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I'm glad GPs aren't in control of this (the specialists at the hospital are). Whilst doctor #1 took everything seriously, when I once visited doctor #2 (as #1 wasn't available), #2 just told me that they'd probably never find a cause. I assume that means that if he was in charge I'd be diagnosed with IBS, despite my 398 calprotectin level. Then he prescribed me some boxes of immodium, which are next to useless.

I feel that without a diagnosis, some GPs aren't just going to take symptoms seriously.
 
Hi Everyone,

I am a 23 year old female living in Chicago. The story of my undiagnosis is long and frustrating. I've been sick since February 2012. It's been 2 years and 7 months and I'm still sitting in a limbo of uncertainty that's depressing and upsetting.

When I first got sick, I was only extremely sick for about 4 months. The worst part for me was and still is the constant nausea. It rarely ever goes away. Sometimes my only choice is just to go to bed because that's the only time I am unaware of how sick and nauseous I feel, and I find myself sometimes shutting myself in my room at 7pm to try and make myself fall asleep. In those first 4 months, along with the nausea, I experienced frequent diarrhea and stomach cramping. I began missing classes (I was a college junior at the time) and missing out on doing things with my friends. I had several appointments with my gastroenterologist but nothing really came out of them. I was prescribed multiple different medications to control the nausea (ones that are given to pregnant women and cancer patients undergoing chemo) but they didn't help in the slightest. I lost so much weight because I could barely eat at all. I underwent an endoscopy in which my doctor found "chronic inflammation" but nothing that could be linked back to a specific diagnosis.


However, shortly after all this, I went into a period of remission that lasted a full year. I would still get nauseous once in a while, but it was no longer controlling my life. I began eating again and gaining weight back. I had a relatively healthy senior year and a happy graduation.

Then, a few months later, it began again. And I didn't ease back into the symptoms. They came back suddenly and in full force. It's now been a year and 4 months since the symptoms restarted without any ease or remission. Same thing as last time; diarrhea, cramping, and worse of all nausea. These days, not a single day goes by where I don't feel debilitatingly nauseous for at least a portion of the day.


What is not undiagnosed is the anxiety that my illness has caused. I've developed a real fear of getting sick or experiencing the symptoms of my illness while out in public. I'm constantly asking myself what if I suddenly get sick while I'm there? What am I supposed to do? Big events scare me because of the potential of getting sick in the middle of them. My doctor has me on two different anxiety medications which help a little but not much.


I'm upset and depressed. I want answers. I am young and want to look forward to happy and full life of events that I don't have to be worried about getting sick at. I want to be able to eat a meal without feeling sick within 5 minutes of eating.


The worst part about being undiagnosed is that with each new thing you try, whether it be diet, medication etc, that doesn't work you begin to lose hope that there is something out there that will finally help you. Can anybody else relate to this? Or offer any other advice?
 
Sup Chicagogirl,

First if you will not push hard that you need additional tests and tell them symptoms are only get worse, they'll just end up throwing more anti anxiety pills until ur in the er.

My GP tried to sign me up with antidepressants, as soon as I read the safety label they were in the trash along with his business card.

You said chronic inflammation? It has to be somewhere, and they had to know a general idea of how severe. Until you can afford more testing, food modification is sometimes helpful for those saving up for more tests, or moreso, anti acids like ppis can do temporary relief as do some painkillers. But yea dont start taking painkillers get more tests or get a different doc, what I've learned most is you're the first person who's gonna get your health in order

Goodnight folks
 
Chicagogirl - hello! sorry to hear you are having such a rough time. Nausea is one of my predominant symptoms too, and when I am having a flare-up it is uncontrollable; whilst the rest of my symptoms are reasonably controlled, the nausea is ok as long as I take the drugs - some days its a pain, but overall ok. I agree with ezgoindude, can you find a new Dr/you need to keep pestering them until someone takes you seriously or you get some answers. Hope you will get some relief soon! In the meantime, feel free to vent your frustrations, ask any questions or simply say hello on here - you are not alone.
 
Evening guys and gals - I'm afraid you are about to get the sharp end of my frustrations! I apologise in advance...

So, yesterday I saw my gastro consultant and had a discussion about what was being particularly problematic - I explained that the main problems were fatigue and worsening joint pain (although my abdo pain and nausea are not great they are better than fatigue/joint pain). We discussed options (including increasing some of my current meds), and decided to risk diclofenac as NSAIDs are the first time treatment for arthritis in those without GI problems. He was a bit off with me, but I was feeling quite rubbish so I put it down to that.
Unfortunately the diclofenac and my GI system appear not to get on, so I rang his secretary today to leave a message, as instructed. He happened to be there, so I spoke to him and explained what had happened and his reply was 'ok, just carry on with everything else'. When I questioned this with 'what are we going to do about the joint pain' he sighed and said 'well I could refer you to rheumatology' but once again was off with me - I agreed to this and put the phone down. What I am so annoyed with is firstly the apparent lack of interest, and the need to have to point out that doing nothing isnt acceptable; yesterday there were other options and today just a get on with it. I don't expect him to remember case details, but he could have asked or said 'let me have a think and ring you back' and looked it up, or asked me what I wanted to do and I would have brought up what we discussed yesterday! He is normally excellent, and is the only one who has ever taken me seriously and tried to offer help despite no firm diagnosis. I know everyone has a bad day, but it just left me hitting my head against a brick wall. So I guess I have to wait for a rheumatology appointment, and I know I am really really lucky to have had help and support this far, but I just wanted to scream!!!

Thanks for the rant. Hope you guys are ok and get some answers soon. Hugs to all! x
 
Has anybody here brought up their issues with anxiety with their GI? And if so, did they do anything or just tell you to speak with your GP?

I need some serious help on this front because my anxiety plus pred is sending me crazy, quite literally.
 
Those in the UK (I was reading your posts about PIP) - I got some information from a girl earlier that may be helpful. Although you're unlikely to get PIP, you can fill out a HC1 form for low-income (if that applies to you) which gets you free prescriptions, dental and optician treatment.

You can order that here

There's also a form to receive refunds of any health care costs you have been charged.

Those with permanent fistulas and stomas can also receive medical exemption. Since this is the undiagnosed forum I doubt that will apply to many, but I know that there are many who are diagnosed in this group. Plus it may come in handy for future reference (if surgery is required post diagnosis).

Info on that here

We can also get prepaid prescription certificates here in the UK that spread the cost of prescriptions over a year, making it cheaper in the long-term. You can either pay for 3 months which is £10 a month or a year for 10 months costing the same. So the yearly one paying over 10 months is cheaper in the long-term.

Here's a link for that

Hope this helps! A lot of people are struggling to get accepted after their PIP assessments at the moment in regards to IBD, so I'm waiting a few months until I apply because CCUK are planning on forwarding more information on the disease in order to show them our day-to-day struggles more clearly.

Lewis :)
 
Hey LewisS - Sometimes being outdoors can be a help - and keeping busy - ceaning the house, exercise, or a project of some description?

I would def speak to your GI about it - They may have some ideas, and If they don't I would contact your IBD society and ask for the name of a GI or GP who treats patients with both. - Humans have many parts, that affect each other - many doctors forget this and it is not useful!
 
Hey guys, I have a diagnosis.

Lymphoma, it's kinda everywhere, lungs, liver, diaphragm, deep in groin.

Waiting on surgery for staging and biopsy.

Guess I'm not undiagnosed any more?
 
lsgs said:
Hey guys, I have a diagnosis.

Lymphoma, it's kinda everywhere, lungs, liver, diaphragm, deep in groin.

Waiting on surgery for staging and biopsy.

Guess I'm not undiagnosed any more?
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I guess you're not. But don't be a stranger. Keep us thoroughly updated!

Hope the surgery goes well and you start treatment to beat this. :thumright:
 
Wish me luck, seeing the GI consultant tomorrow! Hopefully finding out the results of my MRI.

I'm also making sure to take a picture down with me of what I did last weekend - 'pooped' a nice blood-mucus mix. It's very bloody, and surely with blood and a calprotectin level of 398, they can't just give me an IBS diagnosis.
 
Oh lsgs! I don't have enough words to say how sorry I am to hear about that diagnosis! I wish I could do or say something that helps. All I can really say is that I'm here for you and keeping you in my thoughts. If you want to PM me or add me on facebook or anything, feel free. Sending you a big giant gentle hug!
 
ARGH. MRI came back (like the colonoscopy biopsies) saying minor abnormalities, not enough to give any kind of colitis diagnosis. Apparently there was a patch, but not bad enough, so it's IBS.

Consultant says that he thinks I had three things coincide. First an infection to raise my calprotectin level, then IBS to explain the symptoms (6 month period 50x worse than it's ever been in my life), then hemorrhoids to explain the bleeding.

I just don't see it. Can IBS be so bad that it is debilitating? I have had diarrhoea up to 10 times a day, bouts of bowel incontinence where I'll poop all over the carpet and won't even feel it or realise I've done so, and have had some days where I am completely housebound because I am living in the bathroom.

Consultant did say that there's two other possibilities. Firstly, that something could be there that hasn't been spotted, so need to sort out another calprotectin test. Secondly, the minor abnormalities could have been because there was Crohn's inflammation there, but it had gone down by the time the tests were run, and they only caught the last remnants of it.
 
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'Screenshot or it didn't happen' - That's doctors nowadays.

I think that if you tell them you were feeling awful at your graduation party, they would go like 'But you were smiling in these pictures! No way you were feeling awful!'

Don't welcome frustration in. Try to get better, and focus on that. :smile:
 
HellPatrol said:
'Screenshot or it didn't happen' - That's doctors nowadays.

I think that if you tell them you were feeling awful at your graduation party, they would go like 'But you were smiling in these pictures! No way you were feeling awful!'

Don't welcome frustration in. Try to get better, and focus on that. :smile:
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I have actually gradually been getting a bit better in recent weeks... There is a very positive possibility that if it was actually inflammation I could be leaving the maybe-was-a-flare, and everything'll be hunky-dory. It's been a terrible 6 months of poop.

I guess if it was Crohn's, it'll be back. And if it comes back, I go to my GP and get those tests redone ASAP.

I'm actually terrified that it's IBS, because I want to know the cause, and I want to have some control over attempting to treat it.
 
Yeah, I totally relate to that. It's just that I find that placing high expectations on an appointment can turn out to be really disappointing.
Going up and down (abnormal test results-high expectations-appointment / doctors saying you're ok and sending you home) simply wears you out.

I came to the sad conclusion that everything I do that makes me feel ok and relieves the symptoms (V E R Y strict diet) pushes me a little farther away from the diagnosis, because of that 'pics or it didn't happen' thing. Had I been tested a year ago, it wouldn't have been the same. The symptoms list that dates a few years back gets automatically thrown out the window if results come back seemingly normal, even if that is the result of months or years of working on symptom management (and getting some relief), and I ain't harming myself so they can see it.
 
It's good at least that you found a way to control things, but then not having a proper diagnosis must be frustrating!

I like your 'screenshot-or-it-didn't-happen' thing.. I had debilitating symptoms, unlike anything I've ever experienced. That can't just be brushed aside, something was going on.
 
Borg said:
It's good at least that you found a way to control things, but then not having a proper diagnosis must be frustrating!

I like your 'screenshot-or-it-didn't-happen' thing.. I had debilitating symptoms, unlike anything I've ever experienced. That can't just be brushed aside, something was going on.
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Exactly. The whole point of being diagnosed is improving your quality of life, but there shouldn't be a need to say it.
 
HellPatrol said:
Exactly. The whole point of being diagnosed is improving your quality of life, but there shouldn't be a need to say it.
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An awful lot of doctors out there sure seem to have this needed to be told to them.

Some funny stuff, last I was in the hospital was because my mother called a rescue, I was in very severe pain for hours and wouldn't go or call, she finally did behind my back. EMT's arrive, I tell them straight out, I know I have some type of urinary infection, and the very severe pain is probably kidney stones.

First one, "What drugs are you on ?"

Me, "Nothing."

Him, "You're lying, we can't give you anything for the pain, we have morphine, but your eyes are so dilated I know you are on something and you're lying."

Second one, "Its not kidney stones, you're probably constipated, and freaking out from whatever you're on, I had kidney stones, and I was in a fetal position, crying like a baby, 2 MM stone, you'd know it and you're holding your hand on the wrong place on your back."

This is from a guy over a half and again my size, so I guess he assumes he's a "tough" guy.

Me, "Whatever, just get me there asshole."

First one goes back to the front door, asks my mom, "Whats he on ?"

My mom, "Nothing, just some antibiotic's he had around."

They take me there, after over a half an hour they start taking blood and add IV drip, this was after I had been in pain for hours at my house before.

Doctor comes in, "Where's the pain, how bad is it, and do you need anything ?"

Me, "Nope, as bad as it was, its over now, just 10 minutes earlier I would have said differently, but I don't need anything now, actually sorry I came."

Told him where the pain was, and what I thought was going on, they take a urine sample, already had my blood sample and send me for X-rays or scans, whatever they are, wasn't a sonogram.

I get back from that, doctor comes in, confirms I have an infection, asks me how I knew.

Me, "I get them all the time, I have chronic prostatitis, so I can "feel" them when they are coming on."

Him, "Ok, we just need to wait on the results radiology, we're giving you some antibiotics with your IV now."

A while later, he comes back in, "Well, you were right, you had a kidney stone, if you had come in a few hours ago we could have used sonics on it to try to break it up, its in your bladder now."

Me, "Oh, I guess it wasn't a bad one then."

Him, "Well it wasn't a small one, its 3mm."

Told him about the EMT's and he agreed, they were assholes, my eyes were that dilated from pain it turns out, though he never saw it, as by the time I saw him, I was feeling so much better.

He wanted me to stay overnight at least, I said no, he said we can give you pain killers if you stay, I said, thats ok, I'm fine now.

Sent me home with a one day supply of vic's, flowmax and antibiotics. :D

Now, I know that was just EMT's, but I've got some dozey doctor stories as well, that one is just really fresh on my mind, and I think I've spammed enough in here for a bit. :ywow:

Just thought of a "cure" for severe pain, completely different, more severe pain, when that goes away, all you can think is that you feel so much better. :D
 
Yeah, some people have that awkward sense of justice. Like if arguing with somebody who says he's in pain would have some positive outcome at all.
 
I just found out the location of where my small bowel patch of minor inflammation was.

Terminal ileum.

Curious. Very, very curious. It just so happens that that's hotspot for Crohn's to be, and that's where the colonoscopy was unable to be completed (suggested by the colonoscopy guy to be due to inflammation).

It's almost as though there was inflammation in the terminal ileum that had decreased by the time of the MRI.

I am now so frustrated that the colonoscopy wasn't able to be done in the terminal ileum, because if it had I would know, one way or the other!

Ho hum, wait for the next flare I guess, whenever that may be.
 
HellPatrol said:
The symptoms list that dates a few years back gets automatically thrown out the window if results come back seemingly normal, even if that is the result of months or years of working on symptom management (and getting some relief), and I ain't harming myself so they can see it.
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This part I very much understand and it worries me. When I was told I have chronic sciatica I was later sent to a state doctor for a disability exam, besides a slight limp and lose of power in my left leg he termed it not very severe. And thats exactly what I said to him, I;m not going to go pick up a TV or walk a few miles or stand up for hours just so you can see me writhing in pain. Unless you're at your worse they seem to want to minimize things, I don't see how that helps a patient at all.
 
juggys69 said:
This part I very much understand and it worries me. When I was told I have chronic sciatica I was later sent to a state doctor for a disability exam, besides a slight limp and lose of power in my left leg he termed it not very severe. And thats exactly what I said to him, I;m not going to go pick up a TV or walk a few miles or stand up for hours just so you can see me writhing in pain. Unless you're at your worse they seem to want to minimize things, I don't see how that helps a patient at all.
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I think that's the consequence of leeches trying to live off benefits by trying to fake some health condition.
Somebody has to pay for that, and that is either the tax payer whose money goes to feeding these parasites, or people with real problems that get filtered in order to prevent this type of fraud. There should be a procedure to clear all doubts, but meh, it costs more money.
 
Oh my sciatica being made light off by a state doctor isn't what worries me, its well documented. I should have quoted your whole statement I guess, instead of the part that bears right on it.

What worries me is I am changing primaries and the new one won't understand some of the stuff I do and try to tell me to live normally and then see how it goes, like my eating, or drinking soda, two sticks of string cheese a day, stuff like that.

I eat a meal a day maybe, because of nausea, no appetite, and I actually feel worse after I eat.

I drink soda for the carbonization which also helps, I actually feel worse just drinking water, plus as my old primary told me, I am probably getting most of my calorie intake I need daily from the soda.

The cheese thing I do to "regulate" me, since I had no meds for over a year, this worked, although I guess I can just ask for the meds again, which I will.

It really surprises me more on these boards aren't like me with the eating,( I've spotted a few, but just thought there would be more ) as it makes you feel worse, and of course, what goes in, must come out. :D
 
Hello!

I feel awful just coming back and posting about myself, but I have a few updates that may be helpful to others just getting diagnosed too.

So I saw my consultant for the first time yesterday and it seems things are a little more complicated, not bad complicated, just complicated. Azathioprine isn't an option for me because I lack certain enzymes (could anyone shed any light on this?) so biologics are my only option. He gave me a choice, but almost chose humira for me because he's very age aware in his treatments and said that he wouldn't want to disturb my job seeking lol.

I also have crohns in my entire bowel meaning that surgery isn't an option, yet. He said at my age he wouldn't want to consider surgery because it would mean a complete removal of the bowel and a permenant bag. If it's something I needed in the future, then so be it, but I agree that right now wouldn't be a great time! I also have short bowel, not entirely sure what that is.

Tests for TB also came back inadequate, so I have to have further testing before starting biologics which I'll be going in for tomorrow morning and get the results on Monday. Really hope it comes back negative otherwise it's 6 months of antibiotics alongside the humira. :/

It is what it is and overall I'm happier for knowing because I feel like things are moving in the right direction now and it's time to start living my life! No more wondering why I'm not well all the time...

Lewis :)
 
If you lack certain enzymes it means you won't absorb whatever it is, it would just pass through you so it would be pointless to use it.
 
Hey Lewis

Good to hear from you! - I have been assuming that you were feeling better and were slowly 'leaving the nest' - not sure if that is a very good term?

Anyway it seems as though your consultant is making the right kind of noises and seems to know his stuff at this stage which must be a comfort of sorts for you. I am sorry that this journey is becoming more complicated for you, but as they say - it does seem to be a marathon rather than a sprint!

Please keep updating us - if nothing else we can live vicariously through you!


Small me update:
I am awaiting my pill cam next wed and deciding - kind of like Hell Patrol and Juggys are mentioning above- whether to come off the medication (doxycycline which we are not sure why it works anyway and I should prob not be on it - long story) so my symptoms get worse - but not too much worse - and what is the right amount of sick to figure out what is going on, but that I am not a burden to my Mum who I am staying with (and who has a report due) , and so I can look after my daughter, and drive there and back - Oh and get my assignment done by the end of this month! -
I really don't want to come off the doxy, but if I don't get answers with this test I will prob end up with the 'severe IBS" label - Which is not cool:(

I am kind of contemplating putting off the test for a month so I can be 'properly sick' when it is done, - at this stage another month of the doxy will make no difference, but part of the problem is that I think the doxy is starting to lose effectiveness - It apparrantly has an anti-inflammatory function among other things. But my insurance approval is for a fixed date, so changing it would muck heaps of other people round...GRRR
And I m getting all stressy about my assignment too!!! - Which I have had to delay as my 16 month old has just got tonsilitis and we have had a virus for...well this is the 3rd week and husband has just gone to get antibiotics as he now has a chest infection.

I would say it never rains but it pours, however we have had a drought for 21 days here (Yes, that is a drought where I live!)

This is not small after all - oh well

Is anyone else having trouble getting the threads to load properly?
 
Nah, I'm not ready to fly this nest just yet! The company is too good. :)

Ew, I've just read that short bowel in those that haven't had surgery means more than 50% of the bowel is necrosed? Or not functioning. Idk I don't get it and it sounds scary lol.

Gotumtum, are you sure the test wouldn't still be as effective regardless of how sick you are? Remember, inflammation leaves behind a lot of evidence, like scarring. PLUS, I never feel sick and my bowel looked like I'd swallowed glass. Don't leave it too long because damage is slowly being done that could be prevented!
 
I would think he meant you were born with a short bowel, as when its necrotic, it has to be removed. Necrosed means dead tissue, he wouldn't be leaving it in you, he'd be rushing you into surgery.

You can be born with a short bowel, its considered a birth defect.
 
Good to hear you'll stay lewis:)

Good luck with the short bowel thing...!

I really don't know much about what the test shows normally or what the doxy would hide. Trying not to get 'my hopes up' if that makes sense. And don't know enough about crohns or doxy!- The doxy stops my d and v and pain - so I assume it is kind of like a really mild steroid dose which take the worst off the inflammation - just a guess. My concern is that as it removes the main symptoms (not the feeling crap and mouth ulcers and other stuff - now with dry eyes as a bonus!) that it might temporarily remove any obvious signs. - It may just be SIBO but who knows really. If it is crohns there are several scenarios - either I have had this for 15 months - or maybe 6 years plus? But for the 15 months I have been on the doxy so I may not have developed scarring. Then again - why would I have vomiting if not partial obstructions? I think I need to stop analysing it and just get the test over with. I am dreading the prep - I have to take fleet (not enema) and its disgusting. I just don't want to have to go through the prep and travel and hassle to have a 'nope - you are fine/IBS' especially if it was the doxy preventing the diagnosis. My colonscopy was clear and my other tests are not really showing much ( my CRP was up a little, and my Occult blood was positive once, but they can just write those off as anomalys)

Yup I hear what you are saying about the damage - But the fact is that after 15 months that boat has sailed to some extent. - I am a bit bitter about that aspect, and the time that it has taken to get this sorted, but that is another story, and I am lucky to have insurance.
 
Lewis you are just a wee soul. I have found it interesting reading all your comments and I have found myself telling people about your diagnosis lol. Hope you are coping ok with it and getting your head around it. Keep the positive attitude as hard as it may be sometimes! xx
 
Suzi86 said:
Lewis you are just a wee soul. I have found it interesting reading all your comments and I have found myself telling people about your diagnosis lol. Hope you are coping ok with it and getting your head around it. Keep the positive attitude as hard as it may be sometimes! xx
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Aw, that makes me happy haha! I'm glad you've taken something good from my posts, even if most of them are rants.

Had my latent TB test done today, hopefully start humira next week, have an upper endo and MRI later in the month to find out the extent of my crohns AND I have a GP appointment tomorrow morning for my anxiety. Things are looking up from here!
 
Best of luck with that the endo and scan. I also have a MRI this month so no doubt we can compare notes. Great you are officially diagnosed onwards and upwards now and no more wondering what the hell is causing all the pain etc. Anxiety is a horrible thing but once you've conquered that you'll be sorted :)
 
Juggy69, sorry to hear you had such a rubbish time with the EMTs who came to you, and glad you got a better reception in A&E. Most (if not all) of us have been there with a wide variety of healthcare professionals who seem to think they can magically tell what you are feeling. Some of it, as you say, is from people who take the mick (so from a personal perspective the patient saying new 10/10 pain, but can hold a long conversation and update their facebook/twitter with 'being rushed to hospital') really do cause problems for people who are in genuine pain.

Lewis - the enzyme you are low or lacking in (TPMT) is important because it is involved in the safe and effective metabolism of azathioprine/mercaptopurine and those who have low levels or no levels of it are at higher risk of developing serious and potentially life threatening side effects. Normal levels dont mean you wont have side effects, but the risk for low levels is very significantly higher. Glad you are getting somewhere though, sorry its so complicated, and hope you continue to improve :)

Sorry to hear people having a tough time with idiotic doctors, ridiculousy dismissive 'severe ibs' diagnoses and waiting for more tests - I hope things start to improve for everyone soon :)
 
Hey everyone

Just a quick message to say that I am all packed up and ready to travel for my pill cam on Wednesday. I am okay with the concept of the procedure itself - assuming that the thing does come out as it is supposed to. (Touch wood!)

I am a bit grumpy about having to do the prep GRRRR!
And a bit apprehensive as the results of this test are pretty important.
Trying not to dwell on it and get my assignment done!

How long did peoples results take to come back?
 
Hope all goes well gotumtum! There's not need to dwell on anything because this is something that's hopefully going to give you some answers. Well, there's the prep to dwell on, but don't! :)

Get my latent TB test results tomorrow - really really hope it's negative so I can begin treatment as soon as possible. The thought of antibiotics for 6 months would be horrendous. Fingers crossed that's not going to happen and I can start humira in the coming week!
 
My MRI also came back totally normal....no inflammation! When I had the colonoscopy it also looked ok but biopsies revealed slightly active ileitis and the anastomoses site revealed severely active chronic enteritis! The doctor was shocked as it looked normal to the naked eye! Weird!!!:shifty::shifty:
 
Got a GP appointment booked for a week's time as my biopsies should be back, and I need to sort out my prescription. I already deal with an inept pharmacy and I keep getting sent things I haven't taken since my Hospital admission. Fair is fair I should have sorted that out before now!
 
Hey LewisS! - and everyone else:)

I am having trouble viewing the site sometimes...But am also trying to get this assignment done!

Have had capsule endoscopy done, and the nurse said that they should 'read' it tomorrow night and send the results to the GI on Monday/Tuesday - they will fax as the post is very slow here.
She said I have to phone the GI office tomorrow and let them know it will be due on Mon, and to ask if they want to see me while i am over here - I kind of would rather bury my head at the moment and get this assignment done first...

Still waiting for the test to 'officially' be over...May have to eat something i wouldn't normally...
 
I'm here but I'm not great. I'm *still* dealing with vertigo/dizziness (this is the 4th week now). It's mostly gone, but it's definitely still there a little bit. It bothers me if I don't eat a lot, it gets way worse then. Apparently I do have a family history of recurrent vertigo, too (great grandfather, and father's cousin). So that makes me more likely to have chronic/recurrent vertigo. I'm frustrated by the vertigo. I've had IBD or whatever this is for nearly 5 years now, so I mostly know what to expect and how to deal with it. If I have to have another chronic/recurrent thing that I need to learn the ins & outs of, that's just going to suck and it makes me depressed to think about. So I haven't been on here much as I'm afraid I would just be venting and not able to support anyone else properly. I've basically just been having a private pity party for close to a month now.

On a positive note, I switched from Pentasa to Lialda, and I think Lialda is working better than Pentasa was. It's been less than a week so maybe too early to tell, but so far so good. So, at least my guts are relatively calm.

Lewis, good luck with Humira! I hope it works wonders for you!

Gotumtum, good luck with the pill cam results. I hope you get some answers!
 
Cat-a-tonic - dont be a stranger! Sorry you are feeling so unwell and with something new. Please feel free to rant, you are allowed to too! Hugs x
Lewis - Hope it all goes well and helps :)
 
I am still popping my head in from time to time to see how everyone is getting on. Unfortunately I had another blockage last weekend, so I am back on a liquid diet and looking to start infliximab. Didn't really want to, but I can't keep having blockages ever 6 weeks and really want to try and avoid surgery if at all possible. So just waiting for my IBD team to confirm when they'll have a spot for me in their clinic. It will either be next Thursday or the Thursday after.
 
Madmouse, thank you. I know I'm allowed to vent, I just... feel weird about it, I guess? I'm a longtime member, a supermod, and I started the Undiagnosed Club - so I feel like, hopefully people look up to me and I should act as a leader and not be a whiner. But sometimes I just want to whine. :p The past few weeks have been particularly challenging so it's been difficult for me to be supportive of others when I just feel like crying all the time. Usually I can pretend at least outwardly that I'm superwoman - I can work full-time, exercise regularly, take care of my home and car and husband and pets, and do it all even with chronic illness trying to knock me down. Well, it did knock me down and I'm having a hard time getting back up, this vertigo stuff has been horrible in a whole new way than the IBD. And even though I'm functional again - I can drive, work, and exercise again - I'm still not actually better and it's so frustrating, I'm getting worried that it's not going to go away. And then to find out that it may really be chronic or recurrent because of the family history thing (my mother was nosy and asked everybody in the family which is the only reason we found out about my great grandfather and my dad's cousin's issues with recurrent vertigo - if my mom had just butted out, I would at least not be worrying so much about this thing being chronic). Ugh. I see my GP on Oct 1st about the vertigo, so hopefully then he can put some of my fears to rest or at least help me deal with the symptoms I'm still having. Until then, though, I suspect I'm going to be kind of a pathetic whiner. You guys deserve more from me than just an ongoing pity party.

Also, honestly and truthfully, I was kind of shocked and saddened when I saw lsgs's post about her having lymphoma, and I was also saddened that almost nobody rallied around her to support her. Guys, if you didn't see her post, lsgs has lymphoma (cancer) and that's serious (way more serious than my stupid vertigo), so let's please all show her we care and support her! Lsgs, I'm here for you anytime (in the forum, in PM, whatever you're comfortable with) and I've been keeping you in my thoughts ever since I saw your post. It made me sad and scared for you and I really hope that your prognosis is good. Please, update us if and when you can. Very worried for you and thinking of you.
 
Sorry for celebrating

Hey just a brief update. I found a doctor who listen!:dusty:Dr Charles Fox in Atlanta! I arrived early for the second opinion and actually got in before my appointment. To give the doctor a visual and so I won't forget anything, I took an artist notepad, titled My STORY! He was surprised and thought it was a genius move! He listened, reviewed my previous health records and came up with a plan. He stated the have ruled everything out but we need to cast a wider net and do test for Crohn's disease! I broke down and cried! Not because it could be Crohn's disease but at least I got a doctor who is willing to say what it is!:dusty:
Of course I have a few more test I have to have but at least I really believe I am moving towards a dx!

Just praying my 10 month ordeal is coming to a close!
Test in next weeks MRE and endoscopy (where he places the pillcam) in my small intestines! Another 24 hour urine and blood test!
Feeling hopeful!!!!!


I SHOULDN'T BE CELEBRATING WHEN SO MANY ARE SUFFERING THATS INSENSITIVE! PLEASE ACCEPT MY APOLOGY!
 
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Hi all, newbie here!

I think this might be the right forum area for me.

I don't know what to do anymore and I am desperate for answers. I live in South Africa. I have been diagnosed with chronic kidney disease and have multiple bilateral stones at all times. A few years ago I started having pain that felt like kidney stones. I would be rushed to hospital only to find that there was no stone coming down. I have always been constipated so when the pain would arise doctors would give me laxatives and send me home. This would help relieve the pain a little at times but mostly not at all. I have unexplained rectal bleeding on and off too. Last year I was also diagnosed with pernicious anemia.
This year I have been in daily pain for more than 6 months. I am also always getting sick with any bug that might be around. Eventually my GP said it might be Crohn's and sent me to a gastroenterologist who performed a colonoscopy and gastroscopy. Before the colonoscopy even after doing the prep I was in severe pain despite clearly not being constipated at all. Did biopsies etc, all came back normal. She found candida in my oesophagus and sent me for AIDS and diabetes tests. All normal. Now she has kind of washed her hands of me and told me to stay on laxatives, which I am. Yesterday I ended up doubled over in pain again. I have lost faith in doctors. I am literally living on Ensure because it seems to help slightly. What is wrong with me?
Can anyone here help me? Did you have the same symptoms and eventually get help?
 
Couldn't start humira today :(

My liver enzymes were triple what they should be...I know why though. Last bloods were on the 2nd and I wasn't expecting them - I'd had a bit to drink the night before. I'm so dumb...
 
Cat I am sorry you're feeling rough, I hope things pick up for you soon. Dealing with one problem is bad enough but when something else comes along it really is unbearable. :soledance:

Isgs, we are still here for you even though you have a diagnosis and even though it's not IBD. You must be so scared I know I would be. :ghug:

alli, I am sorry to hear you have been so unwell with little relief. Have you had any imaging such as scans done of your small bowel? And do you think maybe seeing a kidney specialist (if you are not already) would be possible? :welcome:

I had my ultrasound today, all normal. It was performed by the bowel imaging specialist, I continue to be impressed at the level of care I am getting at new Hospital. He said via ultrasound it was normal but that doesn't mean it doesn't have microscopic inflammation or as he put it "be red raw on the outside". He was very interested in my case and said Crohns can be tricky to diagnose but it certainly fits in my case. He was very pleased i'd had TI biopsies.

So GP Monday where fingers crossed they will have biopsy results back.

I certainly am coming round to the idea (although I am very unhappy about it) that I do have CD and it's a case of me being patient and waiting until they find something to confirm it. I will push if necessary if all the tests done so far come back normal. With such a bad case of anaemia when it was found I doubt they'll give up but i'm ready all the same.
 
Why does this bloody illness plan itself bugger everything up? Should have been on a train to meet up with my family who I haven't seen for months to celebrate my dads retirement. Instead I have had to ring and cancel last minute (having already pre-bought train tickets and hotel room), spoiling their plans and the weekend, and get to spend it curled up with my toilet bowl throwing up. Isn't being ill just fantastic?
 
Hey everone I hope ur all good!! Here's my problem... So as I've mentioned b4 the colorectal surgeon I went to referred me for a sigmoidoscopy finally. The thing is that I'm flying the day before my scope and I'm gonna be on the plane at the tyime I'm meant to be starting the laxatives!! As u can imagine the plane is not really the place I wanna be if I'm going to be running to the toilet every few min!!! So I was wondering if anyone knows whether it'll be a problem if I start taking the powder a few hours later than I'm officially meant to??.... I've waited soooooo long for this scope I really don't want to screw it up!!
 
What I would do is phone the endoscopy unit and speak to one of the nurses. They could help you figure out an adjusted timetable.

For a flexi sig the prep is not so intense as a colonoscopy, so you should be okay starting later, but I would get medical advice on that for sure.

:)
 
Pffft.

Went for my biopsy results and nothing back. Was told sometimes they don't send a report if all is normal (never heard that before) or maybe not back yet. I was told would be with GP in 2 weeks and was scoped on the 30th so....

Don't want to put myself through that again so think if I hear nothing in a couple weeks will phone Gastro dept at Hospital!
 
Hi guys and gals, sorry for my outburst on Saturday, I was at my wits end and didn't know who else to turn to! Thanks for the support - have been to GP who isnt happy, tried to ring gastro team but no-one available so going to speak to them tomorrow and ring me and let me know the plan. She said if it was lower GI symptoms (mostly ok) she would happily give me some pred, but doesn't want to risk it with upper GI without speak to GI team due to the risks (could make things worse as it is an irritant/cause a bleed, so we dont want that!). Deep breaths :)

Stargirl - I'm really sorry to hear that's annoying - we tend to live for set dates for stuff like that (I do anyway) and when that date comes and no answer it is so frustrating - hope you get some answers soon.

Solidsam - I would imagine it would be ok, but def check with the team beforehand - fingers crossed for you!

Hi Alli - sorry to hear you have been having a rough time - but fear not, you have come to right place! What have you had done test wise?

Lewis - any news on when you might be able to start? How you getting on with the pred?

Igs - hope you are ok - we are all here for you!

Hope everyone else is ok and coping alright. Love and hugs to all x
 
Hope you manage to get everything sorted out Madmouse! Didn't know pred could irritate the upper GI. :eek2:

Start Humira tomorrow, the loading dose of 4 pens. Had to up my pred from 25mg to 35mg because my symptoms were coming back with a vengeance. All seems to be back under control now!
 
Hi all....Well I am back....sigh... Been almost a year. I hope some here have found a diagnoses and on the road to feeling better. I hadn't been back here because I thought they had ruled out Crohn's. They were looking at SOD. Well, now we are back to Crohn's. All I know is I want answers. The pain for me is getting worse and worse. I have times when it ebbs to a dull roar but now it is back with a vengeance. I just want answers, like I am sure all of you do!

Anywho, I had a CT Enterography. Just got the results today. I am now scheduled for a capsule endoscopy on Oct 2nd. I thought I would post my CT-E results and see if you all had any suggestions for questions that I should ask the doctor and possibly help me understand what some things mean. I know you are not doctors and can't interpret results.... but I also know many of you are familiar with the terminology.

Findings: (I'll skip of obvious normal results) Attention is directed specifically to the bowel, the normal jejunal-ileal enhancement gradient does not hold (what does this mean??), with approximately 8 cm of distal ileum exhibiting mucosal thickening, and definite increased enhancement. There may be a couple of other short areas of unusually intense ileal enhancement, but I a not sure of that (yes that is what he wrote). Sigmoid mucosa enhances more briskly than usual, but this is probably normal, taking into consideration the appearance of the remainder of the colon.

Impression: 1. Although the findings are subtle, I am suspicious of small bowel inflammatory disease, with increased mucosal enhancement and the mucosal thickening involving the distal 8 cm of the ileum. Crohn disease seems most likely. This is no transmural abnormality, and no sign of stricture that would prevent capsule endoscopy.
3. See comments above regarding the sigmoid colon. This is probably normal but I cannot exclude an element of colitis with complete confidence.
 
Hey guys thanks for your support, and special thanks for your post Cat, really appreciate it :)

I go to see the cancer doctor today to find out how they're going to biopsy, all the cancerous nodes are deep and dangerous to biopsy.

I'm a bit scared but tbh, it all makes sense now why I have been ill. I only wish they had caught it sooner! I feel for you that are still like I was, struggling to get doctors to even believe you. I have found a bit of peace with it now, and on the upside when I start having treatment I should get some relief from my symptoms :)

I can't wait till the tumour that's pressing on the blood supply to my liver shrinks, it will relieve a lot of pain!!

Will pop back in after my appointment, hope you're all good.
 
lsgs, I hope all went well today with the doctor - I really hope the doctor is a good one, I know you've been through a number of terrible GIs so I hope you have much better luck when it comes to cancer doctors! And certainly being a bit scared is normal when you're facing something like this, it is a scary thing. But it sounds like you're doing as well as can be expected, I'm happy to hear you've found some peace with finally having a diagnosis and I really do hope you get some symptom relief once the treatment starts! Please keep us posted on how you're doing and what treatments you do. Keeping you in my thoughts and sending lots of hugs across the pond to you!
 
Hi everyone

Had a bad day yesterday nearly had a d and v accident in a shop - with no toilet:( Thankfully was just around the corner from home, and the traffic lights were kind to me, but having a little one with you does slow you down a bit!

It turns out my results for the pill cam only came through today - and the specialist wants to see me... - initially told 6th october, but asked if it could be this monday as I am still in the city where the specialist is. He will stay a bit later for me which is wonderful:)

Have lost 2 kg in 2 weeks...not as bad as I was off the doxy though, but it seems to be loosing effectiveness fast.
Trying to finish my assignment before I end up coping with a diagnosis - or no diagnosis if you know what I mean.

I am getting sick of being at home (well my parents home) - Just want to go out!
Mum suggested we go to a couple of lovely food places while I am here with awesome Gluten free food...I really want to go...But I can't leave the house:(

Thankfully the specialist is only a short car ride away... we shall see what monday brings.

Hope everyone has a nice weekend!
 
o.o

The possible-flare has pretty much ended now, so I had another calprotectin test. It should be negative now, right?

(Especially as the gastroentologist thinks that it was a false positive before anyway (I got 398 - he thinks I had an infection without realising it). Moved area, so currently have no contact with any gastro people.)

Phoned the doctors for results, and they told me to make a doctor's appointment (without telling me result). That's what happens if it's positive. Why are you positive, calprotectin? Will be getting the results Monday, so will find out if it's in the hundreds, or at a lower simmer.
 
I don't know much about that test. But I would think if there was bleeding present caused by IBD it might not be limited to times when you are flaring.
Also, Gastro Drs always seem to look for causes other than IBD and write them off, unless there is solid evidence of IBD.
I have seen many times here on the forum members who have been told "there is nothing to worry about" that go on to be diagnosed with IBD.
Just my 2p :)
 
StarGirrrrl said:
I don't know much about that test. But I would think if there was bleeding present caused by IBD it might not be limited to times when you are flaring.
Also, Gastro Drs always seem to look for causes other than IBD and write them off, unless there is solid evidence of IBD.
I have seen many times here on the forum members who have been told "there is nothing to worry about" that go on to be diagnosed with IBD.
Just my 2p :)
Click to expand...

I might end up being the next in the list to be told there's nothing to worry about, and go on to be diagnosed with IBD.

The gastroenterologist was so sure that my calprotectin test would come back negative now, showing the previous one to be a false alarm, and so support his IBS diagnosis (no explanation for the sub-clinical inflammation though..).

Just got calprotectin result - still a solid positive. Given my history and minor inflammation findings, the doctor says probable Crohn's. Been referred back to a gastroenterologist (recently moved area so no contact with the specialists currently).

Moving forward, moving forward. I find it so silly - in March I was desperately hoping it wasn't an IBD, but now I'm just wanting an answer.
 
So as some of you may know i've been struggling badly recently with the mental sides of my illness. It's all got a bit much for me and i'm struggling to cope. I'm back at sixth form and have so far not managed a full week :( It's a scary concept being stuck in a class full of 20 odd immature kids who think it's hillarious when someone has to go for a poo at school. That's the problem with the young generation now, you are only aloud to go to the toilet in your own home as it seems! It's been tough for me as i'm constantly hearing sniggers ect behind my back which is all i need in this physical state with the mental state i'm in. I've debated throwing in the towel a couple of times already. I can't take it. I was quite fortunate that one time i was particularly bad i was in a class with a girl who's sister has been diagnosed with Crohns so she understood and told her boyfriend, who happened to be the ass being vile to shut the hell up because i was in the same situation as her sister and that it wasn't fair to take the mick for something that is completely unavoidable. Not very private when half the doors to the ladies toilets don't shut as they've been jammed open so the whole corridor outside can hear anything going on. Bit embarrasing to say the least.

My mental health has deteriorated massively. I've had depression on and off for a long time and have self harmed in the past. This is the worst i've been. I've so far resisted any harming, not easy to say the least some days. I sort of broke down in the GP's room the other day. Was just coming to the end of an appt about increasing the codiene, which he wasn't too keen on, even though currently i can't get out of bed most of the time on the dose he has given me. But he had to go and ask me the fatal question of "how are you feeling about it all, do you have someone to talk to?" well of course that was it. Me in bits. I've been completely alone through all of this as some of you may know from when i joined the forum quite a while back now!! But of course he goes on to say "you need to talk to someone, your mum really" I just said there would be no use, shes too wrapped up in her own life or thinks her 'medical' advice will cure me instantly (utter bulls**t excuse the language!! No other way to put it!!) I've never felt more alone in my life. He told me to go and see the sixth form councillor, not that shes any use what so ever! The last time i went to see her, she made me book an appointment with my GP to get referred to another councillor... what damn use is that when your supposed to be a councillor DUHHHHHHHHHHH!!!!!
Either way i explained there was just no one physical to speak to (ovbiously there is you guys and your fab, but sometimes a hug goes a long way!) and that i'd pretty much given up. I don't know how i'm ever going to get through this and sometimes i think whats the point. No physical or mental help from GP's as his words were "I wish i could help but theres nothing i can do, you need to talk to someone" oh yay. Highlight of my year. I may aswell crawl under a rock and die now. I give. I've been trying to contact my ex to see if he'll just let me vent, but nothing. He won't answer my calls or texts. We were talking a little while a go but then it just stopped. He won't reply or call me. That hurts an awful lot to be honest, i've supported him through a lot, even since we've spilt up and the one time i desperately need him. He's not here. Great ay. I'm not entirely sure what to do next.

Too exhausted to do anything and i'm currently trying to write an english essay, and failing badly. I have NO idea what so ever, i don't need this and i need some help. Can't keep juggling all this with no physical support :( :( :( any advice for support? No family help, no friends, no professional, nothing. URGH :(
 
RosannaKate,
In the area of Canada that I live there are organizations that offer 24 hour Help Lines that a person can call to talk to someone. The people manning the phone are trained in crisis intervention and hoe to speak with people who are depressed and feel they have no support. They are able to set-up same or next day counselling intakes to help a person figure out what type of support they feel they need and where they can get it from.

I only have time for a quick look at UK websites that may offer the same support. So far I found this site that has a Help Line during the evening hours: http://www.sane.org.uk/what_we_do/support/helpline

Do not give up Roseanna--if you feel you may self-harm go to a walk-in clinic or a hospital and tell them how you feel and that you need a real live person to speak with and an emergency counselling appointment.

Doctors here would have the resources to make sure that you saw a mental health therapist right away-- the problems here are finding help after the crisis is over for ongoing support.
 
Hi RoseannaKate,
Here is a 24 hr help-line from the group StarGirl suggested: http://www.samaritans.org/how-we-can-help-you/contact-us

And here is a website with lots of mental health support links: http://www.midlandheart.org.uk/useful-links/mental-health

This one is for a link that has closed but redirects you to a 111 service for the NHS. Perhaps they could help you to get emergenecy counselling: http://www.nhs.uk/nhs-direct/Pages/NHS-Direct-legacy-enquiries.aspx

I hope that these are numbers that you can access where you live.

Please keep us posted as to how you are doing.
 
RoseannaKate - is your head of sixth form sympathetic? If so, can you persuade them to let you use disabled toilets? I used to use the disabled toilets when I was in sixth form (for a completely different reason) which had the side-benefit of being useful in this situation. A single remote cubicle meant that most of the time my butt-barfing went unnoticed.
 
He doesn't particually understand it. I did ask but he wasn't keen on the idea as there is only 1 disabled loos and if a 'visitor' came in they would need priority... great ay! Give more care for any visitor over your damn students! There is one set of toilets downstairs which are ok and door shuts, but it's the budiest loos in the building. I might go and ask him again as i can't stand all this constant sniggering from immature children! Tell him i'm not comforatable and if he says no i might put it very literally as in "would you like to have D for the entire corridor to hear on a daily basis?" anything awkward and he'll probably give lol! Thanks Borg :)

I have spoken to the samaritians before, they were ok but it's still not the physical supportwhich i could really use right now. The GP/Nursing staff wont seem to refer me for councilling, also not useful!
 
I think you need to ask again about the disabled toilet, mention "disability discrimination" etc and make a formal complaint to the head of the Sixth form. I would even consider contacting you local councillor or MP over the issue.

It is not acceptable you were refused use of the toilet, especially for the reasons given.

As for counselling in my local area the service provided means you can self refer, i'd research the provider and see how they accept referrals (if you haven't already).

Try your GP, or another GP, and go through the reasons why you need a counselling referral. Ask them why they are reluctant and counter their points with your own arguments.

Also I have found with Drs if they stop helping me then I demand to see someone else or be sent somewhere else. Either direct through them or through the complaints department. It saved my life in the summer! Within the framework of the NHS that is a legal right that you have.

I know all this takes energy you probably don't have but I have found I either have to continually fight or just give up. Which although tempting is not a route I want to go down. So when I am not getting help I have to fight once again.
 
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Hi everyone

I got the results back from the capsule endoscopy - no inflammation.

The GI specialist said that crohns has been ruled out, but that my symptoms are serious, and that there should be something else going on.
He is sending me for gas breath testing for Small intestine bacterial overgrowth and food intolerances. I am a bit dubious at this point - but am desperate.

I am greatfull that he has not just said IBS and given up, but he did say these are the last tests...unless I want a CT for peace of mind - but that my symptoms don't correlate with cancer or growths of any type.

So...more testing. I tried to stay away from the forum as I was trying to get my assignment done (posted on Thursday:) ) And as my results said not crohns. But I am a bit lost at the moment, and I figure that you guys understand the symptoms I am having more than my husband does.

I soooooo wanted it to be crohns - stupid I know. But it would have been a diagnosis, with treatment options, and possibly some relief.

I am soooo over this. My hair is sooooo thin and keeps breaking, and I can't study next year or have another baby as I am too sick. I have only lost 12 kg but have gone down 4 or 5 clothes sizes in 16 months. I had built up some muscle but I have lost it again.

My husband does not understand, and is not sympathetic at all and is sooo wrapped up in his work, and I hate relying on my Mum when I have to travel over to get all the testing done.

I just want to be well. And failing that - to know whats wrong with me.

This really sucks.

I have to stop the doxycycline for the breath testing, and I know I will get really sick again. I am terrified and ashamed. I want to be a good Mum, but I can't parent from a toilet. I have no self esteem or self worth left. This body does not work anymore. I want a different one!

Sorry for the rant.
 
I've been out of the loop a bit.
Sorry you didn't get a diagnosis yet. That's a real blow. And it's a shame when life is put on hold because our health isn't up to par. It sucks when people don't understand, nor seem to care, especially those that are closest to you.

I hear you on wanting a different body.

Mine almost completely crapped out yesterday (and no pun intended). I've been put on potassium as my levels have dropped well beyond the normal range (almost to the point of critical) where it started affecting my kidneys and my heart and probably explains the month-long cluster migraine and now the neck pain. Now I know what it's like to almost have a heart attack.
 
Gah! I really thought you'd get your diagnosis from the pill cam gotumtum. I understand what you mean by the 'I wanted it to be crohn's' - I felt the same. Having a name to put to your symptoms really is a huge relief because you no longer feel like it's all in your head!

So IBD is ruled out, that's not wholly bad news since it could be something that can be treated and eradicated without lifelong medication.

I too would love a different body. Preferably one with a beach body, but a properly functioning bowel would do I suppose.
 
I haven't been here in a while, but I wanted to let you know about my diagnosis, as it might possibly be an answer for someone here too. I have had significant gastrointestinal problems all my life. I missed the last month of kindergarten; I was hospitalized in high school; I had to leave my job in Arizona. And yet, doctors could never figure out what was wrong. This summer, one of my other specialists referred me to another gastroenterologist. I didn't expect a lot, as my previous experiences had been unfruitful at best, but after reviewing my records and talking with me, this doctor immediately told me that she suspected some condition causing malabsorption and ordered tests to check her theory. The abnormal test results showed she was correct so she decided to proceed with a small intestinal biopsy, and taking into account my symptoms since childhood, ordered a special test on the biopsies. Two weeks ago, I was diagnosed with a rare, genetic condition, in which my body does not produce enough enzymes to digest most foods. It's called Congenital Sucrase-Isomaltase Deficiency (CSID), and I fall into the subset of those who also are deficient in lactase (meaning, lactose intolerant). (Oh, and I also have gastritis and esophagitis.) Anyways, I don't know if most people who find out that they have an incurable, genetic condition are happy, but for me, this is very hopeful. I will have to be on a very strict diet and take medication 5x a day for the rest of my life, but I'm cautiously optimistic that this could lead to positive health changes for me. If you want to know more, this is an excellent site: http://csidcares.org/ I would like to spread awareness about the condition so that it doesn't take others three decades to be diagnosed. I am the first person my gastroenterologist has diagnosed with CSID, and none of my other doctors have ever treated anyone with it. It might take patients learning about it and asking to be tested, if they think their symptoms fit.
 
@Cat-a-Tonic-- I'm sorry to hear about the labyrinthitis. I had that when I was in graduate school. It's not pleasant. For me, it took about 6 weeks to be over the worst of it, but for the next several months (or more), if I were on a sloped surface, rode in an elevator, etc., my equilibrium would be thrown off. Also, if I started getting allergies or a cold, I'd have symptoms come back. This has lessened over time, but whenever I have a hint of symptoms, I take a decongestant/antihistamine combo to dry things up in my inner ear. This seems to help. Of course, YMMV.

@Roseanna_Kate-- I thnk you should insist on the disability toilet. YOU need priority access, as you cannot wait. Also, you need privacy.
 
chuckmya said:
@ Lewis how is the Humira going? I start the loading doses on Monday! Any side effects for you as of yet???
Click to expand...

Hey! I've had some cold/flu symptoms, lots of sneezing and swollen glands, but that all seems to have calmed down. I was so worried that I had an infection and wouldn't be able to have next weeks dose.

As for crohns symptoms, they all seem to be under control. Had to go up on the pred for a while but back down to 25mg again. Star low dose azathioprine next week to prevent antibodies building up against the humira or something.
 
Roseanna i really hope u get the help u need u really don't need the extra stress ontop of all the other symptoms!
As for me i have a progressive update!: finally had sigmoidoscopy this morning and they found very slight inflammation in 3 seperate areas so now i gotta wait for the biopsies to c if they show anything! I hope it'll work out well but i'm happy there was progress and potential answers!
 
Hey Chickadee, nice to hear from you again and congrats/condolences on the diagnosis! I recall you saying you could only eat about 4 foods - I presume that's due to the lack of enzymes? What are the treatments like, can they give you some sort of enzyme tablets to take? I'm lactose intolerant too but on a good day I can handle a bit of dairy if I take a lactase tablet, so hopefully there are things like that for your illness as well? Also, I seem to recall that you also have another rare illness (clotting disorder?). My goodness, I'm sorry to hear you have so much going on that is so rare - it must be difficult to find doctors who know how to treat you! Please pop back in from time to time and keep us updated on how you're doing!

Oh, and thank you for the labyrinthitis input. I'm still dizzy today (I'm now in my 6th week of it) but if I decide to pursue VRT (physical therapy specifically for vertigo) then I'll have a 6 week wait for my appointment. So I'm currently trying to decide if that's worth it or not. Did you go to VRT when you had labyrinthitis, and if so, did it help?

Gotumtum, I've had a normal pill cam result too, but in my opinion (and my doctors' opinions) IBD still isn't ruled out for me. My symptoms fit IBD, we've ruled out most everything else, and I respond really well to IBD medications. My GI seems to think that I might have microscopic colitis that's been hiding really well (it looks totally normal visually and can only be found on biopsy, and it has a "skip pattern" so it's patchy, so basically they have to luck into biopsying the right spot to find it). If it were me, I'd pursue more testing. There are other illnesses that can cause IBD-like symptoms, too. Have you been checked for things like Lupus, Behcet's, Addison's? Those are all auto-immune illnesses that can affect the digestive tract. Even if you don't have those, you can rule them out with less invasive tests (blood work, etc).
 
Cat-a-tonic-- There is a rx medication that can help with sucrose tolerance, but there is no medication for starch intolerance (though research is being done by the company that makes the med for sucrose intolerance). Even with the med, I'm going to need to keep my sucrose levels really low, which means eliminating most fruit and some vegetables (though some of the vegetables are more because of starch content). Still, this is a PATH, whereas I was just shooting in the dark before and getting sicker and sicker (currently down to 94 lbs.). I don't mind having a limited diet if it means I'm not constantly in pain, having D, feeling nauseous, etc. And yes, you're right-- I have a genetic bleeding disorder, von Willebrand's disease, though it's not super-rare. I wouldn't be surprised if there is some connection, but it's hard to know for sure.

I didn't get PT for my labyrinthitis, and I didn't even know that was an option. That's great that it is! If I were you, I'd go ahead and schedule the PT, and then cancel it if you're feeling a lot better in 5 weeks.
 
Chickadee, yeah, apparently the physical therapy for labyrinthitis isn't very commonly prescribed - my GP made it sound like I'm one of his first (if not his very first) patient to be sent to this PT (he said most people recover from labyrinthitis in 2-3 weeks, and since it's been over a month and counting for me, the physical therapy couldn't hurt and should help). It's not quite like standard physical therapy - it's called VRT which I believe stands for vestibular rehabilitation therapy. Basically they do some exercises which, from what I've heard, at first make you more dizzy and feel a bit awful, but as you get more used to doing them then your brain adapts and it helps you recover fully from the vertigo and dizziness. So it sounds like it might suck, but also should be worthwhile. I'm not super looking forward to it, but I am totally sick of the dizziness so I'll give it a shot. Plus, I found out that I have a bit of family history of recurrent labyrinthitis - which makes me more likely to get it recurrently, too. So if all else fails, learning the VRT techniques could help me down the road if the horrendous vertigo ever decides to come back.

And yes, I'm so glad to hear that you have a treatment path to follow now and can hopefully get some relief! So no starch and (almost) no sucrose... what foods are you allowed to eat? I know you have been really limited so I hope you're a bit less limited now, but I am guessing that the list of no-nos is still far longer than the list of acceptable foods? I hope you can regain some weight, too.

Edited to add: Got my VRT scheduled. They can't get me in until Nov 17th. Ugh. Hopefully it's either worth it OR the dizziness is long gone by then! It kind of depresses me that I just have to "hurry up and wait" for another 6 weeks.
 
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Cat-a-Tonic, maybe the wait for VRT is so long because not very many PTs have training? I needed a different kind of specialized PT last year, and I also had to wait about 6 weeks. If I had needed to recover from a sprain or something, I could have started PT the next day. I hope you don't end up needing VRT, but if you do, I hope it works for you!

Right now, I have a list of foods I can eat-- bell peppers, celery, cucumber, mushrooms, spinach, zucchini, blueberries, cherries, blackberries, red seedless grapes, oils, tuna, salmon, eggs, some nuts, natural peanut butter. I could also eat meat, but I choose not to. Eventually, I'll be able to add some other things back in, in very small quantities and see how I react.
 
Thanks for the ideas chickadee and cat-a-tonic

Still waiting for the hydrogen breath testing - week after next. Really not looking forward to it as to me it seems a bit new and hit and miss... and I don't feel right about the vomiting part either - maybe they can explain it better, but I didn't think that IBS or Intestinal bacterial overgrowth included vomiting...

I also have not ruled out the IBD in my mind - I was tested about 6years ago for Lupus, and Addisons, and don't think I have the right symptoms for bechets. But will add them to the plan b (actually we may be up to plan F?)

I have been doing a bit of research, and I think that I would also like porphyria ruled out. But it is very rare. One of the types - acute intermittent porphyria rings lots of bells for me. It can be dormant, and then all of a sudden - Nausea, vomiting, abdomen pain, and either constipation or diarrhea. I have noted it here as it might help some other people on their journey to a diagnosis of some description. AIP is associated with neurological symptoms including periphal neuropathy - which I do have too.

Thanks again for the support. I am so sick of my life being about this. But I don't have the capacity to do anything else. That and looking after my little one. My husband is grumpy. My life is a mess. I have nothing left and just riding this rollercoaster the best I can. I hope it stops soon.

I hate rollercoasters.

I have come off the doxycycline for the breath testing. By the end of it I will have been off it for 3 weeks - I expect to have had severe v and D etc for at least 11 days by that stage. I will be staying with my Mum, so hopefully she can look after me. I know that others go through this for longer than that. However my GI, Mum and husband don't remember how sick I was last time I was off the doxy for more than 10 days. At least I will be near the GI if I get really bad.
 
Gotumtum, I seem to recall that someone else on the forum a long time ago was being investigated for possible porphyria (I can't remember who that was and I'm not sure if that person ever got a definitive diagnosis, so I'm sorry I can't be of more help). I don't know much about porphyria, but if it seems like it could "fit" your symptoms then I say definitely pursue some testing for it. Yes, you are correct, vomiting is not part of IBS so again I would encourage you to continue to pursue more testing. I hope the hydrogen breath test goes well and that your symptoms don't become too horrendous now that you're off your medication! Good luck, hang in there. Hopefully the roller coaster will slow down soon!

Chickadee, that sounds like a fairly decent list of acceptable foods - it sounds like more variety than you were eating, at any rate. Lots of fruit and veggies which I'm a bit jealous of! Are you doing a bit better now that you are eating those foods? I hope you're able to gain some weight, 94 lbs is quite thin (what is your height? I'm 5'8" and I'd look skeletal if I were 94 lbs). And yes, I think you're right about the VRT being a specialized type of PT that only certain physical therapists are trained in. When I made the appointment, I asked if I could be scheduled with the therapist who worked on my bad hip a few years ago - but I was told no, she doesn't do VRT, so they had to schedule me with someone else. I kind of hope I don't have to do VRT, though. Yesterday was a really good day dizzy-wise - the dizziness has been sapping my energy, but yesterday was such a good day that I had enough energy to do a really good gym workout (I haven't had a really good workout like that since before the dizziness hit). I barely felt dizzy at all. But this morning, it's worse again. Bleh. I need more days like yesterday and less days like today.
 
So, a little update from me.

Still heard nothing about the scope biopsies so I am assuming all was normal.... frustrating!

The GI feels the anaemia was most likely caused by the Naproxen use but his registrar (who I saw in clinic) was convinced it's CD hence the tests which is frustrating again...

When I was admitted for the anaemia I was naturally questioned quite closely about sources of bleeding, periods etc. The only thing I could think to report apart from occasional blood in my poo was a random isolated incident a few weeks before where i appeared to be bleeding from my throat, lasted an hour. It wasn't dental I very carefully checked.

Turns out it wasn't an isolated incident because it happened again this week, over one day it bled on/off for 3 1/2 hours in the morning then another 30 mins in the evening.

Yes it freaked me out and yes I have now written to the GI saying this has recurred. I wouldn't be surprised if this kick starts more tests and I guess they'll want another upper scope ugh.

Also been battling a virus for two weeks, second week it passed through my guts, great! Not the worst one i've ever had for gut problems but still. Last night I managed lunch and dinner for the first time in 6 days! Have had to use immodium here and there because i've had enough and it's gone on too long now.
 
So sry u have to go through all this stargirl i hope u get answers soon.... I'm atm waiting for my biopsies to see if they show anything i hope i'll get an answer soon and i wont have to chase it up again! Feel better soon!
 
Hi All. I just signed up today as I have been trawling the internet for help and advice (and scaring myself silly) trying to find information. I came across this site and it is so nice to find a support group for this.

My story is similar to everyone else on here, the fear of not knowing what is happening to your body and the frustration of endless tests and lack of answers.
I won't go into everything, but wondered if anyone can help me out with some advice?

I've been having symptoms for 6 weeks and the only test I've had so far is a blood test (all clear). However I am finally having a endoscopy this Friday. So my questions are
1) Would anyone advise the sedative or is it better to brave the procedure out with just the throat spray?
2) Will an endoscopy actually diagnose Crohn's?
3) My symptoms were really severe last week, but I am beginning to feel better now. As I am not having a flare up, will this mean they won't see anything wrong and just fob me off?
4) I've been referred to a consultant, but don't have an appointment with one yet, should I put off any tests until I see her? As if given a choice I would much prefer a tablet camera thing. I am a little frustrated that I just get sent for possible unnecessary tests without having all the options discussed first.

I know you can't give me medical advice, but I would love to hear your experiences (particularly with endoscopes) as have no idea about whether it is better to be out of it or awake for the process.

Thanks
 
Hey doogle n welcome to the forum! I haven't had a endoscopy only a sigmoidoscopy (without sedatives) so i can't really advise u on that, but if i were u i would take the test now eventhough u haven't seen a consultant yet since u were lucky as it is to get one after only 6weeks since the start of ur symptoms, plus u may be lucy that ur consultant may give u a diff. test aswell so don't waste ur opportunity for this one! Also as far as i know it doesn't make a difference whether it is done during a flare up or not coz they found 3 points of inflammation by me, even when i was having a good week (still awaiting the biopsies so don't know if it showed crohn's or not). In regards to whether or not it will diagnose crohns, some ppl r luckyer than others, there is a good chance that it will but don't be worried if nothing does.... eitherway as i said i wouldn't push it off for any reason coz u were lucky enough to get this! Good luck n keep us updated!
 
Welcome to the group :) Everyone has different scope experiences but for the upper endoscopy I would recommend the sedation. I found the first one much harder with the throat spray than the second with sedation. I was awake during the procedure but I was very relaxed, and I found the sore throat wasn't as bad after as with just the throat spray. In the UK they give twilight sedation they don't knock you out totally. Some people from twilight are like me awake but relaxed others don't recall a thing.

If there are obvious visual signs or the biopsies show something you could get a diagnosis.

It's hard to know whether anything will or won't show up seeing as you are feeling better. You could be feeling better but the signs are still there, or there could be nothing to see.

Personally I would have the test now then deal with what the specialist wants to do. The camera test is valuable in that it can picture the entire small bowel (both scopes only peek into either end of a very long intestine), but it cannot take biopsies. Sometimes visually things are normal but biopsies show up problems. Also I don't know what country you are in or how your healthcare is funded; but in the UK many NHS trusts limit the use of a camera pill because of the cost and you have to fit narrow criteria to get it. I would not cancel the endoscopy just because you are hoping for that test.

I am assuming to get a endoscopy after 6 weeks of symptoms things must be rough for you so I am glad you're feeling better and hope things go well if you decide to have the endoscopy.
 
Thanks guys for your advice, I think I will go for the sedation!

Yeah, did have a very rough few weeks, and I'm still off work. I guess from reading other stories I am lucky to be seeing someone after 6 weeks, but when you are having these symptoms, I struggle that it takes so long to be seen by a specialist (my GP recommended going private!). I wonder why the NHS is so rubbish with this type of stuff? I had similar symptoms almost 12 years ago and had an endoscopy which was clear, so was told I had IBS and there is nothing that could be done. Since then I've had a delicate stomach, pains in my joints and kidney stones. So this time I am determined to get to the bottom of things.

Yes I'm in the UK. I would add it to my details, but for some reason when I select to add it to my details, it just takes me to a blank page. I'm not that bothered, but I'm not really trying to be secretive!

Thanks for the support today.
 
Hi Doogle,

I would agree with the others, go for sedation and don't put off tests until after your appointment, it might be that it has been done deliberately that way round, so the results will be back in time for your appointment.
6 weeks is really quick from first onset, you must have a good GP. Apart from large numbers of patients to deal with, these things are often left because unless you have multiple red flag symptoms, it can be one of a million things, most of which self resolve and dont require specialist input/invasive tests.
I really hope you get some answers post upper endoscopy, but as the others said, dont be too disappointed if you dont - there are other tests that can be done (some of them nicer than others) to look for problems. My scopes have always come back fine, scans been borderline normal and bloods not great but "not as bad as we might expect" and whilst I have had (and sometimes continue to have) a battle to get beyond an IBS diagnosis, there are drs out there who will try and find the answers/give you some treatment to try to settle symptoms etc...
I don't want to scare you, and it is a long and winding road, but you have come to the right place, we have a great collective experience and are here for you whatever your question, concern or just somewhere to let it all out (so to speak).
All the best! x
 
Madmouse said:
I don't want to scare you, and it is a long and winding road, but you have come to the right place, we have a great collective experience and are here for you whatever your question, concern or just somewhere to let it all out (so to speak).
All the best! x
Click to expand...

just one thing...... I agree with what madmouse said.... This is the best place to come to! I am one of those "think they know it all" kinda guyz but when i was put in this situation i was sooo happy to have found such a friendly place where i've been helped sooo much! Thanx again guyz! And keep up the gr8 work everyone
 
I am a 38 yr. old woman suffering from rectal pain. Three years ago I started experiencing mouth sores and new food sensitivities causing diarrhea. They did all the blood/stool work/colonoscopy and found nothing. Two years ago I developed what I think was a fistula from my rectum to my perineum. Then a year ago I had to have an emergency appendectomy. The same time I got another perianal fistula. Now this last May the bleeding and stinging sensation in my rectum developed. They did a MRI and surgery to remove a hemorrhoid, but found nothing abnormal in the biopsies. They gave me a prescription for Amoxicilin and after that penicilin. They helped a little, but now the stinging is back. It feels like I have a strep infection in my butt. The last stool test did show an elevated amount of Citrobacter Freundi (bacteria). Right now I am on Cipro and taking all sorts of supplements, probiotics and natural anti-biotics (Oregon Grape, Coliodal Silver...)

Anyway... My latest thought is to try a fecal transplant. Any thoughts??? Looking for answers!
 
Undiagnosed-
Hi guys, have been reading this forum for a few months now and I must say it has been very comforting to know that I am not the only one.
Been suffering for 3 years, was hospitalised 4 weeks ago because of intestinal bleeding and severe anemia! They did two scopes and saw nothing however my inflamation markers (CRP) are raised. Suspected Crohn's disease got to wait 3 weeks for a small bowel MRI study. I have lost 1 and a half stone in 4 weeks :-( just want some answers!
Now i cant leave the sofa because of pain, headaches, fatigue, ultinating D and constipation! Anyone else experienced these symptoms?
Also when i was in hospital they said i could have a rare small bowel disease because i have pigmentation/freckles on my lips, has anyone else been told this?
I look forward to any help or info xx
 
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Hello sunshine1 and Faye - sorry you have had to find your way here, but welcome! I hope you both get some answers soon. x
 
Hi guys just dropping in to give a little update... i know many of you have seen my posts about depression ect. Well my good GP has finally realised it's a problem! I've been diagnosed with severe depression and put on fluoxetine (some of you may know it as Prozac) and basically been put on suicide watch.

It's a crappy time to say the least, pun not intended :p. Either way since starting these tablets i have had no sleep, my mouth is dry, i've got worlds worst headache... the side affects list goes on. I feel like i could.just cry, one issue... i can't! These tablets wont let you get to a point where you can cry! Which isn't good because sometimes you see things clearer afterwards! Oh well, persevering with them.

My stomach is horrendous. I'm fed up of it now. Maybe if they'd pull their fingers out of their backsides i wouldn't need anti-depressants because i wouldn't be depressed!!! Feel like banging my head up a brick wall. I'm back at sixthform but seriously struggling with my stomach and being there! It isn't making things easy! My mums out at the minute but she'll only rant i haven't gone when she gets back. I can't help it that i seel so damn bad i can't get out of bed!

I've got another appointment with the gastro at the end of November, day after my 18th Birthday, so will be considering what tests to push for as i need something. I could do with having a full colonscopy done as they've never got the entire way around but it's too painful and they wont knock me out all together hmmmm. I panic as well so that's not particually useful either! Need to think about it i guess!

Hope everyones ok!! :)
 
Well for anyone interested.... My update: just back from gi, my biopsies from the sigmoidoscopy all came back normal so he says he's basically ruling out ibd! He said that to make sure he's not missing anything serious he's gonna schedule me for an ultrasound! I dunno whether to be happy or sad that nothing showed coz the pain and rectal bleeding is there! So where is it coming from?? It is obviously annoying to be back in the question mark but i suppose i should've guessed this would happen! Does anyone know Could crohns show in an ultrasound or thats only for kidney related problems?
 
Rosanna Kate, sounds like your not having a great time :-( i hope they get some answers for you soon!
SolidSam, I'm not sure about ultrasound showing crohn's, i had one at some point to check my kidneys but when I was in hospital my mum asked about if i should have one but they said it isn't clear enough! I know how you feel with kind of being relieved and dissapointed when you know your symptoms are there but they cant find anything! Keep pushing though :)
 
Hi All

Looks like it has been a busy few days on here. Sorry Faye, sunshine1 and Solidsam, I have can't help at all with your questions, I've never heard of a fecal transplant and I've no idea how an ultrasound helps with a Crohn's diagnosis. Though I think it is just another way of looking at your insides and ruling out problems with your kidneys or liver. I guess it's good to know if they are working well! I would ask why they are ruling out IBD, since it is such a difficult condition to diagnose, surely at this stage all options should be kept open? But I hope you do all get some answers soon and let us know how it goes.

I too have been suffering from fatigue, sickness, loss of weight, and in the last few days I now have joint and chest pains. I'm still waiting to see a consultant, though I was told that if you have ongoing diarrhoea you have to be seen within 6 weeks of onset (I think this is why I had a colonoscopy last week). I had these symptoms about 12 years ago, which was never really investigated properly, but I got better by cutting out wheat but now it is back again. This time I am determined to get some proper answers, and I am going to ask for an MRI. It is all very depressing.

My update is that I had the colonoscopy, which looked clear and I should get the biopsy results in a few weeks time. When I got to the hospital I asked the nurses whether I should have the throat spray or sedation, and they told me most people have the throat spray. I now wish I had listened to the advice on here rather than the nurses! I will listen to you all next time.
 

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