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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?

I vomited about the last quarter of mine so I know it's slightly different. Depending on how much you managed to drink and how long you kept it down you might be okay. If you are feeling up to it I would try starting the second one earlier and drink it slower, it will make it easier to get down.

With my prep it was making me feel so nauseous and ill that I didn't manage to drink it in the time scale, I had ended up finishing drinking it about two hours later that it advised, it meant I was up all night using the bathroom, but it stopped by the time I went for my scope. The only reason it seems they say to finish by a certain time at night is so you can go to sleep for a bit.

Good luck! Remember you can have clear fluids so try and have a drink of some water or juice to replace whatever you might have lost from being sick too.
 
Also, very jealous of how long some of you get for appointment times. Here in the UK a GP appointment is limited to 10 minutes including write up time, an initial consultant appointment is something like 20 minutes and a follow up is 15 minutes. Granted my consultant is always running late and some of my appointments have gone over but some have only been a few minutes as there was nothing new to say.

Maya, with her gastroparesis does your daughter ever get two different kinds of nausea? Most of the time my nausea is the kind where you know you're not going to actually be sick, but you feel so sick you don't want to move or drink and keep a bowl close by just in case. But these last few days I've had a different nausea, basically I feel sick but not incapacitated, and I feel like I could easily be sick and like I could probably feel better if I was sick. And that's not scaring me (I have emetaphobia so the first type of nausea usually also includes a lot of anxiety for me) which is really odd. Like I almost feel like I could go and be sick then carry on with my day. It's really odd. But so far no vomiting! Is it even possible to have gastroparesis without vomiting?
 
Hi guys!
Unfortunately I have had to come across this forum for obvious reasons but THANKFULLY it has been of great knowledge and information :) I actually posted the post (below) in the your story section instead of this one (my mistake) so thought I would post it again here where it belongs and hopefully join in on some discussions.


Im a 27 yr old active male - gym and soccer 5x per week - non smoker/non drinker..approx 6 weeks ago began having heavy bloating and the feeling of constipation (thought my running was not working) but noticed of a morning would have a flat stomach and by night would be bloated so ruled out weight gain. After about 2 weeks I had severe diarhea on one particular day ( 8 times) and this followed for the next 3-4 weeks - anywhere between 3-6 x per day (mostly water). In this 3 week period my gp advised potential gastro (few days off work) - a few days later commenced tianazol to see if this would kill potential infection - no result/changes. From here I was then prescribed flagyl to kill potential infection - again no result/changes, although I must say diarhea slowed down to about 3-4 times a day max.

From here I did a basic blood tests. Results showed lowish iron levels and a slightly raised CRP serum - report stated nothing to much out of the ordinary only slightly low/high.

After doing a colonoscopy i was advised I had slight inflamation in my terminal ileum and a few small ulcers. I also had a few small sized polyps in some random spots and these were removed during the procedure. The dr advised me that I likely have Crohn's but further testing will need to be conducted which includes results from biopsy, mri and further blood testing - all being conducted in the next 10 days or so.

My question is, what else could this be if not Crohn's? Is it Crohn's? Is it a lingering infection?From what ive read/spoken to people with Crohn's - they way that my symptoms sound a bit like Crohn's, but im missing alot of other assocated symptoms. I have had a lot of random temperatures (37.8ish), lost approx 4-5kg, had NO blood in stool (forgot to mention earlier completed stool test showed nothing).

Since the coloniscopy I have begun taking entocort 9mg a day and
My diarhea has stoped and my stool is almost back to normal (has only been 5 days since begun medication) so I am feeling much better.
Minor weird stomach aches but nothing to bad.

Thanks for reading and your responses - much appreciated.
 
So I'm in hospital already as I vomited up the prep last night. Going to be a long day as now I'm last on the list. They are going to give me something to stop the vomiting and I have to drink 2 litres today [emoji29]
 
So I'm in hospital already as I vomited up the prep last night. Going to be a long day as now I'm last on the list. They are going to give me something to stop the vomiting and I have to drink 2 litres today [emoji29]
Hope you feel better soon
 
The220 welcome to the club! The good news is it sounds like you are well on your way to getting a diagnosis, the terminal ileum is the most common place for Crohn's to be found. I hope you get news soon about biopsies and the MRI etc.

ShellK I'm sorry you've had such a rough time with it! How did you get on in the end?
 
Thanks for all the support! And advice. In the end I called the hospital early in the morning and they said to come in. I was a little stressed by it all.

That prep is awful! Got to sit in a comfy chair at the hospital and drink another 2 litres oh my gosh!! Thankfully because I was there they put in a drip and gave me fluids and anti sickness meds, in the end I had 2 different types but at least it stopped the nausea. Not ideal to be in there with a shared bathroom and a drip to take with you as you dash multiple times for the toilet! Nurses were really awesome to me through it all. Eventually I had finished all the prep and got a bed and snoozed a little between loo visits. And then waited....I was last for the day but at least I got done!
Dr came and said bowel looked ok but they have biopsied, stomach had polyps so they are also being biopsied. Back to GP in a few weeks for results.
 
Hi I'm not sure if I need to be here or not but I ll tell you my story .8 weeks ago I started bleeding with every BM and had classic internal piles symptoms. I went to the drs after 2 weeks and was examined and was given suppositories I also had mucus without a stool which seemed to get worse when I stressed .I went back to the drs again and was examined by a different Dr and sent away with more suppositories. After 6 weeks I had had enough and a different Dr agreed to doing a stool sample . I ve had the results and the drs said the calprotectin levels are high and they suspect ibd so I have to go for a colonoscopy. I'm so worried .
 
Hi I'm not sure if I need to be here or not but I ll tell you my story .8 weeks ago I started bleeding with every BM and had classic internal piles symptoms. I went to the drs after 2 weeks and was examined and was given suppositories I also had mucus without a stool which seemed to get worse when I stressed .I went back to the drs again and was examined by a different Dr and sent away with more suppositories. After 6 weeks I had had enough and a different Dr agreed to doing a stool sample . I ve had the results and the drs said the calprotectin levels are high and they suspect ibd so I have to go for a colonoscopy. I'm so worried .

You have the support of everyone here. Let us know how it turns out. They will probably give you preliminary results. They will also take biopsies which will take several days. You will get an appointment where they will give full results.
 
You have the support of everyone here. Let us know how it turns out. They will probably give you preliminary results. They will also take biopsies which will take several days. You will get an appointment where they will give full results.

You basically took the words right out of my mouth. Hope it goes well!!

I went with Doug to his GI appointment yesterday, and though I don't want by any means to "compete" with Doug, I realized I have as many GI problems, or actually more at present, than he does. And he is dealing with a flare right now! Of course, he is on heavy duty crohn's meds, and I'm not. Still, it kind of irks me, same GI doc and I feel a little unheard. Sorry for the gripe.
 
You basically took the words right out of my mouth. Hope it goes well!!

I went with Doug to his GI appointment yesterday, and though I don't want by any means to "compete" with Doug, I realized I have as many GI problems, or actually more at present, than he does. And he is dealing with a flare right now! Of course, he is on heavy duty crohn's meds, and I'm not. Still, it kind of irks me, same GI doc and I feel a little unheard. Sorry for the gripe.

No problem, Sandy.
 
hello there im 24 years old male and ive been having so many problems that seem to be getting worse and i get older and older im currently on zofran chronic nausea dexilant for heartburn i have barrets esophogus disease. Ive had a colonoscopy and endoscopy but both to no outcome as the inflammation they found in my large intestine and stomach had "no cause for concern" ive been having chronic nausea and stomach cramps and diarrhea for as long as i can remember basically since i was still in high school. but this is were the real problem starts ive asked repeatedly for a pill cam endoscopy but the drs refuse to do it cause of lack of evidence to and underlying condition my blood work comes back pretty normal and i cant seem to stress how awful i feel on a daily basis going to work is a struggle and im just so fustrated any advice would be very appreciative
 
hello there im 24 years old male and ive been having so many problems that seem to be getting worse and i get older and older im currently on zofran chronic nausea dexilant for heartburn i have barrets esophogus disease. Ive had a colonoscopy and endoscopy but both to no outcome as the inflammation they found in my large intestine and stomach had "no cause for concern" ive been having chronic nausea and stomach cramps and diarrhea for as long as i can remember basically since i was still in high school. but this is were the real problem starts ive asked repeatedly for a pill cam endoscopy but the drs refuse to do it cause of lack of evidence to and underlying condition my blood work comes back pretty normal and i cant seem to stress how awful i feel on a daily basis going to work is a struggle and im just so fustrated any advice would be very appreciative
Is there another practice you can go to where they might do it for you?
 
I posted this on the tests section but figured I'd add it here as well to see if anyone has ideas.

I've had regular cases of diarrhea off and on for the past two years. Starting in April I began having sharp, shooting pains in my mid abdomen on the left side. I went to a clinic and the doctor said it was H Pylori and gave my a series of antibiotics and a PPI to take for 2 weeks. During this time my symptoms got worse, and ever since finishing the antibiotics I have had a constant, dull ache with occasional sharp jabbing pains in the area below my sternum, and going down along my right rib cage and abdomen to my waist.

I have also had yellow, mucus stools since anti-biotic treatment. I was on a PPI for most of August, but after an endoscopy ruled out ulcers or gastritis I have since come off them.

So far I have had blood tests, urine tests, abdominal ultrasound, CT Scan, stool test, and endoscopy with each one coming back negative. The only thing that showed anything was the CT scan, which said there was inflammation in my ileum. However, because of where I was experiencing most of my pain (below my sternum), the doctor said that it wasn't relevant to my condition. Speaking to a couple of other doctors though they said it might be referred pain from somewhere else.

My main symptom at the moment is upper abdominal pain, which is constant 24/7. I also experience regular bloating. Current medications are amitriptyline and gabapentin.

**EDIT** forgot to mention that I've lost almost 30 pounds in about 2.5 months, just can't seem to regain weight no matter how much I try to eat.
 
I posted this on the tests section but figured I'd add it here as well to see if anyone has ideas.

I've had regular cases of diarrhea off and on for the past two years. Starting in April I began having sharp, shooting pains in my mid abdomen on the left side. I went to a clinic and the doctor said it was H Pylori and gave my a series of antibiotics and a PPI to take for 2 weeks. During this time my symptoms got worse, and ever since finishing the antibiotics I have had a constant, dull ache with occasional sharp jabbing pains in the area below my sternum, and going down along my right rib cage and abdomen to my waist.

I have also had yellow, mucus stools since anti-biotic treatment. I was on a PPI for most of August, but after an endoscopy ruled out ulcers or gastritis I have since come off them.

So far I have had blood tests, urine tests, abdominal ultrasound, CT Scan, stool test, and endoscopy with each one coming back negative. The only thing that showed anything was the CT scan, which said there was inflammation in my ileum. However, because of where I was experiencing most of my pain (below my sternum), the doctor said that it wasn't relevant to my condition. Speaking to a couple of other doctors though they said it might be referred pain from somewhere else.

My main symptom at the moment is upper abdominal pain, which is constant 24/7. I also experience regular bloating. Current medications are amitriptyline and gabapentin.

**EDIT** forgot to mention that I've lost almost 30 pounds in about 2.5 months, just can't seem to regain weight no matter how much I try to eat.

What are they doing for the inflammation in the ileum?
 
What are they doing for the inflammation in the ileum?

So far nothing. My GI doesn't think it's relevant to my symptoms. My next appointment with her isn't until November, so I'm going to have to push for something then. She did say though that the next step will be a colonoscopy (just had my upper scope done).
 
So far nothing. My GI doesn't think it's relevant to my symptoms. My next appointment with her isn't until November, so I'm going to have to push for something then. She did say though that the next step will be a colonoscopy (just had my upper scope done).
Don't let it go untreated.
 
Sooooo I got my barium swallow results today.

No stricture! Surprisingly. Idk what the tech and I saw but it wasn't that. Just confirmation that I have dysmotility and they don't know why. And they seem to think it's severe enough, because I'm going to see a specialist in GI motility.

The rheumatologist had looked at my results but was unsure so those are also being sent to some hotshot specialist. But they don't think it's anything autoimmune right now, considering my other test results. There are no other indicators. But they want to be sure I guess, and before they are sure it's going to be something I'm stressed about.

Do any of you know anything or have resources re: GI motility disorders? I know very little about them and what kinds there are/what causes it and research always calms me.

Also am being sent to a specialist dietician for a possible liquid diet and/or liquid supplements so I don't have to rely entirely on solids since they seem to make my symptoms worse, and I do have trouble swallowing.

I hope the rest of you are doing well, from reading through the thread it seems like a few of you are closer and closer to answers, and I hope you get them!
 
Hi guys!
Unfortunately I have had to come across this forum for obvious reasons but THANKFULLY it has been of great knowledge and information :) I actually posted the post (below) in the your story section instead of this one (my mistake) so thought I would post it again here where it belongs and hopefully join in on some discussions.


Im a 27 yr old active male - gym and soccer 5x per week - non smoker/non drinker..approx 6 weeks ago began having heavy bloating and the feeling of constipation (thought my running was not working) but noticed of a morning would have a flat stomach and by night would be bloated so ruled out weight gain. After about 2 weeks I had severe diarhea on one particular day ( 8 times) and this followed for the next 3-4 weeks - anywhere between 3-6 x per day (mostly water). In this 3 week period my gp advised potential gastro (few days off work) - a few days later commenced tianazol to see if this would kill potential infection - no result/changes. From here I was then prescribed flagyl to kill potential infection - again no result/changes, although I must say diarhea slowed down to about 3-4 times a day max.

From here I did a basic blood tests. Results showed lowish iron levels and a slightly raised CRP serum - report stated nothing to much out of the ordinary only slightly low/high.

After doing a colonoscopy i was advised I had slight inflamation in my terminal ileum and a few small ulcers. I also had a few small sized polyps in some random spots and these were removed during the procedure. The dr advised me that I likely have Crohn's but further testing will need to be conducted which includes results from biopsy, mri and further blood testing - all being conducted in the next 10 days or so.

My question is, what else could this be if not Crohn's? Is it Crohn's? Is it a lingering infection?From what ive read/spoken to people with Crohn's - they way that my symptoms sound a bit like Crohn's, but im missing alot of other assocated symptoms. I have had a lot of random temperatures (37.8ish), lost approx 4-5kg, had NO blood in stool (forgot to mention earlier completed stool test showed nothing).

Since the coloniscopy I have begun taking entocort 9mg a day and
My diarhea has stoped and my stool is almost back to normal (has only been 5 days since begun medication) so I am feeling much better.
Minor weird stomach aches but nothing to bad.

Thanks for reading and your responses - much appreciated.



So today was the day to get results - and to say I have mixed emotions on the result is an understatement!

So the results were inconclusive from the biopsy - He cannot not say weather I have Crohn's but at the moment we are working on the fact thay I do and that it is highly likely I do...

The mri showed no blockages, no inflamation anywhere except for my ileum which we knew about, and that had 8cm of inflamation.
On another note after 2 weeks of entocort my DR was not happy at my results so far - I had lost 3-4kg over a period of 3 weeks, 2 of that on entocort. Over 8 weeks I have lost 10kg...

He has now put me on prednisone - 40mg for 1 week, 30 x 1 week, 20 x 4 weeks then taper off 5mg per week..
I have also been refered to a dietitian to get my weight back!

So im happy I technically wasnt diagnosed with Crohn's, unhappy we are still not sure, happy with mri results and unhappy about starting prednisone (from what ive read).

I am having another review in 2 weeks. He did say if I have no improvement on the new meds we may need to look into some rare infections as I have been having temperatures on and off last few weeks. He said a diagnosis could take a while dependent on body reaction, if/any flare ups, future coloniscopys etc...

Thought I would update and keep those interested in the loop. This forum has been good for me just to get a feel of everyones symptoms, reactions, stories etc. Hope mine can contribute as well!
 
So today was the day to get results - and to say I have mixed emotions on the result is an understatement!

So the results were inconclusive from the biopsy - He cannot not say weather I have Crohn's but at the moment we are working on the fact thay I do and that it is highly likely I do...

The mri showed no blockages, no inflamation anywhere except for my ileum which we knew about, and that had 8cm of inflamation.
On another note after 2 weeks of entocort my DR was not happy at my results so far - I had lost 3-4kg over a period of 3 weeks, 2 of that on entocort. Over 8 weeks I have lost 10kg...

He has now put me on prednisone - 40mg for 1 week, 30 x 1 week, 20 x 4 weeks then taper off 5mg per week..
I have also been refered to a dietitian to get my weight back!

So im happy I technically wasnt diagnosed with Crohn's, unhappy we are still not sure, happy with mri results and unhappy about starting prednisone (from what ive read).

I am having another review in 2 weeks. He did say if I have no improvement on the new meds we may need to look into some rare infections as I have been having temperatures on and off last few weeks. He said a diagnosis could take a while dependent on body reaction, if/any flare ups, future coloniscopys etc...

Thought I would update and keep those interested in the loop. This forum has been good for me just to get a feel of everyones symptoms, reactions, stories etc. Hope mine can contribute as well!

Hope you are well soon and they can get a diagnosis.
 
Well, I got the new drinks to try, they are vanilla flavour Peptamen. On the good side, they settled great and no nausea or full feeling. On the bad side, they brought me out in a rash. So I guess it's time to try a different one haha! Sticking to the Ensure Juce for now then will discuss other options at my next appointment with the dietician.

After a stressful weekend last weekend my guts are acting up again and I have the biggest fissure I've had yet, so that's annoying!

How is everyone else?
 
Well, I got the new drinks to try, they are vanilla flavour Peptamen. On the good side, they settled great and no nausea or full feeling. On the bad side, they brought me out in a rash. So I guess it's time to try a different one haha! Sticking to the Ensure Juce for now then will discuss other options at my next appointment with the dietician.

After a stressful weekend last weekend my guts are acting up again and I have the biggest fissure I've had yet, so that's annoying!

How is everyone else?
I am sorry for the trouble you are having.
 
Not having the best day/weekend myself. Have a new UTI, more nausea, and new arthritis recently in both knees. I used to say that at least one place I didn't have arthritis was my knees (have it everywhere else :(). Also, been having two toned poop, one side is normal color, the other is clay or almost white. I would have thought nausea from UTI if it weren't for changed bowel. I see another doc appointment in near future. It seems I can't go a week without something changing for worse or showing up, even when improving elsewhere Not a happy camper, except weather is beautiful.
 
Not having the best day/weekend myself. Have a new UTI, more nausea, and new arthritis recently in both knees. I used to say that at least one place I didn't have arthritis was my knees (have it everywhere else :(). Also, been having two toned poop, one side is normal color, the other is clay or almost white. I would have thought nausea from UTI if it weren't for changed bowel. I see another doc appointment in near future. It seems I can't go a week without something changing for worse or showing up, even when improving elsewhere Not a happy camper, except weather is beautiful.

Sorry to hear that your symptoms are getting worse. You might want to consider having your gallbladder checked out. When the doctors thought I had cholecystitis, they kept asking me if I had pale-colored poops because that could signify that your gallbladder is not working. Nausea is also a symptom of gallbladder disease, especially if you have it after meals.

http://www.healthline.com/health/acute-cholecystitis#Symptoms3
 
Thanks Ron and MissLeopard. I know it's not gallbladder disease because I don't have a gallbladder. (Had very diseased gallbladder taken out years ago.) That said, it's harder to process some foods (especially fatty foods) without one, so maybe that is it. Spent the morning at the urgent care clinic, the doc is pretty sure I have a kidney infection spread from my UTI. Tender in kidney areas and have blood in urine now (not uncommon with any UTI or kidney infection). He also wants me to see a urologist because I've had so many UTIs. I'm now onl cipro (again) and a med that acts as a numbing agent. Should feel a lot better within a day or so, can't wait for the meds to kick in.
 
Sandy, that sounds awful. :( I hope the urologist can help. How many UTIs do you get, on average? I was getting 6-8 per year in college. I started taking cranberry supplements and that lowered the amount considerably, now I get about 1 per year. So I think that means I don't have interstitial cystitis, as I've read that cranberry can make IC worse rather than better. I've long thought that my bladder issues and gut issues might be related in some way though. I've had this IBD or whatever it is since just before I turned 30, but I've had an iffy belly my whole life. I was a bedwetter up until about the age of 12, and recently they came out with a study saying that kids who are bedwetters almost always have constipation to blame for it - something like, the gut is too full of stool and that pushes on the small (child sized) bladder in the night? I don't recall being constipated a lot as a child, but the article did say that it's very difficult for children to know if they're constipated. So if that's the case then I've really had issues with both my guts and my bladder that have gone hand in hand for my whole life. Anyway, I'm rambling, but I know how much bladder issues suck and I feel for you.

I haven't posted in here much because I just feel like a big complainer lately. And it's just little stuff. Prednisone gives me headaches every time I taper, and it's made my face and belly quite chubby (I have chipmunk cheeks!) and the low-FODMAP diet is boring and I want to eat things I shouldn't, and I have a cold, and so on. My flare is much improved, my guts have been super quiet (I'm having formed stools a few times a day, almost zero cramping, basically zero flare symptoms). So I shouldn't complain but I just feel bleh. I'm not flaring but I don't feel wonderful either, I guess, and I feel like I should feel wonderful since I'm getting out of the flare. It's hard to just feel bleh. I should not complain so I have just not said anything. I'm such a whiner lately. Can I blame that on the pred?? ;)
 
Bless you, Cat, I wondered why you weren't posting lately on your own thread.:hug: I think we all understand that not feeling great, but not being totally in a flare at the same time. And little stuff can add up quickly, kind of like being nickled and dimed, only with health. I've found that with me, if I don't complain, it comes out some way or another anyway, and I would rather it be in words on a forum. Feeling meh or bleh is still not good, and we all want you to feel not just bleh, but great.
In regard to my complaints (which don't ever end), I can't even begin to guess how many infections I was getting a year, but it did slow and/or stop for the four months I was on an extended antibiotic course. Off the antibiotics, I almost always seem to get one within a couple weeks. In re cranberry supplements, I had/have been drinking a lot of cranberry juice (even though not good for my diabetes:blush:), although studies give mixed results of its effectiveness. Because of the cost of all the supplements and meds I have been taking, I just didn't want to add another, but I think it just got moved to the top of my priority list (bought some before I read your post). The doc today convinced me of its effectiveness, and your comments just solidified it. The doc told me of the patients he has seen that take it on a daily basis, they have had a reduction of about 70%!
Incidentally, I too have wondered about the connection between the two conditions. I do remember getting constipated as a child, wasn't a bedwetter, but had a few "accidents" when I had bladder infections even then. I told my mom about them, but was never taken to the doctor, seemed to always be able to be treated at home (I wish I could remember what my mom did).
Also incidentally, I did go a urologist a few years back when one of my lab numbers taken by my then GP (creatinine if I remember correctly) showed I was in the beginning stages of kidney failure. The numbers normalized by the time I started seeing the urologist (big wait to get an appointment), and for the year or two I was seen by him, never showed anything alarming. I guess its back to him I go, though.
Sorry I took so long to explain all this. Hope the rest of you are having a better day than I am.
 
Sandy, I can relate to having new symptoms/problems all the time! Just when you think it can't get worse, it somehow always does. I had green poop for four days last week, and I still don't know why. I can't think of anything weird I ate. And now, of course, it's that time of the month for me, so that just makes everything worse. It feels like it's always that time of the month somehow! I'm just SOOOO tired of being sick. But I think I say that every day. It feels like I'll be stuck like this forever.
 
In my reading about causes of poop color, if you didn't eat anything weird ,akgirl, things probably moved too fast through your system to get processed properly. (That is why diarrhea is often green.) I hope you feel great soon too, though it seems unlikely for most of us here. Hugs! :hug:
 
Sandy, with regards to the diabetes, that could potentially be affecting your kidneys, I think. My grandpa had diabetes and kidney failure - I had read somewhere that certain diabetes meds (or sometimes the diabetes itself?) can lead to kidney failure. This was years ago that I read that, though, so I don't remember exactly. My grandpa's kidneys started failing well over 10 years ago - I remember they were still living in their big house (which they moved out of like 15 years ago?) and my grandpa was saying that they give you a number based on how bad your kidneys are failing. I think zero was your kidneys are perfectly fine, and 5 is your kidneys are completely shut down. He was at a 3.5 even back then. In 2006 he had a cardiac arrest and needed heart surgery, and the anesthesia from that killed what remaining kidney function he had left, so from 2006 until his death in May, he was on dialysis. It really sucked. I hope you don't go down that road!

I have a hard time drinking cranberry juice. Most of it has so much sugar and that isn't doing my bladder any favors. I definitely prefer the pills. Oh, and if your doctor recommends that you try a supplement called D-Mannose, don't take it. I tried it because it supposedly works miracles for bladder issues. Well, it did make my bladder feel better. But it can also cause horrendous diarrhea, cramps, nausea - all of which I experienced. It was not a fun time. And apparently those are quite common side effects. Ugh. So I would say do not try it, the side effects are not worth the benefits.
 
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Thanks Cat, diabetes can definitely cause kidney failure, but have the gut instinct that is not what is causing my problems (at least by itself). I've read about the kidney failure stages in the past from the time I was told I was in the beginning stages of kidney failure by my GP, but don't remember much other than what you said above. I know at the time my numbers indicated level 1 or 2, but as stated, those numbers reversed themselves. I hope I don't go down that road at all again myself in the future. Kind of scares me.
Unfortunately (or fortunately, depending on from what point of view you look at it), I love cranberry juice. I did make sure that I always bought 100% cranberry juice with no sugar added because of my diabetes, but even that is loaded in natural sugars. Thanks for the heads up on the D-Mannose. I just bought Sundown Naturals cranberry gummies, and although it does have sugars in it (and gelatin), because the cranberry is from concentrated powder, I'm not getting nearly what I would be in sugars if drinking the juice. The doc recommended just one gummy a day, though the normal dosage on the bottle is five per day.
I must be off, have to go to the store to buy our foster son (lives in a group home now, has disabilities) a birthday present. Taking him to dinner tonight, he is like a kid at Christmas when it comes to his birthdays (although he is 33 now, but in some areas like an 8 year old, in other areas wise beyond his years). Just wasn't up to getting anything but what I had to when I bought the cranberry gummies yesterday. Doing a little better today, thanks to the meds. I can't wait for it all to be cleared up however.
 
Aw. that's sweet about buying your foster son a gift, I bet he'll love whatever you give him. (Personal note, I have been obsessed with Legos lately - I'm not sure how disabled your foster son is or if he's able to build Legos or if that's too babyish for him, but I have had a ton of fun lately buying and building Lego sets - just an idea, no idea if that'll work for you or not.)

I also hope you don't have to go down the road of kidney failure. My poor grandpa, his health was sort of on a slow & gradual decline for years - he had diabetes for as long as I can remember but for the longest time he only had to take pills for it, no shots. And his kidneys were gradually failing but that seemed to progress really slowly, too. Then he had a cardiac arrest, was resuscitated, had to have heart surgery, and from there everything just hit the metaphorical fan. His heart was bad ever since, even with the surgery (during good times, his heart was working at 50% of what a normal human heart would be doing). His diabetes got way worse and he suddenly had to do multiple shots every day. His kidneys failed completely and he had to do dialysis 3x per week for nearly 10 years. He got really bad arthritis in his hip but couldn't have a hip replacement because his heart wouldn't survive another round of anesthesia, so he ended up in a wheelchair the last few years of his life. It was just one thing after another, he was so sick and in so much pain. He told me multiple times that he was only continuing to live because he wanted to be around to take care of my grandma (she's got dementia, so he was taking care of her mentally and she was taking care of him physically). It was a really sad situation, and towards the end of his life, he told me he was ready to go. He died peacefully in his sleep about 2 months after he told me that. So for the last 10 years of his life, it was just bad health and not really wanting to be alive - it seemed like it must have been torture. I felt so bad for him.

Anyway, that was a ramble, sorry. Hopefully your experience is nothing like that and that your kidneys don't get any worse! But, maybe to be safe, avoid anesthesia if you can. That for some reason was way more stressful on my grandpa's body than the actual cardiac arrest was (maybe because it was such a long surgery, it was something like 7 hours because they did 4 bypasses).
 
Oh, and I should mention the worst/ most ironic part - my grandma was born with 3 kidneys. We think she partially absorbed a twin in utero as she has a few extra organs. She wanted to donate her extra kidney to my grandpa when his failed, but she's not a match for him. She wanted to see if they could do a swap - like, find someone she is a match with and donate to them, and have their donor donate to my grandpa - but they couldn't find anyone to do that with, either. And then my grandpa's heart wasn't healthy enough for more anesthesia anyway so it became a moot point. But even so, my grandma is still alive and still has 3 kidneys, it's a bit sad that the "spare" one couldn't help out my grandpa.
 
That's really interesting about your grandmother and her three kidneys. I also remember well your stories regarding your grandparents, at least since I joined this thread, because after your grandfather's death your grandmother was moved to where she is now about the same time my mother was moved near my sister because of her dementia.
 
Yes, that's right. My grandpa died in May, and in June we moved my grandma out of her condo because of her dementia. My grandma is currently in a memory care unit at an assisted living facility. She's steadily declining though and my uncle is talking about moving her to a proper nursing home soon. Apparently they can only do so much for her in the memory care unit, and once her decline reaches a certain point, she basically has to go to a nursing home. I'm not sure exactly what the criteria are. For now she can still speak and can remember some things although not much, she sometimes remembers who people are and sometimes not, she can still eat and feed herself. At some point someone had sent me a link to the typical stages of Alzheimer's decline (she's not officially diagnosed but I'm sure she's got Alzheimer's, she fits every bit of Alzheimer's to a T). And if I'm remembering right, it sounded like the next phase that my grandma is likely to experience would be losing the ability to speak. So I think the plan is, that when she starts being unable to speak, that's when she gets moved from memory care to a nursing home.

How is your mother doing? Is she in memory care or a nursing home? Is she adjusting okay to her new environment? (It's okay if she's not - my grandma regularly comments that she's been wrongfully put in "prison" - she feels there's nothing wrong with her and that she should be able to live on her own, have an apartment, drive a car, and do whatever she wants. Um, no.) I'm so glad my grandma is in a care facility. When she was on her own, she was regularly forgetting to eat, and when she would eat it would often be expired or even rotting food (she's got hoarding tendencies including food hoarding, and that coupled with dementia meant she wasn't able to recognize that food had gone bad nor throw it away). She'd go wandering, at one point she was knocking on garage doors that were not her own and yelling, "This is my garage, let me in!" She was really lonely after my grandpa died, too. She'd call me and leave me really sad voicemails saying things like, "You can call me or visit anytime. Just call or just come over. I'm here all day, every day, it's just me, and I don't do anything and I don't go out. So just call me or come over." Now that she's in a facility, she's getting regular meals of food that hasn't gone bad, she's got people to talk to, and the facility is secured so she can't go out wandering without setting off alarms and alerting staff. I know she says she hates it there, but I'm so so so happy that she's in "prison." I can sleep at night knowing she didn't eat rotting food or go wandering.
 
I forgot to mention Cat, that kiddo used to be obsessed with Legos, but thinks he's outgrown them now (I suspect from peer pressure), so now his focus is on model trains. I bought him some tunnel end pieces for a train layout he is working on and a pair of pants as he was short on clothes. We also brought cupcakes and put "trick" candles in them, that kept relighting aft he blew them out. He was happy.
 
Hah, Sandy, that's funny - I literally just finished building my Lego train set yesterday. :p We're trying to turn it into an xmas train, we're planning to have it go around the base when we put up our tree. That's really nice that your foster son is building model trains, that sounds like a great hobby. :)
 
Your last message, Cat, apeared as I was typing mine. My mother is not in a care facility at all yet, though I think she should be. When in Salt Lake, she also wasn't eating right, she also hoards food and eats expired food like your grandmother. My sister spends a couple hours a day with her most days and she gets meals on wheels now. She also hates it there and talks non stop about why did she ever let herself get talked into moving there. At one point, her current town had a tornado warning, she knew she was supposed to go into the inner (large) closet, but told me said to herself "if I die, I die." She also keeps talking about how she wasn't supposed to "live this long" (she is 87), so I know is quite depressed. Other than her memory, a quite successful heart valve replacement a few years back and bad eyes and ears, she is in otherwise fairly good health for someone her age. She had a best friend in her condo building in Salt Lake (Betty, who is 96) that she saw several times a week, and although Betty wrote her several letters (so did other friends from her building write, the tenants have a lot of elderly people), Mom never responded with her new telephone number, etc. , and Betty finally asked me in an email for her number, and asked if she was alright. I know Betty called her when I wrote back, but Mom has still never returned calls or letters. Mom doesn't tend to wander, as she is afraid of her surroundings and has poor balance, but she does think everyone is out to take advantage of her. When moving, when my brother was there to help, she thought he was there to steal her stuff. Mostly she doesn't remember her grandkids anymore if she doesn't see them regularly (she has a lot, though), but does remember her children. She repeats herself constantly and loses everything. She used to do a lot of cross stitch, but when her eyes and memory got to bad to finish a couple of projects, I offered to help but she refused (several times) because she wanted to do it herself. Now she is near my youngest sister, she reports happily that Judy is finishing them for her (having no recollection of our several conversations.) I have to remind myself it is her disease and not me (just like she didn't want to live with us, but that one also had some other considerations and in the end, I'm glad she didn't.) She also doesn't have any official diagnoses, but I also suspect alzheimers.
 
Ron, sometimes my grandma can't remember whether or not her husband/my grandpa is still alive or not. I've had to tell her many times that he died, he's dead. She was the one who found him dead - he died peacefully in his sleep and she woke up and found him and called 911 - but she doesn't remember any of that. Usually now she can remember that he is dead, but she thinks they were in the same memory care unit but kept apart for some reason and that he died there (not true, he died at their condo). She gets very confused by the whole thing and does not remember how or where he died.

Sandy, your mother and my grandma sound SO much alike! My grandma also had a friend at her condo complex, although that lady died shortly after my grandpa did. My grandma is also very paranoid about people stealing from her. She thinks my aunt stole money from my grandpa (not true), she thinks a maintenance man at their old condo was stealing from them (highly doubtful), and now she thinks that her 3 adult kids want her to die so that they can take her money from her will. Sometimes she says she wants to change her will so that I'm the only beneficiary. Um, no. And I know my grandma is depressed and maybe wishes she was no longer alive either. She's told me several times that when she goes to sleep, she wishes that she wouldn't wake up. Sometimes she has extreme anger that comes out of nowhere, and in those moments she's said some really scary things. She's threatened suicide (she asked me if I had any razor blades in my purse) and she's also threatened to set her facility on fire (she asked if I had any matches). I told her those are horrible things to say and she said she didn't mean it. I don't think she does mean it, I think she's just angry and depressed and confused, and a lot of it is the dementia. Of course she's sad that my grandpa died, they were literally together since she was something like 14 years old so she doesn't know what to do with herself now that he's gone. And the dementia is making her confused and angry, that's understandable too.

And like your mother with her cross-stitch, my grandma used to be prolific at sewing. Heck, she's the one who taught me how to sew and she gave me my first sewing machine when I was a little girl. But now she doesn't sew at all, I'm presuming it's because she lacks the mental ability to focus on a task like that. I did buy her one of those coloring books for grown-ups, with pictures of flowers, and I got her some nice colored pencils. I wasn't sure if she still has the capability to color, but to my delight I opened the book and saw that she had colored the first page. :) So maybe your mother would like something like that? I mean, there's no wrong way to color, and my grandma even stayed within the lines and picked appropriate colors (the leaves were green and the flowers were pink). That was encouraging.

And like you said of your mother, my grandma is 84 but is in mostly good physical health. She had a mild heart attack maybe 13-14 years ago and had stents put in, and apparently hasn't had any heart issues since (I don't think she was seeing a doctor regularly since then, though - with my grandpa being so physically ill, he took on the role of being "the sick one" and she therefore was the healthy one, and I think she avoided doctors out of willful ignorance). Walking is becoming an issue but she can still walk somewhat, and when we visit her at her facility, we're allowed to take her outside to the parking lot for short walks (she can manage to walk maybe 100 feet down and back). And she's still physically pretty sturdy, she's not frail or weak.

She also loses things constantly and it's because she hides things. She's so paranoid about things getting stolen that she hides everything. The TV remote is often hidden in her purse. She once lost her glasses for a full week. She hides her portable DVD player in a variety of places. She also, and this is apparently another hallmark of Alzheimer's, sometimes she is under the mistaken impression that she's moving out of her room or being moved out, and will pack up all of her things into boxes. (The staff at her facility said some residents will pack and unpack every single day, it's a common behavior.) Once she told me she thought she was being moved to a storage closet where she'd have to sleep on a cot. She also doesn't recognize some of her own belongings, particularly her clothes. She thinks they belong to a lady who previously lived in her room "who is much fatter than I am!" Um, no, these are your clothes and this is your size.

And my grandma is forgetting some of her grandchildren. She's erased all memories of my brother from his childhood, she's made comments saying it's a shame he could never come to any family events over the years - he was like, I was there! She does not remember my cousin at all. She usually knows me and my husband and even our dog, although at my dad's last visit he said she had trouble at first remembering who I am when they mentioned my name. She sometimes thinks my mom is my dad's old girlfriend from high school - um, nope!
 
They do sound a lot alike, but my mom hasn't started thinking she is moving anywhere else (yet). I do worry about her while my sister is on vacation in Japan for two weeks, but she has arranged for people from their church to look in on her and take her to church, make sure she is eating,etc. It just won't be the same though.
 
Can you call your mother just to make sure she's okay and has eaten? Does she have one of those button things where you can push it summon help if you fall or hurt yourself? (My grandma has one of those, but I don't know that she'd know to push the button if she did fall in her room, so I don't know that the button thing is foolproof, but it might give you some peace of mind.) Hopefully the 2 weeks goes by uneventfully for you. I know I was worried constantly about my grandma after my grandpa died - it was just about a month between when he died and when we were able to get her moved into the facility, and that itself was a minor miracle (or maybe a major one!). There's one highly-rated memory care facility in my grandma's town, and it just so happens that my grandpa used to be on their board years ago, so we had a connection. They happened to have one opening in the memory care unit - normally, we were told there is a 7 or 8 month wait list to get into the memory care unit, but they put my grandma at the top of the list and got her into that one opening. I was so happy for that! There was no way she could have been on her own for 7 or 8 months, not with her wandering tendencies. I mean, we'd still be waiting if we had to wait the full 7-8 months! No way. I'm so glad she's in a safe place now. Hopefully your sister's trip will go by quickly (for you, not for her) and then you can rest easier.
 
Yes, I will be calling my mom (daily) while my sis is away, and no, she doesn't have one of those button things. I also know she would refuse one if I brought it up (if her friend Betty doesn't need one, she doesn't). It's ironic, though, it was suggested by a hospital that I get one awhile back while I kept having seizures and mini strokes. Thankfully, those things are under control now.
And hopefully, you are correct in that things go smoothly while Judy is away. I'm glad my sister has the foresight to make arrangements for people to check in with her occasionally. I think that my sis probably needs this vacation after having responsibility for my mom for awhile now. I don't think she had any clue what my mom was really like until she got moved back there ---
Hope everyone on this thread is okay today.
 
Hi all, just wondering if it's normal to continue to lose weight even if you're eating more? I've lost about 30 pounds since June, and although I've increased my caloric intake to 2,000+ a day, I'm still losing weight. My GI doctor doesn't seem to be too concerned by it though, and my earliest appointment date is Nov. 1st.


Started having more frequent bowel movements again as well (yellow with mucus). :S

Have had endoscopy, CT scan (showed something is up in my terminal ileum), abdominal ultrasound, chest x ray, countless blood/urine tests, and stool sample. Other than the ultrasound showing a small cyst on my pancreas, and malabsorption in the ileum, everything else has been normal. I'm afraid my doctor won't get me in for more tests until next year. Argh....
 
Johno87, no, it's definitely not normal. My GI gets worried if I lose even 5 lbs unintentionally. I just recently had a bad flare which I'm still currently working my way out of, and at the height of the flare I lost 17 lbs in a month. My doctors took that very seriously and I actually ended up being hospitalized and was then put on EEN and steroids (which has fortunately helped me to turn things around). Unintentional weight loss is always something to be taken seriously and investigated further. Make sure your doctor looks into it, and if he continues to not be concerned, get a second opinion from another doctor.

In the meantime, while waiting for your appointment, have you tried any of the high-calorie drinks such as Ensure or Boost? Those are usually pretty easy to digest, contain some vitamins and nutrients (although a lot of them also contain a lot of sugar and some have carrageenan, which is bad for us, so read the labels) and might help you at least maintain your weight if not gain.
 
Johno87, no, it's definitely not normal. My GI gets worried if I lose even 5 lbs unintentionally. I just recently had a bad flare which I'm still currently working my way out of, and at the height of the flare I lost 17 lbs in a month. My doctors took that very seriously and I actually ended up being hospitalized and was then put on EEN and steroids (which has fortunately helped me to turn things around). Unintentional weight loss is always something to be taken seriously and investigated further. Make sure your doctor looks into it, and if he continues to not be concerned, get a second opinion from another doctor.

In the meantime, while waiting for your appointment, have you tried any of the high-calorie drinks such as Ensure or Boost? Those are usually pretty easy to digest, contain some vitamins and nutrients (although a lot of them also contain a lot of sugar and some have carrageenan, which is bad for us, so read the labels) and might help you at least maintain your weight if not gain.


Hi Cat, thanks for your advice. I haven't tried Ensure or Boost yet, I'm lactose intolerant so I'm not sure if I'd be able to consume them. I can generally eat most whole foods ok, but it seems like I can't seem to regain any of the weight I've lost. I'll definitely get a second opinion if this doctor won't do the tests that I need.

About how long did it take you to get a diagnosis?
 
Hi Cat, thanks for your advice. I haven't tried Ensure or Boost yet, I'm lactose intolerant so I'm not sure if I'd be able to consume them. I can generally eat most whole foods ok, but it seems like I can't seem to regain any of the weight I've lost. I'll definitely get a second opinion if this doctor won't do the tests that I need.

About how long did it take you to get a diagnosis?
John, I can't tolerate lactose either. I don't know about Boost but I did Ensure for a while but as Cat said look out for carregeenan in the ingredients. Some of the Ensure products have it.
 
I'm lactose intolerant as well and I've been doing Boost "simply complete" lately. It doesn't upset my stomach at all so I think it's lactose-free. The ingredients list says it contains milk protein concentrate, whatever that is, but apparently that doesn't bother my lactose intolerance. And it does not contain carrageenan.

As for a diagnosis, I'm still waiting! I have a tentative pseudo-diagnosis of presumed IBD, but I've been ill for almost 7 years now and am still waiting on a proper diagnosis. They didn't find anything concrete even when I was hospitalized.
 
Boost and peotamen etc are processed so they are less than something like 20 ppm off lactose so extremely low and tolerated by most with lactose intolerance
 
I'm lactose intolerant as well and I've been doing Boost "simply complete" lately. It doesn't upset my stomach at all so I think it's lactose-free. The ingredients list says it contains milk protein concentrate, whatever that is, but apparently that doesn't bother my lactose intolerance. And it does not contain carrageenan.

As for a diagnosis, I'm still waiting! I have a tentative pseudo-diagnosis of presumed IBD, but I've been ill for almost 7 years now and am still waiting on a proper diagnosis. They didn't find anything concrete even when I was hospitalized.

Thanks I'll check it out next time I'm at Walmart, was there earlier and may have seen it.

And that's brutal. I'm only 3 months into this, I cannot imagine (and hope I won't have to) waiting 7+ years for a diagnosis.
 
It hasn't been all bad. 7 years does sound awful, but I spent a fair chunk of that time in remission. My doctors - both GP and GI - treat me as though I have IBD. They've put me on steroids for flares (I've been on Entocort several times and am currently on prednisone for this flare as I didn't respond well to Entocort this time around). And I'm on Lialda for maintenance, and trying to get my GI to approve me to try LDN. So it's not been just 7 straight years of flaring, it's been some bad times and some flares but also a lot of good times where I didn't feel sick and was able to live a fairly normal life.

Sometimes it just takes awhile to get a diagnosis. I have an aunt who finally got a Crohn's diagnosis after over 30 years of symptoms! So my goal is just to get a diagnosis before it's been 30 years. :p I'll get there, and in the meantime I've learned a lot about having to be a patient patient. ;)
 
Johno87, unfortunately there are many in the IBD arena that have had to wait for quite some time for a diagnosis. It sounds like you might be able to get a diagnoses sooner, however, with your description of "something [in your] terminal ileum," etc. if you can get a doctor to investigate that and your (yes, very worrisome) weight loss. Also, malabsorption isn't exactly normal either, tho can be caused for a multitude of reasons (including IBD). To me, it sounds like this malabsorption is what is causing your weight loss, as it would make sense that you aren't able to absorb the calories as well as nutrients. A lot of people with "short gut" syndrome (of course, they are actually missing the area where you just aren't absorping) run into problems with losing weight and what you described above. So malabsorption in itself is worrisome in my book, and they should be aggressively trying to find a cause. In regard to timing, I don't know how the system works in Canada for getting in to appointments in a more timely fashion, but I agree, if at all possible, if your doctor won't see you sooner, I would seek out another opinion if possible.
 
Johno87, unfortunately there are many in the IBD arena that have had to wait for quite some time for a diagnosis. It sounds like you might be able to get a diagnoses sooner, however, with your description of "something [in your] terminal ileum," etc. if you can get a doctor to investigate that and your (yes, very worrisome) weight loss. Also, malabsorption isn't exactly normal either, tho can be caused for a multitude of reasons (including IBD). To me, it sounds like this malabsorption is what is causing your weight loss, as it would make sense that you aren't able to absorb the calories as well as nutrients. A lot of people with "short gut" syndrome (of course, they are actually missing the area where you just aren't absorping) run into problems with losing weight and what you described above. So malabsorption in itself is worrisome in my book, and they should be aggressively trying to find a cause. In regard to timing, I don't know how the system works in Canada for getting in to appointments in a more timely fashion, but I agree, if at all possible, if your doctor won't see you sooner, I would seek out another opinion if possible.
Agree
 
Thanks Cat, Sandy, and Ron. It's definitely tough waiting, especially when you're in almost constant pain. I may need to get another GI, but in Canada that can take months :S.

The thing that got me though with my current GI is after my endoscopy came back clear, her advice to me was to "get on with my life." I'd love to see her try dealing with this for just one week, let alone month on end >.<

Sorry, had to vent and get that off my chest.
 
I've been trying to read and keep up, but my new job is keeping me fairly busy!

I do have some happy news: I saw the new Rheum, and he agreed that I have Sjogrens. He even increased my Plaquenil to 200mg twice a day (instead of once). BUT, then I get a phone call....old dr has a new practice, and do I want to see her again!! So now I have an appt with her, too -- I'm not sure who to "stick with" right now, it's kind of a weird spot to be in. I figure I can check in with her, let her know what happened while she was out, and see if I stick with Rheum for Sjogrens, and her for just Dysautonomia -- which is what I'm thinking right now.

ALSO! I have a plan for my belly pain. I went to a pain clinic, after avoiding them for a long time. They are going to perform something called a TAP block. Basically, they go in and numb the area that is causing a deep pain. It is used after abdominal surgery, most often, to avoid narcotics. They aren't 100% sure it'll work, but because my pain seems to be around the colon, and my blood work isn't showing any signs of inflammation, they are comfortable trying it. I'm honestly looking forward to it. Anything for some relief, ya know? I mean, I'm on immodium on a "schedule" now for the D, and it keeps fairly under control, so now if we can get the pain in check, I think things would be OK. And, they said that this block wouldn't mean that I would "miss" signs of inflammation if they were to occur, because they are numbing a small area, and inflammation pain tends to radiate.

Speaking of pain management, this is OT I just got my 2nd round of Botox for migraines! The first time, I didn't get relief until about 4 weeks in, then, about 3 weeks ago, they started back up again, BUT, for those weeks in between? I had "regular" headaches maybe 1-2 times a week, and a migraine maybe once in that whole time! I normally get a migraine 2-3 times a WEEK! My trigger is changes in lighting, so going from dark to bright lights, etc. So fall and winter are really bad, because the sun is so low to the South here in CO, and the reflections off cars, and later snow, etc, get BRIGHT, and the shadows super dark, even if I wear sunglasses. I'm not getting any relief yet, but I was told the 2nd time you sometimes get relief faster, and it may last longer, so here's hoping! (although for other ppl it's always the same, that you only get 5-7 weeks of relief, but OMG, those weeks are glorious!)

Job update -- It's been 6ish weeks, I think? Things are going well! I just had a "check in" with the owner last night, and his only "complaint" is that I'm not utilizing him enough, and I need to ask more questions - I told him I have a hard time with knowing what I don't know, but that it's something I'm working on. Then he offered a lot of advice on things I didn't know I didn't know - that was awesome! Plus, they are trusting me with more and more responsibility each week. It's a nice feeling.

I wish everyone health!
 
Hey guys, wanted to get your opinion on something. I had a CT scan earlier in August that showed fecalization and mild obstruction in my terminal ileum. Because of that the GI said that they could not see inflammation clearly enough to diagnose.

What I'm wondering is would it be worth it for me to have an MRI of my abdomen? I would have to pay out of pocket, about $1500.

Your help is greatly appreciated.
 
Hey guys, wanted to get your opinion on something. I had a CT scan earlier in August that showed fecalization and mild obstruction in my terminal ileum. Because of that the GI said that they could not see inflammation clearly enough to diagnose.

What I'm wondering is would it be worth it for me to have an MRI of my abdomen? I would have to pay out of pocket, about $1500.

Your help is greatly appreciated.
If you could get a clear diagnosis after having it.
 
Johno, have you had a colonoscopy yet? You mentioned endoscopy but I'm presuming that means you've had an upper endoscopy, not colonoscopy? If you could get that done, that could both visualize and take biopsies from the terminal ileum. If it were me, I'd be pursuing that before going for the MRI.

How's everyone else today? I'm not good. I got down to 10 mg of pred (started at 40) but tried to taper down to 7.5 mg today, and failed hard. A lot of LLQ pain and some LRQ pain. Very discouraged. I'm going back up to 10 mg, and sent a message to my GI asking what to do from here. I just want to curl up and not have to do anything else today. Ugh, frustrated. Just trying to hide out at my desk and not face anybody until it's time to go home from work. And trying not to cry at my desk, without much success. Ugh.
 
Thanks Ron and Cat, I haven't had a colonoscopy. My GI said that would be the next step, although it seems like my problem stems from the terminal ileum so I don't know if the scope will reach there.

And Cat I'm sorry to hear that you're having so much pain today, it really sucks how it can make the simplest things seem so hard.
 
Johno, have you had a colonoscopy yet? You mentioned endoscopy but I'm presuming that means you've had an upper endoscopy, not colonoscopy? If you could get that done, that could both visualize and take biopsies from the terminal ileum. If it were me, I'd be pursuing that before going for the MRI.

How's everyone else today? I'm not good. I got down to 10 mg of pred (started at 40) but tried to taper down to 7.5 mg today, and failed hard. A lot of LLQ pain and some LRQ pain. Very discouraged. I'm going back up to 10 mg, and sent a message to my GI asking what to do from here. I just want to curl up and not have to do anything else today. Ugh, frustrated. Just trying to hide out at my desk and not face anybody until it's time to go home from work. And trying not to cry at my desk, without much success. Ugh.
I am sorry you are in so much pain
 
Johno, yes, the colonoscopy can reach the terminal ileum and can take biopsies. It sees the entirety of the colon and the terminal ileum and that's about as far as it goes. So I'd say definitely do have the colonoscopy and make sure that they take a lot of biopsies, particularly from the TI.

Ron, I took a bit extra pred to get through today (I had a tablet in my purse so I took half, so I took an extra 5 mg) so the pain is greatly lessened now although not completely gone. I think I had a mild panic attack too and I'm going to take some lorazepam (anti-anxiety med) when I get home. I have no weekend plans except that my parents are coming down to take me out for lunch (I can have sushi on the low-FODMAP diet as rice and fish and seaweed/nori are all safe, so we're going to have sushi). So just lunch but that's it, other than that I'm going to be resting up all weekend. Hopefully that will help.
 
Hey guys,

It's been 6 weeks since my gastroscopy and colonoscopy. My GP has been trying to chase things up and my biopsies are normal but my consultant wants to to have a sigmoidoscopy now as when they looked at the images again they saw swelling in the rectum?

It's the first abnormality they have found. Hopefully closer to a diagnosis?

:(
 
Hey guys,

It's been 6 weeks since my gastroscopy and colonoscopy. My GP has been trying to chase things up and my biopsies are normal but my consultant wants to to have a sigmoidoscopy now as when they looked at the images again they saw swelling in the rectum?

It's the first abnormality they have found. Hopefully closer to a diagnosis?

:(
Hope so
 
Cat I'm sorry you're having trouble with this latest taper, I hope it doesn't give the flare chance to come back! How is the low FODMAP diet going for you?

I'm back at the dietician on Wednesday which frankly is a relief after the last week. I'm seriously so fed up of nausea now. I'm also pretty sure I've lost the 500g I had put on by my last appointment, thanks to the nausea this week I've not managed to eat much at all. It's so frustrating. I am really trying not to get my hopes up about a short trial with the NG, I keep trying to tell myself they won't go for it, but I'm obviously hopeful because I've made a list of what to pack for a few days in hospital should they decide to go ahead haha. I guess I just feel like I'm running out of other options especially as my gastro still hasn't sent me another appointment date and things really aren't getting any better. I'm so exhausted recently I definitely feel like my body has used up any reserves it had.

I honestly thought this time last year that by now I would have a proper diagnosis and treatment plan in place. I even hoped I would be doing better. It's really disheartening.

Although for you newbies please don't think you will have a similar journey! Mine has been tricky due to other chronic illnesses.
 
Sarah, I was the same way when I was admitted to the hospital, I figured ahead of time that I would be admitted so I packed a bag and brought it with me to the ER. Now I keep a bag with some essentials in it just in case I need to go back to the hospital.

Here's what I'd recommend packing - socks & underwear for sure, at least a few days' worth. Slippers as your feet will get cold. (They should give you a gown to wear, but I opted to wear my own sweatpants and t-shirts, which was much more comfortable to me.) Toothbrush, lotion, lip gloss, any toiletries that you might need. I was a bit shocked, while I was in the hospital I had been intubated during my colonoscopy (I had full anesthesia as the sedation no longer works well for me) and I had a very sore throat afterwards - I asked the nurse for a throat lozenge, but she said they didn't have any. ???!! I also got my period my last day there and had to ask for tampons/pads, but the nurse didn't bring me any of those either (fortunately my hubby came by with some, phew!). So don't presume that the hospital will have that stuff, I went to a top hospital (apparently it's the top rated hospital in my entire state) and they didn't have tampons nor throat drops, which I'd consider pretty basic supplies to have on hand. So get yourself whatever supplies you might need, shampoo, soap, razor, etc.

Also bring things to keep you entertained. Computer, tablet, phone, and make sure to bring chargers for all of those things! And things to help you sleep - I made sure to have my teddy bear, some noise cancelling headphones, and an eye mask to keep any light out of my eyes. Books, a journal, puzzles, whatever will help you pass the time. There's a whole lot of "hurry up and wait" when you're in the hospital. Wait to have a test, then wait for the results, repeat.

Good luck and keep us posted. I kind of hope that you are admitted, because it sounds like that's what you need right now. I hope you are admitted and can get some proper answers and try the NG feeding tube and whatever else it takes to get you feeling better again. Good luck, I will be thinking of you! Update us when you're able to.
 
Oh, and low-FODMAP is going well although I've cheated on it a few times with both gluten and dairy (there's this twisty cheese bun at a local bakery which is heavenly and I've snuck over there and eaten that several times already, oops). No real ill effects from cheating on low-FODMAP which is good (slight gassiness is it, but I've had worse gassiness from FODMAP-friendly foods, particularly corn products and roast duck, the duck made me soooo gassy!).

And since I've put myself back up to 10 mg of pred, and the pain has gone, I feel pretty well again. I was able to take my dog on a nice hike today, she got tired out before I did so I must be doing well. :p I'm nervous about what's going to happen when I try to taper again, but I'm hopeful my GI can help. I sent him an email asking if pred is available in 1 mg increments - I think it is, and that way I could taper from 10 mg to 9 and so on (I currently have 10 mg tablets, so I cut one tablet in half and then cut a half in half, so I took 3/4ths of a tablet which was about 7.5 mg and that's what put me in pain, going from 10 to 7.5 was too drastic apparently).
 
Oh, and low-FODMAP is going well although I've cheated on it a few times with both gluten and dairy (there's this twisty cheese bun at a local bakery which is heavenly and I've snuck over there and eaten that several times already, oops). No real ill effects from cheating on low-FODMAP which is good (slight gassiness is it, but I've had worse gassiness from FODMAP-friendly foods, particularly corn products and roast duck, the duck made me soooo gassy!).

And since I've put myself back up to 10 mg of pred, and the pain has gone, I feel pretty well again. I was able to take my dog on a nice hike today, she got tired out before I did so I must be doing well. [emoji14] I'm nervous about what's going to happen when I try to taper again, but I'm hopeful my GI can help. I sent him an email asking if pred is available in 1 mg increments - I think it is, and that way I could taper from 10 mg to 9 and so on (I currently have 10 mg tablets, so I cut one tablet in half and then cut a half in half, so I took 3/4ths of a tablet which was about 7.5 mg and that's what put me in pain, going from 10 to 7.5 was too drastic apparently).
I hope you feel better, Cat.
 
Johno87, did you have that fecal calprotectin test done in the end? That's probably a cheaper test than either an MRI or the colonoscopy, less invasive, and will tell you if you have inflammation or not.
 
Cat I'm glad your feeling a little better although I'm sorry the pred taper didn't go so well. I'm also glad you're doing well on low FODMAP, it's something I'm still considering but I haven't made my mind up for sure yet. Thank you for that, I will make sure I pack plenty to keep me occupied! I'm pretty sure I won't be admitted this week, it will be a planned admission so won't be until at least next week I would imagine. I will see how the appointment goes then I will know whether I need to actually pack or not.

Feeling pretty crummy tonight so really hoping something comes from the appointment and I hear something soon from gastro!
 
Cat I'm glad your feeling a little better although I'm sorry the pred taper didn't go so well. I'm also glad you're doing well on low FODMAP, it's something I'm still considering but I haven't made my mind up for sure yet. Thank you for that, I will make sure I pack plenty to keep me occupied! I'm pretty sure I won't be admitted this week, it will be a planned admission so won't be until at least next week I would imagine. I will see how the appointment goes then I will know whether I need to actually pack or not.

Feeling pretty crummy tonight so really hoping something comes from the appointment and I hear something soon from gastro!
Sarah, I hope you can get it resolved soon.
 
Sarah, that's interesting - they didn't even really give me the option of having a planned admittance. The day I was admitted to the hospital went like this - I woke up at 2 AM because my gut pain woke me up suddenly and wouldn't allow me to go back to sleep. I felt horrible and wanted to go to the ER right then, but I decided to wait until my GI's office opened at 8 AM and I called his nurse at that time. She said I should go to the ER and that they'd likely admit me. I asked if she could have my GI call the ER and let them know I'm coming and that I should be admitted, but she said it'd be up to the ER when they saw me, that my GI couldn't make that call. Which sounds odd to me, but whatever. So I went to the ER, spent about 5 hours there getting IV fluids and waiting for a bed to open up, then at about 1 PM I was finally properly admitted. And then I did colonoscopy prep in my hospital room that evening. It was a very long and eventful day!

Good luck with your appointment, I really hope you can make some progress towards either admittance or NG feeding or something that helps you feel better and regain some weight. Let us know how it goes on Wednesday!
 
Thank you Ron.

Cat, yeah we have such chronic bed shortages here in the UK that they will avoid admission wherever possible especially with winter coming! So if I went to A&E tonight for example they would give me a stronger antisickness, maybe do an ECG to be sure as my chest aches, maybe a blood test to check electrolytes etc and then send me home. I'm not sick enough for an emergency admission.

To be honest I'm not sure whether the dietician can actually admit me herself or whether she would have to get my GP or maybe even consultant to request it. I'm not too sure how it works really, never anything I've had to find out about. But I know it will be at least a few days after my appointment!

I do know that they can insert the NG as an outpatient then get the dietician and nurse from the nutrition company to come out and show you how to work the pump and all that. But because of my low BMI/weight I'm high risk for refeeding syndrome so assume I will have to be admitted for monitoring initially just to be sure. This is all assuming they go with the NG tube though! They might not.
 
That's sort of how it was when I was admitted to the hospital - I had gone to an urgent care clinic on a Tuesday because I felt really dehydrated (I was having a lot of watery BMs and wasn't absorbing much of anything, including water). Then I went to the ER on that Friday for more fluids and some bloodwork. And then it was the following Monday that I went back to the ER and was finally admitted. They don't want to admit you unless you're severely ill, but me having been in 3x in less than a week finally proved to them that I wasn't doing well (they could also see that I was really ill, like I had lost 17 lbs in just over a month and my bloodwork was showing low potassium in spite of them having put me on extra potassium the previous times that I had been in for fluids, etc). I don't think we have a lot of bed shortages here in US hospitals (maybe in the veterans hospitals?), so it was only a few hours' wait for me to get a bed. Nobody really wants to be admitted to the hospital here because of course it means you then have a big bill to pay, even with insurance (although it's looking like my insurance may have paid for a lot of my hospitalization, I'm still trying to figure out the exact amount I'll have to pay).
 
Hello to everyone reading this now. It's been quite some time since I've been on here as I've been crazy stressed and busy with my work but I need to vent again.

I've been working with a rheumatologist since June after my PCP recommended I see one after complaining of joint pains primarily in my knees and ankles. Mind you this is all the same hospital as the one that told me I "didn't have Crohn's" after refusing to listen to me and any of my history and just went by the textbook signs and concluded I only had "very severe IBS" despite the widespread inflammation throughout my small bowel and inflammation-positive biopsy. My rheumatologist changed my meds from Pentasa to sulfasalazine and I've had a much better response including relief from joint pain and about 95% of the D. My rheumatologist's notes say I have a history of Crohn's despite their GI department saying "no". I like my rheumatologist; he listens and is very thorough and has been more helpful to me than any GI doctor I've seen in the area.

Meanwhile, despite my having gained a few pounds (and not much at all), I still suffer from incredible pain in the same three spots. I'm concerned I may have narrowing or other problems and no doctor has been concerned enough to give me any more scans. The doctors out here are horrible and uneducated and I somewhat regret leaving my doctor in CA but I needed a stable home after I got majorly sick.

Still in chronic pain with no solution and still anemic. I'm responding so much better to Crohn's treatment than any IBS treatments I've tried and for someone to still tell me I don't have it seems incredibly ridiculous. I have to call the hospital again to follow up about having my records from the GI department destroyed; they kept trying to send me letters I had to sign for that I couldn't because I was always at work so I assume they just figured I didn't care anymore but it's still causing me harm.

Overall doing well, moving towards working full-time in a union job that will carry me through once my meds no longer work for me anymore so I'm confident. But still have some pretty major problems going on including anemia...how these are not signs of a more serious problem than IBS given my original diagnostic imagery, I have no idea, but I do know that Oregon doctors are horrible. I'd move back to California just for the medical care but I wouldn't have a job or any place to stay so for now I'm staying in this state despite our horribly inept state hospital doctors...

I'm off to call my PCP and the Patient's Advocate department. Hope everyone here is doing well and always stay strong and persist. Only you know what you feel inside. As hard as it may be, just keep searching for someone who will hear the whole story and examine everything. I'm glad I at least have someone looking out for me. My spirits are finally up; I hope I can bring some positive energy and hope into this group despite my prolonged absence.
 
Hello to everyone reading this now. It's been quite some time since I've been on here as I've been crazy stressed and busy with my work but I need to vent again.

I've been working with a rheumatologist since June after my PCP recommended I see one after complaining of joint pains primarily in my knees and ankles. Mind you this is all the same hospital as the one that told me I "didn't have Crohn's" after refusing to listen to me and any of my history and just went by the textbook signs and concluded I only had "very severe IBS" despite the widespread inflammation throughout my small bowel and inflammation-positive biopsy. My rheumatologist changed my meds from Pentasa to sulfasalazine and I've had a much better response including relief from joint pain and about 95% of the D. My rheumatologist's notes say I have a history of Crohn's despite their GI department saying "no". I like my rheumatologist; he listens and is very thorough and has been more helpful to me than any GI doctor I've seen in the area.

Meanwhile, despite my having gained a few pounds (and not much at all), I still suffer from incredible pain in the same three spots. I'm concerned I may have narrowing or other problems and no doctor has been concerned enough to give me any more scans. The doctors out here are horrible and uneducated and I somewhat regret leaving my doctor in CA but I needed a stable home after I got majorly sick.

Still in chronic pain with no solution and still anemic. I'm responding so much better to Crohn's treatment than any IBS treatments I've tried and for someone to still tell me I don't have it seems incredibly ridiculous. I have to call the hospital again to follow up about having my records from the GI department destroyed; they kept trying to send me letters I had to sign for that I couldn't because I was always at work so I assume they just figured I didn't care anymore but it's still causing me harm.

Overall doing well, moving towards working full-time in a union job that will carry me through once my meds no longer work for me anymore so I'm confident. But still have some pretty major problems going on including anemia...how these are not signs of a more serious problem than IBS given my original diagnostic imagery, I have no idea, but I do know that Oregon doctors are horrible. I'd move back to California just for the medical care but I wouldn't have a job or any place to stay so for now I'm staying in this state despite our horribly inept state hospital doctors...

I'm off to call my PCP and the Patient's Advocate department. Hope everyone here is doing well and always stay strong and persist. Only you know what you feel inside. As hard as it may be, just keep searching for someone who will hear the whole story and examine everything. I'm glad I at least have someone looking out for me. My spirits are finally up; I hope I can bring some positive energy and hope into this group despite my prolonged absence.
Glad you are doing better. Hope you get some definite answers soon.
 
Gadget, thanks for the update but I'm sorry to hear things are still pretty bad. Are they at least treating the anemia, if not looking for the source of it? At the very least they should be treating you for things like that! Last year I dealt with some pretty bad anemia/iron deficiency and it made a world of difference to get it treated (and we did confirm the source as well). I hope you can at least get that under control so that you can feel better. Surely not every doctor in the state can be that awful, I encourage you to keep getting 2nd (and 3rd, and 4th) opinions until you can find a doc who is halfway decent at least. Hang in there!

As for me, I finally got ahold of my GI regarding my failed prednisone taper. I had tried going from 10 mg down to 7.5 mg but ended up in a lot of pain and had to go back up to 10 mg. He's writing me a prescription for 1 mg pred tablets, so that I can taper from 10 down to 9, to 8, and so on. Hopefully that goes much more smoothly.

I'm a bit grumpy, though, I have asked my GI several times now if I can try LDN and he hasn't had an answer for me yet. I feel like it's very low risk and potentially high reward (seriously the worst side effects that I've read about are, some people had trouble sleeping for the first week that they were on LDN but were fine after that - I can totally deal with a week of poor sleep!). So I emailed my GI yet again asking him about LDN for the 3rd time in as many weeks. I know he wanted to look into it himself as he knew almost nothing about it, but come on already! Once I'm off of pred, then I'll only be on Lialda, and that's apparently not enough to keep me in remission by itself anymore (I was on Lialda when this current flare hit me). Lialda's helping but it's not enough by itself, which is why I want to try LDN (my GI already said no to biologics and no to immunosuppressants, so my options are really limited - the joys of being undiagnosed). Sooo, I'm still just sitting here waiting for my GI to decide on LDN. After 3 weeks of waiting, I'm not hopeful, but don't leave me in limbo. I really do think LDN could help me, I just need him to give me the green light on it although I'm guessing it's not going to happen now. Bleurgh. This makes me grumpy!
 
Cat I'm glad your insurance is paying more than you thought, it must be a relief! I'm so grateful that we have free healthcare here, for now at least.
I know doctors can do a direct admit so you bypass A&E and just go straight to a ward so I don't know if that's what will happen or what. I will know the plan in less than 24 hours though!
 
Good luck tomorrow, Sarah! Update us when you're able to! I hope you can make some real progress in terms of treatment, hospitalization, feeding tube, etc.

So on the subject of my insurance paying a lot, I finally got some paperwork with some actual numbers on it in the mail yesterday. It looks like my hospitalization cost, before insurance, about $27,000. !!! After insurance, it looks like I'll be paying about $800 out of pocket (I already hit my deductible, and my hospitalization meant I also hit my out of pocket max). Holy cow! I'm glad I'm only paying $800, could have been a LOT worse! I don't know if those are the final numbers, but from what I could tell that's what it cost and that's what I'll be paying. My jaw literally dropped when I saw $27,000 on the letter. What an insane amount of money! $800 feels absolutely easy and insignificant compared to that.
 
Sarah - Today's the day, huh? I'm over here hoping things go in a positive direction for you!!

Cat - Hospital bills can be super crazy high! I'm glad your portion is reasonable! Good luck with the new taper plan.

I had my TAP block yesterday. I managed to get through the procedure itself without sedation, which was nice, because I don't like how alert sedation makes me feel. Not even any oral valium. Just some nice calm breathing and mindfulness (figure I've been doing that for the pain itself for long enough, I could manage it for a short procedure!).
However, I go to a teaching hospital. Which means sometimes a student is the one doing the procedure. Now, I really don't mind - I figure, they have to learn at some point, and when they learn on me, there are actually 2 docs in the room (student and fellow/teacher), etc. However, this time, I felt like a bit of pincushion. Poor girl just couldn't the epidural needle right where the fellow wanted it (they do this under ultrasound guidance) so there were a lot of micro adjustments -- and just so you know, every time they "pop" through a layer of muscle, you feel it! I'm not sure exactly how I'm supposed to feel yesterday and today, but I'm not feeling "oh, hey! the pain's all gone!" I actually feel a bit sore. They also decided to inject the pain meds a bit higher than the pain is - I guess since gravity will draw it down? To top it all off, yesterday I had vicious D, and some blood in it -- and I have no idea if it was relation to the procedure or not (is it possible that super thin needle punctured my colon? In theory, yes!), but since I tend to get blood from that fissure when I get bad D, I assumed it was that.
 
Hope you're OK Sarah! Wildmtnhoney, I'm glad you got thru your procedure too. That procedure sounds scary, esp. without anesthesia, but I understand not wanting anesthesia if you have problems with it. I also hope it gives you much needed relief.
I'm continuing to have what I think are kidney problems (did I mention that here or was it just in another thread?) as well as GI problems. I went to the urgent care clinic awhile back for symptoms of what I thought was my zillionth UTI, and since I had flank pain was treated for kidney infection as well. The immediate culture showed blood in the urine, which I had seen visibly also (I've had a hysterectomy so definitely not womenly issues) and elevated white blood count, indicative of an infection. Well, after growing out the culture for the requisite couple of days, it did not show any bacteria growth, so not UTI but I was told to keep taking the cipro for possible kidney infection. After a day or two on cipro, I was feeling very slightly improved but not well (still have urgency, burning sensation and back pain), and whatever is going on has become stagnant, not improved at all since. Add to that increased nausea (I'm sure from whatever is going on) plus my typical GI problems, I'm not a happy camper. Looking forward to hopefully getting some answers at the nephrologist (kidney doc) next week.
 
Hope you're OK Sarah! Wildmtnhoney, I'm glad you got thru your procedure too. That procedure sounds scary, esp. without anesthesia, but I understand not wanting anesthesia if you have problems with it. I also hope it gives you much needed relief.
I'm continuing to have what I think are kidney problems (did I mention that here or was it just in another thread?) as well as GI problems. I went to the urgent care clinic awhile back for symptoms of what I thought was my zillionth UTI, and since I had flank pain was treated for kidney infection as well. The immediate culture showed blood in the urine, which I had seen visibly also (I've had a hysterectomy so definitely not womenly issues) and elevated white blood count, indicative of an infection. Well, after growing out the culture for the requisite couple of days, it did not show any bacteria growth, so not UTI but I was told to keep taking the cipro for possible kidney infection. After a day or two on cipro, I was feeling very slightly improved but not well (still have urgency, burning sensation and back pain), and whatever is going on has become stagnant, not improved at all since. Add to that increased nausea (I'm sure from whatever is going on) plus my typical GI problems, I'm not a happy camper. Looking forward to hopefully getting some answers at the nephrologist (kidney doc) next week.
Hope you feel better soon, Sandy.
 
Sandy, that sounds horrendous! I think it was this thread where you talked about that previously (although I think pred is affecting my ability to remember/think so I could be wrong). Is there anything that helps with the symptoms that you've found? Like, I know those iodine pills, I think they're called Azo? - I take those sometimes when I have a UTI, and they do seem to help with the urgency and burning. But if it's not actually a UTI, I don't know if those pills would help. Ugh, it just sounds awful, I wish I could be more helpful. I can't stand dealing with a UTI for more than a day or two, that you've been dealing with these symptoms for this long is just horrendous! :( I'm here if you need someone to vent to.
 
Thanks Ron, I always know I can count on an encouraging word from you. That means a lot, and puts a little ☺ on my face.
And thanks Cat, I really needed that right now. I'm so completely worn out from this, I am on the verge of tears. I'm listening to a mix of classical and movie soundtrack music right now, it's my way of "drowning my sorrows." (I know I don't have the typical tastes in music.) I also know Doug knows that I've not been well, but I handle my not being well completely different than him, and I know he doesn't really have a clue how miserable it is (also because he's never had a UTI, like most men haven't). It's nice to know somebody is there who understands how miserable it is. Thanks, that means a lot.
 
I have to add, don't take me wrong, Doug is a good, compassionate man, (how can be not be with what he had been through, both physically and in some family situations), I just know he doesn't get this particular problem. I find that if I were to express how I really feel, I would do nothing but whine, and I put enough on him already.
 
Sandy, my hubby definitely doesn't understand UTIs either, but he has had kidney stones several times so he can understand some of it, but yeah, when I need to vent about UTIs I definitely turn to my female friends and/or the forum! Fortunately (knock on wood) I've only had one so far this year, although it picked a really bad time. My dad, for his birthday, wanted to bring the whole family to the taping of a super boring radio show that he likes, but I woke up with a UTI that morning. It was 2 hours of sitting in a hard wooden seat and being really nauseous and trying to get up quietly every 20 minutes to go to the bathroom. It was not a fun time!

And in terms of having weird musical tastes, I really like Japanese and Korean pop, so your tastes sound pretty darn normal to me! If I may, I'd like to share this song with you - this is my favorite song ever and my favorite singer. And it has English subtitles so you can understand what she's saying. When I first heard this song, I don't speak Japanese and I didn't have the subtitles/translation in front of me, so I could only understand the few parts where she sings in English. But it still made me cry. I had just been through my first year of illness, which was a year of hell. I spent that year suffering and so ill and fighting so damn hard for doctors to take me seriously. And finally they did. So to hear Utada sing, "It's all in my head" - I burst into tears when I heard that. I finally knew, for sure, that it wasn't all in my head, and hearing her say that sort of brought back that whole year of hell for me and the uncertainty and everything. And for a bit I was really sad, and then she got to the part of the song where she says, "Courage." And I was like, yes, I've had to have so much courage! It was hell but I came out of it and I'm strong and awesome! At that point, I realized that she must have been through a similar journey to mine (she had and has, although not to do with chronic illness, but she's been through a lot herself, and she is strong and awesome too) and I felt like she was a kindred spirit. This song, it's my favorite because of that, because of how it spoke to me and still speaks to me. So anyway, here it is. Show Me Love, Not a Dream - by Utada Hikaru.

http://fansoop.com/2012/10/live-utada-show-me-love-subbed/
 
That was absolutely beautiful Cat! And so real! Thank you very much. (I'm keeping that one.)
I've told Doug, half jokingly, but half real, to put on my tombstone "I told you I was sick." Like you, however, I believe I finally have doctors taking me serious on my complaints. This will help in the tough times though.
 
Sandy, I'm so glad you liked it! She's been my favorite singer for years. Her story is really interesting, she's Japanese but was born in NYC and lived there for the first 12 years of her life, so she speaks perfect English and Japanese. Sometimes she sings in English but usually in Japanese. What she was specifically singing about in that song, she was a pop star since she was a teenager, and she had people taking care of everything in her life. She had no concept of money, of how much things cost, how to pay her rent, how to do a lot of basic adult things, etc. She said in an interview that the straw that broke the camel's back was, she went on vacation to the countryside, and she didn't know what to do once she was there. Somebody told her it was nice to take a walk, so she took a walk outside every day. She had never done that before, and it was nice and she had new experiences with each walk, but she realized that there were probably a lot of basic life things like that which most of us take for granted but that she's never done before. She was extremely insulated by her agency and the nature of her career. So that song, it was her grappling with the idea that she had to walk away from everything, her career and music, and try to become an independent adult and learn what it is to actually live in the world. Her striving for her freedom.

So she did that, she walked away and went into the world and learned to live like an actual person, and along the way she met a man and fell in love and got married and had a baby, which is great. But, her mother also committed suicide during that time, which is awful. So Utada had walked away from her career for 6 years, and literally just last month she released a new album, which is a tribute to her mother and is her way of working through her grief. It's a really great, sad, incredible album, and she made it on her terms and not the record agency's terms. I can post you more videos if you'd like to hear more of her music. Her songs have gotten me through a lot of rough times.
 
Sorry for not updating yesterday, between migraine and processing I just didn't feel up to getting the laptop out.

So, first off, my usual dietician was on some training so I saw a different one which obviously isn't ideal but there we go. But she will hand over to my usual one so I don't know if maybe I will get a call or something. So, we are going to give some more concentrated supplement drinks a try, so I will have something like 30ml three times per day. I'm also going to try making smoothies to see if they help get a bit of nutrition in and she will send me some ideas for reflux friendly smoothies. She wants me to try eating little and often and is also going to send me information about eating ideas for nausea. So that could help. She said if soft foods and liquids work better for me then that's fine, basically I get all my necessary vitamins and minerals from the tablets they have me on and the Ensure Juce so anything I can eat is good as it's calories.

They still haven't been able to get hold of my GP or my blood results which is frustrating, so I'm not sure how much things can move forward without those.

So, tube feeding. Still no definite answer on that for the above reasons. However, I spoke to this dietician about it and she seemed quite positive, she said I would probably start to feel stronger and have more energy within a week on tube feeds. So that would be amazing if we can go ahead with them. I told her I'm open to trying it, so at least they know that. She did say it might be possible to do it without hospital admission, they could do it all at home so the district/community nurses would visit, the dietician would visit and show me how to work everything then I think the district nurses would monitor me to start with too.
So although there is no definite answer yet I guess at least from how she spoke about it, it is something that is doable and can be considered.

Yeah so I guess I'm a little disappointed that there's no definite answer or date for anything as yet, but at least it's not all negative.

I also looked back to when my last gastro appointment was and it was just over three months so if I don't have a date for a next appointment in a couple more weeks I will chase that up.
 
Sarah, sorry to hear there are still no solid plans for you. I hope that the smoothies help and that you are able to do tube feeding one way or another! How frustrating, though, it seems like you're so close yet so far. :(

I'm in a similar boat in terms of being so close and yet so far, if that helps you any. My GI *still* hasn't given me an answer as to whether or not I can try LDN. (Everything I've read says that it's very safe and could help and almost certainly won't hurt - the main side effect people have reported was a bit of difficulty sleeping the first week, and that's it - and some people have great results with it for IBD.) My GI has literally said nothing to me on the subject and it's been over 3 weeks now. I've sent him several emails on the subject with no response. But, when I sent him an email about prednisone and tapering, he responded within like 2 days. Hmmm. So he's definitely seeing my messages and just ignoring me? Not super happy about this.

So I'm still waiting. I see my GI again middle of next month, right about the time when I'll be done with prednisone. At that point, if he still hasn't responded about LDN, then I'll just be on Lialda. And Lialda didn't keep me from having this flare, so I'm nervous. I don't have a lot of other options med-wise since I'm still technically undiagnosed. It sucks and I'm getting frustrated. Why won't he just respond one way or the other? I just want to freaking try LDN, just let me try it. If it works, wonderful! If it doesn't work, then we'll figure out a plan B, but it shouldn't give me side effects or do me any harm either. Ugh, I'm just venty today. I actually thought about (probably illegally) buying naltrexone online from an overseas pharmacy and compounding it into low-dose naltrexone myself - I seriously googled that and found instructions on how to do it and a place in Thailand that will ship naltrexone to the US without a prescription. I'm sure my GI would kill me if I did that on my own, though. But if I have another flare like the one I've just had, that might also kill me or at least seriously knock me out of commission for a long time - I mean, that flare started in July and I'm still working my way out of it (I'm still on pred and low-FODMAP diet after all) months later. So I'm still keeping that idea in the back of my mind, just in case. It'd be an act of sheer desperation if I took that route, but sometimes chronic illness makes us have to do difficult things. Ugh.
 
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