stop for now possibly. But the stricture they biopsied was too much scar tissue that they think it will never heal and needs to be removed. This is my intro to Crohn's disease. I should have pushed my Dr's sooner. That would be my advice to everyone from here on out, and is wonderfully echoed on this forum all the time. Push for other opinions and further testing. I am glad to have found this forum while I was stressing off all the things possibly wrong with me.

Thank you
Click to expand...

Hey...
Yes surgery should be your last option why not humira or another
Biologic to see if it's a stricture caused by inflammation
Can be treated with steroids and stronger meds. That worked for me
Good luck
 
Cat-a-Tonic said:
Anybody ever tried the low-FODMAP diet? It was the one thing that the dietician (or nutritionist? I can never remember which one is the legit one) had recommended. It looks like something I could do when I'm more recovered from this flare. It's actually fairly close to what I already eat when I'm healthy. Rice, fish, oatmeal, etc. I think I'm going to try it but would love any insight or advice from anyone else who's tried it.
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Hey...
I did try it didn't really help and I couldn't eat a lot of the foods that are
Ok to eat. But I've heard of others that it works well
For
 
Totally off topic (I think, I have no idea anymore what's related to what): My 10 year old son has a kidney stone!! Poor baby was in a ton of pain :( but thankfully it's small (3mm) and still in his kidney right now. They sent us home with flomax and pain meds. I just got his urine results on the patient portal - he hadn't been allowed to eat or drink for hours before they finally ran his urine in the ED - he had moderate amounts of ketones (40). Is there any reason you guys can think of that that would happen? I mean, he does maybe eat more protein than the average kid, just because of food preferences right now (he's into steak and hotdogs - kids are weird sometimes) but that's not a huge portion of his diet - I mean, he eats carbs all day long, too, especially now that he's back in school.

Anyway, that's my current freakout. Thanks for reading.

Wishing everyone health!!
 
Cat how are you feeling for being home? You must be so glad to be back in your own bed with the furrbabies!

I'm having a rough day which I suspect is about to turn into a rougher night :( I suspect I will be typing this between toilet trips. All day I've had extra pain and my guts have been really grumbly so I've been super careful with food (barely any, I know that's bad/naughty) and had a pj day. Then of course this evening nausea increased and I've taken my first antisickness of the day, my temperature is fluctuating between 37.5 and 38.5C so not a mega fever but a bit and I feel boiling hot but shivery and shaky and exhausted and just generally terrible :(

Over here it's bank holiday weekend Saturday so the last thing I want to do is have to go seek medical help, especially as I know as usual they won't do anything :( So instead I'm sat in shorts and sports bra, puke bowl to hand in case and feeling like my TI is being attacked with razor blades. I just want to cry but I seriously no longer have the energy to spare.

I'm seriously thinking about going down to the walk in tomorrow on the off chance, they were the ones to give me the antisickness over Easter when my nausea got out of control so maybe I will get someone nice again. Although I highly doubt it will end in the elusive admission...

This time last year is when my symptoms really ramped up and I finally went to the doctors. It's also when I lost the stone in weight so I'm really hoping I'm not heading for any more weight loss!

Hope everyone else is feeling a little better!

Wildmnthoney I'm sorry to hear that your son has a kidney stone, I hope he isn't suffering too much with it!
 
Well, my temperature came down over night, my pain didn't increase and I managed not to puke so I didn't bother with the walk in centre, I'm like 99% sure they couldn't/wouldn't do anything anyway.

I'm basically so ready to just give up now. I don't think I have the energy or fight left in me to deal with any more medical professionals, I'm getting nowhere. I would rather have an answer and proper treatment but I guess I'm going to have to settle for living on antisickness, imodium, buscopan and fortijuce/ensure clear.

I keep overthinking the dietician thing and as much as I still hope she will take action and admit me for tube feeding, I'm beginning to seriously doubt that she will do anything. Experience says in another year I'm going to be in exactly the same position as I am now. And the over reacting part of my brain says at this rate in another year I will be dead :rof:

I just had half a tin of soup with a bread roll so will see how that goes.

Sorry for moaning, just nowhere else really to vent :(
 
sarahfh said:
Well, my temperature came down over night, my pain didn't increase and I managed not to puke so I didn't bother with the walk in centre, I'm like 99% sure they couldn't/wouldn't do anything anyway.

I'm basically so ready to just give up now. I don't think I have the energy or fight left in me to deal with any more medical professionals, I'm getting nowhere. I would rather have an answer and proper treatment but I guess I'm going to have to settle for living on antisickness, imodium, buscopan and fortijuce/ensure clear.

I keep overthinking the dietician thing and as much as I still hope she will take action and admit me for tube feeding, I'm beginning to seriously doubt that she will do anything. Experience says in another year I'm going to be in exactly the same position as I am now. And the over reacting part of my brain says at this rate in another year I will be dead :rof:

I just had half a tin of soup with a bread roll so will see how that goes.

Sorry for moaning, just nowhere else really to vent :(
Click to expand...

Sending supporr and prayers
 
I may need to search the forums better, but anyone know how to tell/guess if my EoE could be from something beyond "just" allergies from the biopsy #s? Basically, in the bottom third of my esophagus, they found over 70 eosinophils per high power field, and in the upper third, it was just over 20 (of course anything over 15 is diagnostic). I'm just curious, with that much of a difference, and that many MORE eosinophils in the lower third, if that means anything ?
 
Wildmtnhoney said:
I may need to search the forums better, but anyone know how to tell/guess if my EoE could be from something beyond "just" allergies from the biopsy #s? Basically, in the bottom third of my esophagus, they found over 70 eosinophils per high power field, and in the upper third, it was just over 20 (of course anything over 15 is diagnostic). I'm just curious, with that much of a difference, and that many MORE eosinophils in the lower third, if that means anything ?
Click to expand...
I am just making a wild guess but have you ever asked your doctor about esophagitis?
 
Thanks Ron.

I am waiting to see my GI still. I did more goggling. It looks like it could be another eosinophilic GI disease, because they didn't take biopsies from my stomach or small intestine, so we don't know if there are issues there too, or not. But treatments can be similar.

I'm actually looking at elemental diets myself now, in preparation of my GI visit. It sounds like there are several ways to heal the GI tract of eosinophil inflammation, but total elimination of protein allergens appears to be the best (darn it!) and I got food partially stuck again last night -- had some steak and potato, thinking that the dilation must have surely helped (haven't eaten anything like that in a LONG time). It wasn't the steak that got stuck, but a too big, too dry bite of potato :(. Of course I don't know what else with dinner may have triggered any increase in inflammation, etc etc. I just know that today, I plan on going back to my "soft" diet.
 
Wildmtn, I don't want to deter you from trying an elemental diet, but I have to say it's VERY expensive and insurance really balks at paying. My insurance isn't paying for my Vivonex - I'm actually sitting here waiting for the specialty pharmacy to open so that I can order a 2-week supply of my elemental drink and it's going to be over $600. Thank goodness for credit cards (and my parents said they'd help me out money-wise as well). So I'm hoping 2 weeks is enough to get me through this flare! I can't afford any more than that! Definitely do some research and talk with your insurance company before trying elemental because it's not cheap (not that anything is when you're chronically ill, but you know what I mean).
 
Cat-a-tonic/wildmtn
EOE is treated by either an elimination diet of the top eight proteins ( milk eggs wheat fish shellfish peanuts tree nuts and soy ) plus een to make up the difference or swallowed steriods ( Flovent ) .
Regular food or formula will not work
EOE is a mixed IgE reaction to the proteins in food - any food can be a trigger and most have multiple triggers
Some folks need both ( steriods and formula ) and some need pure een and add only one to three foods then scope every three months.
Insurance does tend to cover formula for EOE more now since it is an accepted treatment .
Your Gi will probably send you to an allergist for regular rast /skin allergy testing plus patch testing

There is a parents group for EOE here
But we do have some adults who have EOE and other Egids
http://community.kidswithfoodallerg...esources-egid-celiac-crohn-s-fpies-and-gerd-1

http://community.kidswithfoodallerg...erred-to-formula-and-tube-feeding-resources-1

Does require a login but is free ;)

Some think egids are precursors to Ibd but not proven yet
Here is a link to apfed
http://apfed.org
 
As far as EOS found in the esophagus anything more than 15 EOS per high power field is considered EOE provided you were on a high dose ppi for at least 6-8 weeks prior to the scope . If not some Gi required you take the ppi and rescope.
Diseases like crohns have secondary eosinophilia but these are found lower in the Gi tract and are lower in number above the norm( it is normal to find EOS in the lower Gi tract).
Also EOE is patchy so you may find more EOS in one spot vs the other .


Forgot one other big trigger is beef
Most folks have better luck with pork for some reason who have EOE .
Lastly if your Gi is going to require a rescope after 6-8 weeks of ppi then you don't want to "fix" things by starting anything including een early

Once you find your triggers it is manageable just takes some folks a very long time .

Fwiw Ds is free of a lot of the top eight allergens right now but does not have egids ( our Gi looked multiple times )

Good luck
 

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