Undiagnosed Club Support Group

Crohn's Disease Forum

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Eternal Howl - I have an unofficial tentative 'IBD of unknown origin' diagnosis and am being treated as Crohns (based on symptoms and reaction to treatments with limited test evidence), and have recently changed from mesalazine to sulfasalasine as I was having huge joint issues, and the second is better for joints/bowels than mesalazine. It turned my urine yellow too, but that did settle down a bit, and is a harmless colour change. In terms of the nexium, it is pretty much the same drug as omeprazole (nexium/esomeprazole is a part of the omeprazole) so if you dont get on with it, it might be worth speaking to your dr about changing to a different PPI (such as omeprazole or lansoprazole - both of which are generic and prob cheaper for you too). Basically, just wanted to reassure you that they are not odd drugs to be on with your diagnosis - really hope you start to feel better soon!

Just a quick one to all you guys who are UK based - I have just joined http://www.crohnsandcolitis.org.uk/ as I have used their website loads for information, and thought it would be nice to have some national support. Not only do they have a wealth of info online (and will send you through the post) but there are local support groups as well as online and phone support available. I also have received a card that I can show if I am out and need to go. For those who are not UK based - its a great place to go and get some reliable info on everything - also, you dont need a diagnosis to join and get the support.

Hope you guys are all well, hugs to all. Personally, having a rough time with the fatigue still, and although other symptoms are not too bad (fingers x) its just getting tough not being able to work (or get paid) or have a life. Oh well, it could be much worse and I will remember that :)
 
Thanks for the link. While I'm waiting to see my GI and pill cam, I restarted Pentasa after a terrible sudden abdominal painful onset with nausea. Really didn't think it would do much but to my surprise I feel it working! Still have fatigue but no cramping nausea or pain! This is after a week at 4G. I will definitely go to that link!

Madmouse said:
Eternal Howl - I have an unofficial tentative 'IBD of unknown origin' diagnosis and am being treated as Crohns (based on symptoms and reaction to treatments with limited test evidence), and have recently changed from mesalazine to sulfasalasine as I was having huge joint issues, and the second is better for joints/bowels than mesalazine. It turned my urine yellow too, but that did settle down a bit, and is a harmless colour change. In terms of the nexium, it is pretty much the same drug as omeprazole (nexium/esomeprazole is a part of the omeprazole) so if you dont get on with it, it might be worth speaking to your dr about changing to a different PPI (such as omeprazole or lansoprazole - both of which are generic and prob cheaper for you too). Basically, just wanted to reassure you that they are not odd drugs to be on with your diagnosis - really hope you start to feel better soon!

Just a quick one to all you guys who are UK based - I have just joined http://www.crohnsandcolitis.org.uk/ as I have used their website loads for information, and thought it would be nice to have some national support. Not only do they have a wealth of info online (and will send you through the post) but there are local support groups as well as online and phone support available. I also have received a card that I can show if I am out and need to go. For those who are not UK based - its a great place to go and get some reliable info on everything - also, you dont need a diagnosis to join and get the support.

Hope you guys are all well, hugs to all. Personally, having a rough time with the fatigue still, and although other symptoms are not too bad (fingers x) its just getting tough not being able to work (or get paid) or have a life. Oh well, it could be much worse and I will remember that :)
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hello peeps, random question (but I am too hot so even trying to sleep isnt an option) but do any of you ever feel like there is something hard in your abdomen when lying on your front? It isnt there to feel when I'm on my back, but I can't lie on my front (as I used to) as it feels like I am lying on a tennis ball. Whilst I can't feel it at other times, and no-one has ever felt any lumps or bumps, it is in the same area I have pain - thickened bowel maybe?
Very random I know, but I thought I would ask :)
 
The pain level right now is ranging between 4-7. Had a light dinner, but had to have an egg sandwich to help with being able to take the prednisone. Pain around my kidneys and burning in my gut and bloating. I had bad bloat last night too. I haven't eaten that much tonight, but it feels like I've gorged. End Rant for now.


A few hours later and I took some turmeric with black pepper (Gaia herbs) and the burning hasn't totally disappeared, but diminished substantially. Prior to this, I had some ice cream and it abated a little but never died down as much. Thought this was worth sharing for those who get random episodes of burning. I had taken my Nexium, but it did NOTHING -as the burning was further south in my intestines.
 
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Owchhhhhhieeeeeeeee - lie down to sleep and feel like my stomach is being torn to bits -_- grrrrr bad day today and have to get up early for work tomorrow :( thats without even thinking about the pred side effects :'( not feeling happy!
 
Leanne1994 said:
Has anyone done alternative medicine?
I don't know if it is the right word, i used google translate..
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Not really, but I found this product is helpful http://www.gaiaherbs.com/products/detail/83/Turmeric-Supreme-Extra-Strength yesterday and this morning. It worked much better than the Nexium they gave me to reduce the burning in my gut. This worked right through my intestines as it was my intestines and kidneys that felt like they were slowly burning last night and this morning.

It is meant to be taken to help reduce inflammation and honestly, it's already done me a service. Plus, it's natural. The turmeric works best with the black pepper - it's needed for the absorption.
 
I am in so much pain :( no sleep because of it and i've got work today :( had to ring in sick 3 days last week and really don't want to have to today! My stomach feels like it's literally burning - i just want to cry! I don't even know what to do anymore. I'm probably going to lose my job if i don't go back full time from 4th Aug and i just don't know what to do anymore. If i leave my job i have no income so can't even afford perscriptions and life really isn't treating me well at all!

From December i'll be able to apply for sickness benefit as i'll be 18, but August- December if i lost my job, i couldn't afford to live. I am so tired. Rant over! How's everyone?
 
Well I went to the ER today - unexplained vomiting. Turns out they don't have any gastroenterologists, and don't do acute ultrasounds. They just send you to another bigger hospital. But I was not 'sick enough' for that, so they just gave me something to stop vomiting. They said sorry we don't know what is wrong with you - but they only took my temp and blood pressure...Not sure how they can figure what is wrong with no tests...Thank goodness I have a private appointment in a week - that I will have to travel for. Man this system is backwards sometimes!
 
gotumtum said:
Well I went to the ER today - unexplained vomiting. Turns out they don't have any gastroenterologists, and don't do acute ultrasounds. They just send you to another bigger hospital. But I was not 'sick enough' for that, so they just gave me something to stop vomiting. They said sorry we don't know what is wrong with you - but they only took my temp and blood pressure...Not sure how they can figure what is wrong with no tests...Thank goodness I have a private appointment in a week - that I will have to travel for. Man this system is backwards sometimes!
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Dad's being seen at same hospital for different reasons and he will have to go to same hospital you're talking about. Travel's probably a bit rough at the moment anyway. The hospital is good for the basics, but anything major, it's a transfer. I know that must be incredibly frustrating. They don't know what's wrong - you need that appointment in the big city. I'm surprised they can't do an ultrasound and just send the results off to the big city for interpretation though. Maybe discuss that with your GP at regular doctor's appointment. It might get the ball rolling - who knows? Here, in the smaller towns, they sometimes have the imaging equipment, but they get someone in my town to interpret the results and send the results back to the smaller town.
 
gotumtum, could it just have been food poisoning? How long was it going on for before you went to the ER? Do you feel better now?

I can't say that they were right in sending you away as I don't know all the details, and I'm certainly sorry you were left feeling like it was a crappy experience, but I just wanted to say that you'd be surprised at how much doctors can asses just from Review of Systems (Sx, current presentation), medical and family Hx, vitals, and all kinds of other cues even before they run any sort of test.

It's too bad they don't have a GI doc or the equipment they might need for certain GI cases. Unfortunately that's how it is sometimes - as big as hospitals are, I'm not even sure that you could find any one hospital that caters to all specialties - there are just too many specialties! :lol: I think it's strange that they don't have an ultrasound available, though. Please tell me they have an x-ray, right?! Lol. Well, if you're ever in that position again and you really think something is wrong - tell them you are currently being evaluated for IBD by your GI doc and that you were told to go to the ER if you have vomiting or other signs of an obstruction (assuming you do of course). Obstructions are taken seriously because they can lead to perforations which are potentially fatal if not treated promptly and appropriately, so I would imagine and hope that they would at least get you in for an x-ray in such a case.
 
Ballerina, no, they've never been able to explain why my potassium & sodium are always low. I actually did have my adrenals tested, too - Addison's disease (AKA adrenal insufficiency) can cause IBD-like symptoms and it also responds well to low doses of pred (7.5 mg is the ideal dose of pred for Addison's). I had a great response to 10 mg of pred, so they tested me for Addison's. I don't seem to have it, though, the test results came back normal.

It's funny (in a sad way) that you should say that I didn't let the death of my friend break me - because it did apparently break another friend of ours. After my one friend died at age 19 (smoke inhalation due to house fire, so very sudden and unexpected), our other friend did not deal well with it at all. He was obviously in massive denial. I lost touch with that friend over the years, but I guess he developed a nasty addiction to prescription pain pills (oxycontin). Then last year, I found out that he died too - the news said that he tried to rob a pharmacy, got into a car chase with the police, then when his car was disabled he fled on foot while shooting at police, barricaded himself inside an empty house, and when the SWAT team entered he shot himself in the head rather than surrender. Holy crap. So yeah, I pretty much went the opposite way as that, that is about as broken as a person can get. I used the grief to give me wisdom and strength, whereas my friend turned to drugs and felt the need to rob a pharmacy. So I lost one friend at 19, and another at 33 - both way too young and both preventable (my friend who died in the fire, I guess their apartment's smoke detector didn't work or didn't have batteries, if only they had tested it when they moved in!).

Ugh. Anyway. Yes, as you said, narrow stools often indicate either narrowing in the bowels (stricture or inflammation). Hopefully they find the source. I'm sure you already know this, but make sure they take lots of biopsies! And yeah, I know I don't talk much about my eating disorder - it was so long ago (I'll be 35 this year so it was 15+ years ago and it seems like I was a completely different person then). The sad part was, I was already so skinny back then! I was 122 lbs (at 5'8", so I was technically underweight already) and my family was going to go on vacation. My mom took me to the store to try on swimsuits, and afterwards, she said that seeing me in a swimsuit was "gross" and that I looked disgusting. (My mother obviously has issues of her own!) Those words kept echoing in my head, and I felt so fat and horrible, and I kept thinking that if my own mother said it to me then everyone else must be thinking it. Every time I ate, I felt like a failure and disgusting, so I started seriously curtailing my calorie intake. Most days I'd eat one meal a day at most. I was up and out the door for school before the rest of my family was even awake, so they never saw me not eating breakfast, and it was easy to not eat lunch at school. My family didn't eat dinner together either so it was easy enough to skip eating altogether on days that I didn't feel like it, and I was working in a restaurant at the time so sometimes I'd just have a salad there for dinner or whatever. I kept my weight between 105 and 108 - any skinnier than that and I started to look really frightening, and I didn't want to be so obvious that people would seek out help for me. I just kinda wanted to be skinny but still left alone, you know? At one point, I got stomach virus and dropped down to about 98 lbs - I didn't recognize myself in the mirror and I was so weak I couldn't stand up straight, so I recognized that that was too skinny even for me. But if I crept up to 108 then I'd be more strict with myself because I didn't want to be a fat fatty. When I started talking out my issues with my friend, he was like, "Look at me. I'm not the thinnest or best looking guy, but I feel like I'm doing okay. I have great friends and a good life. Weight and looks are not everything, being kind and smart are much more important." I absolutely adored my friend, and it is true that he was a bit overweight and not overly handsome, but he was an amazing person and so I really took his words to heart. If he could be such a great person in spite of not being the best looking, surely I could stop punishing myself so much for gaining a couple lbs. It took awhile to change the way I was thinking, but with his help and wisdom I got there.

Sorry for the ramble! I feel like I had to get that all out. Thanks for listening! :)
 
Cat,
You have such a wonderful way of talking about how you have overcome the difficulties in your life. I believe that others learn so much from the matter-of-fact way that you describe your problems, how you feel about them, and other people's reactions to them. And also they learn from your descriptions of how you learn from role models other than the people who are close to you, who may not be as supportive as you would like.

I think your own story-telling helps people to become a bit more objective about their own problems and to become more courageous in dealing with their own issues, despite what those around them may think. I think that you provide a terrific service to the Crohn's Forum members on this thread. Kudos to you. :worthy:
 
Thanks everyone for your support. Will write a longer post when I am feeling better- was up till 2am with my daughter who is teething - lack of sleep is not helping!
 
The results from my B12 test are 294 - so that's still in the normal range, but definitely at the lower end of normal. I don't consume a lot of meat products, but do consume eggs, milk, butter etc. I had to cancel my b12 shot I was going to get tomorrow because of work. Yay.

Gotumtum,
Sorry you're having a rough time with the teething child - that definitely doesn't help, but it's temporary - so that's something!
 
These sores in my mouth are driving me crazy. How do you guys think I should bring it up with my GI? Just call him and tell him I have a symptom I forgot to mention during my appt?
 
happy - completely agree with you!

happyballerina - definately worth bringing up with them if you can get hold of them and asking for advice - they might be able to suggest something (?mouthwash) to help - or ask your local pharmacist in the mean time.
 
Eternal_Howl - yep travelling is a pain - will be going to specialist this monday which is great, just trying to gather my wits enough to pack! - will travel on friday.

The small hosp does have the equipment and said they can do scheduled scans, but not emergency ones, but they did not see me till after 4pm and I think the ultrasound person had gone home - Or they were just trying to fob me off. I did get an ultrasound appointment for a couple of weeks time though, so just have to hold on till then, but not getting my hopes up. The last one about a year ago did not show anything. Will see ehat the specialist says.

Happyballerina - Thanks for your support - They did not really take a history, which was part of what annoyed me. I had stopped vomiting by the time I got there, so I was probably not particularly interesting to them. Unfortunately I had to make a call about going to the ER and decided to go in case I was going to get worse, which would have made travelling impossible. - It takes a while to travel to the hosp from where I am. In hindsight I would not have gone, but it could have easily gone the other way.

oooh I liked Madmouses comment from the above thread 'dead people often look well, and they are not' - Last visit to the ER The Dr said, well, we know that its not life threatening as you are not dead yet (after 14 months of being undignosed) I kind of understand what he is getting at, but still just as well he is not a rocket scientist. Though you know that you are in trouble when they ask you what you think it is. Either they really don't know, or they think its in your head. Though to be honest, if I can really have D and V that severe caused by my own brain power, I would be walking on water by now, and definitely not have needed an induction for my little one!

Sorry rant over - limited sleep again last night. While dealing with teething little one at 2.30 am I was trying to figure out what had caused previous D - Too much fruit/Chocolate/ Magnesium tablet/Migraines/Lack of sleep/The weather/???

I am really low on magnesium too. Migraines daily Periphal neuropathy is getting worse. Brain is very slow (though that could be the lack of sleep) and clumsy., I think that the losec and doxycycline are preventing me absorb/making me lose it:(

Hope others are having a better day or at least more sleep!
 
I want to apply for my medical data, so I can check all the results myself. Like last time i was at the GP and I found out that my CRP was higher. But that were results from like 6 months ago and the other GP never told me.

Also what I hate about doctors is that they look to the normal things. Like you have to have fever otherwise you're not ill, not everyone gets fever. Or your blood results need to be this high then there is something wrong. But for some people a bit higher is also that they are very ill, but because that is not what they think it should be, there is nothing wrong. NOT EVERYONE IS THE SAME!!!
 
Leanne1994 said:
I want to apply for my medical data, so I can check all the results myself. Like last time i was at the GP and I found out that my CRP was higher. But that were results from like 6 months ago and the other GP never told me.

Also what I hate about doctors is that they look to the normal things. Like you have to have fever otherwise you're not ill, not everyone gets fever. Or your blood results need to be this high then there is something wrong. But for some people a bit higher is also that they are very ill, but because that is not what they think it should be, there is nothing wrong. NOT EVERYONE IS THE SAME!!!
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I agree with what you say about the results being different and varying for people. We're not all the same. A great example was last week, I had two scopes done (both ends) and when they hooked me up to the machine to monitor BP and heartrate, it was beeping all over the place. I was just laughing. They asked if it was normally that low. I said it's usually a bit lower than average (BP and heart rate), but is also affected by lack of food and a bowel cleanse. So it's fine. My heart rate was sometimes down to 39BPM and that was before any anesthetic etc. So yes, everyone is different.

I've applied for my medical records in NZ before and as a patient, you are entitled to a copy. I would assume this is true anywhere in the world. User-pays systems and socialized medicine.
 
I got a phone call today saying that my biopsies from my EGD and my colonoscopy were normal. I'm assuming we can rule out Celiac Disease then, since they were also testing for that. They haven't been able to test the area of concern for Crohn's, because it's in a difficult spot. So, now I'm wondering: what's the next course of action. Do I keep the appointment with the specialist? I'm not sure he's going to listen to me and take my suggestions. I could be totally wrong, but I just have that feeling. I spend more time with P.As and nurses than I've had with him. They just fill him in on the info. Is there GI specialist with a specialty for Crohn's in the wider Kansas City area - I'm about an hour 15 west of it.
 
yeahhh and my heartbeat is really fast, 130 a minute.. And my blood is high aswell. And I am still alive. And I never get fever, but no if there is something wrong in your body, you should get fever. Who the f do you think I'm kidding. It is not that I want to be ill. I just want a diagnose, so I can get helped.

Starting school in a few weeks, I am a bit scared how that will go.

I still want a ct-scan or mri or both. And an upper coloscopy, but I am not getting it, because Holland is stupid!!!! We pay so much, but the healthcare is terrible, eventhough they say is so good in Holland, dream on!

Mm sorry that you still haven't found what is wrong. @ eternal_howl

And before about narrow stools, I have that quite often that they are allmost as thin as spaghetti okay a 2 spaghettis next to eachother. But then a few days later it is bigger again.. My stools change everyday, it is so weird..
 
Fever is a symptom of the body's defense system working and sometimes working harder than normal. Lack of fever certainly doesn't mean you're not suffering. I don't have much in the way of fever, but occasionally, I've been getting what feel like hot flashes (but I'm not menopausal) and it's related to bowel. It's weird.

My system changes its stools too. It's not all one or the other or something else.

I may never truly know what's wrong, but I do know they need to get some kind of effective imaging to find out what's going on. I'm assuming biopsies normal mean no colon, or esophageal cancers (but I knew that - don't ask me how). I think these diseases/ disorders are sometimes like playing a game of Whack-A-Mole. You might try and get a lead on it and then the symptoms vanish, or they disappear entirely for a while and then come back with a vengeance. Or they never go away, but it has to get really bad and noticeable damage (like my thickening intestine) before they have evidence there's something going on and then have to spin the wheel to find out which technique they'll try next.
 
I also have hot flashes.

I don't think I will ever know what is wrong with me aswell haha :p

Btw where did you get you medical data, from your gp or the hospital?
 
Hi, What a great forum, I really was beginning to believe the GI doc that it was all in my head.
3yrs ago I started having D with right sided abdo pain, I had to change what/if I ate to go out anywhere. This progressed to severe upper gastric pain plus the R-sided pain and D 20X plus a day sometimes with blood. This all deteriorated to vomiting and nausea 24/7, it was horrid. By April 2014 I had lost 60% of my body mass and was so ill I needed help to the loo. I was in and out of hospital every month and was given the DX of Gastroparesis, I have a J-Tube for feeding 24/7 and all my meds go through this. BUT..... I am still battling diarrhea, joint pain, sore eyes and severe abdo pain. I have Crohn's in my family but not immediate and Doc says cause ALL my tests came back normal except for REALLY high inflammatory markers that it was unlikely I have Crohn's. My research has told me that Gastroparesis can be a secondary condition to other IBD's, I'm really tired of being ill and living my life in the toilet. I'm thinking of asking for a trial of prednisalone to see if I can get any benefit.
That's my story,pretty much the same as others.
Happy Tummy days
cheers
 
Leanne1994 said:
I also have hot flashes.

I don't think I will ever know what is wrong with me aswell haha :p

Btw where did you get you medical data, from your gp or the hospital?
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Years ago I got some of my medical records from my doctor. I didn't get them from the hospital, but I could have obtained a copy - maybe I did. I can't recall. I just know I did have some medical records. I think in the end I shredded them because I was relocating overseas and it was all about minimizing and I could get what I needed faxed or emailed.
 
Ohh okay, because I have been to 2 different hospitals. And I saw on the hospital website that you have to pay for it. How stupid it is about me my medical records. They want money for everything..
 
shooni69 said:
Hi, What a great forum, I really was beginning to believe the GI doc that it was all in my head.
3yrs ago I started having D with right sided abdo pain, I had to change what/if I ate to go out anywhere. This progressed to severe upper gastric pain plus the R-sided pain and D 20X plus a day sometimes with blood. This all deteriorated to vomiting and nausea 24/7, it was horrid. By April 2014 I had lost 60% of my body mass and was so ill I needed help to the loo. I was in and out of hospital every month and was given the DX of Gastroparesis, I have a J-Tube for feeding 24/7 and all my meds go through this. BUT..... I am still battling diarrhea, joint pain, sore eyes and severe abdo pain. I have Crohn's in my family but not immediate and Doc says cause ALL my tests came back normal except for REALLY high inflammatory markers that it was unlikely I have Crohn's. My research has told me that Gastroparesis can be a secondary condition to other IBD's, I'm really tired of being ill and living my life in the toilet. I'm thinking of asking for a trial of prednisalone to see if I can get any benefit.
That's my story,pretty much the same as others.
Happy Tummy days
cheers
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Welcome! I've been on the forum a couple of months and everyone here is great. It's nice to know that whether you have your diagnosis or not, that there are others that know what you're going through. You seem like you've had a pretty rough time with some rather extreme symptoms. There are others here that have been through the gauntlet and continue to do so also. My symptoms aren't as extreme as yours, nor nearly as debilitating. I'm still waiting for a dx, but my intestine is shrinking in its ability to pass food, so that's where I occasionally get horrendous bouts of pain.

If you ever want to complain to people that understand, question, talk or whatever - that's what we're here for. My experience has been that this forum and the people on it are a treasure because someone else may not realize exactly how awful any one of said GI conditions can be - yet people here understand and while they can't diagnose, or treat, they're full of wonderful advice, support and answers for the things they DO know.
 
Leanne1994 said:
Ohh okay, because I have been to 2 different hospitals. And I saw on the hospital website that you have to pay for it. How stupid it is about me my medical records. They want money for everything..
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How much are they asking? If it's to cover the printing costs, that's probably reasonable, but if they're throwing in administrative costs as well - the paperwork was already done and they may as well just hand you YOUR medical file and let you copy it yourself.
 
eternal_howl said:
welcome! I've been on the forum a couple of months and everyone here is great. It's nice to know that whether you have your diagnosis or not, that there are others that know what you're going through. You seem like you've had a pretty rough time with some rather extreme symptoms. There are others here that have been through the gauntlet and continue to do so also. My symptoms aren't as extreme as yours, nor nearly as debilitating. I'm still waiting for a dx, but my intestine is shrinking in its ability to pass food, so that's where i occasionally get horrendous bouts of pain.

If you ever want to complain to people that understand, question, talk or whatever - that's what we're here for. My experience has been that this forum and the people on it are a treasure because someone else may not realize exactly how awful any one of said gi conditions can be - yet people here understand and while they can't diagnose, or treat, they're full of wonderful advice, support and answers for the things they do know.
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well said!
 
First appt. with a GI on Tuesday, a little nervous I have to admit, more so about what comes next (the scopes) and being plied with medication. :(

Trying to look forward to my holiday (vacation, for the US members lol) but all I can think about is having the enjoyment ripped out of it by being told I have IBD. I just have to think positively and remember that a diagnosis can only be a good thing!

^ I second the 'well said!' from madmouse. I'm the biggest complainer here sometimes and I always without fail feel SO much better knowing I'm not the only one going through this.
 
LewisS said:
First appt. with a GI on Tuesday, a little nervous I have to admit, more so about what comes next (the scopes) and being plied with medication. :(

Trying to look forward to my holiday (vacation, for the US members lol) but all I can think about is having the enjoyment ripped out of it by being told I have IBD. I just have to think positively and remember that a diagnosis can only be a good thing!

^ I second the 'well said!' from madmouse. I'm the biggest complainer here sometimes and I always without fail feel SO much better knowing I'm not the only one going through this.
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Lewis - I know a diagnosis would be difficult, and that no-one wants medication - but both would lead to answers, and getting yourself into remission and getting your life back - whilst nothing is a guarantee, but it would give you some more reassurance that it is under control (if that makes sense). So, hope your appt goes well, dont be afraid to ask questions, there is no such thing as a stupid one, and let us know how you get on. Oh and enjoy your holiday! x
 
I know it's daunting Lewis but you are so much better to make progress now with a dx than be 2 1/2 years down the line like i am. I've been sat on my sofa in tears all evening because the pain is SO intense!

I'm so glad i started seeing this new gp! I phoned last wednesday, he put me straight back on pred and phoned the GI office instantly! I now have an appointment Monday! Somehow one decent GP can pull me up at 6 month waiting list to only have to wait a week and a half! I am SO relieved because i feel like i'm on the verge of having to go to a&e because i'm feeling so bad! I hate hospitals and being kept in is my worst nightmare - i couldn't do it! I'm so paranoid over it! So i'm glad that i can do through out paitient appts! Fingers crossed they'll help me monday!
 
Rosanna I had quite bad anxiety over the thought of being in a strange situation, having to eat different food, not having access to normal toilet and so on.

But I went through all that and survived, I coped and was more than fine, when I had to go into Hospital unexpectedly for three nights. Never been in before and I am 27.

At the end of the day it was an emergency situation and I barely had time to be scared or worry about what was going to happen, or worry over what might happen, I just knew I had to go to the Hospital for a transfusion, of course I was looking up the last train home lol didn't realise i'd be in for three nights!

While i'd not say my anxiety is zero now it sure is alot less :) And it has given me the confidence to be a bit braver (at times) in my everyday life.

Lewis, I really hope you can enjoy your holiday. Getting a diagnosis would be horrible, and I know you're not keen on the idea of meds, but anything is better than at the moment right?

As for me I finally got my follow up appointment to see where things are since my Hospital stay, and if further tests are needed to find the cause of the anaemia. It's in two weeks so not long to wait. Although, it'll be 10 weeks after discharge instead of the 4 it was supposed to be!

And it is with a Gastro Dr as I had figured out. Not done any bloods since 3rd July though not sure how useful the "4 week" assessment will be without any recent results.
 
Eternal_Howl said:
Welcome! I've been on the forum a couple of months and everyone here is great. It's nice to know that whether you have your diagnosis or not, that there are others that know what you're going through. You seem like you've had a pretty rough time with some rather extreme symptoms. There are others here that have been through the gauntlet and continue to do so also. My symptoms aren't as extreme as yours, nor nearly as debilitating. I'm still waiting for a dx, but my intestine is shrinking in its ability to pass food, so that's where I occasionally get horrendous bouts of pain.

If you ever want to complain to people that understand, question, talk or whatever - that's what we're here for. My experience has been that this forum and the people on it are a treasure because someone else may not realize exactly how awful any one of said GI conditions can be - yet people here understand and while they can't diagnose, or treat, they're full of wonderful advice, support and answers for the things they DO know.
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Thanks Eternal _Howl, sorry it took so long but haven't been feeling real great. I hope you are feeling ok, and has anyone done a Gastric Emptying Study on you?
Dietician changed my feed and as I was already having lots of symptoms they just went bezerk!!!:ymad: I have had really bloody BM's for a couple of days since the change and the fatigue is like 'Wipe out Zone'.
This is embarrassing but does anyone have any tips for a sore butt from too much toilet time?:blush::blush: I've just been using baby nappi rash creams :lol: but they just not working this time.
Counting down the days to my next GI app.

Cheers shooni
 
RosannaKate said:
I'm so glad i started seeing this new gp! I phoned last wednesday, he put me straight back on pred and phoned the GI office instantly! I now have an appointment Monday! Somehow one decent GP can pull me up at 6 month waiting list to only have to wait a week and a half! I am SO relieved because i feel like i'm on the verge of having to go to a&e because i'm feeling so bad! I hate hospitals and being kept in is my worst nightmare - i couldn't do it! I'm so paranoid over it! So i'm glad that i can do through out paitient appts! Fingers crossed they'll help me monday!
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It sounds like you've found a good doctor. I found back in the socialized medical system of NZ, when I had neurological issues (seizure related), my doctor would somehow part the sea for me and get the appointment with the specialist quicker than normal. If it wasn't urgent, the waiting list was up to 2 years. Wishing you the best for your upcoming appointment.
 
LewisS said:
First appt. with a GI on Tuesday, a little nervous I have to admit, more so about what comes next (the scopes) and being plied with medication. :(

Trying to look forward to my holiday (vacation, for the US members lol) but all I can think about is having the enjoyment ripped out of it by being told I have IBD. I just have to think positively and remember that a diagnosis can only be a good thing!

^ I second the 'well said!' from madmouse. I'm the biggest complainer here sometimes and I always without fail feel SO much better knowing I'm not the only one going through this.
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I hate meds too. I've actually been really slack with the drugs the GI doctor gave me. I'm one of those "if it's not 100% effective, right now, it's not for me". The reality is, I'm dependent on some meds to retain my quality of life and independence and ability to drive, so when considering medication, consider where you're at now (or were a week ago) and if you try something, it might help. It might not, but you won't know, unless you try. Weigh the pros and cons of quality of life versus drugs and possible side-effects. If the treatment you are offered gives you a major improvement on how you've been doing, then you can either try and seek out a natural alternative to it, or stay on it - or do nothing. It's your life. The point is, quality of life is key and how you obtain that is up to you. It's just nice if you have all the tools at your disposal to claw that quality back. I don't think anyone would look at you side-ways if you opted not to take meds prescribed (not talking about the doctors, they would :lol:). It's an individual choice. It's your body. Knowing what you're up against and how to 'tackle' it is honestly to me half the battle with this wretched thing.

I'm half expecting the GI is going to tell me I have IBD, after already telling me he suspects Crohn's. If he gives me an IBD diagnosis, I'll be asking for further imaging to confirm.

Shooni: I've had the small bowel follow through (barium x-rays) and they're talking about wanting to do it again in a few weeks. I really don't see the point. The CT I had back in May has already confirmed thickening and I can't 'digest' the pill cam as the dummy cam got stuck. It's nice to think I don't have celiac disease, cancer or other issues they biopsied me for. I knew I didn't have Ulcerative Colitis - the symptoms simply were not there.

You're dealing with the ring of fire? I had that last week after my bowel prep. No red stuff though - just sore from wiping. I almost reached for some Kleenex - they're soft on the nose after blowing for a bit. I wonder if Aloe Vera gel might be a soother? Sure, it would be a bit sticky, but it might help.
 
Ring of fire :rof: think we've all been there! My only remedy to that is try to use some sensitive (flushable) wipes rather than loo roll. Sudocrem is good (albeit it messy) - if you don't have it where you are, it's a zinc based cream that heals things up in no time and is extremely soothing.
 
Oh, the ring of fire! Also known as ring sting! Yes, flushable wipes are lovely. We actually installed a small bidet onto our toilet - it takes water from the toilet tank, so it's not heated or anything, but it's not cold either (room temperature) and it sprays up and cleans that whole area with water. That's been just wonderful, even my hubby loves it (he calls it "the butt washer", ha ha). And yes, creams can work wonders too. When things are bad, I usually alternate between Calmoseptine and Tucks. Calmo is mentholated so it feels "minty" and soothing, and Tucks is a hemmie cream so it shrinks any swelling that happens back there (it works even if there aren't hemmies, just swelling). Those are my go-to things. And, if I know I'm going to be doing something like walking around a lot and there might be chafing, I'll put some cream on beforehand to try to ward off any uncomfortableness back there - that helps a lot, too.

How's everybody doing today? I'm wiped out, it's been a long hard week and I'm so glad it's Friday. Hubby wants to go to a movie tonight (Guardians of the Galaxy) but I'm afraid I might fall asleep in the theater! :p My guts have been up and down lately so I don't know what's going on with this flare - it's still just over 3 weeks till I see my GI so I guess I just have to ride the rollercoaster a little while longer! I hope everyone has a peaceful, relaxing weekend.
 
The bidet sounds wonderful. Didn't know you could get one that went on top of the existing toilet. I'm guessing I can't get it for an apartment that I'm renting.

The fatigue is a romance killer, I know. Hubby's watching me wiped out and wanting to do something and I'm just always tired. Hubby's hoping for family time with him and the midget and I'm so boring and just want to vege when I get home from work, but I'm usually on the go all day, so fatigue is understandable anyway.
 
Flaring and I am miserable :(

Wednesday my guts decided (as they sometimes do) that they didn't want anything inside, unfortunately after lunch!

Been really up and down since then and still not able to resume normal eating. Eating is one of the few pleasures in my life so you can guess how happy I am.

I am also deathly tired, more tired than I should be- i'd class this a medium severity flare, and even in a high severity flare i've not been this tired. I've been maintaining my iron tablet dose apart from Wednesday which was 1/3 and today I will only manage 2/3.

I was wondering if the aneamia has been caused by a GI bleed after all, and this is exacerbating it. Certainly my BM's are still quite painful, leaving me with pain afterwards and tenderness. I really can feel that my intestines are inflamed in places.

I will be sure to mention it to the GI I see in a few weeks. I made an official complaint after the appointment debacle yesterday and mentioned I was concerned my blood tests will be 6 weeks old instead of under a week as was intended. Fingers crossed they'll ask me to do another set before the 15th. If not this is something I will also bring up with the GI.

In the meantime I am going to blitz this flare with high doses of codiene. Got me out of a bad one before (although I was also taking Naproxen then). Usually I take 1 30mg as needed for pain but for a bowel flare I was advised to take 2 several times a day. To help with the pain and attempt to slow down my bowels. The combo of painkillers at the time made me vomit 12 hours later and I had to discontinue the treatment but it did stop a really bad flare in that short time so here is hoping! Actually maybe being on iron and codiene will actually slow things down. That is rare for me. :ybatty:

Maybe I should give it more time naturally but i'm miserable and so tired I think it's gone on long enough.
 
LewisS said:
First appt. with a GI on Tuesday, a little nervous I have to admit, more so about what comes next (the scopes) and being plied with medication. :(

Trying to look forward to my holiday (vacation, for the US members lol) but all I can think about is having the enjoyment ripped out of it by being told I have IBD. I just have to think positively and remember that a diagnosis can only be a good thing!

^ I second the 'well said!' from madmouse. I'm the biggest complainer here sometimes and I always without fail feel SO much better knowing I'm not the only one going through this.
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i'm in the same boat as u bro!! My first appointment with the GI is bang in the middle of my holiday.... I'm head leader of a sleep-away camp for kids -many of them disadvantaged, and i'm going to have to leave them in the middle for a day or 2 to come back for my appointment!! It will be really annoying and energy consuming but i have no other option coz i really can't afford to miss this appointment that i've been waiting sooooo long for!! And besides it'll be hard enough with all my pain and fatigue in the first place!
Oh! And i also wanted to thank evry1 for the great forum!! Its a new world having other ppl who actually understand me to talk to abt it!
 
Hi all i'm glad i found this support forum as i have been very depressed lately. for years now i have suffered with upset stomach and terrible cramping pains in my side however they come and go so i have never really been too effected by them untill 5 weeks ago were i had to go to a&e because the pain i was in was unbearable and i was being sick, quickly i was diagnosed with appendicitus and had an apendisectomy only to realise a few days later my pain was still there by this stage i was on morphine which stopped me from going to the toilet for 7 days, i wasnt eating as i had no appetite, i was being sick everytime i tried to eat and then my tummy bloated out like i was about to give birth, i was discharged from hospital with a note saying "arrange colonoscopy suspected ibd" no explanation what this was or why they thought this, anyway couldnt aford to be off work anymore so i decided to go back with some painkillers and see how i got on, wish it hadnt as i had to come home after 2 days as i was in severe pain again and had lost all colour in my face, back to a&e suprise suprise all blood tests were normal and i just got sent home with more codeine which i knew wouldnt help my digestive tract at all!! over the last few weeks my health has gone down drastically i have lost 1 stone in weight, my mouth is covered in ulcers, still no appetite, cant eat solid food, and i am incredibly tired to the point i will get out of bed for 10 minutes and then can hardly keep my eyes open, the pain i am in is becomming unbearable and is taking its toll on the rest of my body. i had a coloscopy yesterday and it all looked fine, they have taken some biopsees but i was discharged unless the results from the byopsies come come back abnormal with having ibs, i have been reading these threads and i too am very frustrated as i know my body and i know how awful i feel, ibs i understand can be severe and very painful but surely it doeasnt make you loose weight or have mouth ulcers?? i almost feel like they cant be bothered to do any more tests so they palm you off with a silly diagnostic to keep you happy, i have been perscribed buscopan which has no effect what so ever and anti sickness medication which helps with the sickness but makes me feel even worse as it causes my tummy to constantly rumble, i know cant even wipe myself properly as that area is so raw and from what i was 6 weeks ago, a healthy restaurant mangager who used to run around with a smile on her face with the occasional run to the toilet and cramping pains i have become an extremely gaunt looking, sick, tired and depressed young lady who feels like shes aged 50 years! i will keep reading these threads so i know im not the only one out there its hard for other people to understand how you feel especially when tests come back negative , ive started to question myself as to wether or not this is all a mental thing but i can feel my bodies not right and that there is something wrong with me.. good luck everyone else i wouldnt wish this feeling upon anyone, i just want answers and the right medication so i can stop feeling so horrible :(
 
Oh sally!! I'm feeling u! Its absolutlew crazy the way things work. For a start my gp explained me that the emergency room are focused on sending who they can home rather than admitting them to hospital. Last week i was brought in to a and e and when they wanted to send me home i just acted worse and added on a few "fake" symptoms just so that they would check me out... It almost worked but with the messed up system here in uk they told me i need to be checked asap but don't have to stay in hospital... So i was sent home in pain and agony and now i'm really scared it won't show on any scopes! Ur symptoms really do sound serious and yes i also have been conscious that mayb its in the head but as soon as i found this forum i realized ibd won't necessarily show in any tests or scopes for a long time so the point is even if the biopsies show nothing make sure to drive the GI mad, untill he looks deeper and deeper! (mind the pun!) wishing u the best of luck! And feel better!
 
Hi solidsam, i have learnt that the best way is to keep pesturing! something i didnt mention in my previous post was that the colonoscopy i had a few days ago infact was cancled and the nearest one they could offer me was months away, i was so annoyed as i really thought (before i had it) the colonoscopy would be the closure of all my pain and that the doctors after it would finally take me seriously! I rang every 2 days to see if there was any cancelations and the secretaries i could tell were starting to get very annoyed with me almost to the point i knew they were recognising my number and purposly not answering the phonecalls so therefore i started ringing every 15 minutes and within 2 hours finally they answered with "yes sally we have a cancelation have you eaten today, i replied with no as i havent eaten a thing 4 days, and the lady said can you come and your prep before 5 oclock we will see you at half 8 tommorow morning!" Now i have learnt that although you may feel like your dying inside the doctors and hospitals proberly have hundreds of people feeling exactly the same, dont give up and keep pesturing them thats the only way to fasten things up sometimes.
 
Solidsam said:
Oh sally!! I'm feeling u! Its absolutlew crazy the way things work. For a start my gp explained me that the emergency room are focused on sending who they can home rather than admitting them to hospital. Last week i was brought in to a and e and when they wanted to send me home i just acted worse and added on a few "fake" symptoms just so that they would check me out... It almost worked but with the messed up system here in uk they told me i need to be checked asap but don't have to stay in hospital... So i was sent home in pain and agony and now i'm really scared it won't show on any scopes!
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Hey Solidsam,
I can see why you might want to do that, but you really, really shouldn't just act worse and you especially shouldn't add fake symptoms. It is true that one of the focuses in the ER - besides saving lives, of course - is to admit only those who need to be admitted and to send home all those who don't need to be admitted. The reasons for that are many, legitimate, and life-saving. You don't do yourself any good by faking or being overly dramatic and, worse so, it harms the other patients, too. There are limited beds, doctors, and other resources in a hospital. Being admitted unnecessarily and doing unnecessary procedures is time consuming, possibly painful, and expensive. Doctors are good at seeing what's critical and what isn't, even when we/the patients/normal people don't see that (that's the difference 8+ years of study makes). They don't want to send someone home who comes in with any indication that they must be admitted; they don't want to make any mistakes - not just for the sake of their patients, but for the sake of their career, as well.

As far as why it's bad for you personally, the biggest danger in lying is putting your own health at risk; besides that, you could be misdiagnosed, you could give the impression of drug-seeking behavior (which will follow you around), you could make them suspicious of Munchausen's...it could result in any number of unwanted consequences.

Also - doctors tend to be quite skilled at discerning lies from the truth.
You should do what they told you to do - get checked asap.
You shouldn't be scared about the scopes. If it doesn't show up on any scope and all your tests are inconclusive then you know you've ruled out at least one thing. It's part of the diagnostic process and it's ever bit as valuable to gather evidence of what you don't have as it is to gather evidence of what you do have. I think I can speak for all of us here when I say that I know it can be extremely frustrating; personally, it's been three years since my first obvious symptoms and I'm still not diagnosed. Some here have gone longer. Push for the care that you need if you aren't getting it, ask questions, get opinions, have tests run if they need to be run - but you mustn't fake your way through all of that. Don't forget that the goal is to feel better and be healthy...not to try to get diagnosed with a disease you may or may not have.

Stay strong! It can be difficult when you don't have answers, but you can't let it get to you :hug:
 
Hi thanx for takin the time to reply... I will correct myself the symptoms i told them i have were not fake it was all stuff i had been having just not necessary at that specific time. My gp was actually the one who suggested i do it as he was frustrated that the system wouldn't allow me to see a GI earlier than my scheduled appointment and he wanted me to see one whilst in hospital. The first doctor to see me in hospital agreed that i should be seen for my symptoms right away, which is why he admitted me to a ward in the first place. It was the second consultant who decided i should wait for my scheduled appointment which atm i'm in extreme pain to the point i couldn't sleep at all. It is only getting worse but i have come to terms with the fact that i'm just gonna have to wait. You are extremely right that to make up real "fake" symptoms is extremely wrong and could come at the expense of more serious patients in need. In my case my doctor really felt it necessary for me to go to hospital so that was y i did so. I'm sorry i came across wrongly and i did not mean that i made them up totaly. Good luck getting diagnosed!
 
Solidsam i think your GP was mistaken telling you to go to a&e and make up that you were worse. What your GP really needs to do is phone the consultants secretary and push that this is urgent and ask that you be put on to an earlier clinic. Thats what mine did, i went fro having no scheduled appointment to being put on a clinic 1 1/2 weeks later! Which happens to be today (yay)!

Guys anyone got any advice for me on what to say, i know i want to go in and say the basics and that the steriod trial helped but i'm writing my list and i dont want to miss anything :) i think if he says no to keeping me on steriods for a while i'm going to request further tests to review the situation in my large bowel. They have only ever seen up the one side as i didnt go well with colonoscopy 2 years ago! I really am going to push hard now because i can't go any longer physically or mentally!
 
Good news is the codiene worked pretty quickly to stop my flare up- still don't understand how it works but i'm grateful that I did.

Bad news is I have been catapulted into a nightmare. Mum injured her knee yesterday. X-rays confirmed is is moderately severe soft tissue damage but they found an abnormality they think is unrelated to her injury. So back to A&E tomorrow to see what's what.

My own health is in no way up to the strain of caring for her again (2 months over Xmas with a broken wrist, I was on the good painkillers then and the strain still broke my health pretty much) yet there is a distinct possibility i'll have to do so regardless.

It's not great for Mum either and I am not immune to that but the thought of going through again what I went through with her wrist is freaking me out quite frankly.

I've already put off going to my GP this week for blood tests because I suspect my anaemia has got worse but no time to go now and certainly no time potentially to go into Hospital for a transfusion! So I will have to tough it out until the 15th when I see the specialist. And pray the news is not too bad tomorrow. Just can't see how I would cope without breaking my health even worse than before because I am no longer on the good painkillers and suspect the anaemia is sliding downhill at this point already.
 
Star Girl - Best of luck with your troubles - is there any home help available for people who are older and can't acre for themselves / have accidents - Your Mums GP might be able to help with extra care if you explain the situation?
 
Hi everyone. Had a good appointment with the gastro dr today - 8/10 (would have been 10 but did say IBS was a possibility, and did not perform any miracles!)

He is sending me for a pill cam (subject to insurance approval). I will phone up tomorrow for approval and appointment date. He said they will want me to do a prep too which is annoying:(
He said the most likely probabilities are Crohns or IBS. Though even the info sheet he gave me on IBS mentions that waking at night with d is not usually IBS.
Other rare possibilities he wants to rule out are Carcinoid Syndrome, Pheochromocytoma, and is also testing my VIP and Gastrin levels which seem to be associates with rare hormonal tumor thingies - Have not told my family he is testing for these as I don't want to freak them out for a tiny probability.

He is also testing for EBV and CMV as my liver and spleen are bigger than normal. He also said I have fatty liver (which I knew). Said if all this comes back clear then will test for intestinal flora overgrowth?

He said the results from the colonoscopy and endoscopy rule out UC and Celiac. And that I am not lactose intolerant anymore! (weird)

So, really want to get the pill cam over (well, really the prep, which I hate:( )
He gave me info sheets on Crohns/IBD, IBS, Fatty liver and Pill cam and said to look up the other things if I wanted.

Have a 24 Hr urine collection, and blood tests to be done at the hospital.

So, went well. He said that things weren't right and that he would do what he could. Was surprised when I told him about the 20+ D a day. But we will see.
Am terrified of the possibility of the dreaded IBS 'diagnosis' but as he said, (in different words) I have pretty much always had a dodgy tummy and some people would call that IBS. Though it certainly has progressed, whatever it is, and needs to be addressed.

was kind of wishing it was gallbladder - an 'easy fix' and none of the options left seem 'easy'. Though if it came down to it, I would give at least one of my limbs to feel better again. So who knows...

He was kind of holding back a bit - I suppose as we had not really met before. I get the impression that he was trying not to make any judgements till we get the results back - which I suppose is Good.

I am glad that he did not just fob me off, and that he suggested the pill cam straight off. I understand that his mates who do the pill cam will profit from this decision, but I also understand that many people do not get this oppertunity. For that I am greatful ( crossed fingers I get insurance approval)

We shall see.
 
Best of luck! I too am waiting on a pill cam. I had my gallbladder out during treatment for suspected Crohn's and it did not change a thing :( ( I did feel markedly better though with it out).


gotumtum said:
Hi everyone. Had a good appointment with the gastro dr today - 8/10 (would have been 10 but did say IBS was a possibility, and did not perform any miracles!)

He is sending me for a pill cam (subject to insurance approval). I will phone up tomorrow for approval and appointment date. He said they will want me to do a prep too which is annoying:(
He said the most likely probabilities are Crohns or IBS. Though even the info sheet he gave me on IBS mentions that waking at night with d is not usually IBS.
Other rare possibilities he wants to rule out are Carcinoid Syndrome, Pheochromocytoma, and is also testing my VIP and Gastrin levels which seem to be associates with rare hormonal tumor thingies - Have not told my family he is testing for these as I don't want to freak them out for a tiny probability.

He is also testing for EBV and CMV as my liver and spleen are bigger than normal. He also said I have fatty liver (which I knew). Said if all this comes back clear then will test for intestinal flora overgrowth?

He said the results from the colonoscopy and endoscopy rule out UC and Celiac. And that I am not lactose intolerant anymore! (weird)

So, really want to get the pill cam over (well, really the prep, which I hate:( )
He gave me info sheets on Crohns/IBD, IBS, Fatty liver and Pill cam and said to look up the other things if I wanted.

Have a 24 Hr urine collection, and blood tests to be done at the hospital.

So, went well. He said that things weren't right and that he would do what he could. Was surprised when I told him about the 20+ D a day. But we will see.
Am terrified of the possibility of the dreaded IBS 'diagnosis' but as he said, (in different words) I have pretty much always had a dodgy tummy and some people would call that IBS. Though it certainly has progressed, whatever it is, and needs to be addressed.

was kind of wishing it was gallbladder - an 'easy fix' and none of the options left seem 'easy'. Though if it came down to it, I would give at least one of my limbs to feel better again. So who knows...

He was kind of holding back a bit - I suppose as we had not really met before. I get the impression that he was trying not to make any judgements till we get the results back - which I suppose is Good.

I am glad that he did not just fob me off, and that he suggested the pill cam straight off. I understand that his mates who do the pill cam will profit from this decision, but I also understand that many people do not get this oppertunity. For that I am greatful ( crossed fingers I get insurance approval)

We shall see.
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This should probably posted elsewhere BUT I feel like I kind of know everyone in this group (well, the regulars) so I like to ask Qs here! :)

Does anybody else not know when they need to go for a number two? This is a recent change, because I used to be constantly running to and from the bathroom, I definitely knew! Now, I just have to guess, like whenever I feel heavy I suppose. It's like there's been some kind of loss of function down there because it doesn't come out easily either and what does is not complete. Gross I know, apologies.
 
I want to cry - however I don't think I have any tears left. I am exhausted :( The GI appointment was BEYOND useless, he's like oh "your really lucky you haven't got anything wrong with you". I could have punched him, he was like oh it must just be intolerances... so I was like well if it was intolerances WHY do Pred and Pentsa help?!! Oh well there must be something but it's nothing serious. What a waste of my life that was! It is just ridiculous, there is NOTHING that is going to help me 'lactose/gluten free wise' you useless excuse for a GI! I have done them both twice for a month each and then both together and it did NOTHING, not a damn thing! I can't take this, I can't live like this anymore. I just don't know what to do.

So all I have out of that appointment is an allergy test, whatever use that is. I don't even want to go back to him again ever he's so blinking useless! I don't even know how I'm supposed to live with this anymore. It takes the mick. He just seems to think everyone should go gluten and lactose free and no one will have tummy problems. I could just cry. GRRRRRRRRRRR!!!!!!!
 
Omg rossanna i'm really feeling sooo bad for u! It also makes it much worse that due to the messed up appointment system u had to wait so long just to be pushed away like that! Wat u will have to do is keep going back to ur gp asking for answers for ur symptoms and keep pushing untill he'll refer u to a gi that will do the right tests! Don't give up hun coz that will deff. Not take u anywhere! Keep strong and good luck!
 
Solidsam said:
Omg rossanna i'm really feeling sooo bad for u! It also makes it much worse that due to the messed up appointment system u had to wait so long just to be pushed away like that! Wat u will have to do is keep going back to ur gp asking for answers for ur symptoms and keep pushing untill he'll refer u to a gi that will do the right tests! Don't give up hun coz that will deff. Not take u anywhere! Keep strong and good luck!
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That's exactly how I felt after my specialist appt. Really felt like I was taking up his precious time. Only to be told my lab work and tests were not bad enough to make a concrete diagnosis. Which is why I lost it with my GI NP after having a gut wrenching painful 3 days. I see my GI next week. Don't know how it will go. He can call it malarchy I just need a med to take care what ever is going on. So far having great results with Pentasa.
 
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Rose, can you go back to your good GP and explain what happened with the GI, and ask for a new urgent referral to a different (better) GI? That's what I would do. If your GP is as good as he sounds, then hopefully he'll agree that a new GI is in order ASAP. I think we've all seen useless doctors like that, you just need to not see him again and find a new GI who isn't absolutely clueless!
 
Problem is Cat - a new GI referal could take up to 16 weeks before the appointment. I can't wait around for 4 months with nothing now. I think i will speak to my GP and see what he suggests but its all just too long waiting around, i'm already looking at losing my job which is fantastic. Although i have been debating seeing if i can go back and do my A Levels in September as my college course just isn't working out. So maybe that would be a good thing. I don't know what to do really. Especially with my health as it is, that throws up all sorts of problems with attendance ect :/ i'm so unsure what to do because of my health :/
 
Yeh i agree the whole confusion thing about wat to do and wat not to and when yes and when not and to push urself or not has been one of the hardest things since having problems its both emotionally and physically tiring! But u gotta make sure just do ur best and not let it get u down! It'll obviously help if ur boss/teacher knows wats going on if ur alright telling them abt it! Either way go back to ur gp and he may even speak to the gi u've already been to and demand an explanation as to why he's ok leaving it as it is! If not he can sometimes get a faster appointment by a gi now that u've already been seen once
 
Sally123 said:
ive started to question myself as to wether or not this is all a mental thing but i can feel my bodies not right and that there is something wrong with me..(
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Hi Sally,

Glad you found the forums and all these wonderful people. I quoted this particular part of your post because I recall a similar notion about 7 years ago when I tried to figure out what was going on and the scopes came back with no conclusive findings.

When the GI specialist at the time couldn't find anything, I said to him, "Could it be psychogenic pain?" Meaning pain that is manifest in the body but caused by the psyche. He said, "It is possible, but the pain...it is very real". So I don't think he was truly convinced that it was psychogenic in nature and the fact that I was questioning that because they couldn't find what was up was probably an indicator that my mental health was relatively sound at the time and any minor stress I might have had wasn't enough to cause it.

I hope you find your answers, just like I hope everyone here finds theirs and then we can look at the next step: treatment and management of whatever ails us.
 
As well as going to your GP i'd look at making a formal complaint Rosanna. Stressing your test results, response to steroids, the fact that you've already done exclusion diets and so on.

It just might get you somewhere without too much waiting. I had to complain over no-one helping me, managed to get a referral elsewhere which saved my life! So can be worth doing.

As for me the good news is Mum has the all clear over her knee injury, it is just soft tissue damage which should heal soon.

The bad news is my flare hadn't gone because it's now back. Been over a week since I could eat a proper meal it's beyond tedious. Going to really attack it with more codiene and immodium when I go, gone on too long now. Can feel my anaemia getting worse but as I see specialist next Friday i'm going to tough it out, think it would be a waste of time I don't have to see GP and get bloods done locally.
 
Hey Lewis

Yes - I have problems with this - I kind of assumed at one point that the nerves were having 'communication difficulties'. Taking Magnesium seems to help me a bit with the messages -but I would definitely tell this at your next appt. Oh and going to the chiropractor helped a bit too for some reason.

Rosanna Kate.
I totally understand how you feel, and was kind of expecting it this time round to be honest - I hate seeing new specialists, and try not to get my hopes up in case this happens as it has so many times before. I swear some specialists are not Human!
I hope that you understand that this not you, it is their attitude that is the issue. It really sucks as it means that you need to see someone else to get this sorted. But you are worth it, and you are not imagining the significance of this.
Keep fighting for yourself, and your health. It will be worth it in the end.
I would speak to your GP and see what they can do.
I know that this sort of this is really emotionally draining. Is there any family or friends you can take to appointments to make people listen.
Feel free to vent here anytime you need.
Would there be any way you can see a specialist privately and pay if necessary? Just for the first time?
 
Thanks gotumtum, I'll give that a try. :)

Rosanna, I feel the frustration! I really do not know where these GPs and GIs you're seeing came from or more to the point, where they studied medicine at! I've been so lucky with mine and I wish I could send them to you somehow. You seem very strong minded, so keep at them because you deserve to receive the correct level of care and finally get that diagnosis. Even I haven't been prescribed anything and they're sure mine is IBD, so I find that odd too. :shifty:

----

A quick update from myself. Saw my GI for the first time today, noted my symptoms and checked my bloods and as my GP said he believes it's either UC or crohn's. So out I went with a huge box of moviprep and an urgent appointment for a scope on the 18th - finally! Really looking forward to getting some answers. :D

Anyone from the UK got any tips in terms of low-residue foods and things I can drink? I'm a bit confused on what counts as a clear liquid and whether I can still have liquid soups after the no eating point.
 
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Clear soups with no bits in them, jelly, small amounts of ice cream. After no eating, I would recommend just fluids, lots of them. I would go low residue earlier than recommended. The less fibre you have in your system, the easier the prep. The day before the fluids only, I just have toast. So pleased things are getting sorted!
 
LewisS said:
Thanks gotumtum, I'll give that a try. :)

Rosanna, I feel the frustration! I really do not know where these GPs and GIs you're seeing came from or more to the point, where they studied medicine at! I've been so lucky with mine and I wish I could send them to you somehow. You seem very strong minded, so keep at them because you deserve to receive the correct level of care and finally get that diagnosis. Even I haven't been prescribed anything and they're sure mine is IBD, so I find that odd too. :shifty:

----

A quick update from myself. Saw my GI for the first time today, noted my symptoms and checked my bloods and as my GP said he believes it's either UC or crohn's. So out I went with a huge box of moviprep and an urgent appointment for a scope on the 18th - finally! Really looking forward to getting some answers. :D

.
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I'm really happy for u mate! Maybe its worth it for me to come up to hull! I'm going to salford royal hospital.... Anyone know how good they are there?
 
Hey Lewis,
Good to hear you've got some movement going (and I mean through the network, not the alimentary canal). Here's hoping for some answers. I have my follow-up the same day, I think. I don't expect any answers except "let's do another scope/scan/cancer ray"

When I did my prep, it was basically a 2 day prep and they had me have a light breakfast and lunch and then liquids after that, which included broth, black tea or coffee (i don't do coffee without milk) jelly/jello (do they call it jelly in the UK like they do in NZ?) , but avoid red or purple fluids/jello. I found that odd as i had major surgery several years ago and when I was told clear liquids, it was basically water only. Nothing else. I'd get clarification from the doctor's office - ask to speak to the nurse. I'm sure everyone has different methods and it's better to do it right by their methods.
 
Hahaha better movement in that area would be welcomed also ATM! I'm sure the prep will sort that.

Appreciate the tips. Strangely looking forward to it? Feel like I'll be giving my bowel a rest and will feel good that It's had a bit of a clean out. Got my shopping list at the ready, hopefully it'll all go to plan. :)
 
I kinda felt that way about my prep too. Just please follow up with the nurse about specific liquids because things vary from place to place as I've found and trust me (you don't want the bowel prep and have to do it again because it wasn't fully emptied etc). Been there before and that was with following instructions. I know how anxious you are for answers (me too) so you can move on to treatment. Once you KNOW what's causing the strife, that's half the battle.
 
Okay, I have to post this. It's unusual and feels wonderful. Men, forgive me for what I'm about to share. I should feel like crap today. I had a busy day. Hot and horrible in the heat (just before the torrential downpour that caught me unawares and I was soaked from head to foot). I'm at the beginning of my period. I should be shattered - absolutely wiped out. But I'm not. I've had more energy this evening than I've had in ages. I'm a little tired, but nothing like I have been. I don't know if it's just a one-off, or if it's because I started the B12 throat spray on Saturday. It could be a fluke, but for a change, I feel great. I just thought I'd savor this moment, because it's about time for bed and I'm not sure how I'll be tomorrow. If I'm still fairly decent tomorrow, I will have to concede that already the B12 is starting to take effect. If not, then it's just a random burst of energy, possibly because I've been eating more often, but much less and decreasing the pressure on my digestive system. I hope someone else has had a better day/evening too.
 
Eternal Howl - I get this occasionally around the start of a period. It is a wonderful gift, and the only time my house gets cleaned properly! - Although I pay for it the following few days.
Hopefully it will stay for you:)

Do you have any more info on the b12 throat spray? Or have I just missed that post?!
 
Eternal_Howl said:
found that odd as i had major surgery several years ago and when I was told clear liquids, it was basically water only. Nothing else. I'd get clarification from the doctor's office - ask to speak to the nurse. I'm sure everyone has different methods and it's better to do it right by their methods.
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Hey Eternal,

I think I can offer some insight as to the explanation for clear liquids vs. water only. The reason you aren't allowed to eat anything before major surgery is mainly due to the heavy-duty anesthetics they use as well as any other medications they might administer in the peri-operative period; having a rule of being on an empty stomach allows care to be more standardized (there are many factors that go into calculating type and dose of drugs and by ensuring that patients are on an empty stomach, you eliminate/greatly reduce one of the more influential factors). Other reasons are possibly related to monitoring vital signs (although that falls under anesthesiology as well) and, in the case of specific surgeries (eg. abdominal), to aid in the surgery process itself. Very often a patient will be NPO before major surgery (and especially abd. surgery) which may include water.

Colonoscopies, on the other hand, almost always use conscious sedation (as opposed to general anesthesia), which often doesn't even require having an anesthesiologist on hand. The lack of anesthesia and cutting and the short procedure time make for a pretty small chance of complications. So, there is no "medical" need, per say, to be on a clear liquid diet - only a "diagnostic" need.

That said, I second your advice to double-check with your doctor (before any procedure, really)!
 
Lewis, here's a thread which has a list of clear liquids that are typically allowed.
http://www.crohnsforum.com/showthread.php?t=44105

As the others have said, check with your doctor/nurse to make sure what is allowed and what isn't - some places disallow certain colors of jello/sports drinks, for example. I think every doctor disallows red (because it can look like blood in the digestive tract - yes, when they do the scope, they can sometimes actually tell what color sports drink you've been having!). So no red, that's a given, but some disallow purple, blue, or orange. My GI allows orange but I believe he disallows purple or blue. So definitely check with them to see what you can and cannot do for your prep!

Ballerina - there are risks of vomiting/aspirating as well when a person has eaten before going under anesthesia as well, right? I remember reading a book about the 1930's bank robber John Dillinger - it said that at one point when he was getting too infamous, so he went to have a back-alley mob doctor do plastic surgery on his face so that he'd be less recognizable (he was the very first public enemy #1 so his face was in every newspaper and on every wanted poster). But for some reason he ate breakfast the day of the surgery, then told the doctor he hadn't eaten. As a result, he apparently aspirated and stopped breathing on the operating table! He got resuscitated (only to be killed by the FBI a few months after that), but what a frightening thought. So yeah, that's my understanding as well - with scopes, the main concern is cleaning out the large intestine well enough to visualise it on scope. With surgery, the big concern is aspiration and death!
 
Thanks :)

Any UK members know where to find pure chicken broth in a carton or can? Most soups here labelled 'broth' are full of vegetables. I wonder if just putting a chicken stock cube in water would work the same...
 
Roseanna - sorry to hear you had such a rough time, they sound awful. But please please go back to your GP (who sounds great) and speak to them - I continue to have a GI battle - found my current one by chance (as named one off) and now refuse to change anything without speaking to him (or his team) first as the others seem intent on buggering everything up!

Cat-a-tonic - yeah, airway problems are a huge risk in surgery (or anyone with a reduced level of consciousness (more so than the conscious sedation) that isnt NBM) and can lead to several complications which can be fatal.

Lewis - erm, not sure, ive been lucky (in a way) that I wasnt able to tolerate food(or fluids) when I had mine done. Maybe have a trial run? What about chicken bovril - does that have stuff in it that would be a problem - but def check with the hosp, they should have given you a list with your prep stuff. Fingers x you get some answers after it!

Eternal Howl - you post really made me smile - fatigue is a huge issue for me too, and just having a few hours (or a day) off and feeling more human is the most wonderful feeling, whatever the cause - I went to my best friends wedding yesterday, and have been worrying about it as I knew that it would be a very long (and busy) day, and I really feared not coping and therefore not enjoying it/worrying her. However, by weird fortune, I am on a 5 day course of pred for my allergies, and for the first time in a year I felt like an almost normal human-being, who could do normal stuff - which was both an amazing feeling and excellent timing! I am going to speak to my GP tomorrow to see if I can get my cortisol and ACTH levels checked - I know loads of people get an energy surge from pred (and although not had that bonus before I understand that it could just be that), but zombie to near normal human being, seems daft not to check.

Hope everyone else is ok, hugs to all!
 
Lewis, I would imagine a chicken stock cube in water would be fine. When I do prep, I usually put some chicken, water, seasonings in the slow cooker during the morning of prep day - the chicken cooks throughout the day, and by evening my hubby can have chicken for dinner and I have the broth. Homemade broth is sooo good, it's about as close as you can get to actually eating during prep day! So if you have a slow cooker or crock pot, definitely give that a try. And let us know if you have other prep questions, as most of us here have done prep at least once (I think I've done it 3 times now). Prep is not a fun experience, so being well-prepared beforehand (both with knowledge and supplies) definitely makes a big difference!

Madmouse, I had a very similar reaction to a short burst of pred, went from feeling horrendous to feeling wonderful in a span of about 24 hours, and my symptoms pretty much disappeared. What dose are you on? If it's something low like 10 or 20 mg, then yes, that's a low dose to have such a good reaction (especially since it kicked in so quickly) so yes, I agree that it would be a good idea to check on your cortisol and ACTH. I had that done, and it turns out I'm within the normal range, so I don't have Addison's/adrenal insufficiency, but it was good to rule that out anyway.
 
Cat-a-tonic - I was on 20mg a day, and it took 3 days, but it was great, sadly over now, but it was a lovely reminder of what life could (and will in "the fullness of time") be like. Sadly it didnt have any effect on my nausea/pain, which is troublesome but it is no way near as bad as it has been, so I am grateful for that. I spoke to my GP about it today - she said it hasnt been checked but would be really complicated to do so, as it needs several tests at set times - but that the other bloods that would be affected (sodium/potassium) are fine, so unlikely to be out by very much if at all. However, she is going to speak to an endocrinologist colleague for a second opinion - I doubt anything will come from it, but I think if you dont ask, you dont get.
 
If you do have inflammation, but don't use medicines, can your inflammation go away? Because my inflammation scores are higher but not like massively high, but I checked and they were all taken, when I didn't have that much pains and problems..
 
Leanne1994 said:
If you do have inflammation, but don't use medicines, can your inflammation go away? Because my inflammation scores are higher but not like massively high, but I checked and they were all taken, when I didn't have that much pains and problems..
Click to expand...

My inflammation makers lowered themselves, if that's what you mean and I'm on no medication. They were 127 and went down to 111 and during the time I had the bloods taken for the first result, I wasn't in much pain at all. I don't believe how you feel always represents what's going on inside.
 
LewisS said:
My inflammation makers lowered themselves, if that's what you mean and I'm on no medication. They were 127 and went down to 111 and during the time I had the bloods taken for the first result, I wasn't in much pain at all. I don't believe how you feel always represents what's going on inside.
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Yup I totally agree with this. My CRP is hardly ever raised. - Only at the very beginning of a 'flare' and was only 23 - but I am miserable at the mo and would have lots of D at the moment if I wasn't taking something to stop it, and my CRP is pretty much back to normal. I did hear somewhere that is some people it only marks the start of the inflammation and goes down again pretty quickly...oh, wait, maybe that was white blood cells??!! Though I did hear somewhere that not everyone with Crohns gets raised CRP. But some get super high CRP. Weird!
 
gotumtum said:
Yup I totally agree with this. My CRP is hardly ever raised. - Only at the very beginning of a 'flare' and was only 23 - but I am miserable at the mo and would have lots of D at the moment if I wasn't taking something to stop it, and my CRP is pretty much back to normal. I did hear somewhere that is some people it only marks the start of the inflammation and goes down again pretty quickly...oh, wait, maybe that was white blood cells??!! Though I did hear somewhere that not everyone with Crohns gets raised CRP. But some get super high CRP. Weird!
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Part of the battle with Drs (for me) is their reliance on bloods - yes they have there place, but its a bigger picture thing, and that is often forgotten. My CRP has always been ok, but my ESR is often raised (when I am ill and when I feel a bit better), and I can be quite unwell without it being tremendously high. Some people can also be feeling physically 'ok' but have really wonky bloods - everyone is different.
Hope you start to feel better soon! x
 
Private for me has never been an option gotumtum - i struggle to get through on what i earn now, and i'm debating going back in to education so i will have no income then, i'm going to try and apply for a type of benefit to get me some help as still need money to buy tablets. I shall not be giving up doctors wise!
I'm in two minds whether to go back and do A Levels or whether to stay at work. I need to make a decision by tomorrow really as i am going to need to contact the sixth form to let me in. I then have a 4 week notice period and i have a 4 week notice period at work. However i do have some holiday i can use for 1 week, so basically i have 3 weeks. I'm a bit nervous about going back with my stomach but i will be asking for an agreement in which i do 12 hours a week and don't have to do any of the extra rubbish they have to do.

Lewis hun, one bit of advice for moviprep... make it half an hour before you drink it and put it in the fridge to get cold, it's easier to take. Also make sure you have straws to hand as the less of your tongue it touches to hit your tastebuds, the better! Also don't put cordial in it like they say you can, it separates and is then impossible to drink as the powder is in clumps. Other than that - good luck with the endoscopy and i hope you get answers hun! Hugs!!
 
Thank you Rosanna! :) Strangely, as I said before, I'm looking forward to it - love a challenge (I'm just weird like that). It's great that you want to go back and do your A Levels, don't let whatever this is stop you. I'd love to go to uni, but with my symptoms I feel really cba about it. Should really take my own advice...
 
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You may not be saying the challenge thing when you've tried it haha! Just think though it'll be worth it in the end!

Well i'm currently doing an apprenticeship but i cant get into Uni on what my course gives me. So if i can get in to start this september, i can then still get two years of funding amd will get my A Levels for free. So fingers crossed they'll let me in this late!
 
RosannaKate said:
Private for me has never been an option gotumtum - i struggle to get through on what i earn now, and i'm debating going back in to education so i will have no income then, i'm going to try and apply for a type of benefit to get me some help as still need money to buy tablets. I shall not be giving up doctors wise!
I'm in two minds whether to go back and do A Levels or whether to stay at work. I need to make a decision by tomorrow really as i am going to need to contact the sixth form to let me in. I then have a 4 week notice period and i have a 4 week notice period at work. However i do have some holiday i can use for 1 week, so basically i have 3 weeks. I'm a bit nervous about going back with my stomach but i will be asking for an agreement in which i do 12 hours a week and don't have to do any of the extra rubbish they have to do.

Rosanna Kate - I think it is wonderful that you are thinking of going back to study. I was thinking of starting another course next year, but now everything is a bit up in the air.

I don't know much about it, but would 'crowd funding' or whatever it is called be a fundraising option for a specialist appointment?

Best of luck with the study!!!
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Roseanna - what is the apprenticeship? Sounds great that you are going forward and looking to go into further education - it wont be easy, but you will get there! All the best x
 
I've gotten past the 'if i feel better' point now Lewis. I've just decided that i need to grab it while i can whether that means struggling or battling with being ill throught well so be it. I need A Levels to go and do a business/ events management degree, and if thats what i have to do, however ill i am i'm going to do it. I've been pushing myself too far working 25 hours a week and i've been exhausted and probably worse illness wise because of it, so 12 hours sounds bliss!

Gotumtum - fundraising isn't really an option, for a start i don't like taking peoples money, no matter what its for and also i dont have the environment to do it. Private just isn't any option for me, because if they wanted to do any tests i still couldnt afford it. Unfortunately for me, nhs is all i can do.

Madmous the apprenticeship i have been in for the last year is in communications and digital media, i don't really like it any more, it's so samey and it just gets me stressed being there now. Which is part of the reason i want to go back to sixth form to get A Levels. Plus i want to go to university, which i can't without my A Levels. So in a way the last year has been a waste of time but then it has really put me in the right mindset to go back and study
 
Very commendable. Unfortunately I don't just have IBD, I'm just lazy in general. :tongue:

At college I used to wait literally a day before the deadline to start an essay, luckily I always managed to get them in! :biggrin:

I also spent most of my time doing this :drink:
 
LewisS said:
Very commendable. Unfortunately I don't just have IBD, I'm just lazy in general. :tongue:

At college I used to wait literally a day before the deadline to start an essay, luckily I always managed to get them in! :biggrin:

I also spent most of my time doing this :drink:
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Aww Lewis - we all do this - like the time I started my dissertation for my degree with 8 days to go...lets just say I moved into the LRC...

Fingers crossed for you Roseanna - hope it all goes well for you, but you seem to have the determination and you will get there - and your college should be supportive with regards to you being ill, just keep asking for help until they give it to you!

How is everyone?
 
Roseanna Kate - I hope that you are proud that you are fighting for yourself through all these obstacles. We all have them, but you seem to be fighting through them, and for the life you want, where as some people just give up. Be proud that you have dreams and are fighting for them:)



LewisS - Um I am another procrastination club member. Am sadly very good at it. Actually am currently avoiding a massive assignment - the last of my current course. Due Beginning October. And have a child to look after. Not good!!!
 
Saw my GI today after my specialist visit in June. We are back to a Crohn's diagnosis. My recent flare and response to Pentasa along with an elevated sed rate is having him treat as Crohn's. As long as the Pentasa is working I'm not getting a pill cam ...:confused2: he says Pentasa only treats Crohn's. If or when it no longer works, he has other Crohn's meds he's going to prescribe. But wouldn't say what they are.

I am however getting an upper GI with small bowel follow through. Says this will also help show I can do the pill cam if needed.

So is the Pill cam hard to get insurance to approve? I just can't figure out why he's dragging his feet on this?

At least he doesn't think it's IBS. Music to my ears....
 

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