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Thank you SOOOOO much mylittlepenguin!! I have already pulled up your links and will look further later when I have a moment.

I was only on an otc dose of ppi for barely 2 weeks (had been off of them for a long time), so I'm not sure what they'll do.

I'm super annoyed at my GI practice right now, though. Apparently, she moved from the university's main campus, to a smaller university run clinic, and it will be a MONTH before I can be seen by her again, and the university hospital doesn't want to switch me to a different GI - arg!! I emailed her over the weekend asking what to do. She said she's good at email, so here's hoping!
 
Got a reply!! Glad I heard it here first- she wants me on 40mg omeprazole twice a day for 6+ weeks then another upper endoscopy before we proceed with allergy testing.

So I'll keep eating my regular diet, hoping to keep the Eosinophils high (seems so wrong!) if it is indeed an allergic response.
 
I know it seems counter intuitive but
If all you need is a ppi which does control some folks minor EOE and no diet changes /steriods then you call it a win
But honestly with your numbers they may go down some since ppi has treated some EOE but not most
So use that time to research
Beware most Gi don't offer adult patient total een with multiple scopes to find triggers to just treat the disease
This is because most adults have a very hard time going that long without solid food and prefer the easier drug method
If you are able to find all your triggers then potentially you could just avoid those and go on your merry way no drugs needed just lists of avoidance
That however can be extremely tricky and sometimes impossible even for parents who watch their kids like Hawks and still can't figure out which food is the issue .

So if you want een with top eight free plus beef /corn you may have to ask

Second allergy testing isn't very effective for EOE
It is done but since the reaction is a mixed IgE and not traditional IgE allergy the the blood and skin prick tests rarely identify triggers
Patch skin testing is done times better but ....
Just try not to get your hopes up


Glad your Gi is following the standard of care
That's a good thing
;)
 
thank you so much mlp! I am certainly not looking forward to any diet changes, but I think I'm just so fed up with things that een just seemed "easy" in terms of not having to think (not in any other sense though!!). The more I read, of course, the harder it sounds!

At the same time, I am thinking back across my life and wondering if this has been one of my issues all along. I was the kid who *always* had a belly ache, but was never believed once dr's ruled out the "obvious" stuff. I had issues with not wanting to eat, or only wanting to eat very specific things. Some of that was blamed on my tonsils being so big it was difficult for me to swallow, and then once they were removed, I learned that I could *drink* foods! I sort of never looked back from that, and I think that's where a lot, if not most, of my weight gain has been over the years - liquid and/or soft food calories. I know for sure that's been my diet for months and months now, and I have been saying it's "low residue" for my belly issues, but looking around, most of my foods are also "soft" to eat -- canned fruits, puddings, yogurts, well cooked rice, with the occasionally treat of icecream. Of course that is also a LOT of dairy! ~sigh~

Anyway, thanks again and again!! I am feeling less lost as the days go on. My Dr even linked me to the Mayo site on EoE (although I'd found it myself, it was nice that she included the link).
 
Hi, everyone! Well! I was sent a list of what to do to approach my GP & GI. This week I collected all reports from hospitals, surgeons, GI specialist, and from blood groups.

I found the blood has a disorder, picked up many years ago by local labs. Sent off to a Blood Specialists now, for understanding.

Next reports, from the GI, who in turn sent all reports on going to local GP. I then asked GP if he read the reports, he stated "No, I do not have time to read the reports!" Every note, letter to GP from GI, requests if I run into difficuilty for GP to contact GI. This has not happened, as he is not reading reports.

I have asked GP on many ocassions to contact GI for help, he would not. The GP was more interested in my pain medications then a diagnoises, yet, on many ocassions I have asked the GP to help me find a diagnoises, as pain pills were not the answer. Som what do I do? Today I will see another GP in the same practice, this time I will interview him and ask him his method of treating patients.

Next week I have a 15 minute appointment with GI for my 6 monthly visit, where in 15 minutes I must explain my pain, what I have been going thru, the bowel movements until 3:00 AM, the pain meds, and all else. How do I handle this appointment in 15 minutes? I have asked GI on many ocassions if I could go to the hospital for treatment, did not get a responce. No responces from GI in 6 months. During that period I even asked for another appointment, which he denied me. HOW DO I HANDLE THIS APPOINTMENT IN 15 MINUTES?

Am I going about this in the wrong way?
 
lacey2 said:
Hi, everyone! Well! I was sent a list of what to do to approach my GP & GI. This week I collected all reports from hospitals, surgeons, GI specialist, and from blood groups.

I found the blood has a disorder, picked up many years ago by local labs. Sent off to a Blood Specialists now, for understanding.

Next reports, from the GI, who in turn sent all reports on going to local GP. I then asked GP if he read the reports, he stated "No, I do not have time to read the reports!" Every note, letter to GP from GI, requests if I run into difficuilty for GP to contact GI. This has not happened, as he is not reading reports.

I have asked GP on many ocassions to contact GI for help, he would not. The GP was more interested in my pain medications then a diagnoises, yet, on many ocassions I have asked the GP to help me find a diagnoises, as pain pills were not the answer. Som what do I do? Today I will see another GP in the same practice, this time I will interview him and ask him his method of treating patients.

Next week I have a 15 minute appointment with GI for my 6 monthly visit, where in 15 minutes I must explain my pain, what I have been going thru, the bowel movements until 3:00 AM, the pain meds, and all else. How do I handle this appointment in 15 minutes? I have asked GI on many ocassions if I could go to the hospital for treatment, did not get a responce. No responces from GI in 6 months. During that period I even asked for another appointment, which he denied me. HOW DO I HANDLE THIS APPOINTMENT IN 15 MINUTES?

Am I going about this in the wrong way?
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Is there another GP you can go to?
 
Find another GP and GI that will listen! And read reports that is so maddening [emoji35] that you have been treated like that.
 
Lacey, I agree. Find someone who will listen to you, as quickly as possible for both a new GI and GP. In the meantime, until you are able to get into your new doctors (I know this can take weeks in itself), make a bullet point list, a copy for you and a copy to give your GI and tell him up front as he greets you that those are the things you would like to cover with him. Have your copy out and check off the items as he goes over them to your satisfaction. Make the bullet points the highlights of your concerns, and as succinct and to the point as possible. I found that this really helps me have clarity of thought also, and I know that my GP at least expects it from me. I hope it helps. Good luck! (Let us know how your appointment goes.)
 
Hi - I'm not new to the forum but am new to this thread. I have had symptoms consistent with IBD for over 2 years now (since age 21) including diarrhoea, vomiting, weight loss, rectal bleeding and other more generalised symptoms like muscle/joint pain, sore/red/dry eyes, mouth ulcers and sores constantly, fatigue & generally feeling faint and nauseated.

My fecal calprotectin was high (450) and I was determined to be in metabolic alkalosis several months ago, probably due to repeated vomiting. I've lost 9kg in weight so around 20lbs (from the cusp of overweight, so it hasn't made me underweight but this is all in the past 6 months. I seem to have really severe diarrhoea kind of all at once- it's like my entire digestive system empties itself in around 2-3 hours of one day and I can go to the toilet like 15-20 times (not small amounts; I swear my whole intestines are emptying!) followed by 3 days of no BMs (not constipated, just seem "empty"). Normally when I have the 2-3 hours of diarrhoea, there is also blood mixed in with the stool and it has been confirmed that this is not caused by hemorrhoids or fissures in the anal region.

So far I've had an OGD and colonoscopy with 4 biopsies, which were clear except for what the GI described as an "inflammatory polyp". He has ordered a capsule endoscopy to image the jejunum but believes that this is IBS/functional colonic disorder, NOT IBD.

Am I wrong or does this NOT sound like a functional disorder? He's totally failed to explain the weight loss, bleeding, malabsorption, vomiting and downright severity of the whole thing. I'm barely functioning because I'm in so much pain during flares and the nausea, vomiting and diarrhoea are unbearable.

I feel so low about all this as I really don't want to have crohn's but also need some answer beyond it being "functional". How is bleeding functional - there MUST be a structural cause of that..... blood literally doesn't come from nowhere! Also all the research I've done suggests that inflammatory polyps are caused by IBD, so I don't get how he's diagnosed an inflammatory polyp but doesn't think it's IBD?

Sorry for the long/frustrated post but this whole thing is so overwhelming :(

ETA my GP is also baffled by this whole thing as they were certain this was IBD and are confused now, especially as I've started having regular fever during this flare which they have observed in my appointment there. And apparently have hyperactive bowel sounds as well....
 
emm142 said:
Hi - I'm not new to the forum but am new to this thread. I have had symptoms consistent with IBD for over 2 years now (since age 21) including diarrhoea, vomiting, weight loss, rectal bleeding and other more generalised symptoms like muscle/joint pain, sore/red/dry eyes, mouth ulcers and sores constantly, fatigue & generally feeling faint and nauseated.

My fecal calprotectin was high (450) and I was determined to be in metabolic alkalosis several months ago, probably due to repeated vomiting. I've lost 9kg in weight so around 20lbs (from the cusp of overweight, so it hasn't made me underweight but this is all in the past 6 months. I seem to have really severe diarrhoea kind of all at once- it's like my entire digestive system empties itself in around 2-3 hours of one day and I can go to the toilet like 15-20 times (not small amounts; I swear my whole intestines are emptying!) followed by 3 days of no BMs (not constipated, just seem "empty"). Normally when I have the 2-3 hours of diarrhoea, there is also blood mixed in with the stool and it has been confirmed that this is not caused by hemorrhoids or fissures in the anal region.

So far I've had an OGD and colonoscopy with 4 biopsies, which were clear except for what the GI described as an "inflammatory polyp". He has ordered a capsule endoscopy to image the jejunum but believes that this is IBS/functional colonic disorder, NOT IBD.

Am I wrong or does this NOT sound like a functional disorder? He's totally failed to explain the weight loss, bleeding, malabsorption, vomiting and downright severity of the whole thing. I'm barely functioning because I'm in so much pain during flares and the nausea, vomiting and diarrhoea are unbearable.

I feel so low about all this as I really don't want to have crohn's but also need some answer beyond it being "functional". How is bleeding functional - there MUST be a structural cause of that..... blood literally doesn't come from nowhere! Also all the research I've done suggests that inflammatory polyps are caused by IBD, so I don't get how he's diagnosed an inflammatory polyp but doesn't think it's IBD?

Sorry for the long/frustrated post but this whole thing is so overwhelming :(

ETA my GP is also baffled by this whole thing as they were certain this was IBD and are confused now, especially as I've started having regular fever during this flare which they have observed in my appointment there. And apparently have hyperactive bowel sounds as well....
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I would consider switching doctors. Particularly, the bleeding would bother me. Let us know how it turns out.
 
Just a little update... ive managed to see q new specialist and get a colonoscopy on the 6th thankgod..so its the last step!! I love my training and weights ect and have been doing light training lately. Its my only hobby really which i know is sad. But my sleeping last few weeks has become dreadfull...no prescribed sleeping tablets have even touched me ect..im off to the doctors today and thinking about going on mirtazipine again. Was on and off it for 18months...is a mild anti depressant but good for insomniacs too.

Question i suppose im getting at is im struggling sleeping and struggle to get out of bed most days ect...you think i should still try and do light training ect? Or just let my body rest and do absolutely nothing if this makes much sense?? I cant help but keep pushing things and fighting all the time..when people around me tell me i look so ill and need to rest ect
 
Dave, I love fitness too - but, in a flare, I know what my body needs most is rest. I would recommend that you try resting for at least a few days and see if that makes any difference in how you feel. Listen to your body - it will usually tell you what it needs.

As far as other hobbies, you might need to seek some out! It's important to keep yourself distracted and occupied and to feel worthwhile during a flare. I do a lot of crafts - I crochet and I sew, and I just got myself a small loom that I'm going to try out soon. I also enjoy watching Korean and Japanese TV/movies and trying to pick out words I know and trying to learn new words too. Oh, and this is silly, but I've been buying myself small Lego sets online recently. :p It's a really fun distraction to be able to build something out of Legos. It's a nice little treat, too.
 
Cat-a-Tonic said:
Dave, I love fitness too - but, in a flare, I know what my body needs most is rest. I would recommend that you try resting for at least a few days and see if that makes any difference in how you feel. Listen to your body - it will usually tell you what it needs.

As far as other hobbies, you might need to seek some out! It's important to keep yourself distracted and occupied and to feel worthwhile during a flare. I do a lot of crafts - I crochet and I sew, and I just got myself a small loom that I'm going to try out soon. I also enjoy watching Korean and Japanese TV/movies and trying to pick out words I know and trying to learn new words too. Oh, and this is silly, but I've been buying myself small Lego sets online recently. :p It's a really fun distraction to be able to build something out of Legos. It's a nice little treat, too.
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Dortor demanded i take 2 weeks off and gave me mirtazipine so hoping it will take the edge off everything mentally and get me sleeping!! So hard though isnt it cat no training lol..ive done it all my life and so used to pushing myself!! But like you said just gota listen to my body and not over do it now... im hoping to move to greece in the next year or so...so maybe il start brushing up on my greek again hehe
 
Yeah, it's really hard not exercising. That's my main anti-depressant, so when I can't work out, I tend to get feeling down pretty easily. This flare up has been the worst I've ever had, too, so it has not been easy at all. I'm doing a liquid-only elemental diet right now so I don't have a lot of energy or strength, I can't walk/stand for more than a minute or two, so I know fitness is completely out right now. It is frustrating for sure though. Normally I'm cycling, lifting weights, kayaking, and taking long walks with my dog this time of year. I have barely left my house in a week though and haven't been able to do anything even close to exercise. It sucks!
 
Cat-a-Tonic said:
Yeah, it's really hard not exercising. That's my main anti-depressant, so when I can't work out, I tend to get feeling down pretty easily. This flare up has been the worst I've ever had, too, so it has not been easy at all. I'm doing a liquid-only elemental diet right now so I don't have a lot of energy or strength, I can't walk/stand for more than a minute or two, so I know fitness is completely out right now. It is frustrating for sure though. Normally I'm cycling, lifting weights, kayaking, and taking long walks with my dog this time of year. I have barely left my house in a week though and haven't been able to do anything even close to exercise. It sucks!
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Aww im so sorry to hear that cat and hope you start feeling better soon :-(. Like you said nothing better than a little training session to get the endorphines going! I know everybody suffers differently with flare ups ect.. but have you tried any preworkout or caffiene ect just to perk you up slightly.. find it licks me up for a few hours then back to bed but atleast i feel like ive achieved something then
 
Dave, I can't have caffeine, it gives me migraines. :( I need to get out of this flare first, then I can start with things like walking and build myself back up to lifting weights. But first things first, I have to heal. I do get little senses of accomplishment from finishing craft projects, like I made some good progress on a scarf/shawl that I've been crocheting and when it's done I'll have a functional piece that I can either keep for myself or give away as a gift. That's how I feel worthwhile in a flare when I can't work out.
 
Cat-a-Tonic said:
Dave, I can't have caffeine, it gives me migraines. :( I need to get out of this flare first, then I can start with things like walking and build myself back up to lifting weights. But first things first, I have to heal. I do get little senses of accomplishment from finishing craft projects, like I made some good progress on a scarf/shawl that I've been crocheting and when it's done I'll have a functional piece that I can either keep for myself or give away as a gift. That's how I feel worthwhile in a flare when I can't work out.
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Ahh right thats fair enough then.. glad youve got another outlet though rather than training! I used to play alot of darts so may take that up again minuss the alcohol though...i dont seem to have many foods ect that trigger my stomach off other than alcohol or too much fizzy pop
 
I'm the opposite, I have a lot of trigger foods. Even when I'm healthy, I can't have beef, I have a hard time with dairy (lactose intolerant), I have issues with garlic and coconut and certain spices, I have a hard time with fiber, etc. In this flare, I got to the point where I couldn't tolerate ANY food and had to go on a liquid elemental diet. It's really not a fun time. I'm still on the elemental diet for a little bit longer. Middle of next week or so, I'm going to try to start incorporating bland foods into my diet again - broth, jello, rice, etc. Wish me luck!
 
I forgot to mention and dont know whether this is the right place to ask this question...

My partner has said For around 2 weeks now ive been talking in my sleep alot...
Then the last 2 days ive been sort of hitting out in my sleep and saying agressive things?? Then last night i actually fell out of bed and havent done that since i was a kid?!

Me and my partner have a great relationship and ive got no worries ect other than been undiagnosed yet. But the last 2 nights where i lash out and fell out of bed ive complained of being in immense pain in my stomach..

We are a bit baffled and wondering is maybe me being in pain whilst asleep setting this off?? Anybody else has any simular issues??
 
Dave, did you start that medication that was supposed to help you sleep? That could be the culprit. I take 25 mg amitriptyline to sleep, and my husband hasn't said anything about me talking in my sleep, but it has affected my dreams.

IBD can give you pain in the night, but for me usually it wakes me. It's like someone is punching me in the gut to wake me up, it's not something I could sleep through. I suppose though that if you're a heavy sleeper then you might sleep through it and lash out instead? I don't know, that's something to ask your doctor about.
 
Cat I hope the flare eases soon! You are really having a rough time. It's good you have an outlet with your craft, I like that sort of thing too and really should get back into it as I think it really does help our wellbeing when dealing with the other health stuff.

I got the results of my sleep test and I have severe apnoea, so in a few weeks I'm off for another one using CPAP to see if that helps. Meantime MRI tomorrow for migraines and fi ally the scopes for my gut issues the following week....looking forward to the prep [emoji30]. I am worried that it will show nothing! And what then....got to stop getting into that what if cycle. It's like all of this stuff is going wrong (also have referred nerve pain in my leg and have to get that seen too) and I feel so old (I'm not quite 50 yet) and get sooooo frustrated I can't do the things I want to do!!
 
I think I'm finally beating this flare. I'm still doing the liquid elemental diet, and it's becoming increasingly difficult. The drinks are not appetizing and not very filling, and I think my insides are healing, because I have been feeling hungry! I haven't had any appetite in this flare until recently. Also, just this morning, I had a formed/solid stool! It wasn't watery mush like it's been. I was so proud of it. So between having improved stool and an improved appetite, I feel like I'm doing better. Not out of the woods yet of course, but any improvement is a good thing.

Shell, good luck with the prep. Hopefully it'll be fine - I just did prep the other week when I was in the hospital and it wasn't bad at all (honestly, the prep gave me less urgency and less cramping than the flare had been giving me!). And if it shows nothing, keep pursuing testing - just because they don't find anything in the colon doesn't mean that there isn't something going on in the small intestine. You know your body and you know something is not right, so don't give up. Hopefully you do get some worthwhile answers though. Good luck!
 
Got a letter from my gastro doctor yesterday, my MRE was normal so looks like I'm stuck with the IBS diagnosis. I'm still not sure how I feel about that to be honest. I guess this will be my life now.

I'm going to make sure I ask her about the implications of the inflammation they found on my biopsies and whether it is likely to progress to IBD or not, as well as whether it puts me at an increased risk of bowel cancer.

I'm also going to ask about whether the nausea could be delayed gastric emptying/gastroparesis as the nausea seems to be too extreme for IBS and has gotten worse over the last year. I get full quickly, I also recently started getting stomach spasms half way through a meal which make me feel like I'm going to vomit. So far no vomiting though, I am so scared of it when I feel really sick I just can't let myself consider it and I don't relax until the feeling goes! I also find if I drink too much I get reflux and also warm drinks make me feel full. Plus I already have one type of dysautonomia, POTS.

I just feel so disheartened and even more like giving up. I'm also worried now that tube feeding won't even be considered by my dietician because it's "just IBS" but surely a 15.3 BMI overrules that? I don't know.
 
Cat-a-Tonic said:
I think I'm finally beating this flare. I'm still doing the liquid elemental diet, and it's becoming increasingly difficult. The drinks are not appetizing and not very filling, and I think my insides are healing, because I have been feeling hungry! I haven't had any appetite in this flare until recently. Also, just this morning, I had a formed/solid stool! It wasn't watery mush like it's been. I was so proud of it. So between having improved stool and an improved appetite, I feel like I'm doing better. Not out of the woods yet of course, but any improvement is a good thing.

Shell, good luck with the prep. Hopefully it'll be fine - I just did prep the other week when I was in the hospital and it wasn't bad at all (honestly, the prep gave me less urgency and less cramping than the flare had been giving me!). And if it shows nothing, keep pursuing testing - just because they don't find anything in the colon doesn't mean that there isn't something going on in the small intestine. You know your body and you know something is not right, so don't give up. Hopefully you do get some worthwhile answers though. Good luck!
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Happy to hear you are doing better, Cat.
 
I just feel so disheartened and even more like giving up. I'm also worried now that tube feeding won't even be considered by my dietician because it's "just IBS" but surely a 15.3 BMI overrules that? I don't know.
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In the US, they'd probably do tube feeding just because you are so malnourished and have lost SO much weight. Also, it REALLY sounds like you have some sort of delayed gastric emptying.

I would pursue that -- perhaps if you get a Gastroparesis diagnosis they will agree to tube feeds? Really sorry this is so difficult for you :(.
 
Maya142 said:
In the US, they'd probably do tube feeding just because you are so malnourished and have lost SO much weight. Also, it REALLY sounds like you have some sort of delayed gastric emptying.

I would pursue that -- perhaps if you get a Gastroparesis diagnosis they will agree to tube feeds? Really sorry this is so difficult for you :(.
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Maya thank you so much for all your help so far! I see the dietician on Wednesday so I will bring it up with her first, I'm also going to take a copy of the relevant bits of the NICE guidelines on enteral nutrition. I've typed out my points for the appointment and after my heart thing last week I've been having problems with getting breathless so I may just give her the sheet. Partly so I don't get too out of breath and partly so that way I can't chicken out of asking about tube feeds. I did wonder if they started with an NG tube and I was having problems they might do a GES anyway.

The way things are right now I am struggling so much that I really do feel like someone needs to do something soon. Everything (walking up stairs etc) gives me palpitations, chest pain and breathlessness so my body is obviously struggling.

It might sound bad but I've really set my heart/mind on a spell of tube feeding and I honestly can't see another way to get past this right now. I have a meeting on Thursday at work about attendance and I already know they will be starting the process of sacking me.
 
I wish they would just admit you. It sounds like you're really not doing well.

Just as a head's up -- if you do have Gastroparesis, you may not be able to tolerate NG tube feeds. Some people with Gastroparesis can tolerate liquids through their stomachs (since liquids do empty faster than solids) while others can't (my daughter is one of them). Then you would need an NJ or a GJ or a J tube.

But I'd definitely try the NG tube first if you can -- if you find it's making you very nauseous or throw up, then I'd ask for an NJ. An NJ is a bit of a pain because it can only be placed by interventional radiology (sedation is used for kids and I think, also for adults), so if it accidentally comes out, you have to go back to the hospital.
 
Maya142 said:
I wish they would just admit you. It sounds like you're really not doing well.

Just as a head's up -- if you do have Gastroparesis, you may not be able to tolerate NG tube feeds. Some people with Gastroparesis can tolerate liquids through their stomachs (since liquids do empty faster than solids) while others can't (my daughter is one of them). Then you would need an NJ or a GJ or a J tube.

But I'd definitely try the NG tube first if you can -- if you find it's making you very nauseous or throw up, then I'd ask for an NJ. An NJ is a bit of a pain because it can only be placed by interventional radiology (sedation is used for kids and I think, also for adults), so if it accidentally comes out, you have to go back to the hospital.
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To be honest I've not struggled this much for a while and I think it really is just the length of time I've been this malnourished.

From what I've seen around I'm expecting if it is any amount of delayed emptying then the NG won't help but at that point I will flag it up and request a GES and NJ/GJ/J tube. I've done enough research to kind of know what routes might be taken etc, research calms me for some reason haha. I know as well that with the NG they might try lower flow rate for longer first (just the way the NHS goes) if I do struggle with it.

I will admit I have been looking for a cute backpack just in case!
 
That might work. Currently my daughter is doing that -- a very low rate through an G tube. It's not ideal, but it works well enough for now.

We were given two backpacks through our homecare company. But you can definitely find them online. And if you find a cute one, let me know ;)!

Good luck and keep me posted. Will be thinking of you.
 
If you're crafty, you could try sewing your own backpack! Or if you buy a plain one, you could add cute decorative details to it. (Sorry, I've been crafting a LOT in this flare - scrapbooking, sewing, lots of crocheting, so my brain is in a crafty state of mind right now!) I had made myself a "going to the hospital" bag last year when I was going in for iron infusions - I had to sit there for 2.5 hours per infusion, so I wanted a large tote bag that was cute and would hold my laptop. It's really cute and large enough to hold my stuff and I made it from fabric that I adore. Anyway, just a random thought for you!
 
Maya, I will definitely keep you updated. I will ask for the backpack straight out as my bedroom is in the attic conversion with more a ladder than stairs up to it, so carrying a pump even on a frame up them will be tricky especially on those nights I need the bathroom quickly!

I've fallen in love with a small sized backpack but I'm not certain it's the right dimensions so I will wait for now before I commit!

Cat, I'm pretty crafty, usually I crochet but I do knit a little and I've literally spent all today wrestling my sewing machine out of the loft and trying to remember how to work it! I'm 99% sure I will be able to adapt a regular backpack to fit everything in. The pump my trust uses is the Flocare Infinity and you usually get a little plastic frame to hold that and the feed pack so really all I would need to do is sew in a strap to hold it in place :) I could also sew a lobster clip to the top, hang the feed pack from that and make a small hole with a rivet into the front pocket then feed the giving set through the hole and put the actual pump in the front pocket :)
 
Sarah, it's crazy to me that no one seems to be too concerned about your weight. At one point I was around 105-110 pounds, and I'm 5'6", and my doctors seemed to be somewhat concerned. I mean, not enough to take any drastic measures, but they did state their concerns and one of them gave me lists of foods to eat to help me gain weight. But if I remember correctly, you're taller than me, and weigh way less. I remember how skinny I looked then, so I can't even imagine. I really hope someone will see the need for tube feeds for you! I'm nauseous almost all the time too, so I can definitely relate. It's the most exhausting and horrible feeling. I'm pretty sure I have a phobia of throwing up too, so that doesn't help. I get so much excess saliva in my mouth, so I'm always spitting in the sink and stuff. It's gross. I laughed when I read that researching calms you, because I completely understand!

Cat, I'm glad to hear that you may be making a turn for the better. I really hope you can get out of this flare soon!

Being sick is so hard. I've decided that I just need to accept the fact that I'm probably going to be sick for ever. I need to accept that I probably won't ever finish my masters degree as planned, I probably won't ever work a normal job, and I doubt I'll even have kids some day. (I've always wanted kids, and I'm married and everyone asks me when I'm going to have them. But I just can't do it while being so sick. Taking care of my cats is hard enough.) I'm still going to continue seeing my doctor and trying all the treatments she recommends (and doing my own research!), but I think I just need to accept the fact that I may never live the life that I imagined for myself. It's hard, and it sucks, and I'm so MAD about it. But I don't know what else to do at this point.
 
I'm so sorry and sending strength and thoughts of health to everyone who needs them!!

I had thought I was doing well...then yesterday hit like a ton of bricks! I was fine in the morning, but by afternoon I was back to so much watery D and pain like I haven't had in quite awhile. And I had so many PLANS! Today I'm taking it easy, though, clearly letting go of a lot of those plans, and resting.

Tomorrow I take my son in for a renal ultrasound to see where his kidney stone is now - he knows he hasn't passed it yet. Then more appointments throughout the week for both of us.

Wishing everyone health!
 
Wildmtnhoney said:
I'm so sorry and sending strength and thoughts of health to everyone who needs them!!

I had thought I was doing well...then yesterday hit like a ton of bricks! I was fine in the morning, but by afternoon I was back to so much watery D and pain like I haven't had in quite awhile. And I had so many PLANS! Today I'm taking it easy, though, clearly letting go of a lot of those plans, and resting.

Tomorrow I take my son in for a renal ultrasound to see where his kidney stone is now - he knows he hasn't passed it yet. Then more appointments throughout the week for both of us.

Wishing everyone health!
Click to expand...
Hope you feel better soon.
 
So I had my barium x-ray today. And while I didn't get the results really, I saw what looked very much like a pretty narrow stricture. And I asked the tech who agreed that it looked like it was but he wasn't allowed to say anything for sure.

Does anyone know anything about esophageal strictures? I've read up a little but I'm not sure how serious they are or anything.

It's looking like maybe this is the reason they couldn't do my last gastroscopy, that it was just too narrow. And if you can't get a scope down, I don't know how one could possibly treat it?

Sending positive thoughts to all of you!
 
Wildmtnhoney I hope you're feeling a little better and your son's appointment went well!

Izzie I don't know anything about esophageal strictures in specific but I would imagine that could be why they couldn't get the scope down last time, I guess they could try under general anaesthetic maybe? Then try balloon dilatation at the same time?

Tomorrow is the much anticipated dietician appointment, then I see my GP two hours later about the palpatations/chest pain/breathlessness, as it's getting no better and it's really debilitating me right now. I am getting so nervous about it now though, after the way everything has been handled so far I'm a combination of terrified and convinced that it's just going to end up as wasted time with no help just like all my other appointments end up being :( I know realistically that they have to do something with how poorly I am right now but I can't shake the feeling that I'm going to be let down once again :( I've written my list of conversation topics out, including whether an NG can be considered, and I think I will just give that to her as talking too much makes me breathless right now and I just know with how nervous I am and how bad I feel that I'm likely to chicken out of asking.

If both the dietician and GP let me down this time I don't even know where to go next, I don't know who else to turn to to try and get some help and get better :(

I figure tomorrow will go one of two ways, either neither will care and I will be left like this yet again, or both will want to admit me and I will end up with them debating which ward to send me to :rof:
 
Yes I imagine that is what they might end up doing. I don't know really, but as usual when I don't have proper answers I get very anxious :p I need a plan, or I freak out.

From what I could get out of the tech, if it is indeed a stricture it is a section of the esophagus closest to my stomach, which I suppose would make sense if it's caused by the hiatus hernia and GERD.

I didn't think such "severe" complications of GERD could happen so quickly. I've only had it for about a 20 months or so, and I've been medicated to some degree since month 2.

So yeah if anyone else has had dilation or just has experience with esophageal strictures - let me know!
 
Well had my colonoscopy today after a mri showed a blockage of some sort in the ileum. Took the laxitives all yesterday n starved all day today and right at the top end of my large intestine to the ileum was still full of poop!! I went to the toilet around 25x over 24 hours and the liquid went white as it should!

The specialist managed to take biopsies but was concerned theres too much waste there so depending on results may need another colonoscopy!! Bit gutted but this new consultant seems so determined to get to the problem!!
 
Dave good luck for your biopsy results, I hope they will show enough that you don't have to repeat the colonoscopy!

Cat, how are you getting on in your flare? Any improvement yet? Have you started trying to reintroduce foods yet?

So today was the much anticipated appointment with the dietician, I will try and keep this as short as I can! So, I've managed to gain a pound, which I guess is good, but not really anything significant especially as I had a mug of tea and a snack before I left haha. She is glad the probiotics seem to be helping a little and that I'm getting on better with the Ensure Juce than the Fortijuce. I've got to stay on the B vitamins and thiamine until my intake is up to normal levels because of my risk of refeeding syndrome, they want to minimise the chances as much as they can.
She was a little surprised by my food and symptom diary and how relentless by symptoms are and how little I manage to eat. She said the only major food group left that could be causing me problems is gluten, but as it's my main food source right now she wants to wait to try gluten free.
I asked her about tube feeding and whether it would give me enough energy to function and if it would be appropriate for me. She said it could well help, but she is unable to make that decision herself, it has to be made by a wider team. However, she is going to speak to my GP tomorrow for his input as well as the specialist gastro dieticians at the hospital as she is a member of the community team. Partly to get further advice as my symptoms are so frequent and to partly for advice about what other help might be appropriate, for example tube feeding.
One thing she did say about the tube feeding that I found confusing was that generally NG feeding is only done in hospital because of the risk of displacement into the lungs, however I know of a few people through social media here in the UK who have an NG tube at home, so I'm not sure whether that is something that varies from trust to trust or whether it's more that it's not regularly done. But I guess if she does decide to go down that route I will find out more.
She is also going to specially order in some elemental nutrition supplement drinks for me to try, she said they may be easier for my body to digest and cause fewer symptoms such as nausea. That was actually something she thought of after I had left the appointment so she called me about that. She also said that as they have to be ordered specially they will go to her office not the pharmacy so she will call me when they arrive to arrange collection/delivery.

So, overall, a fairly good appointment, she was as lovely as always and was really nice when I burst into tears (twice!) because of how much this malnutrition is affecting my life. If I'm really honest, I'm a little disappointed that I haven't had a decision about tube feeding made today, but I understand the reasons why if that makes sense? I see her again in four weeks but I think when she calls me about the elemental drink I might ask if there is anything she can update me on. I guess I just feel a little disappointed that I'm still playing the waiting game :(
 
Sarah, it sounds like you've made some progress but how frustrating that you're still "stuck" for the moment. As for gluten, can you have rice? I've found it's very easy on me and can be a good substitute for pasta. Just a thought, maybe you could try cutting down on gluten even if you can't cut it completely out, see if that helps any?

Good luck with the elemental diet! I am definitely here to support you if you need any in that regard. I've been doing nothing but Vivonex for 2 weeks. It's not delicious but it's true that it hasn't caused me any noticeable symptoms and seems to be helping me heal. And it's not bad at all once you get used to it. The food cravings are the worst, once you start to heal then you want to eat pizza and tacos and chips and all the delicious junk food because suddenly you feel okay, and you have to really stop yourself from eating anything! But all in all it's not too bad.

On that note, I did start introducing foods today. So far I've had a small bit of jello and a few potato chips. So far so good for the most part! I did have one urgent watery episode of d, but only one, so that's not bad at all. The jello was so sugary - I'm not used to sugar, there doesn't seem to be any in Vivonex, so it gave me a sugar headache. Also only a few bites made me feel really full! I think my stomach shrank. I was really, really craving potato chips, so I have had 5 of them today. They tasted like salty styrofoam, ha ha. My taste buds and my stomach are not used to food! It's definitely going to be a period of adjustment.

I'm going to try a bit of chicken broth later tonight. Tomorrow I am thinking I'll try a small bit of cooked rice in chicken broth. So far so good, I'm keeping it bland and not eating a lot and still doing my Vivonex drinks as well. I'm going to start tapering down the amount of Vivonex I drink as I increase my food intake.
 
Kids are routinely sent home with NG tubes here! You are taught to check that it is in the right place by checking the stomach pH. My daughter inserted hers every night for months and we had no issues at all. She got used to it and could do it in 15 seconds.

Wish you had made more progress, but some progress is better than none sarahfh!
 
Cat thankfully I'm not doing the full elemental diet, we are just trying the shakes added into my usual intake to see whether I tolerate them better, the dietician hopes because they are already broken down that I won't get the nausea and feeling full and stuff from them that I do with the Ensure Juce.
Well done for managing some food today though! Just take it slowly so you don't overwhelm your system, I hope it sits well and doesn't upset your guts.
If I do try gluten free I will just switch to gluten free products, but yes rice goes pretty well for me, I actually quite often have rice cooked in chicken stock with some carrot :)

Maya, I thought that too! She said the NG is usually only really used in hospital, but I know a few UK girls with one at home. So based on that I'm not too sure what will happen if we do go down the tube route, I don't know whether they will do the NG anyway, which to me makes the most sense, or whether I would have to have a PEG. But to me jumping straight to PEG seems to be a bit extreme/silly when it won't be long term I need tube feeding, or at least that's what I'm hoping!
I'm still worried that it won't happen and I will have to keep on like this for an indefinite amount of time :( I think that's why I still feel a bit disappointed after the appointment. But I feel bad about that, because the dietician is lovely herself and I do feel like she is trying to help.
 
Sarah, yes, I'm definitely taking it very slowly with food! I don't want to end up making myself worse again. That's good that you'll be adding elemental drinks to your usual diet, hopefully that will allow you to gain a bit of weight back. The drinks I do are 250 calories per carton, so it's been pretty easy to track my calorie intake lately. I haven't gained any weight back but I haven't lost any more, either. I do feel like I'm getting stronger and better, slowly but surely. The drinks plus the prednisone are helping. I hope the elemental drinks help you too!

Rice cooked in chicken stock with carrots actually sounds really nice. I've been food-obsessed lately since I've been on the elemental diet, so I'm coming up with all sorts of recipes and ideas and things I want to eat! :p And I bet that would be really easy on my guts. For starters I'm just trying broth tonight, then tomorrow broth and rice, and then if that goes okay I might add cooked carrots too (as long as they're mushy and not crunchy I think that would be okay). Thanks for the idea!
 
my little penguin said:
Strictures in the esophagus can be caused by EOE
Here is a link on more info and how it's treated

http://apfed.org
Click to expand...

I read that it could be, yeah! I know my GI thought that might be it, for a while, so it's not impossible. They'll probably do further testing. I'm glad to have a doctor who considers "uncommon"/relatively unknown things and doesn't dismiss everything out of hand.

The next step will probably be a gastroscopy while under general anesthesia since they were unable to do it with just sedation.

I'm having quite a bit of trouble getting food down. I can swallow, but things don't go all the way down and I regurgitate a lot and often want to drink something hot after eating to really flush everything down. Some foods I have real trouble eating, like rice for example. Gets stuck for a good hour or so.

There was trouble with the barium swallow as well because I just couldn't get it down so it was hard to get the images because the contrast just kind of got stuck for a while.
 
Ok, I need to vent!

My poor son is no closer to being well than he was when we first went into the ED nearly 2 weeks ago, and NOW they are thinking it is possibly GI (like I was initially thinking!!) instead of the stone causing the pain.

During his U/S yesterday I could tell that the stone was still mostly in the calyx/kidney - ie not in the ureter yet, and too little to be blocking flow. But of course the tech couldn't confirm any of that. Today we saw the urologists. They *did* confirm all of that. They feel finding the stone was incidental. They will be referring us to nephrology to follow up, of course, but that tiny little stone, hiding in his kidney, is *NOT* causing LLQ pain, that my son can point to with one finger, that gets worse with jarring movements, etc. I ASKED about that when we were seen in the ED!! The pain did NOT seem to line up with what I associate kidney stone pain to act like. At all. He has no back pain. He lays still just fine. In fact he *prefers* to lie very still. The pain is all in the front, in the belly. It cannot be replicated by any doctor who has tried to rap/knock/pound on his back. He does not report any "traveling" pain down to his groin. It is always in that one spot. They can only illicit worsening pain by pressing down on that one spot. Then he guards, and winces. Who on earth has kidney stone pain like that?? "oh, it's unusual, but sometimes things surprise us!" is what they said in the ED. BULL$%!& NOW they are trying to tell me that he's constipated. He's 10 years old. They showed him the bristol chart and asked him what his poo's normally look like. He said, "type 4" -- they didn't believe him! I am PISSED! I was about to take him back to the ED, when they were kind enough to bring in a general surgeon just to press on his belly. He says there *is* a mass in his LLQ -- but it's likely just poo. The CT from the ED was done w/out contrast, but the LLQ looks "off"....but the surgeon isn't a Radiologist, so they will have one read it again...but it's probably just constipation. NO need to worry they tell me. Just take him home and give him Miralax and ExLax chews (I have a whole page of instructions on how to clean him out over the next 2 days) and he'll probably be all better!!

Then he threw up on the car trip home. I called the nurse line. "oh, no worries!" they tell me!! "It can be a lot of things! Just as long as it doesn't continue, and there is no fever, he's probably FINE! Just treat the constipation."

O M G

Who on earth has ever been constipated when having a 4 on the bristol chart??? Did they think he is lying about that???

IF he *is* constipated, isn't vomiting a BAD sign?? Like, impaction bad?

I am trying to calming breathe, but not doing a very good job of it.

He is playing video games in the other room, curled up in a little ball in the chair. I've checked his temperature, and no fever, at least. But he seems pale.

OH!! AND, he's lost 1.75lbs since the ED visit! He's tiny to begin with! He can't really be losing weight :(

Thanks if you made it this far
 
Thanks Mis Leopard

And I'm sorry to snort, but.....Bwhahahaha!! --- all of these specialists are AT Children's Hospital, we were initially seen at their ED, and were on the main campus today!! He saw a FELLOW in urology, and a SENIOR general surgeon came in and felt his belly before I was willing to bring him home. At least I know it will be one of their radiologist's re-reading the CT scan, I guess? (but probably not until tomorrow morning, as it's after 6pm here, now)

So, yeah.
 
It is actually quite common for a kid to have diarrhea when they are constipated. I know it sounds kind of confusing, but what happens is that a plug of hard stool gets stuck in the colon. That causes the "mass" they feel. The soft stool leaks around the hard stool and the kiddo has what appears to be diarrhea.

The treatment you have been given is usually what is done. If it does not clean him out, then they may admit him for a clean out in the hospital.

Constipation is VERY common in kids and can cause surprisingly severe pain. My daughter has Crohn's and has had issues with pretty bad constipation all her life. Her GI has actually been able to feel a similar mass.

An x-ray would be a quick way to tell if he is really constipated and how backed up he is.
 
Oh and nausea and vomiting and even weight loss can be common with severe constipation. The constipation causes pain and nausea, so the child eats less and starts to lose weight.

There are many many many many posts about this on the Parent's forum!
 
Thanks Maya142 --- but on the Bristol chart, a "4" isn't diarrhea at all....it's more like...well, like a "soft banana" I guess. Which is why I'm so confused!
 
Same deal -- soft stuff can go around the hard plug of stool. Ask for an x-ray, that should give you more info.

Our GI says that stool in the abdomen is a very distinct feeling -- she can tell easily just by palpating if the kid is really constipated. To have a lump in the abdomen means there is a significant amount of stool there.
 
Thank you!!!

Of course that just makes me *more* confused :/ isn't a KUB an xray? They did that before/with the CT scan, and there is no mention of stool (or the GI tract at all) but today they just said the GI tract had an "odd" appearance and that there was a "mass" in the LLQ.

ARG I hate vague Drs -- I realize some of it CYA.

But thank you thank you, I am starting to breathe a little slower!
 
Great big hugs
Btdt every er visit for any kid with belly pain is ALWAYS CONSTIPATION
They take an X-ray say wow there is poop in there even if it's not much
Then say constipation since they have no idea

Ds has crohns and is constipated
Suggestions
Obstruction should have shown on CT
But if he is passing gas then air can get through which is a good sign
I know it's a pain but clean out can help eliminate the it's constipation thing and may help
Ds feels great after clean out
Pcp can order fecal cal and inflammatory bloodwork if clean out doesn't fix it
Warm baths /hot packs can help
Have him rate pain daily and keep track of food calories daily
We had to prove Ds was losing weight despite being fed more than enough
Was he seen at a kiddie university hospital ?
Sometimes that helps
You may want to post in the parents sections
Lots of undx kids there - even some with other things that started out as possible Ibd

Fwiw you can still go everyday and be constipated the soft stuff leaks around the "mass of poop"

Ds ended up with rectal prolapse which finally got things taken more seriously vs he is just constipated

Miralax /exlax is what we use for Ds scope preps and is pretty mild for a kiddo

Hope you get answers soon

What does his Ped say ???


Tagging
Clash
Maya142
Tesscom
Farmwife
Mehita
 
It is really shockingly painful and miserable. There have been times where I was sure my kiddo had some awful Crohn's complication (fistula/abscess) and it turned out to be just constipation.

Not sure about a KUB. If it's an x-ray usually they would note on the report if there is a lot of stool. We've even seen it written on a CT scan report! But I guess if they were looking for something else, they may not have mentioned it?

Have you seen the actual report? It's possible it did say something and that is why doctors are saying it's constipation...

If his pain does not go away with laxatives, then I'd definitely let them know ASAP.
 
I don't know if it will help, but in my profile, under photos, I had a pic of my son's x-ray from when he was very, very hospitalized consitpated.
 
Thank you! So far all I have are the written reports, but it's likely one specialist or another will need the images and a I may see them then.
 
Wildmtnhoney said:
Thank you!!!

Of course that just makes me *more* confused :/ isn't a KUB an xray? They did that before/with the CT scan, and there is no mention of stool (or the GI tract at all) but today they just said the GI tract had an "odd" appearance and that there was a "mass" in the LLQ.

ARG I hate vague Drs -- I realize some of it CYA.

But thank you thank you, I am starting to breathe a little slower!
Click to expand...

KUB is an x-ray of the kidneys, ureters, and bladder. You can see any bowel obstructions from this, as well, since it includes the full abdomen.

https://en.wikipedia.org/wiki/Kidneys,_ureters,_and_bladder_x-ray
 
Cat I'm glad you are starting to feel a bit stronger and things are settling :) I find well cooked carrot and potato (normal and sweet) are the most gentle on my digestive system. Hope you're feeling okay today after trying the bits of food yesterday.

Wildmtnhoney I'm sorry I have no advice, but I really hope you can get some answers for your son soon, being a parent to a sick child must be so difficult and I have so much respect for all you parents.

After sleeping on yesterday's appointment I'm still feeling really mixed about it, I still feel like I'm in limbo with no real way forward, I'm just really hoping that the dietician's chat with my GP and the specialist dietician goes well. Feeling pretty weak and drained today after walking to my appointment yesterday, my car was in for service so I had to walk. It's just more than I can physically manage right now. Which I find insane, it's a ten minute walk each way, and that's at a slow pace! I'm so over this. I just want to feel better and have the energy to have a life. I'm 25 and wasting my life because I'm too exhausted to do anything but lie on my bed watching Netflix/DVDs :(
 
I cannot thank all of you mom's who have BTDT enough!! My son had one "mushy" bowel movement last night (we started the miralax/exlax right after dinner just to get the ball rolling) and then slept through the night (or at least didn't wake me!). Here's hoping this all "works it's way out!" ha!

-- Sarah, I'm so sorry you are feeling so unwell! I hope the formula offers at least some relief, and soon, but more than that I do hope they come quick decision about NG feeds. Being so underweight it's no surprise to me that you have little to no energy!
 
I'm still doing good so far on the food! So today's plan is to add rice and maybe have one less elemental drink than I've been having (I've been doing 6 per day, so 5 of them today plus some food should hopefully be okay).

Sarah, I really hope you get some progress with the GP and dietician today. Did they already send you the elemental drinks? At the very least you could get started on trying those. I will say, when I first started the elemental drinks, they made me feel super full! But that feeling went away the longer that I've been on the drinks, so now that I've been doing them for a couple weeks, they no longer make me feel so full. So don't get discouraged if they make you feel like that, just keep up with it as best as you can and the feeling should hopefully start to go away after a bit.
 
Cat-a-tonic
We use my fitness pal for Ds
Put in your shakes plus your foods
This makes sure you hit your calorie mark
Especially if you lost a lots of weight
Typically Ds doesn't gain on just een
But once food is added with en then the lbs start adding up

Also realize you need nutrition and the simple foods are easy to digest but not necessarily nutritionally sounds
We were told three days of rice/broth prior to moving on to well cooked things like potatos ( mashed ) then boiled chicken. Etc...

Tagging Tesscom
Sick children's had a whole protocol about how to re introduce food
 
Yes, that was my general plan for food, very bland and mild at first and then slowly starting to add in things like chicken, canned tuna, eggs, etc. One thing at a time. I'm having broth with a few pieces of GF pasta (rice and potato starch, I couldn't find just rice pasta). This will be the most substantial thing that I've eaten so far! And I'm really craving tuna salad now, I got some cans of the nice albacore tuna and I know mayo is FODMAP safe. So I might be tempted to try a bit of tuna salad in the next couple days.
 
MLP, yes, I know, and sometimes my body just cannot tolerate too much fat, so I'm going to be really careful about it and just have a little bit to start with. It sounds so yummy though. :p Honestly I'm tempted to try it tonight! I have some rice crackers, I could just have a few crackers with tuna salad. That sounds wonderful although I'm not sure my guts would love it.

I'm thinking about picking up a rotisserie chicken at some point soon, too. I can just have a few bites of the chicken to see how that does, and my hubby can eat the rest. I am still compiling a grocery list that works with low-FODMAP and is flare-friendly too. My uncle apparently told my dad about some gluten-free dairy-free pizza that he likes, but I'm not ready for pizza just yet! (Although that might not stop me from purchasing it.)

The rice pasta from earlier sat really well in my belly, fortunately. So I know I can safely do that pasta and broth again. There's one safe meal! Hoping to add more to my repertoire with a bit more protein too. I might try a scrambled egg tomorrow.
 
Ds loves scrambled eggs and baked potato -easy on the gut

Rotisserie chicken is very fatty because of how it's cooked
( tried that first for Ds and he got really ill )
Our Gi recommends plain boiled chicken breasts so the fat sits on top water
Ds can t tolerate chicken at all but we still tried boiled chicken


Gluten free dairy free cheese pizza
Daiya makes pizza yogurt cheese etc...

Haven't tried the pizza yet for Ds

We use chebe pizza crust
Add sauce and cooked spiralized zucchini baked potato tomatos and green onions (tops )on top
Brown in the oven
The baked potato gives it a cheese like taste
Either way
Healthy and good taste
Season with chili powder paprika salt pepper and onion powder


Glad the rice pasta is sitting well
 
my little penguin said:
Ds loves scrambled eggs and baked potato -easy on the gut

Rotisserie chicken is very fatty because of how it's cooked
( tried that first for Ds and he got really ill )
Our Gi recommends plain boiled chicken breasts so the fat sits on top water
Ds can t tolerate chicken at all but we still tried boiled chicken


Gluten free dairy free cheese pizza
Daiya makes pizza yogurt cheese etc...

Haven't tried the pizza yet for Ds

We use chebe pizza crust
Add sauce and cooked spiralized zucchini baked potato tomatos and green onions (tops )on top
Brown in the oven
The baked potato gives it a cheese like taste
Either way
Healthy and good taste
Season with chili powder paprika salt pepper and onion powder


Glad the rice pasta is sitting well
Click to expand...
I love Days Swiss Cheese
 
My biopsy results came back from my latest gastroscopy - chronic gastritis. No celiac or Crohn's. I think the GERD damage had healed too. But now I have iron deficiency anaemia!! Seriously think think something like Crohn's is going on in there!
 
Lorikeetie said:
My biopsy results came back from my latest gastroscopy - chronic gastritis. No celiac or Crohn's. I think the GERD damage had healed too. But now I have iron deficiency anaemia!! Seriously think think something like Crohn's is going on in there!
Click to expand...
Keep pushing if you think there is more going on.
 
Thanks Ron I will if something changes! I have had pretty much every test - multiple times. It may be unlikely to "find" it now I have started Humira for my arthritis. So other than having my "I was right moment" I am getting the same treatment anyway.
 
Cat they've not delivered them yet no, they have to order them specially into the dietician's office then arrange to get them to me, so it will take at least a week. It's not a product they have in local stock so she has to contact the company directly.
I've had a little look around and I think I know which drink it is, it's not full elemental but it's partially broken down already and usually used for tube fed patients. Part of me hopes if I tolerate it well they will be more likely to consider the tube feeding too, but I think that might just be wishful thinking haha.

I am still really unsure whether they will actually go ahead with the tube feeding or not, my inner pessimist says they won't do it because I'm not ill enough other than the malnutrition, but the optimist in me says of course they will because I'm so underweight and my intake is so low because of my symptoms. I can't stop overthinking and my next appointment just seems so far away, it just feels so long to wait. When it comes to this sort of thing the inner pessimist seems to speak louder sadly! I have managed quite well food wise the last couple of days though, which is good, but I hate that I know it won't last. I seem to get 4 days maximum of managing well with food then the nausea hits like a ton of bricks and I have a few days of managing nothing but a couple of biscuits and a Fortijuce/Ensure Juce. Every time I have a good few days I hope that it's things finally getting better though, I just can't help myself.
 
I just gotta celebrate. I have had one bowel movement today... and it was formed! It was not watery, it was not mush, I wouldn't even call it diarrhea. Eating food is going better than I could have ever expected! I had tuna salad yesterday, which was risky because it was the first real protein & fat that I've had. It was delicious and I felt like I might have eaten a bit too much, like maybe I overdid it. But I feel okay today and my guts are apparently happy! Woo hoo! I know you guys will get it and know how happy I am about this. I'm so encouraged! I feel like I'm finally really beating this stupid flare and actually getting better. I'm so happy!
 
Cat hoping your flare is ending and your food reintroduction goes well.

I have started the low residue diet ready for gastroscopy and colonoscopy on Tuesday. Not looking forward to the moviprep on Monday night though [emoji15]. After waiting so long Thursday night I suddenly went oh its actually this sat I need to start the prep lol
 
Shell, good luck with the prep! It's never fun but hopefully you can get some worthwhile answers out of this. Please keep us posted on how everything goes!

If it makes you feel any better, I actually didn't mind doing prep at all the other week (when I was in the hospital). They gave me Golightly, which tasted like seawater, but it honestly gave me less cramping and less d than anything I had eaten that week. :p It was gentler on my insides than food was at that point, hah.

The time before that, I treated prep as though it was a spa day. I got some nice face masques and lotions, I had some fancy bubble bath and fancy candles (okay, so they were from the dollar store, but they were still fancy), I had a relaxing playlist on repeat on an ipod dock in my bathroom. I wore my fuzziest slippers and pampered myself in between bathroom trips. That was really nice, and next time I do prep (presuming I'm at home and not in the hospital), I would definitely treat it like a spa day again. Anyway, good luck!
 
ShellK, good luck with the prep and gastroscopy and colonoscopy :) I had moviprep for mine too, a couple of things I found really helpful were making it up early and putting it in the fridge for a few hours, add some ice and drink it through a straw. It has a lemon flavouring in it, but it's really salty, so the straw works better. It also helps to have a glass of juice or something like that to use, take as many gulps of moviprep as you can manage then a mouthful of juice, it really helps :) The actual effects of the prep I found to not be too bad at all, just seriously don't go too far from the bathroom. Oh and those flushable wet wipes will help a LOT!

I also set myself up with my iPad on a little stool so I could watch Netflix, some water, sweatpants I could pull down in a rush and my microwavable heat pack in case of cramps. I had evening prep so also had headphones so I didn't wake my mum up so much.
 
ShellK said:
Cat hoping your flare is ending and your food reintroduction goes well.

I have started the low residue diet ready for gastroscopy and colonoscopy on Tuesday. Not looking forward to the moviprep on Monday night though [emoji15]. After waiting so long Thursday night I suddenly went oh its actually this sat I need to start the prep lol
Click to expand...
Good luck
 
I wondered if the low residue diet would be kinder on my guts but still had bouts of D today so I'm guessing not! Cat I would love to have a spa day, it's a great idea, but I'm working all day and first dose is 6pm. Usually I don't work Monday's but because my boss has had a colonoscopy and went back to work the next day I had to change my work days so I can have the day off after even though my instructions say not to work the next day (and I checked with the hospital too that that was the case, they will give me a medical cert). Oh well I have sooo much work to do anyway so I guess only losing one day to this is better but it makes me feel pressured.
 
ShellK said:
Cat hoping your flare is ending and your food reintroduction goes well.

I have started the low residue diet ready for gastroscopy and colonoscopy on Tuesday. Not looking forward to the moviprep on Monday night though [emoji15]. After waiting so long Thursday night I suddenly went oh its actually this sat I need to start the prep lol
Click to expand...

MoviPrep is what I used for my colonoscopy. I thought it tasted awful, but the only things that made it bearable was mixing it in advance and chilling it in the fridge so it's really cold. I hated drinking another 8 ounces every 15 minutes and was so glad when those 2 canisters were empty. I made sure I had something to drink after the 8 ounces that tasted better and would get that nasty flavor out of my mouth. I drank lemon-lime Gatorade which helped (and had the added benefit of keeping me from getting dehydrated). I also used a straw so I could keep it from hitting my tongue, but it didn't really work because the straw wasn't long enough. It did the job, though, and I was thoroughly cleaned out. I started around 5pm and was running clear around 11pm.
 
Quick question: is it ok to make the prep up in the morning before I go to work? I'm likely to only get home just in time to start drinking it.
 
Hi everyone! Thank you for the support last week, and the week before. Saw the GI for my 6 monthly appointment. A very informative session, with me stating that I was still undiagnosed! Reply "previous surgeries, bowel resections and adhesions!" I explained, surgeon stated "no adhesions were found in the abdomen! Next appointment in 3 months, with possible follow up in one month if WBC is high, and the calprotectin. I asked if we could do the camera test, he stated, yes, if the results come back high! I feel as though we are getting somewhere. In the meantime I also changed GP's! Well, a lot of changes for me recently. Many thanks for everyones support.
 
Quick question: is it ok to make the prep up in the morning before I go to work? I'm likely to only get home just in time to start drinking it. "Yes, should be okay, put in the fridge, drink cold, much easier
 
lacey2 said:
Hi everyone! Thank you for the support last week, and the week before. Saw the GI for my 6 monthly appointment. A very informative session, with me stating that I was still undiagnosed! Reply "previous surgeries, bowel resections and adhesions!" I explained, surgeon stated "no adhesions were found in the abdomen! Next appointment in 3 months, with possible follow up in one month if WBC is high, and the calprotectin. I asked if we could do the camera test, he stated, yes, if the results come back high! I feel as though we are getting somewhere. In the meantime I also changed GP's! Well, a lot of changes for me recently. Many thanks for everyones support.
Click to expand...
Glad for you.
 
Hi, is there any feedback on how much time the GP's spend with patients, and how much time the GI's spend? Here in WA, GP 10-15 min, with no hospital visits, GI's allow, 20min. Would this be considered normal times? Interesting to get feedback.
 
I'm in the US, and I think technically GI appointments are allotted to 15 minutes, but my GI always spends as much time as I need. If I'm really struggling and/or have a lot of questions, he'll take as much time as is necessary to answer all my questions. I think he does that with all his patients - he's often late to appointments and I'm sure it's because he's helping patients who needed extra help that day. So I don't really mind so much that he's always late because of that. He's quite thorough and he doesn't want me to leave feeling like I didn't get my questions answered to the best of his ability.

Shell, yes, it should be fine to mix and chill the prep ahead of time.
 
Wow, we spend 45 minutes to an hour every time with our GI! She is often running late though - I guess because she spends so much time with patients.
 
And I vomited it up....hoping it stayed there long enough. I'll call them first thing in the morning and have the second one ready to go. Anyone have this happen?
 

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