Undiagnosed Club Support Group

Rosanna - sorry to hear you are having such a rough time - I know you don't want to hear it (and it goes against my better judgement) but if you are in severe pain, and your GP is doing nothing despite pestering them daily, then get yourself to A&E. At the very least they will give you some pain relief and make sure you are not dehydrated etc... x

I just feel like they keep telling me that they can't help and i just need to see the GI, but i dont want to make a fuss really because i am in pain but i feel like the a&e in this country is so packed with people who only really need a GP but then the GP's aren't listening. It's a bit difficult because i really hate making a fuss, i'm normally on my death bed before i go to hospitals. I have rebroken my ankle falling down two flights of stairs and i didn't go to hospital for a week until work physically forced me there! I just feel like if its not an emergency i dont want to go there :/ not good!

RosannaKate said:

I just feel like they keep telling me that they can't help and i just need to see the GI, but i dont want to make a fuss really because i am in pain but i feel like the a&e in this country is so packed with people who only really need a GP but then the GP's aren't listening. It's a bit difficult because i really hate making a fuss, i'm normally on my death bed before i go to hospitals. I have rebroken my ankle falling down two flights of stairs and i didn't go to hospital for a week until work physically forced me there! I just feel like if its not an emergency i dont want to go there :/ not good!

Click to expand...

And yet patients get the blame for the inadequate service gps are providing us, makes me so mad. If people could get appointments with their gp, and weren't made to feel like they were wasting time when they were there they might not clog up a&e. Granted there a lot of people who do waste time but in my view anyone who attends a doctor or hospital is worried about their health and that should be acknowledged whether the doctor thinks it's an important issue or not.

Anyway I know I have said this to you before but try an out of hours clinic

A&E is definatly abused by people who are unwilling to accept the fact that they might have to wait for an appt for their sore throat, sniffily nose etc... There is also a problem with lack of GP support, making people unsure where else to turn to. As a healthcare professional, I get really frustrated with peoples impatience, inappropriate use of the wrong services (and by inappropriate, i mean deliberate misuse, not people who genuinely dont know what else to do) and the plethera of poor gp services - not to mention peoples inability to self care!!! HOWEVER, you need to see someone soon, as it sounds like you are acutely unwell - if you cant get anywhere with your gp you need to speak to someone soon!

In the meantime, try n drink plenty of fluids, get some rehydration salts if you constantly on the toilet, if you fancy something to eat stick to plain things. Take regular paracetamol, avoid things like ibuprofen/aspirin. Have u tried buscopan and/or lorperamide?

I have tried buscopan a long time ago, it did nothing for me and the cramping actually got worse while I was on it, so decided it wasn't for me.

I take loperamide now with codeine, it helps a bit but I still am not right, its still D even though I take them. Its really irritating because nothing is working, while they give me codeine and loperamide they can be useful for when I physically can't get off the toilet, but I still end up going 20+ times a day even with them. That's not right at all!

What gets me is my sister takes loperamide over the counter because she struggles when she has her time of the month (don't we all!) but for her she takes one and can't go for the next 3 days!! I wish I could do that! If I miss one tablet at the times my body has got used to taking them I'm back on the toilet within 20 minutes daily. It's useless trying to hold down a job at the same time.
I stopped with ibuprofen a long time ago as it just went straight through me! Within eating I have about 15 minutes before I have to run to the toilet and its the same with drinking, even just water. I just can't hold anything in at the moment. The blood and mucus I'm getting is just getting worse too, I've told my GP and all he says is we need to wait for the hospital specialist apt! I'm like come on!!!!! I'm bleeding every time I go, the pain is getting stronger everyday... right now I'm just not coping and I feel like no one will help me! Its crazy!

@RosannaKate-- If you can see your gp, ask about cholestyramine. It won't fix any underlying problem, but it should slow down the diarrhea, particularly if you were also taking the loperamide plus codeine. http://www.patient.co.uk/medicine/colestyramine

Rose, in addition to asking about cholestyramine, you may also want to ask about Lomotil. It's a prescription-strength anti-diarrhea med. It's not meant for everyday use, but on those days where you have to take the bus somewhere, go to work, etc, it could help you get through those situations. It's similar to Imodium but it's stronger - Imodium does nothing for me, but Lomotil works pretty well.

lsgs, that's great that you've been able to do the bike trainer and walk with your dog! Yes, I know exactly what you mean about how exercise makes you feel so much better mentally. I used to really struggle with depression, and ever since I started working out in earnest about 3 years ago, I really haven't been depressed like that. Sure, if something upsets me then I'll feel depressed for maybe a day tops, but that dark cloud doesn't linger for weeks or months like it used to. And if I do feel depressed or mad or whatever, I know I can go to the gym and just work myself into a better state of mind - it's wonderful!

As for lacking the confidence to ride your bike outside, I know that feeling too. For me, it was more with my kayak than my bike. Hubby and I had bought a 2-seater kayak the summer before I got ill. We used the kayak all the time that summer and a few times we were out for so long that I had to get out of the boat and go pee in the woods (no bathrooms nearby at most of the creeks we kayak in). Then I got sick, and for awhile exercise was out of the question. But when I got into remission, I was still petrified to go out in the kayak - what if I suddenly need to go, what if my stomach starts hurting and I can't paddle anymore, what if I need a bathroom and there are other people around and no woods to go in but no bathrooms nearby either, what if, what if? As a result, our kayak sat collecting dust for something like 3 years before I felt brave enough to go paddling again. I'm glad I finally was brave enough, as I had no trouble at all and didn't need the bathroom and my stomach was quiet and nice each time I went kayaking. Kayaking is wonderful, it's so nice to get exercise outdoors and to be on the water. I'm glad I didn't let my illness keep me from it forever. And I know now that I can kayak in a mild flare, too, as I was in a mild flare for the past year or so and was bleeding off & on, but I was still able to go kayaking several times last summer. So, I can do it! Hopefully you will be brave enough and well enough to ride your bike outside soon, too. When I ride my bike, I always bring my cell phone and I know I can call hubby to come pick me up in the car if need be. And I tend to ride either through the city or on routes where I know there are bathrooms, I bring wipes and meds with me in my backpack, etc. That kind of stuff helps me feel like I'll be okay on a ride, like a bit of added security.

Hey guys, when i first got ill they gave me cholestyramine sachets to try as they thought better than codeine at my age, i can't hold them down... i was taking them then throwing up 2 minutes later. So i went back and they refused to give me anything else and said they couldnt. That stuff was unbareable and because i couldn't even hold it down long enough to take affect they told me to stop taking it after 2 weeks because i was loosing more fluid throwing up 4 times a day! Only got the codeine and loperamide recently when i first started talking to you guys. So thats something else they cant use i'm not the best with tolerating things but i gave that stuff a good go considering!

RosannaKate-- In the US, there are pill forms of medications similar to cholestyramine-- Welchol and Colestipol. Maybe those would be an option for you if they have them in the UK? Cholestyramine does taste pretty awful, but it's certainly helped with my diarrhea. I don't know of anyone who took it for diarrhea and didn't get some improvement with that symptom, although some find that it's constipating or that they just hate taking it, etc. It also doesn't help with the pain or nausea, but it might be worth a try.

I'll have to ask about pill forms, thanks

Hey, does anyone struggle with really bad mucus with blood in? I'm having to go to the toilet as a matter of urgency just to get mucus and blood coming out along with horrendous stomach pains! is there anything i can do to reduce the mucus? Help pleaseeee!

I used to. Steroids stopped it.

Well my GP has said that next step is to go down the trialling steroids route if nothing comes back because my symptoms are not all IBS, the mucus I'm getting is horrendous. I need some relief from going to the toilet so much and just bleeding every time. Guess its just a waiting game to see what the GI says

I get the mucous and the blood and the pain Ive mentioned it to my doctor everytime and he seems to not worry as much as i do about it. Last time i talked to him...he told me he thinks its a functional problem and my nerves and diet contribute....(ibs)but I dont think hes done enough testing on me to qualify saying that. I had an endoscopy and flex sigmoidoscopy... and he ruled out colitis lmao....he only saw my sigmoid!!! I got tramodal for my pain it seems to work...take like an hour and only works for like 3 hours...but hey thats three hours less of pain id have to experience... My doctor wouldnt give me narcotics like Vicodin because he said itd mess more with my digestive tract... and when i was taking them it was messing with it more...so far tramodals doing well.

I have yet to find anything to reduce the mucous but i reduced the blood by eating softer predigested foods like mashed potatoes and smoothies.... Eating red meats and high in fiber foods seem to make mine worse.

Rose, as Akiva said, steroids can help. I've been back on corticosteroids (Entocort) for about 2 months now, and I haven't passed any blood since the steroids kicked in. I've had less mucus, too - still some mucus, one day I had a big glob of it, but on the whole I've had less mucus. I think a steroid trial could be enlightening - steroids don't work on IBS, but they do work on Crohn's/colitis, so if steroids work for you then you at least have a leg to stand on when you argue to your doctors that you don't feel like you have IBS. I did a trial of prednisone during my first year of being ill, when some doctors tried to write me off as having IBS. Pred worked so fantastically for me that my doctors started taking me more seriously (my GP always took me seriously and my GI would just say he didn't know - after the pred trial worked so well for me, my GP continued taking me seriously and my GI started leaning towards IBD and felt comfortable putting me on other IBD meds). That steroid trial was, for me, the turning point in my illness. I hope that if you do a steroid trial, that it's a great help to you too.

Hi Stevi, so if I read your post correctly, you pass blood (how often, how much blood, and is it bright red or dark/black?) but your doctor writes you off as having IBS basically? ("Functional disorder" is often just another way of saying "you just have IBS".) If it were me, I'd start looking for a different doctor. You do not bleed with IBS! And he can't write you off as having IBS as, like you said, he's only seen your sigmoid. A colonoscopy with biopsies should be done, and even then, the vast majority of the small intestine is still unexplored. What I'm saying is, don't give up and don't accept "functional disorder" as a diagnosis, because it really isn't. Did your doc find the source of the bleeding on the sigmoidoscopy? If not, definitely push for more tests - but maybe do so with a different doctor.

How's everybody else doing? I'm rather tired. Also, winter is supposedly going to make a comeback - we're in for several days of snow, sleet, and freezing rain according to the weather report. Lovely, my bad hip is going to hate that, so I'm expecting to be in pain once the bad weather starts up. My guts are being weird lately too, I have started going back and forth between constipation and diarrhea. You know when you get like a hard constipated "plug" of c but then behind it there's a lot of d, so you feel like you have to go but can't - and when you finally do go, everything comes out at once and then you just feel exhausted. Yeah, that's what I've been having the past few days. It's not pleasant and I'm not sure why it's happening. Anyway, I hope everybody else is doing okay. Big hugs to all!

I had a bad night/day. I hadn't been since last Thursday (which I think was down to immodium and codeine combo, but I thought it might be the amitriptyline too) anyway, Monday I had a rough day where I had to have the day off uni cos I hurt really bad. Eventually I went a few times, started solid got less and less. Anyway that cleared up. Tuesday, I went to uni, got home at 4 and was in the bathroom on and off for several hours. Anyway, tues to weds night I was sleeping in the spare bed cos my bf is snoring really badly atm. anyway, I woke up at 4.30 in the morning in pain, ran to the loo, and had lots of diarrhoea. had that horrible crampy pain and lots of poop, with a little dark red blood, it smelt foul
Feeling a bit ginger, I took an immodium cos I knew id got a driving lesson, but was literally in the loo 5 mins before mylesson. I took another one and went on lesson. didn't eat or drink anything before. I was ok when I was out, been a bit crampy tonight but not doing anything.
My consultant says hes sure ive got IBS, as the colonoscopy was clear and so were my blood and poop test. (blood wasn't completely clear, it showed high CRP and ESR)
He says that waking in the night does happen in IBS patients. He also says hes seen no evidence of the blood. I'm due to see him again in 6 weeks.
Im not enjoying the amitriptyline at all. i'm not sleeping properly, i'm having really nasty nightmares, ive still got the postural hypotension, although its only from lying to standing, im ok sitting to stand, or driving etc. its when I get up from lying on the sofa or the bed. im still having nightsweats. im generally fed up. im applying for jobs atm. I wont start til October if I get any, but when it asks for why I want to work for them and what I can bring all I can think is, I can bring you loads of sick time
fed up a bit. Sorry for the REALLY long post

how is everyone else.
RosannaKate and Stevi, i'd recommend the steroids, when I was on pred I felt so good, I actually miss steroids.

I finally had success after a course of prednisolone too - and it is my reaction to this that has made my gastro consultant go along the IBD route (and made others finally accept that it might not be 'just IBS') - Rosanna, I hope you get a chance to try this soon and that it helps (not that steroids are great, but if a short course helps then its worth the side effects/risks).
In terms of exercise, I am finding that anything more strenuous than a brisk walk makes my nausea worse, meaning I am a bit stuck at walking and nothing else - any suggestions anyone?
Sorry to hear people are having such a mixed time of it. I started back at work (again) today, and typically felt unwell all day - nausea++ abdo pain and some constipation (which as you say often hides diarrhoea which no-one needs!) - also having fatigue issues, but I am glad to be able to go to work in some capacity (i am stuck in an office on light duties and restricted hours) so I know it could be worse
Hugs back to all

When the doctor did my sigmoid he found nothing but also did not take any biopsies. Yesterday I saw my Primary doctor and got referred to someone new... this doctor that i was seeing is a surgeon...due to insurance reasons and he was doing all my procedures.... honestly i just think i need someone with better experience and more efficiency. In my endoscopy he did find inflammation, gastritis esophagitis and edema in my duodenum. When i get blood its useally bright red sometimes a little darker ... and its not a whole lot ... i used to right it off as a hemorrhoid... but now im not so sure ... sometimes its inside my mucus and sometimes it coats my stool(lovely), i get it on my toilet paper... and its a weekly not daily thing.... But I will be going to a real GI soon enough

I hope you get to feeling better cat!

For those asking about Amitryptyline, I found it was 4-6 weeks before it improved my symptoms, and conversely my side effects (tiredness) went away after 4 weeks when my dose increased from 10mg to 20mg!

The positives certainly have to outweigh the negatives but my advice is to give it time before you decide.

I think that steriods will quite possibly have to be the next step as i can't continue like this. Its a bit hard really because they cant pin point a diagnosis. Got some weird burning feeling in my stomach. Struggling with it all. Hopefully we'll get some results though, still waiting on pill cam results -_-!

Akiva, I think you need a new doc too. People with IBS most definitely do NOT get up in the night to poo! My understanding of it is like this - IBS is thought to be a brain-gut malfunction (if you even believe IBS is a real thing, that is). So basically they think that in IBS, the brain misfires and mistakenly sends signals to the guts to cramp, which then causes d, nausea, etc. When you sleep, your brain goes to sleep, and it then cannot send the misfiring signals to your gut - so as my GI told me, with IBS you absolutely would not be getting up in the night to go. But with IBD, obviously there's inflammation in the gut, and that doesn't go away when you sleep, so the inflammation can still cause you symptoms even when you're sleeping.

And with your high CRP and ESR (how high were they?) - it absolutely sounds like it's not IBS to me. I know you're busy with school/work and driving lessons and everything else, but when you have a moment, try to find a new/better doctor who takes you seriously and who doesn't write off all your symptoms as being IBS when they clearly aren't.

Madmouse, I had to get into remission before I was able to exercise properly, so that may be the case for you too. I seem to recall that I could do yoga most of the time though, even when I wasn't feeling well (I would do yoga at home so that I could run to the bathroom if need be). Walking is actually kind of rough on me, I have arthritis or something in my right hip, and too much walking aggravates it. Jogging is out of the question, that's so super painful on my hip. But I can lift weights, do yoga, and ride my bike just fine. So, perhaps try doing a bit of yoga and see how that goes. The important things to remember are to ease into exercise - start slowly and listen to your body. If something hurts or your body responds poorly, try a different form of exercise.

Oh man! My ESR is only 27, down from 51 before treatment.

Lowest ESR and calprotectin results so far, I almost want to back to see my snooty GI that stopped me from getting LDN.

You can't argue with those numbers!

on a proud-of-me moment I managed to take the bus into town today and get the train back. Normally I would have been a ball of nerves and I'm still having a mini flare but I did so well. It's such a basic thing but so amazing to be able to do. Walked over 5 miles in total today Come a long way from not being able to stand up without passing out :dusty:

Oh and my physiotherapist is LOVELY. Seriously. She took a really thorough history and she said she doesn't think my exercise pain is skeletal but she'll try to help and the pain in my back sounds autoimmune but she will try to help with that too. Could only get an appointment 4 weeks away though!

Anyone get sudden terrible stabbing pains with the appendix or cecum... i have been for the past few days and it doesnt last long but its very sudden and painful.

Yeah I do stevi..

it happens sporadically.. and the pain doesn't last long. Ive already had my appendix removed.. and im not too concerned. How does it affect you?

Lsgs - yay! That is so good. Like you say.. they can't deny those results.

how is everybody?

So, now been told unless i am rereferred to the GI as urgent i have to wait until july. This is crazy. My doctor said that if i wanted it pushed forward i have to phone up and get them to move it and thst hes done all he can. Its rediculious. I have one last idea, i've got a meeting with the occupational health nurse on Wednesday and she can refer me to specialists, so i think maybe get her to refer me as urgent. I guess thats all i've got left to try. This is getting me down to the point where i really cant be bothered to keep going, its too hard when i have no help. I can't work, i can't have a social life and i cant live normally... its ruined my life so badly and is just getting worse day by day.
I've been getting massive burning feelings through my stomach and its not letting up, i told my GP and he just said to wait until july because there isn't anything he can do. I can't cope with this right now, its all getting way too much
How is everyone today? I'm horrendous, can hardly move with this burning feeling and i feel sick. Yuck. I've spend all day back and forth from the loo and im exhausted! Builders are drilling and cutting and banging so i can't nap i neeeeed energy!

RosannaKate. Go to PALS at your hospital (you can phone, email etc) say that your being passed from pillar to post and no ones helping. that might get things moving.

If you have symptoms that are that severe and your GP wont go an urgent referral, you need to change GP...
In the meantime I agree, go via PALS.

So I've been sick @ work since noon with D and gas and stomach cramps and the gas pain. Now it's just no poop but my bum is doing the dry heave that your stomach gets when you have nothing in your stomach. It feels like razor blades coming down my poop chute. Deep breathing I think has been saving my chute from leaving my body I think. Im home now and really don't want to go to the emergency room and take up thier time. In my town there's a lot of shootings and stabbings. Plus it's over a nine hour venture. I'm hungry and thinking of taking my D medicine and pain pills. What do you guys think?

melibean - im sorry to hear you are feeling so rubbish. You know your body best, and if you think you can manage with your meds, then definately give that a try - as you know, if you have had profuse D then it will spasm like that until it realises there is nothing left to come out (it the same idea as your stomach when you vomit - the muscles spasm). Hope you feel better soon!

Melibean said:

So I've been sick @ work since noon with D and gas and stomach cramps and the gas pain. Now it's just no poop but my bum is doing the dry heave that your stomach gets when you have nothing in your stomach. It feels like razor blades coming down my poop chute. Deep breathing I think has been saving my chute from leaving my body I think. Im home now and really don't want to go to the emergency room and take up thier time. In my town there's a lot of shootings and stabbings. Plus it's over a nine hour venture. I'm hungry and thinking of taking my D medicine and pain pills. What do you guys think?

Click to expand...

If it was me I would take the diarrhoea meds and pain pills and see what happens. I also have buscopan on hand for any crampy pains which can be helpful in certain circumstances. Hope you feel better soon!

Melibean, are you doing any better now? I'm always one to defer to, if you're questioning whether to go to the ER, then just go to the ER! Better safe than sorry. I hope you're doing okay now, please keep us posted.

How's everyone doing today? I had a bad episode of nausea yesterday, so I took a bunch of Zofran, but that made me constipated, so now I'm dealing with constipation and some lovely cramps. My hip is aching too, to the point that I'm limping a bit today. So, I've been better. I'm functional though so I'm not terrible overall, just not great. How's everyone else? Is it finally springtime where you are? It seems to finally be springtime here, it hasn't snowed in nearly a week!

I'm still struggling! After having the whole of last week off work i finally went back yesterday, feeling yucky however! Lots of D with mucus and blood and then the worst cramps ever! But hey ho, got to go again today but still only part time as my GP has agreed this for now. Not much i'm physically able to though. Oh well, hope everyone else is well!

It certainly ain't springtime in Scotland. It's still rainy, cold and gross. Normally by this time it's at least getting a little bit warmer and brighter.

I have my appointment next week to see rheumy to see if the lumps are anything to worry about, kind of panicking now. Actually not kind of, really panicking now :O

Does anyone have any problems with their periods with their symptoms flaring? As you have probably gathered by now, i am still in a flare -_- i've noticed that everytime im in a flare and my stomach is swollen i can't come on my period which has always been very regular, i wonder if its got anything to do.with the swelling on my stomach pushing down on my system. I still get the cramping pain i'd get when on my period, but no blood what so ever. Its irritating that its all going wrong and my guess is thay its joined in some way or another!

My perieds been crazy for a few years now... ive had one since i started experiencing symptoms though. Its was rough double the cramps! I am so fed up with feeling this way! My doctors suck and make me feel like im bugging them, but ive felt terrible for months with no real treatment to make it better and no real answer on why i feel this way. Im going crazy. They dont get it lol.

Yeah mime are worse when in flare.
Rosannakate is it possible that you've lost weight in flare so your body stops having periods. I know a friend who used to stop eating and deliberately poop to make a lower weight for her riding club. If she was doing that she didnt come on, but if she was at normal weight she did.

Cat-a-Tonic said:

Melibean, are you doing any better now? I'm always one to defer to, if you're questioning whether to go to the ER, then just go to the ER! Better safe than sorry. I hope you're doing okay now, please keep us posted.

How's everyone doing today? I had a bad episode of nausea yesterday, so I took a bunch of Zofran, but that made me constipated, so now I'm dealing with constipation and some lovely cramps. My hip is aching too, to the point that I'm limping a bit today. So, I've been better. I'm functional though so I'm not terrible overall, just not great. How's everyone else? Is it finally springtime where you are? It seems to finally be springtime here, it hasn't snowed in nearly a week!

Click to expand...

Thanks everyone for the well wishes. My pain is back down to a five and BM's are back to it's sporatic cycle. I'm going to call my insurance today to get a new Gp and new Gas doc. Today is my day off so I think I'm going set up an appointment hopefully for later this week, then drive down to my old doctors offices and see if I need to sign a release so my records can go over. I think though it should all be visible to the new doc because it's suppose to be all electronic now.

Maybe thats it theb akiva, my stomach just feels so swollen and heavy, its horrible. Its really painful at the moment too,got nowhere with the hospital still though

im struggling with my hospital atm too. My GP says if im in pain etc to go to to a and e. i said isn't it your job to keep me out of a and e....
ah well
Im not sure what to suggest other then PALS.

Do we introduce ourselves here or do we create a new post?

Thanks!

My occupational health nurse is trying to help me now. Hopefully she can push them and get me something sooner as i'm desperate!

Jackkat, its up to you chick, can do both if you want were all here for support!

I tell you what, i am sick of having d! Every single day for 2 years, it really is killing me! My stomach is burning so bad and my bowels are aching urgh, i need it to stop now!!!

How's everybody been doing? I have had quite a bad week with lots of fatigue, some nausea & cramping, and a wicked migraine that lasted for about 4 days. Fun times. I'm finally starting to recover I think. I haven't been to the gym at all this week - you know it's bad when I can't work out! So I hope everyone else has been doing better than I have been.

Melibean, good luck with finding new doctors! Keep us posted on how that goes.

Rose, have you asked your GP about something like Lomotil to try to get the d under control?

Jackkat, welcome to the forum! Like Rose said, you can chat with us in here or start your own thread or both, whatever you feel most comfortable with.

lsgs, best of luck with your appointment next week. I hope everything turns out okay. Please update us when you're able to.

Got prescribed anti-anxiety meds for my pain... Either my doctors crazy or he thinks I am. Hahaha at least I can be happily in pain right?

I asked Cat, he refused he said he wont give me anything else until i've seen the consultant which is still in july

So i'm not doing too well today, went to see my on and off boyfriend and took a really horrendous turn at his ending up bed bound at his which is all i needed first time round his in a while, i think its confirmed he cant cope being with me with this problem :/

This is a strange theory, but does anyone know about contraceptive implants and whether they could have any affect on stomachs or create bowel problems... its just strange because i had mine 3 weeks before my stomach started and wonder if that might have done anything to set me off

I've posted this before in various places. Might be helpful to anyone suffering GI touble:

Chronic intestinal trouble without signs of inflammation is likely to be labeled IBS. IBS seems to be different things to different people. Below is a list of things that people diagnosed with GI trouble have claimed to experience. Most people diagnosed with IBS will find one or more things here that are relevant to them. Some are widely accepted (like FODMAPs), some are controversial (like candida overgrowth, MSG intolerance). I can’t guarantee that all of the information is correct. Common sense rules apply – don’t diagnose yourself, don’t prescribe yourself medication, talk to your Dr before doing anything drastic.



FODMAPs intolerance – Onions, Garlic, wheat, barley, certain fruits and vegetables and grains have fermentable oligosaccharides that trigger intestinal trouble in some people. Common in IBS.

Anxiety – some believe that this is enough to cause functional GI disorders like IBS. Even if it’s not the sole cause, it is likely to exacerbate symptoms or possibly enable the problems to occur in the first place.

Celiac disease or gluten intolerance –Celiac is a well-characterized intolerance to gluten/wheat. It is treated by life-long abstinence from wheat and gluten-containing food. Other gluten intolerances are not as well-defined, but may be treated similarly

Lactose intolerance – inability to break down lactose in dairy products can cause GI problems. Treated by avoiding dairy products and/or taking supplemental enzymes

Dairy intolerance – Sometimes, it’s not the lactose but casein or other components of milk that cause GI issues. Treat it by avoiding dairy.

SIBO (small intestinal bacterial overgrowth) – can cause bloating, discomfort, diarrhea. Treated with antibiotics, probiotics, fiber, low-carb diets.

Imbalance in intestinal microflora – bad diet, antibiotics, etc can result in this. Treated with probiotics, fiber supplements, diet modifications.

Intolerance of artificial sweeteners – aspartame, sucralose, etc

Bile acid malabsorption – intestinal trouble can arise from a reaction to bile salts secreted by the liver (through the gall bladder). Can be treated by drugs to bind up the bile salts and maybe calcium supplements?

Fructose intolerance - I don't know too much about this. Seems like the obvious treatment is to avoid high fructose corn syrup and other sources of fructose.

Oxalate intolerance –Apparently Oxalobacter formigene, the intestinal bacterium that breaks down oxalate for us, can be killed off by antibiotics. Without this, oxalate can cause a variety of problems including IBS-like symptoms. Treatment might include avoiding foods high in oxalate – spinach, strawberries, wheat, oats, tea, chocolate, etc. Possibly helped by taking calcium supplements with meals?

Candida Albicans – Some claim that too much candida albicans in the intestine is the cause of a long list of medical problems including IBS-like problems. The treatment can include a very low-carb diet, probiotics (including saccharomyces boulardii) and antifungal supplements.

Mild IBD – Some think that many cases of IBS are mild cases of IBD where (possibly) the body’s immune system mounts an inappropriate response to intestinal microbes (bacteria, etc). Treated by drugs and maybe diet, supplements, probiotics, etc

C. Diff. - Clostridium Difficile in the intestine can cause serious (even life-threatening) trouble - usually severe diarrhea. It can occur after taking antibiotics. Should be treated immediately.

Salicylate intolerance - salicylate is in some foods, particularly blackberries, blueberries, cantaloupes, dates, raisins, kiwi fruits, guavas, apricots, green pepper, olives, tomatoes, radish and chicory; peanuts almonds, mushrooms. I don't know too much else about this one...

Intolerance of glutamate and/or other excitatory amino acids – MSG appears in prepared foods under different names (hydrolyzed vegetable protein, “natural flavoring” etc). Aspartate comes from the breakdown of aspartame. Some believe that too much of these amino acids can cause a variety of problems including GI troubles. Avoiding MSG and aspartame might help.

Intolerance of histamine in food – present in cheese, beer, wine, pickles, soy sauce, spinach, eggplant, fish, many fermented food and many other things.

Acetaminophen (APAP, Tylenol, Paracetamol) - alters serotonin metabolism and may contribute to functional GI trouble

NSAIDS (Ibuprofen, aspirin, etc) - well known to cause gastric ulcers, might also cause intestinal damage. Possibly linked to microscopic colitis.

Vitamin deficiencies-

Excessive consumption of alcohol

Parasites – giardia, worms, etc – can be treated by drugs

Viral or bacterial infection –

Cancer or other diseases -

SN8888, in addition to what you wrote, I'd like to add that other inflammatory/autoimmune illnesses can cause gastro-type symptoms, and many also respond to things like prednisone. Illnesses like Addison's, Behcet's, Lupus are the ones that come to mind.

There was once a girl on the forum who was having a lot of nausea, vomiting, and dizziness. Then she started having vertigo, and ended up being diagnosed with Meniere's.

Also, someone on the forum was just diagnosed with diffuse systemic scleroderma. I hadn't heard of it but she shared some good information about it in this thread:
http://www.crohnsforum.com/showthread.php?t=59975

Long story short, there are a ton of illnesses that can cause these type of symptoms! And I agree that it can be dangerous to self-diagnose, but on the other hand, when you're having tons of symptoms and your doctors say things like, "It's just IBS, it's women's troubles, it's all in your head, you're just depressed, you need to deal with stress better" etc, of course it's okay to not accept that and to keep fighting for a proper diagnosis. At the very least, we can take some educated guesses. In my case, my doctors ruled out numerous things (it's not celiac, Addison's, nor Lupus) but I respond really well to things like pred and Entocort. So the presumption that both I and my doctors have is, it's probably some mild form of IBD (my GI is leaning towards microscopic colitis). My GI is treating me as though I have IBD, and I have responded very well to those treatments and I spent 2 lovely years in remission. So, while I agree that self-diagnosing can be dangerous, I think it's also dangerous to just accept something like "IBS" or anxiety as a diagnosis if you're really suffering. Untreated, festering IBD can cause scar tissue and strictures and all sorts of trouble. An educated guess is not unreasonable in my opinion as long as your doctors are on board with it and monitor you closely, as has been the case for me.

I am not too familiar with some of those illnesses, but I should add them to the list.
Regarding self diagnosis - I agree with what you said, but I don't want to be responsible for someone skipping a visit to their Dr because of something I wrote, so I may sound a little cautious.

I think hell try steriods on my when his nerve plan falls through. just gonna try it for like a week first before i shoot it down

I agree that both self diagnosis and blindly accepting 'it just IBS' are both as dangerous. I am lucky that my GI is willing to treat me without a definitive diagnosis, and whilst I am by no means symptom free, I am able to lead a relatively normal life (i.e. go to work - not in my true role, but in some capacity whilst i recover, meet friends, eat and drink as my body allows etc...). My advice would be to try anything with the proper support (and Im sure most of us would try literally anything if there is a chance it will help), have honest and frank discussions with both drs and friends/family/work and try to remember you are not alone! This can be very isolating and debilitating, but if you have made it to here, you are not on your own and you will get some progress eventually, it just the slow being stuck part of the process thats the hardest.
On a purely selfish note, anyone got any ideas to help with sleep? ta! Hugs to everyone

Madmouse, whats the reason your struggling to sleep? Is it pain or just disturbance? Or just struggling to drift off?

Not too sure really. I'm not convinced the pain is waking me currently, but when I wake I often have some pain (if that makes sense). I seem to be able to get to sleep (most days) but its staying asleep that is an issue. Its just getting a little frustrating as fatigue is one of my problematic symptoms (its stopping me from doing my actual job etc...) and not getting a good nights sleep is obviously not going to help! I am just coming off my pred (just one dose left) and added amitriptyline 3 weeks ago - this initially helped but now isnt. Just after any tips anyone has? Thanks in advance

Well the anti anxiety med knocks me out for almost a whole nights
worth of sleeping maybe you need something just to let you sleep ya know? I disagree with the way my doctors approaching me he doesnt even know if its ibd and hes trying to treat it like ibs... because the pains all in my nerves ... its a lie i take these stupid pills and the pain that i feel doesnt go away.

If you can get it... pot makes you sleep like a cat.

Well i wake up a lot in the night and struggle to fall back asleep as the pain is irritating. I sort of have to distract my mind to get back to sleep, the way that works for me to distract is naming an animal for each letter of the alphabet... its the only way i can distract myself from thinking of the pain. Other than that, i cant find any way to stay asleep. I struggle with sleep paralysis though so its partly that and partly pain. I just have to find ways to get back to sleep after waking

ive been waking up lately with my arms not being ablw to move or their numb or they ache same with my legs its odd

24 female. 2 weeks ago I woke up with sharp pain by my naval that was distinctly on the left side and intense diarrhea. D subsided throughout the day but pain continued. Next morning same thing- diarrhea right when I woke up, pain continued. Day 3 morning diarrhea but pain felt slightly better but still every time it tried to eat the smallest bite of food the pain would begin stabbing. That night the pain became so SEVERE I thought I was going to pass out, progressively got worse but the diarrhea had stopped. Went to Northwestern ER and was admitted immediately, no fever but when I got to the room I started projectile vomiting. Dr thought it was appendix even though I could pinpoint the pain to the left side. CT revealed low lying cecum, mucousal hyperenhancement and inflammation of terminal ileum, fat stranding rectum. Due to skip lesions Crohn's was suggested. I was admitted for the next 2 days receiving IV antibiotics & morphine. stool negative c diff etc. LARGE volume mucous diarrhea, have never seen anything like that before- looked like something out of the movie alien.No fever until 8 hours into IV antibiotics. Elevated white blood cell count, anemia negative but very low. Colonoscopy today appears normal but still awaiting biopsy results of the inflamed areas: Chronic diarrhea, fatigue, nausea, chills, hair loss, abdominal pain, mouth sores for the last 12+ Months. Had thyroid checked 6 months ago because I feel sick all the time, that was negative. I had an upper GI ulcer diagnosed a year ago after tar colored stool. Former GI didn't do scope then instead prescribed Prilosec and antibiotics. I don't feel right and haven't for a long time. My parents are relieved by today's findings and I'm worried that f the biopsy comes back negative they will insist I everything is fine and dismiss my concerns/ wanting of further testing. Am I over reacting? The area in question was the small bowel so is it normal for a colonoscopy to appear this way? Can anything else like an infection cause only the TI to be inflamed? Infection?

Starving artist - sorry to hear you are having such a hard time - hope you get some answers and feel better soon.

Sorry for a further question, but I thought you guys are the best people to ask. Does anyone else have problems with fluids? I am never thirsty, and all fluids make my nausea much worse (hot fluids make me vomit). Anyone else had this? Every dr I've spoken to can't give me an answer, and I often get lecturered to drink more - which is tough when it makes the nausea (and usually the pain) much worse. Thanks in advance. Hope everyone is having a gd day - its nice and sunny here

Madmouse - I don't drink much either, I know I should but I find it difficult, its not that I feel sick as such but its like its stuck at the bottom of my oesophagus.

Starving Artist - Sounds like you've been through a pretty rough time, I hope you feeling better then you did. I know parents aren't always supportive. Some of the others on here are in the same boat and might be able to give you advice

Madmouse, i get sick from just water alot of the time, and if its not vomit its hiccups which makes me feel more sick. Right now i struggle to hold solids or liquids down. I brought it up and asked my GP why and allhe said is 'its probably linked to everything else going on'... useful stuff ayy!

Yay, another sunny day! Means i can get my dresses out finally! Although i dont like my legs as when i first fell ill my weight really badly went up and down and i have strech marks left all down the backs of my legs means dark tights! But its sunny, so trying to stay positive.

However saying that, my stomach is being seriously nasty today and its very painful! Been up since stupid o'clock thanks to d -__- but hopefully it might just clear its self out and be nice later lol! How's everyone else today? Anyone heard from Cindy? Do we know how she is?

Hi Cat, have you heard from McCindy? I am just wondering how she is doing?

Starving artist ask for a pill cam that can see your small intestines. C-scopy I heard only gets the large.

Happy (and anyone else wondering about Cindy) - I heard from Cindy a week or two ago, she posted something on my facebook and she just said that her life has been crazy lately which is why she hasn't been on the forum. I didn't pry for details so I don't know for sure how she's been doing, but she hasn't dropped off the face of the earth. I can check in with her on FB again and let her know that the forum misses her.

Hi Starving Artist, welcome to the forum. I agree with Melibean - the colonoscopy only sees the very end of the small intestine, and the upper endoscopy only sees the very beginning of it. Since Crohn's can manifest anywhere in the GI tract (literally anywhere from mouth to anus), that's a lot of small intestine that could be hiding illness that the scopes haven't seen yet. I agree that the pill cam would be a good idea - it can't take biopsies, but it can see the entirety of the small intestine. Definitely something to ask your doctor about once you get those biopsy results back. Also, as far as your parents being relieved - it sounds like they aren't really understanding the situation. Having terrible symptoms but no answers isn't really a relief for most of us - obviously something is still wrong, and having a normal result doesn't make the mystery illness magically disappear! It sounds to me like your parents just want you to be healthy but aren't really supporting you very well. Your reality (illness) vs what they want to be reality (you being fine) aren't meshing right now - maybe explain to them that you realize they hope it's nothing serious, but that one normal result doesn't automatically mean you're healthy because your symptoms are telling you otherwise. If you can't get it through to them, then I really feel for you. My dad tries to be supportive but he's basically clueless, and my mom just keeps ragging on me about diet and how she thinks I would be magically cured if I just changed my diet. I can't get through to her. Anyway, I'm rambling - welcome, I hope you get some answers, and I hope you have supportive people in your life to make up for your parents' iffy reaction.

Rose, hun, everybody has stretch marks! I know they feel super unattractive, but they're also super common so try not to worry about them too much. I have them all over my booty, hips, and thighs. When I was a teenager and going through puberty, I went from being stick-thin to having rather womanly hips, ha ha, but it happened very quickly so I suddenly had stretch marks from that quick change in my body. I was *so* self-conscious about it, but really and truly, almost everyone has stretch marks either because of weight gain or growth spurt or puberty changes or whatever. My husband gained a bit of weight after we got married and he has stretch marks because of that, so even guys get them. It's nothing to beat yourself up over - wear those dresses and be proud!

Madmouse and Akiva - with the fluids making you nauseous thing, have you guys been tested for gastroparesis and/or have you had your esophageal motility tested? It might be that either your esophagus isn't moving fluids into your stomach correctly, or your stomach isn't moving fluids into the intestines correctly. Particularly with what Akiva said about it seeming like it just sits in the esophagus, I would ask to have the esophageal manometry test to check your esophageal motility.

Oh, and Madmouse, if you're just coming off of pred, you may find you're better able to sleep once it's out of your system (give it a couple weeks from the last dose for it to filter out of your system). Pred can definitely interrupt sleep, even with something like amitriptyline on board too. You will hopefully get better sleep soon once you're no longer under the effects of pred!

How's everybody doing today? I'm so-so. I've had wicked fatigue for like a week now, and my bad hip has been horrendous lately. I also had a migraine last week that lasted about 4-5 days. The migraine is gone but I'm still not feeling good - I'm functional but that's about it. I don't know if I'm in a mini-flare or what is going on. I just feel really bleh and want to sleep a lot. I slept 9 hours Sat night/Sun morning, but I still woke up feeling exhausted. I need to contact my GI and ask if he can bump up my dose of Entocort, I think. I'm on a low dose (3 mg) and I don't think it's doing enough.

Hey Cat, bloody strech marks are super unattractive when the whole top parts of both legs are covered in them! But i wore my dress and only slightly tanned tights and said stuff it who cares! So thats good! Had a rough day with work and pain... they aren't great together! Need stronger pain relief!

As for sleeping! I don't know why! I went to bed at 9pm friday and didnt wake up until 1pm the next day and i'm still exhausted! All i seem to do is work and sleep! Constantly exhausted!

Hope everyone else is ok

Ive got some fantastic stretch marks on my stomach atm, I had a few days where I could physically feel my stomach was stretching, it was bad, now ive got some purple ones. Just don't show my tummy off.
I wish I could sleep. Ive been averaging 3 hours sleep a night for the past 3 weeks, and I was only getting 4 before that. I crave it, it happens at all the wrong times. I got massively told off at uni the other week cos I fell asleep in lesson.

Yay sun again! How is everyone today? I'm a bit naff, feel like i havent stopped bleeding all morning, so uncomfortable stupid bowel problems, not to mention pain, i need a stronger pain killer, which until July i can't get right now.... thats still ages away had to finish work early yesterday (great when i work part time anyway!) the pain i was in was horrendous and i couldn't move it hurt so much! But today is another day, so attempting again to stay my full part time hours, can't wait till friday... DAY OFF! I miss being at school and getting so much lovely holiday!

hi guys and gals - I have been sent this and thought we all could relate to it...
http://www.buzzfeed.com/adamdavis/things-only-perpetually-tired-people-will-understand

Rheumatologist isn't worried about lumps. I was a bit annoyed cause he was more concerned with teaching his student than getting a proper history from me. I don't mind the teaching part at all but it was a bit frustrating.

I'm so fed up today and I don't know why. I have been in the worst mood this week, I am a nightmare lol.

Hey everyone. I've got a lot of good news. I'm done being a caregiver for my mentally ill mom and uncle. They're in a nursing facility now. I also got help with insurance. One of my dear friends is referring me to her primary doctor. I'll hopefully get a 2nd opinion from a new GI doctor.

I definitely want another opinion about Crohns. Would a barium swallow or barium enema help with a diagnosis more or less than a colonoscopy? How about a PillCam?

Moogle, my GI said that MRE (MRI-enterography) is very similar but also superior to the barium tests - so rather than going for barium swallow/barium enema, I would go for MRE instead. Pill cam is very good to have too - both MRE and pill cam can get views of your small intestine. Obviously MRE won't get an inside view like pill cam will, but it can see if there's any thickening, inflammation, strictures, etc. Pill cam can see the entirety of the small intestine but can't take biopsies. For what it's worth, I had the pill cam done but I haven't had an MRE yet - my GI felt like pill cam was the more worthwhile of the 2 tests to have. (I haven't had the barium tests yet either and probably won't since my GI said that MRE is similar but superior.) If no doctor has taken a look at your small intestines yet, I would say either MRE or pill cam (make sure your insurance covers it - including, if you have the "dummy" patency capsule for the pill cam, I was told most insurance does NOT cover it and for some reason it costs almost as much as the actual pill cam! - but, they can do an MRE first to make sure you don't have strictures that would cause the pill cam to get stuck).

lsgs, did your rheumy have an explanation as to what's causing the lumps? My GI had a student with him for a little while - she'd come in the room first and I'd ask her all my questions, presuming that she'd then tell them to my GI. But nope, she just wrote down my questions... and did nothing with them. Ugh. So then my GI would come in the exam room and I'd have to repeat myself. As if doctor appointments aren't frustrating enough with just one doctor involved, ha ha. Anyway, I totally relate and understand your frustration! I understand that the students need to learn, but not at the expense of the patient.

Rose, I have Friday off as well and I can't wait! I've been so fatigued lately, I am looking forward to a lovely long weekend to rest up (I do have to go to the in-laws' on Easter, but otherwise I'm going to rest and relax and hopefully get over this fatigue).

Speaking of fatigue, I had emailed my GI about it, and he responded yesterday saying that it's okay to increase my dose of Entocort for a little while. I'm going from 3 mg to 6 mg, going to stay on 6 mg for a week and then will follow up with my GI and let him know how it's going. I doubt a week will do much so I'm hoping he lets me stay on 6 mg for longer. But that's the plan for now. I haven't been doing very well lately so I hope this gets me feeling better!

I'm glad your GI is cooperating Cat! Its more than can be said for mine still July... i've spoken to 6 dofferent people and noone will help me or cooperate! Its head doing! Off from work again today very ill again, so glad to have a few days rest, think i certianly need it!

Don't really know what to do anymore, just want to give up now useless trying to get any form of diagnosis when i'm being given no help from healthcare professionals (

took my little brother and sister out along with my twin sister yesterday. took immodium and stuff so I was ok, only had an icecream until I got home to make sure I was ok. Woke up this morning, got a coldsore, a cracking headache, a sore throat and mouth ulcers. not amused. had dinner and now im in and out the loo, so feeling a tad sorry for myself.

RosannaKate - have you contacted PALs? I may have to myself as my dr apparently put 6 months on the file instead of 6 weeks and the secretary is not helping.

I HATE DOCTORS

Hey,

I've not been on for ages because I've trying to stop myself going crazy. I did as much as I could to stop thinking about being ill and just try to block it out. It meant staying away from anything that reminded me of the fact that I'm ill.

It's only taken four months, but I saw the GI today and all my biopsies were clear. He says the symptoms I have are small bowel or pancreas so he didn't seem surprised about clear biopsies. He also said my symptoms are a sign of really bad damage which I already suspected. It takes me three days to vacuum my house because I get out of breath, my muscles start shaking and I can't walk very well after a couple of rooms. So I wasn't shocked when he said that. He agreed with me that the elemental drink might help because of the huge amounts of supplements I'm taking. So I'm getting a NHS dietician referral. He said my private dietician was the best one but a second one can't do any harm.

The plan is barium meal and another abdo ultrasound. My last one was 4 years ago so something might have changed.

Thought I'd pop back and let you know how things are progressing. Appreciated your help when I was going crazy a few months ago.

I'm really exhausted after today so I've not had chance to have a read back to see how everyone else is doing. But hugs to everyone.

Physio re-booked for mid may and new Rheumy early June.

The memory problems I had a brain MRI for have returned and seemed to have progressed. I didn't like the symptom before and what it may mean and was so happy when the MRI was normal. It went away after that too. Now it is back, worse and I am facing those worries all over again. I am going to let my Dr know.

Other than that doing ok I suppose, getting really fed up of living at home still. I love my mother so much but she has had alot of problems I have supported her through. I have no issues doing that but I also have to live with those problems in my home environment. What I want at my stage of life is to be living elsewhere so I visit my mother to help out then return to my own home so I can relax and live my own life.

But I don't really have a life of my own and I have no choice but to live with her problems

I feel bad thinking that way sometimes but really to want a life of my own and not have to live with someone else's dramas isn't asking much at my age and with my own problems being all encompassing!

Akiva, i did contact PALs, they've said they'll look into it... its all alot of waiting around now... irritating!!

This is so painful! Woke up this morning and its practically like i've taken 2 huge sachets of laxatives! I really just don't know what to do anymore my doctor wont give me any other tablets and my bowels are aching like mad! This is crazy! They can not just call this IBS! I seriously cant take this anymore... its been way too long and of they'd have just found the problem at the start i wouldnt be in this mess now!

RosannaKate said:

This is so painful! Woke up this morning and its practically like i've taken 2 huge sachets of laxatives! I really just don't know what to do anymore my doctor wont give me any other tablets and my bowels are aching like mad! This is crazy! They can not just call this IBS! I seriously cant take this anymore... its been way too long and of they'd have just found the problem at the start i wouldnt be in this mess now!

Click to expand...

I feel for you Have you ever tried tramodol? It didnt work for me but it might for you.... The only thing that actually gets rid of my pain is like two vicoden... but later on through the week Im in even more pain because it like seriously shuts your bowels down.

They wont give me tramadol until i've seen my GI, quite irritating for me!

For now I suggest eating really bland.

I can't eat at all right now, everything i eat i seem to be throwing back up :/ oh well

my GP gave me tramadol. it makes me sick codeine is best for me, but it makes me dizzy and faint, so I cant take it often, or if I do I cant drive or go to work etc

I take codiene already Akiva, it doesnt even touch my pain its useless for me other than slightly helping with d sometimes

ah, codeine doesn't get rid of all of it, but deffo takes edge off for me.
Don't know what else to suggest, im still trying to sort my drs out. its like banging your head against a brick wall.

I know the feeling Akiva! I've hit the wall face first right now trying to get any communication to sort this appt out and pull it forward! Still in July why is it they cant communicate with each other to help us!

I hate doctors, food, pooping, pain, and not being normal

Were all normal Stevi, just because we have medical problems it doesn't make us no longer normal. For us, this is our normal, just because others may define us as different, were still normal. Just in our own, incredibly annoying way lol!

I cant except this to be my normal

Stevi, you shouldn't have to accept it - nobody should have to live this way and everyone should have doctors who are on the ball and treat the patient with respect rather than as though they're a crazy hypochondriac. I think what Rose meant was, you shouldn't let your illness define you. You the person are so much more than you the illness!

As far as "normal" goes - I don't think there's any such thing. I don't think that's a bad thing, and I think us chronically ill folks definitely have more to adapt to, but I don't accept that there's a such thing as "normal" (and therefore, there's not really a "new normal" either). To accept a "new normal" in situations like Stevi or Rose's, that kind of sounds like giving up hope of feeling better, and it also sounds like having to accept poor treatment from doctors - I don't think you guys should accept either of those things. Speaking as someone who spent 2 years in remission and who is fighting hard to get back into remission, I can say that it is definitely possible to feel a lot better (yes, even while still undiagnosed) and there are good doctors out there - it sounds like you need to find someone who will listen to you and not blow you off for months at a time. Keep fighting, ladies!

Well lets just say my day has been far from normal. The day didnt start too badly but i very quickly deteriorated and i started feeling very very sick, i brushed it off as just my meds and tummy as thats the usual reason, but it just got worse, i couldnt hold any food down or even water and then i felt so dizzy my legs went like complete jelly and i couldnt walk at all... got my sister to help me into bed and thought i'll just sleep it off and be fine. Woke up about an hour later, couldn't see, couldnt stand, felt sicker than ever before... said to my mum i need help, she drove me to A&E where they said it looks like low sugar levels and a mix of my meds not getting on with me very well. After 4 hours of fluids and lots of antinausea drugs i was let out to go home, only just feel alive... but my gosh what an ordeal, need my bed now again, not coping anymore and don't know how long i can keep doing this. I need help and right now i'm being fobbed off with more drugs bad day!

sounds really scary did they say what your sugar levels were?
You can get a home machine if your worried it might happen again. What drugs have they given you now?

Hey there everyone. I know I've been MIA for just about ever. It's been seriously about the worst couple of months ever. First I had to go on administrative leave because of my memory problems, and then go to Mayo to have all that testing done on top of my GI stuff. Then, while I was waiting for all the results after that, the worst week started. Monday, March 31st, my hubs got laid off from his job. Then that Wednesday the docs told me that my neuro/psych test results were not good. Basically they showed moderate cognitive and memory damage resulting from the surgery and the docs concluded that I would no longer be able to perform my Supervisor job. I won't be able to be a Respiratory Therapist anymore either. While I was waiting for these results, I had my review at work, and if I had been able to keep my job, I would have gotten a $3,000 a year raise. Long story short, we both lost our jobs here in Minnesota in the same week. Our lease is up the end of April, so we will be moving back to Wisconsin this coming weekend. We've been spending this month scrambling to find a place to rent back in Eau Claire, and I've been fighting with long term disability trying to get approved. It's been five months that I've been fighting with them, but this last week, they finally approved my claim. Just today, we finally found a house. We can't move in until mid-June, so we'll be living with my in-laws with most of our stuff in storage until then.
On the GI front, they did a barium CT, labwork and an EGD on me. the barium CT showed no GI inflammation and a couple of renal cysts. The lab work showed some out of range iron numbers but the doc said he wasn't concerned about them. The EGD showed normal stomach tissue and duodenal tissue and the biopsies were normal. I have the genes for Celiac disease but not the biopsy results. There was sloughing esophagitis that he can't explain but he felt it was benign. So he feels it's just med related and that it's probably just IBS and gluten intolerance, with other food intolerances.
Sigh.


I'm sorry I've been absent for so long but my stress level has been through the roof. Now that we've got a place to stay and a house upcoming, we probably won't have regular internet, so I don't know how often I'll be able to be online until we get into our new house near the end of June, but I'll try to keep in touch. I do miss you all!

I can't remember what they said, i was a bit zoned out from it all because i was so faint. I'm not really worried about it, i haven't been able to hold much down recently so my body really hasn't got much food in it to run. They've given me some anti sickness pills hoping that they'll stop me feeling sick for long enough to start holding food down. Can't remember what they're called without looking at them and its dark, well considering its 2:10am lol, once again i cant sleep, shooting pains in my stomach

Nice to hear from you Cindy! Sorry things don't seem to be going your way at the moment it all seems to go wrong at the same time in my experience but you never know, good things may come from this even if it doesn't seem like it now. I wish you all the best with your move hun! Stay positive and when you can get online were here to vent off to. Lots of love hun, i hope you'll feel better soon!xx

Oh Cindy, I'm so sorry to hear all of that, especially the job stuff and having to move. I'm here for you if you need me, not just online but in person too if you need it - EC is about a 2 hour-ish (I think?) drive from Madison, so please let me know if you need anything and I'll do what I can to help! I'll road trip to give you a hug if you need one.

Well i'm going round and round in circles... back to the doctors this morning... more blood taken, got high temperature, fever symptoms, can't regulate my temperature properly, fast heart rate still... my body is just giving up on me right now, i'm so drained, i can't sleep properly... well on the plus side, hes phoning the gastenterologist again to say we are now in a desperate situation because everything has got so much worse and i'm losing alot of blood every time i go to the loo, so its getting very desperate. I really would do anything to get some relief now, i can't live like this anymore and i've had to just put my foot down and say help me now, because i dont want to lose the last few things in my life that i have, including my job.

Rose, I'm glad you're putting your foot down and demanding some help! That was what it took for me to get things turned around (I put my foot down with a very condescending, rude doctor and demanded to try prednisone - it worked and suddenly my regular doctors were on board with me that it must be something inflammatory and something more than "just IBS"). That sounds really scary with not being able to see or walk, but I'm glad that something finally convinced your doctors that immediate action needs to be taken rather than all this "hurry up and wait" stuff that they've been doing up until now. Any word on what happened when your doctor phoned the GI doc?

How's everybody else doing? I'm so-so. Doing a bit better tummy-wise and fatigue-wise now that I'm on a higher dose (6 mg) of Entocort, but it's been causing more headaches/migraines. Having some issues getting my GI to refill it at the higher dose too which is worrying - I'm not ready to go back to 3 mg yet, I'm definitely still having some symptoms. This work stress is getting to me, too, I can definitely tell that my guts are not happy thanks to the added stress. So I'm hanging in there but not great. I hope everyone else had a happy easter and that your tummies allowed you to eat some yummy chocolate without too much trouble.

Rose, I just can't believe things are still going downhill for you and the docs haven't done more for you yet! They've just to get something going for you. :ymad: Seriously. They really need to help you out, kiddo.

Cat, that is one thing that I thought of, with us moving back to Sconny, is that if we head down to Milwaukee to visit my aunt sometime that we should swing into Madison or meet you at Johnson Creek or something! Or if you end up heading the EC way, let me know. It would be cool to meet you in person. We could always use a :hug:. !

we are at least happy that we found a house we know we'll be happy in, even though we have to wait to get into it. I go into my employer tomorrow to discuss probably my resignation. Even though I have FMLA until the end of May I really don't want to make them follow that through without filling my position because the odds I'll be able to come back are quite infinitesimal.

I really wish I'd gotten some kind of results from the GI. they can't explain the food intolerances, or why I have pain in my right abdomen, or why I get full when I eat. The best thing I did down at Mayo was meet with a dietician. She says my diet is basically pretty good and we pinpointed that one thing I seem to have a problem with is fat. She told me to add a teaspoon of olive oil to some of the things I eat like rice, potatoes, and canned veggies to help meet my calories. so I've been maintaining my weight around 125 lbs.

I'm glad to be back, guys.