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Hey Lewis - How r u?

Well my HIDA scan test results are back. - Negative. However the GI still thinks that it is the gallbladder and suggested referring me to a surgeon to discuss removing it. I can see the pros and cons for both arguments, but will see what the surgeon says.

I respect what the Gi says - he has a really good reputation. In the future we are looking at having another child, and I would hate to have it 'go' while I am pregnant- so will probably end up having it out unless there are strong reasons not to.
Does anyone have any experience with having their gallbladder out?

ellazmeanie - Have you tried Pilates?

I was having problems with coping in general with life day to day - and the pilates gives me time to just breathe, and stretch and stuff. - And classes are a good place to meet people!
 
Not too bad thanks gotumtum. Still not 100%, but getting there! Even when you get your diagnosis, although a relief, it's a whole new battle to find something that works in terms of treatment.

On a lighter note, I've had a few job interviews and waiting for responses. So nervous!

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So he thinks your gallbladder is the source of all your symptoms? If so, I'd get the thing out. Obviously when the time is right for you though. Has IBD been ruled out now?
 
Best wishes for the job interviews Lewis:) - Maybe practice some interview questions with a friend? - always makes me feel a bit more confident.

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The GI said that he was suspicious after the HIDA scan with CCK caused me problems - not much during the scan, but pain that afternoon and evening. And then it woke me up during the night (which I understand from google is quite common for gallbladder stuff) It got so Bad that I ended up going in to my Parents room at 1.30am - embarrassing. - But a bit strange as I usually get V and D when the pain is that bad. - Got the d the next am though. But it was like Labour pains - though in a different place and I couldn't go though it alone. I was sweating and trying all sorts of weird movements around the room trying to lessen the pain - must of looked really funny!

My concerns around removal (apart from the logistics of childcare etc) is the possibility of bile causing diarrheah issues - and once its out, I am assuming it can't go back in! :tongue:

He did say on my last visit that my "IBS" is the worst he has seen. ( which would suggest to me that its not IBS!) He suggested the pain might be because of the gallbladder, but did not say anything about the other symptoms though. And I understand that vomiting is not usually part of IBS....Uuuhhhhh! Fed up with it!
The weird thing is that it seems to flare like IBD - though I assume if it is gallbladder that it can flare too?

I do kind of want to just say damn it, lets remove it tomorrow, and thats something ruled out, and I can be better and there will be rainbows and unicorns and world peace....But I am trying to be a responsible parent, and think of the what ifs...

It depends on your definition of ruled out I suppose... I have had a mild CRP elevation, and a positive fecal occult blood, but colonoscopy, endoscopy and capsule endoscopy all negative. I kind of would like a CT or MRI to make sure there is no inflammation 'further back' (and to check for cancer actually) But I don't think the GI is keen to.

On the Gallbladder side I have had 2 Ultrasounds and the HIDA scan with CCK - all negative, as well as blood tests (white count gets mildly raised when I get sick enough to vomit - but I understand this can happen with 'normal' vomiting anyway)Also statistically gallbladder is more likely - I have just found out that my Auntie and Grandma had theirs out - but had stones.

So to be honest I am not really sure where I am, and what is/isn't ruled out. What happens when you get to the bottom of the list? Start again?
I am running out of will to keep looking, but I know I have to.

I have lost quite a bit of weight in the last 18 months.
I have been through:
my post baby and eat lots of cake jeans (size 20), my maternity jeans (size 18), my second trimester jeans (size 16), my pre pregnancy/ put on weight because of medication jeans (size 14), my been married for a while jeans (size 12) and am now in my 'I remember these from when I was young' jeans (size 10) - I still have my 'young and thin' jeans (size 9) which I can fit, but will prob fit comfortably next week.

I am soooo over this

Thanks for your support.

Has anyone else had their gallbladder out on their diagnosis journey?
 
To be honest I feel so crap most of the time I try and exercise at home with weights rather then go to a gym I have a large screen pc so will look at pilates on youtube not that I'm timid have this punch drunk look on my face to do with the cerebellar issue's and the dizziness,not really easy amongst people as I find a few stare and even comment that I'm drunk or on drug's only really go to appointments and shopping local it's going to be a task to get as far as Durban South Africa but for Ella I will endure.
 
ellazmeanie - at my local gym there are quite a few people working on recovery from stroke or injury so we are used to people being a bit 'different'. I also like the atmosphere when the tutor instructs us in a new or more difficult exercise and there are giggles and squeaks and grumbles from around the room as we each struggle with a different part of the exercise - whether it be balance or muscle strength or co-ordination or fitness level! (or all of the above in my case!) Out tutor is really nice as she checks how we are and how each of out health troubles is going, so she can alter the exercises for us. I grumble every week when I leave the house to go, but I come home with a smile on my face, and I know that is it good for me, and I would not get the same benefit from a video. But we do what we can, when we can:)
 
Ohhh wow I'm just about booked for my holiday in Durban found the most stunning guest house offering a double bed space as a single person right next to the sea with a balcony over looking and 12 to 16 minutes away from Ella flying Emirates via Dubai from the end of march to the end of april after 4 good year's I'm finally off to meet my bella Ella ;)
 
Also have a surgical outpatient appointment for next week to screen for stomach cancer everything's happening at last :)
 
@ gotumtum - thanks, I got offered the job today. Things are finally looking up after this horrible year! Never thought I'd be able to work with my CD. :)

I am currently on combination therapy (6mp and Humira), by no means am I in remission yet, but I'm getting there.

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Really hope you get answers (and relief) soon, you deserve it! I've heard somewhere that IBD can affect the gallbladder, so maybe the two are linked somehow? My old GI is a liver enzyme specialist as well as a gastro and he mentioned something once.
 
Lewis yey! That's great news! :dusty: So pleased for you :)

As for me no diagnosis but the anaemia is responding magnificently to the treatment, however my low B12 has gone even lower so that is now being treated too.

Really not sure what the heck is going on as per usual.... ;)

Generally speaking apart from flare ups I have been fairly stable and on the same meds taken as needed so having all this happen and more daily meds has been quite disconcerting and difficult to cope with! Just as I was coming to terms with what happened in June, the rushed emergency Hospital admission/stay and transfusions, which was awful this happens.

My Drs are mixed as to whether it was a medication reaction or not which caused the anaemia. Some were sure it was some were sure it wasn't. Certainly with the B12 getting worse I certainly feel a medication reaction as the cause is now more unlikely. I stopped taking that 5 months ago, took the correct medication to heal the gastritis they found, so surely all those factors and my body's natural healing process should have taken care of things if the meds caused it. I'd be really interested to see what would happen if I stopped the anaemia treatment personally. Not that I intend to!

The Dr who originally found the problem has discharged me which sucks, another Dr given up, but I am still under the new Gastro.

I am supposed to have a follow up in February but no appointment yet so will be chasing in a few weeks if I don't get it.

On top of that in my personal life I always find Christmas difficult, and just been landed with a secret the content of which is personally upsetting. But while I am fine that it is not my place to tell also I can't discuss my upset with anyone really! Although I may myself confide in a friend next week who is outside the situation. It is something I had my suspicions may be true so it wasn't as big a shock as it could have been.

I sure wish being chronically sick excused a person from the normal life s***t!
 
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Lewis, congrats on the job! It's fantastic that you're doing well enough to be able to work! :D

Star, I know exactly what you mean about chronic illness and normal life stuff. Normal life stuff never goes away and sometimes seems to be 10x harder for us than it is for everyone else! And for me when I'm not feeling well then it just adds guilt - I should be doing the laundry, dishes, walk the dog, etc, but if I don't feel well enough to do that stuff it's not like it just goes away. My dog gets antsy and the dirty dishes and laundry will pile up anyway. It's exhausting to be ill, and doubly exhausting to be ill and have to try to live a normal life. I don't have answers for you but I definitely understand!

It's funny you mention having difficulties with xmas. I personally really dislike thanksgiving which is tomorrow - a holiday where you're forced to sit around with your family and stuff your face with food. Not exactly ideal for an IBD'er! The stress of getting together with family (I have to go to my in-laws' house tomorrow for thanksgiving, ugh) and they keep telling you to eat more. Just no. Xmas is better for me, there's not as much pressure to stuff yourself with food, plus you get presents and the decorations are pretty. Thanksgiving is such a food-centric holiday and that's basically it, it's just eat food and watch (American) football on TV and get into a fight with your family. :p I'll be quite happy when tomorrow is over!
 
Why am I happy yet still feel so damn sick my guts feel like a load of rancid dirt feels like there's filthy air trapped in there my sides feel rigid like there's poles or rods going down each side slightly painful but more ticklish then anything,my groin feels puffy and aches from my feet up leg's hips and a sick feeling all over behind face n eye's feels weird
 
Well I don't know about feeling unwell but I'm in a better place emotionally off to meet Ella excited happy took time out from my friendship left the odd greet then switched phone off put it in back of the draw had time to reflect and to my surprise we are talking again,I feel a lot more confident then I have in recent times and reckon I will try jumping on packed out trains and buses a bit more and walk with a stride after all what's so bad I have the most loving lady in my profile pic who is just about to become a bit realer I'm good from here on ;)
 
well I'm going to Mayo next month. The other Dr. in my network wouldn't see me for a second opinion even though my GP recommended it, is that normal?
I am a little happy to go to mayo though, but it makes me more nervous, what if i go through all the tests, travel and expense and its ibs after all?

also, my newest symptom is my feet and ankles swell up, doesn't seem to matter what I do to relieve it, they just keep puffing up. Is this normal? related?
 
Hi Amanda - sorry you are having a battle - I hope the drs at the Mayo are helpful and you get some answers.
Ankle swelling can be caused by an number of different things, but isn't a normal IBD symptom (to the best of my knowledge) - speak to your GP about it. In the meantime try and keep your feet up when you can (so try and limit the time on your feet and when sitting raise them on a stool or sofa) dont wear tight fitting socks and that might help.
Let us know how you get on

On a completely selfish note, I am dreading Monday - I have a gastro appt and I really need them to go back to being helpful and do something about my joint pain, which is spreading and often wakes me in the night, plus its making work increasingly difficult - and not dismiss me like last time. Fingers crossed! Gastro symptom wise I am not too bad, not great but better so thats something.

Hope everyone is ok x
 
Have joint pain aswell my feet are worst even with comfy shoes on hard to sleep as keeps waking me or just can't relax,end up in foetal position the aches are made worse by an all over sick feeling.Something concerning is my niece has leaky guts and my older sister who had cancer complains of body aches and dizziness and balance stuff my mother had cerrebular issues year's ago and now uses an electric wheelchair to get about I to have some cerrebular stuff being checked out sure we are all being poisoned by the illuminati or maybe Cameron ;)
 
Hi Been over a year since I last conversed in the forum.
After a colonoscopy in April 2013 (following bleeding, weight loss, elevated calprotectin, abdominal and back pains, diarrhea (sometimes constipation)) came back clear I was again diagnosed with IBS (as I had been for the previous 20 years) got put on Amitryptiline alongside omeprozole (for GERD) and the next to useless meberverine and hyoscine. That for a while kept the flares not stopped but subdued, but had to have the amitryptiline dose doubled twice. But since this Autumn flares kicked up a gear again. Rectal bleeding on and off but constant for four days during that time (no bleeding now for a few weeks thankfully) abdominal and lower back pain not constant but more on than off and varying in strength and type, strong cramps to dull ache to quick stabbing pains up my back passage. BMs are predominantly diarrhea or fairly loose. No weight loss this time, lost over a stone in a short while the first time I went for the c scope, but the amitryptiline piled the weight on me, which in my case is no bad thing. Also in tandem with flare-ups, have had some more short weird nausea, confusion and heavy sweating episodes, outbreaks of boils and recurring throat infections, so have spat blood too. Chest x ray ruled out any lung issues, blood tests tested negative for salmonella, no calprotectin test taken for some reason and generally normal except for slightly elevated liver enzymes. So have been referred to another GI, this time at a different hospital (the last specialist I went to, I didn't actually see but was passed on to one of his juniors, is not I think in particularly high esteem with my GP as another of his patients was referred to him, diagnosed first with IBS, then he lost a lot of weight and couldn't even stand anymore and was then diagnosed with a hidden cancer. They went elsewhere for a second opinion, no cancer but tested positive for Lupus. Now he is on the right medication he has put back a lot of weight, is getting out and about and looks and says he feels much better). So anyway I see the new specialist on December 12th (waiting times are pretty ridiculous currently. It can take 3 weeks just to see a GP). I've not actually felt too bad the last week, best I have in months but have kicked off with diarrahea again today. And on that timely note, gotta run - better love you and leave you ...
 
Busy week next week Tuesday have bowel cancer screening Wednesday have dental hospital and Thursday have my mri appointment
 
I already introduced myself in the 'Your story' section of the forum. Had a stomach flu almost two month ago. Since then my symptoms haven't been totally gone.

My symptoms:
- Diarrhea or loose stools, up to 10 times a day
- Mucus, sometimes mixed with a little blood
- Pain around my belly button and on the left (variating from a dull pain to severe stabbing pain)
- High CRP
- Fatigue

What lead up to this:
Three years ago I started having hunger pains. The GI diagnosed IBS and functional dyspepsia. I didn't really get why I got the IBS-diagnosis, because my bowels didn't really bother me.

In 2014 I had the flu four times. Half a year ago I fainted after walking up a stairs. My GP suspected anaemia, but nothing came up in the blood tests. A few months ago it was discovered I had a vitamin D deficiency.

Monday I'll make an appointment with my GP (again) to ask what the next step will be in investigating these symptoms. I'm not looking forward to this.... I already have chronic migraines and chronic wounds from a pilonidal sinus operation. I've had enough of hospitals...

Maybe something's wrong with my immune system which causes all of these symptoms? Including the not healing wounds?
Or maybe the current problems with my bowel are caused by the painkillers (NSAID's) I take for my migraines? I take them twice a week (can't take more).
 
Star Girl,

I am by no means trying to diagnose you over a computer, but with a steadily dropping B-12, and findings of gastritis on EGD in the absence of actual bleeding or confirmed crohns, one thing that comes to mind is Pernicious Anemia- It's actually its own autoimmune condition that destroys certain cells that make something called intrinsic factor that is needed to absorb B-12. Classic symptoms are smoldering and worsening anemia, diarrhea, upset stomach, and if it progresses, the symptoms of B-12 deficiency. Maybe you have already had this looked into, but if not, just something to think about.

Take care...
 
I have not had Pernicious Anemia investigated specifically because the IDA is relatively new and the lowering B12 is even more so. I do not feel enough has been done at this point to rule out CD but that is certainly something I will raise.

Up until June in 8 years of ill health all they ever found was a modestly raised CRP and have had many tests looking for CD. But only a up and down scope since June with the new blood results. Even then some Drs I saw were convinced it was the NSAIDs others were equally convinced the other way! My B12 then was 143 (should be 200+) and in November 131.

However in that 8 years things always seem to come back to CD being the potential cause. My symptoms over the years certainly fit.

I see my Rheumy next week so I will sound him out but otherwise it'll be February for the GI (got to chase that actually still waiting on the actual appointment). Also will get bloods to see where the haemoglobin and B12 are. The latter was excellent at last test after 2 transfusions and 5 months of iron tablets!
 
Hi all, just a quick update from me as I never seem to have time to pop in here anymore! I've been reading, just not posting a whole lot.

I went through a few months of labyrinthitis/vertigo, as most of you know, and I think I'm finally 99.9% over it. Sometimes I still get, not actually dizzy anymore, but it's like my brain and my feet don't communicate so well. Like, yesterday I went xmas shopping with my parents, and we went into this store where the aisles are very narrow and there's a lot of breakable stuff on the shelves. So I had to walk through this store very carefully, and it was like the stress of having to do that made my feet not quite go where I wanted them to. I sort of stumble-walk when this happens. Fortunately I didn't knock anything over or bump into any shelves, but it was stressful and unpleasant to basically be kind of drunk-walking at times like that. I'm not sure if this is just how I am now - I've always been klutzy, but this is like an added klutziness that I didn't have before. Just another health quirk added to my long list I guess. Fun.

Speaking of klutziness, I accidentally bashed the back of my hand into the footboard of my bed over a month ago, and it hurt tons at first and the bruise is still there weeks later. It doesn't hurt anymore really, but I'm pretty sure I broke at least one bone in my hand (when I broke my big toe years ago, that bruise stuck around for ages as well). It was so insignificant though in comparison to everything else I've been through lately, that I didn't even see a doctor about it. I just put ice on it the first day and that was all the treatment I've done for it. And I've continued using my hand (typing, crocheting, writing, etc) without much issue. It just goes to show how your mindset and pain tolerance change when you have chronic health issues - my co-worker noticed my bruise last week and she was like, "What happened??!!" And I was like, "Oh, hah, hit my hand on the footboard of my bed while looking for my chapstick, it's stupid! Yeah, it might be broken, but whatever." My guts have put me through so much worse and so has the vertigo, that maybe breaking my hand didn't even really register to me as a "go to the doctor" type of event. :p

Other than that, things have been pretty decent. I've been off of Entocort for a couple months now and still doing okay. Not sure if I'm in remission or not but I'm hopeful. I suspect I'm close to remission if nothing else. I've had a LOT of work stress lately though which has been making my guts angry from time to time, so that has skewed my ability to tell just based on symptoms how I'm doing. Fortunately, the most stressful work project was just taken off my plate and given to someone else (my boss is really nice and she could tell that this project was stressing me out way too much - seriously, my hair started falling out again and it rarely does that particularly when I'm in/near remission!). So, my life just got less stressful and I'm hoping that my symptoms will ease up significantly soon. They haven't been too bad, just some d at times and some fatigue and the occasional day of bad nausea. With any luck, the reduction in job stress will translate to a reduction in symptoms and then I will maybe hopefully be in remission and be able to enjoy it!

I hope everybody else is doing okay. Hi everybody and sorry for not checking in more often! Big hugs to all and welcome to the new members!

Edited to add: Did I say that would be a quick update? Sorry, you guys know how wordy I tend to get! :p
 
Hi, I am new to the forum. Started having really bad gut issues in 2011 (had symptoms off and on before that just assumed IBS). Then had a few symptoms that pointed towards IBD (elevated CRP, WBCs, chronic anal fissure, joint pain, and weight loss). Initial colonoscopy was negative in 2011. Then had appendicitis in 2012, symptoms worsened. Pillcam afterwards - also negative. Still battled with symptoms and asked to try pentasa - worked really well. Had another colonoscopy in 2013 since I responded to pentasa and symptoms reoccurred - still negative. Has upper abdominal pain at the end of 2013 and upper endoscopy found GERD and a small hiatal hernia. I have a family history of AS and started getting a lot of joint pain at the beginning of the year. Referred to a Rhemy and MRI found sacroillitis and diagnosed me with a seronegative spondyloarthritis (thought maybe the type related to IBD) and started on sulfasalazine. Now I have low iron and raised inflammatory markers. GI said he doesn't think that it is crohns, but he can't ignore what the bloods are showing. Suggested another colonoscopy early next year and then pillcam if that is negative. All along I really felt like it was crohns, but now I am not so sure??
 
I think we can all sympathise with that, being undiagnosed I think it's natural to latch onto a possible cause and be sure about it, only to change your mind back and forwards!

What reasons has your GI given for not thinking it's CD? As those symptoms and test results could fit from my experiences on this forum.
 
Lorikeetie said:
Then had appendicitis in 2012, symptoms worsened.
Click to expand...

Does having an appendicitis have something to do with IBD's? There's research that says that having your appendix taken out is a protection against CU. But an appendicitis is an inflammation of your bowels. So could it mean your prone to getting more inflammation in your bowels?

My appointment with my GP is on thursday.
 
Due for an endoscopy and colonoscopy apparently have to be half sedated for the latter never been sedated before a new experience but I'm a lot more hopeful then I have in the past that thing's are finally moving in the direction of a diagnosis at last
 
I think that removing appendix may reduce the risk of UC, but increases the risk of CD.

"The relationship between appendicitis, appendectomy, and CD is not as clear. It is confounded by the very similar clinical presentations of appendicitis and acute ileitis, with a number of patients undergoing appendectomy for presumed appendicitis when the diagnosis turns out to be CD either at the time of surgery or months to years later"

GI has not given a reason for why does not think it is Crohn's.
 
Can I ask what the pre op colostomy medication is never had anything quite so extensive before and how long does the procedure last
 
Colonoscopy preps always vary from Hospital to Hospital, you will be sent the necessary medication and instructions ahead of your procedure, I would encourage you to read through everything carefully and follow them as stated.

In the Tests for IBD section of the forum there are great scope prep tips :)

As for the procedure it can depend on a number of factors but personally I would say no longer than 30 minutes generally. It may seem longer or quicker during the actual test depending on how the meds work (you mentioned partial sedation before). Again people react to those differently.
 
Thank you Starrr your a star ;) I have to go and pick up the stuff from my hospital next Tuesday and the actual procedure is booked for January 6th a day after my gastroenterology appointment
 
Hey guys, hope you don't mind me having a huge rant about my experience at the hospital yesterday.

First of all, the nurse says to me when taking my medical history they think you have crohn's disease. I'm like, what?! Apparently this is all over my records, just they failed to inform me. I'm still in the situation where they can't find the inflammation but there seems to be some sort of recognition that I probably have crohn's.

So I'm sitting on the bed, cannulated and ready to go and I see the doctor walking in. I recognised her from my inpatient stay in 2011, when she was a gastroenterology registrar. The surgeon who referred me for this procedure referred me to a specific surgeon (not her) and told me he was pretty much the only guy in the country doing the procedure I needed to have. The letter I received told me I would be having this surgeon doing my procedure. Then she comes out in scrubs with her hoodie on and starts chatting audibly about how she's going to cancel the last patient who is a very sick inpatient so they can be 'out the door by 5'. One of the nurses starts telling her off that her uniform is not good enough.

She never introduced herself beforehand, just when I got to theatre. When I got to theatre she was sitting at the computer with her back to me with a bright pink hoodie on, just find this so unprofessional. Scrubs are laundered within the hospital and clean, hoodies are not meant to be in theatres. She told me her name, asked if I had any questions and that was it. The nurses were absolutely super though. The nurse sprayed the back of my throat with local anaesthetic, which I've had no problem with before (she did spray it about 8 times though!) and instantly I couldn't stop retching. I could hardly breathe and started to panic. My heart rate went through the roof. Has anyone else had this problem?

Anyway she called on the doctor who was still sitting by the computer to come and give me some sedation to stop the gagging/calm me down. Turns out she hadn't preloaded me with oxygen so I couldn't have any sedation and had to sit like that until she had sorted it out. Normally when I've had scopes, I get all set up, oxygen on, throat sprayed and the sedation goes in right away. But she hadn't bothered to oxygenate me so I had to sit and suffer like that. I felt like a huge inconvenience to her to be honest, that having this problem was really annoying for her.

Anyway, it was a really difficult procedure for me, I can remember snippets of being held down. They tore my throat lining during it and had to suction a load of blood out and now I have a killer sore throat. I've had sore throats after scopes but damn, this is agony! I was told not to panic when I cough up blood! The scope was down for 30 minutes, anyone who's had a scope will know that's a longgggg time.

The most disappointing part was my mum came for me and we both waited in recovery for an hour and the doctor never showed. Eventually the nurse came in and said I'll go through everything with you. As it transpired, she wasn't even in the room so couldn't tell me anything. If the node was big, dark, what it looked like etc. Just that it was really difficult, I was distressed, so they may have to repeat it under general anaesthetic! I don't really understand why they didn't sedate me further if I was that distressed, and it certainly wasn't explained to me.

Last night I had pain all through my back and stomach. It wasn't bad, just irritating and every time I ate it felt horrible. I could only get to sleep on my front. This morning is a bit worse with cramps in my back (?!) every so often.

They have told me to wait three weeks then whatever doctor they send the results to will get in touch (they had the wrong doctor, they didn't even know who referred!) but I'm not going to hang about. It's been 4 months since my PET scan. I heard a lady saying she had her PET scan on Friday and she was in yesterday for her biopsy. Why the delay for me? Because my referral came from the private sector?

Seriously disheartened by all this.
 
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I am so sorry to hear about what happened.

I would urge you to contact the relevant complaints service as those are serious issues.

I realise with being sick you may not have the energy, but you could copy/paste your post into an email/word document and edit it a little bit day by day until it's finished.

I had a bad scope experience and didn't complain which I really regret now.
 
I am just checking in to say that I ended up getting in very quickly to see the gallbladder surgeon. He said that it sounds like it is the culprit - for the pain at least, and recommends removing it. I will book a date for the end of february, and we will see if it helps.

In case I am not back here beforehand - Wishing everyone a relaxed and happy Christmas and New Year - and hopefully some resoloution and closure for us on the undiagnosed list!
 
Dutchgirl said:
I already introduced myself in the 'Your story' section of the forum. Had a stomach flu almost two month ago. Since then my symptoms haven't been totally gone.

My symptoms:
- Diarrhea or loose stools, up to 10 times a day
- Mucus, sometimes mixed with a little blood
- Pain around my belly button and on the left (variating from a dull pain to severe stabbing pain)
- High CRP
- Fatigue

What lead up to this:
Three years ago I started having hunger pains. The GI diagnosed IBS and functional dyspepsia. I didn't really get why I got the IBS-diagnosis, because my bowels didn't really bother me.

In 2014 I had the flu four times. Half a year ago I fainted after walking up a stairs. My GP suspected anaemia, but nothing came up in the blood tests. A few months ago it was discovered I had a vitamin D deficiency.

Monday I'll make an appointment with my GP (again) to ask what the next step will be in investigating these symptoms. I'm not looking forward to this.... I already have chronic migraines and chronic wounds from a pilonidal sinus operation. I've had enough of hospitals...

Maybe something's wrong with my immune system which causes all of these symptoms? Including the not healing wounds?
Or maybe the current problems with my bowel are caused by the painkillers (NSAID's) I take for my migraines? I take them twice a week (can't take more).
Click to expand...

Had an appointment with my GP today. We're gonna do another bloodtest to see if there's still inflammation. If there is, she's going to refer me to a GI.

My GP said it's very rare For people under 40 to have an IBD. I'm 26, so she said it's not likely I would have an IBD. Is that true? I've read it's most common to start between the ages of 15-25.
 
Isgs, I'm sorry to hear about your poor experience - I would definitely complain, even if it just stops someone else going through the same thing. Was it an OGD? When I had mine I was sedated with no throat spray and I had to be restrained - I can't remember being distressed but I can def remember being held down! Hope you get some answers soon x

Dutchgirl - sorry you are having a tough time. There are lots of things that might be causing your symptoms, including IBD. In terms of NSAIDS, if they are concerned you might have IBD speak to your dr about it, as most people with IBD cannot tolerate them and the general rule is don't take them. Obviously don't stop any medication without talking to a Dr first, and they may keep you on them as you don't have a diagnosis or if risk/benefit is in your favour, but worth a conversation.

Just a little update from me. My GI appt was better and I have finally got him to agree to send me to rheumatology but he won't refer me, I have to wait for my GP to do it. I spoke to my GP as one of my fingers was very swollen ?cause (they are all painful but not usually swollen) who ordered bloods and an xray. They came back fine, but because I am currently on budesonide, sulfasalazine etc... he said he would still refer me now (rather than waiting for hosp letter which takes an age), so hopefully I might see someone in a few months time. This is progress, which I am pleased about, but the GI also told me I was being 'sensitive' and basically told me to 'man up', when I explained that whilst better, my GI symptoms are not great and still interfering with life. I was shocked so didn't say anything, but when I got home I was upset and it is still playing on my mind 2 weeks later. Am I overreacting and being 'weak/sensitive'? I just wished I turned to him and said, thats not fair, I am carrying on with life as best I can, I don't spend every moment of every day moaning and I do what I can (i.e. work, try and see friend, etc...) even though my symptoms are not great, but surely the point of the appt with the GI is to be honest - what is the point of me lying and saying everything is tickerty boo when I still have pain and nausea (and fatigue) that distrupt life? I know things are better than they have been (this time last year I was in hospital, and I am currently managing to work), but does that mean that I can't be honest with my Dr?Sorry to rant but it has really got to me and I am questioning whether he is right.

Hope everyone is ok and enjoying the run up to the festivities.
 
Dutchgirl said:
Had an appointment with my GP today. We're gonna do another bloodtest to see if there's still inflammation. If there is, she's going to refer me to a GI.

My GP said it's very rare For people under 40 to have an IBD. I'm 26, so she said it's not likely I would have an IBD. Is that true? I've read it's most common to start between the ages of 15-25.
Click to expand...



Get a new GP, right away.

It can strike at any age, but the vast majority are in adolescence or early adulthood. Late teens/early 20s.
 
I'm new to this forum, thought I'd write my story... Symptoms started in September 2013, just after I turned 19 and was starting university. I was getting diarrhea and cramps about once a month (sometimes less, sometimes more) but kept putting it down to having drunk too much on a night out, or just thinking it was a random bug. After about 6 months I started thinking I should visit a doctor, but kept putting it off because I wasn't convinced my symptoms were bad enough, or that there was anything really wrong. By summer 2014 I finally got round to it and saw my GP at home where my parents live. She ordered a stool sample and blood tests but they all came back clear except for anaemia. She then prescribed me iron tablets (told me they might upset my stomach!) and gave me some leaflets about IBS and that was it. September 2014 I came back to university and went to see my regular GP here. He wasn't happy with what the first GP had done (thankfully) and decided to refer me to a gastroentorologist at the hospital. That was at the end of September and my appointment is 20th January 2015... My symptoms have been getting worse recently, horrible cramps and diarrhea nearly every two weeks and lots of days where I have pain and can have a BM three or four times. The worst incident occurred a week ago, 5 days of pain, fever and diarrhea with one night where I had 15 episodes of diarrhea between 22:30 and 4:30 (no sleep until 5AM, horrible!). My weight also fluctuates a lot, I'm not underweight by any means, but it can change by half a stone in the space of a couple of weeks. While I'm sure that this isn't 'all in my head' I often feel like my symptoms aren't serious enough for this to be IBD. Anyone think it could be, or am I overeacting to a bit of IBS?! Can't wait for answers in January... :yfrown:
 
marthapmr said:
I'm new to this forum, thought I'd write my story... Symptoms started in September 2013, just after I turned 19 and was starting university. I was getting diarrhea and cramps about once a month (sometimes less, sometimes more) but kept putting it down to having drunk too much on a night out, or just thinking it was a random bug. After about 6 months I started thinking I should visit a doctor, but kept putting it off because I wasn't convinced my symptoms were bad enough, or that there was anything really wrong. By summer 2014 I finally got round to it and saw my GP at home where my parents live. She ordered a stool sample and blood tests but they all came back clear except for anaemia. She then prescribed me iron tablets (told me they might upset my stomach!) and gave me some leaflets about IBS and that was it. September 2014 I came back to university and went to see my regular GP here. He wasn't happy with what the first GP had done (thankfully) and decided to refer me to a gastroentorologist at the hospital. That was at the end of September and my appointment is 20th January 2015... My symptoms have been getting worse recently, horrible cramps and diarrhea nearly every two weeks and lots of days where I have pain and can have a BM three or four times. The worst incident occurred a week ago, 5 days of pain, fever and diarrhea with one night where I had 15 episodes of diarrhea between 22:30 and 4:30 (no sleep until 5AM, horrible!). My weight also fluctuates a lot, I'm not underweight by any means, but it can change by half a stone in the space of a couple of weeks. While I'm sure that this isn't 'all in my head' I often feel like my symptoms aren't serious enough for this to be IBD. Anyone think it could be, or am I overeacting to a bit of IBS?! Can't wait for answers in January... :yfrown:
Click to expand...
Also thought I'd add that I have extreme fatigue a lot of the time, can easily sleep for 10-12 hours in a night and still have a nap during the day... Friends keep telling me that I'm getting too much sleep which is why I'm tired, could that be the case?
 
Thanks for all the replies guys!

Star girl, tbh my treatment (within the NHS certainly) has been extraordinarily poor from start to finish. I have no idea how we tolerate such poor care and people say we should be thankful. I cannot be thankful for the substandard care I have received.

Mad mouse it was an endoscopic ultrasonography with fine needle aspiration, trying to get to a lymph node they think is cancerous. The scope is slightly thicker and has an ultrasound probe on the end, they get the probe next to the lymph node and poke a needle through the gut wall into the node to get a sample. I have never had problems with an endoscopy before and have had several.

To be honest, no, you're not being sensitive at all. I really mean that. It's easy for a GI to sit and say that, but try walking a day in your shoes. I personally have always said I find GIs lacking in the empathy dept. If they can't diagnose you or if it suits them they will blame the problem on you (too anxious, too stressed, too depressed etc). I have been in your situation before and it really upset me but it's not your fault at all. He is not right, he is not listening to his patient and he is providing poor care because of that. You wouldn't get away with it in any other profession.
 
I have just received the appointment letter for my colonoscopy on January 6th have to go and pick up the pre med stuff next Tuesday,reading about the procedure I reckon I will pass on the sedation the pain meds should be enough for me out quicker I guess to the nearest food supplier that's if I'm allowed to eat so soon after.
 
lsgs, how horrible. I'm with Star, I think you should write a letter of complaint. It's been how long now and they haven't even been able to ascertain for sure if it's cancer or not or which nodes are affected?? That's seriously wrong. I don't know the ins and outs of the NHS so I don't have more suggestions for you other than what Star already said. I just wish they'd do something for you already! It seems like ages ago that they said it's probably cancer, and they're still not doing anything?? Can you get a lawyer to help with this, would that help matters at all? I don't know what else you can do but I hope they actually start helping you soon. Ugh, I'm angry on your behalf! This is frustrating and upsetting. Sending you a big hug from across the pond and hoping that they start actually helping you rather than ignoring you.

And I just don't get how they do scopes there in the UK. It sounds to me like the sedation is always light enough that you're awake/aware of what's going on? They would never get away with that here in the US. I always get a combo of versed and fentanyl (sometimes Benadryl as well), and that knocks me right out. They call it twilight sedation as apparently I may still be minimally conscious, but I sure don't remember anything and I've had that sedation 4 times now. I don't know how you guys in the UK do it, being awake particularly for upper scopes! That sounds like a horrible experience. All of my scopes have been, they give me the medication and then it feels like I had a nice nap, and then I wake up and it's time to go home. At my last scope, the nurse asked me if I minded if she put on some music. I was like, I won't remember it anyway so listen to whatever you want! And I don't remember any music. In my opinion there is no other way to have a scope. Knock me out and do whatever you want! :p I guess that's the trade-off, though. Here we have to pay for medical stuff (even with insurance, you have to pay deductibles, co-pays, etc) so I guess they give us better sedation knowing that they can charge it to our insurance and/or we'll pay out of pocket for it.
 
I have to say Cat I speaking as someone from the UK I don't understand why in the US they always knock everyone out lol.

Even if the sedative does not send you to sleep it does make you very relaxed and removes alot of the anxiety.

My upper scope with it I laid there and thought a couple times "well this is horrible". Sore throat didn't start for a few hours and went overnight. I felt so well after I tried to sit up in the recovery ward only to discover I couldn't quite manage that yet. Had toast 20 minutes later.

The one without I was panicked and wanting to tear it out, plus my throat killed right after and for 48 hours. Despite having the so called numbing spray!

Uppers are usually over within 10 minutes or less.

We all have had bad scope experiences but generally the drugs you get here do do the job. Although I think having an upper and being totally out of it would be quite nice.
 
Star, I suspect it may have something to do with our health system here and the fact that we have to pay so much for doctor bills even with insurance. Think of it this way - if you had an awful experience with a scope where you were awake and in pain and panicking etc, and then you got a $3000 bill for it, you'd be furious! But if you had essentially a nice relaxing nap and then got a $3000 bill for it, you wouldn't be nearly as mad (at least I don't think so). People are more willing to pay for good experiences and certainly nobody wants to pay for a bad one. Just my guess though!
 
I had my upper scope done without any sedation! Not even a spray in my throat! :shifty:

But then again... that's quite normal in the Netherlands. You really have to ask for any kind of sedation and they don't give in easily.
 
I have to totally disagree my best experience I ever had was with an anaesthetist monitoring and using propofol and fentanyl for sedation. I was 100% comfortable and very quick recovery. Midazolam never seems to do the trick 100% for me but that was particularly badly managed during the week. I know the dose they gave me was not particularly high, in dentistry we give 10mg or thereabouts and I have given more in the past. I had 7mg for that long and difficult procedure where I was quite clearly distressed. Some people prefer even doing things without sedation but if it makes you more compliant it's less dangerous not a problem. I didn't have enough and am paying the price in my discomfort now, the pain is pretty epic.

I totally agree that when you pay, you get better service, better sedation. I paid £2500 for that procedure and would do it again to be comfortable. If you have a good experience you are more likely to go back to the doctor, to the hospital etc. This promotes good service.

Ellazmeanie I have private health insurance which is covering me for any cancer related tests and consultations but the doctors seem to prefer conducting these tests in the NHS. My surgeon asked the surgeon who was meant to be doing the test and didn't where he wanted to do it and he said NHS.

There is such a stark difference in private and NHS care, it's crazy. Folk are scared of privatisation but I think a bit of healthy competition would do the NHS some good. Not necessarily by privatisation but if they could introduce competition then things might improve, there's too much complacency at the moment and no accountability and a culture of defensiveness.

Everything has moved very quickly for me until I am required to go into the NHS. If I had been in the NHS from the start they would never have found the mass though.
 
I've never had any problems with the nhs and appreciate that up until now we have such a service in the uk,i hope it survives for a long time to come a long with the benefits i and many other long term ill and disabled people rely on.I'm not sure about the colonostomy but for past gastroscopes and sigmoids i have never had or needed sedation just the numbing spray and was actually told i coped pretty well think the thing is once the scope is passed your throat and in the abdomen you need to clench gut a little to cope with the gagging and try to stay relaxed as much as possible.
 
(little bit of copy/paste from my My Story introduction ... with additions. hope nobody minds. i'm lazy. but that doesn't make me a bad person.)

:soledance:

mmMMMmmmm.... Strawberries. I'm with Kaylee on this.

Hi all!! *waves semi-frantically*

So anyhoos, I'd like to tell you guys my story. HOWEVER, due to the fact that I am very social (from birth, it's just innate), I have ADHD (so they say), AND I'm bipolar and in a manic phase... yeah, my posts are along the lines of The Illiad. (that's a bit over exaggerated but I'm also a drama queen. but i'm sure that was a big surprise too) I tend to get a lot of these "TL : DR" crap responses from people on other forums and YouTube (den of entropy), if I get a reply at all. (TL : DR is a blunt person's way of saying Too Long, Didn't Read for those who didn't know. I usually have to look stuff like that up myself. Like YOLO. I always have to look that one up too! Can never remember these things. *sigh* I'm getting old.)

So, I give you guys the option of me telling my story cuz some forums don't mind long stories. Some of them do, though, and they just will not reply. I'm not going to write it all out if nobody's going to reply. But from what I've read so far around here, you guys seem to be a very empathic and supportive bunch of cherry blossoms. That's a HUGE plus with me, since I'm an empath. =)

Anyway, I leave it to you. I'm going to enjoy my good mood while it lasts. Yesterday was absolutely horrific, mood-wise. Gonna go play Rayman Legends since it's Saturday and my phone won't be ringing off the hook with calls from doctor's offices. Yay!!

Quick question... what's the law on expletives? I mean I'm not firing off words all the time, but once in a while, being able to say a word in frustration (not a litany of words... -One- word, here and there, like the "sh" word).... or a mild word just as a descriptor (like the D or H word they even use on TV without a thought)... is nice. But I'm capable of speaking either way. I just prefer having the option but either way is cool! So wanted to know the rules.

Nice to meet everyone! =)

-- Holly (aka: Anjalena or Anja for short (replace the J with a Y and pronounce the word, that's how it sounds... like Anyalena or Anya), also aka: Slurpy, and "OMG here she comes. HIDE!!!" *giggle*)

More :strawberry:
 
Here is my story, with some updates...

I've been suffering from GI issues since I was a teen. I've been told I have IBS and have had a history of upper GI issues in my stomach. In 2007, I underwent an upper endoscopy and they found several ulcers and scaring in my stomach. That developed into an infection. I was given antibiotics and told to take an antacid.

About two and a half years ago, I drove myself to the emergency room, because I had severe abdominal pain. This was below my stomach and didn't feel like the same stomach pain I had experienced before. They were unable to make a definitive diagnosis and sent me home with pain medication.

About 2 years ago, I started long distance running. I would occasionally get the "runners trots" from running long distances. However, I would go to the bathroom and be fine after that.

About a month and a half ago, my "runners trots" went out of control. I was unable to stop having bowel movements and it turned into severe diarrhea. I took a few days off and tried running again. But I had no luck.

I read online, stories about "runners colitis." This seemed similar to what I was experiencing, but the problem continued. I stopped running completely and the diarrhea and several abdominal pain continued. I had bloody stool, which scared me. I went to the emergency room. They performed a CT scan and found signs of inflammation in my colon. The radiologist said he believed it was "some type of colitis." However, no definitive diagnosis was made and I was told it could be either bacteria or a virus. I was told to follow up later with my primary care physician.

About two weeks later, I made an appt. to see my primary care doctor, because the abdominal pain had continued and intensified. I continued to have diarrhea and would also experience bloating. I started to develop severe night sweats and would wake up several times a night, drenched in sweat.

My primary care doctor evaluated me and recommended doing blood work and a stool sample. I provided both a stool sample and blood. No infections were found in my blood or stool. However, my liver enzymes were highly elevated. I was told this usually means fatty liver. However, my liver was normal on my CT scan. I was referred to a GI specialist the following day.

The GI specialist told me he suspected either UC or Crohn's. I had a colonoscopy the following week. I was told my colonoscopy was normal, but they found a large area of clumping/bumpy tissue near my terminal ileum. The doctor told me it was probably nothing to be worried about and that he had seen it before. Biopsies were sent to pathology.

I received a phone call two days ago from my GI specialist's medical assistant. She told me they received the pathology report back. She said the doctor suspected it was either a bacterial infection or Crohn's disease. But again, no diagnosis was made. He gave me antibiotics to try and they offered no additional information on where I go from here.

I continue to have abdominal pain, loose or water stools, discomfort, night sweats, irritated eyes, and joint pain.

I reviewed my pathology report...here is what it said...

1. Terminal ileum, nodular mucosa, biopsy:
Small bowel mucosa with chronic architectural distortion,
including villous blunting, active inflammation with healing
ulcers, and prominent lymphoid infiltrates, favor reactive (see
comment).
Immunohistochemical stain for CMV is negative for viral
inclusions.
No granuloma or dysplasia identified.

2. Colon, entire, biopsy:
Focal active colitis (see comment).
No granuloma, chronic architectural distortion, or dysplasia
identified.

Comment: No fungal organisms are identified on GMS stain (slide 1A7),
performed with appropriate positive control. Differential diagnosis of
chronic active enteritis and focal active colitis includes infectious
colitis, medication-associated mucosal injury, and evolving
inflammatory bowel disease. Clinical-pathologic correlation is
recommended.

The worst part of my illness is having to go to work. I am a law enforcement officer and can't always be near a bathroom. It makes it really difficult to perform my job duties. I've had to call in sick several times, when things are really bad.

December 2014 Update
I was put on Flagyl for two weeks with no improvements. The doctor wanted to rule out an infection, even though all my tests came back negative for an infection. He then put me on Apriso. Well, that only made my symptoms worse.

I went back for a follow up and met with his Nurse Practitioner, who seemed to have no knowledge of my case and told she didn't believe it was an IBD, even though she has never seen me before and reviewed my case. I asked if she could perform additional tests and she told me to just take the Apriso and come back in a month if I wasn't better.

About a day later, I received a call from the doctor who said "it could be an IBD after all." He put me on 40 MG of Prednisone for two weeks, then taper off doses after that.

I called my primary care doctor, asking for a referral to a different clinic and doctor. I have not been satisfied with the care they have provided. They've essentially just thrown different medications at me, hoping they'll help, but they don't give me any answers.

So far, I've counted 8 different medications I've been given that are on my counter. Some like Lomotil or Bentyl offer temporary relief, but don't solve the problem. Also, I can't take those at work, because they impair me. So, that basically offers me no help in my day to day life, unless I was at home laying in bed.

I've been on the Prednisone for 8 days now with no changes. I of course get all the nasty side effects that come with it. Moon face, hot flashes, muscle pain, water retention, etc. I figured after about 3-5 days I would have some relief, but so far it hasn't helped.

I've had really bad diarrhea the last week, to the point it is causing me to get severe hemorrhoids and bleeding. Also, dehydration as well. I spend most of my nights at work in the bathroom, because I can't be more than a few feet away from a toilet. If I get sent on a call, I have to hurry up and get back ASAP. I would call in sick, but then I feel guilty, because we are short staffed and others have to come in and work for me on their days off.

I've had about as much as I can take. This entire illness has made me depressed, irritable, and almost hopeless. I haven't been diagnosed, but I keep getting told "it might be Crohns." If I had some answers and a proper treatment plan, then maybe that'd give me some hope for a healthier and happier future. But all I've been told is to just keep taking pills and coming back in for follow up appointments.

I called the new GI doctor I was referred to and asked when I could get an appt. They said "the doctor usually reviews your case before they schedule an appt for you." Well, that was 12 days ago. I haven't heard anything since.

Has anyone else had to battle with doctors to get answers? Anyone else experiencing a similar situation? Any support, advice, or just lending an ear would help. Thank you! Merry Christmas and Happy Holidays!
 
Hi cwt. Yep. Sounds so familiar. I'm so sick of fighting doctors and trying to get them off their asses to do anything! It's not the same for them. They get to go home at night and live a normal life, free of chronic severe pain... probably go out to eat or enjoy a meal with the family and a good night's sleep. What does it matter to them how long they take getting back to you. It's so frustrating. I am in CONSTANT pain! I am having severe dizziness and attacks of weakness to the point that whatever I'm doing, I have to stop and call my son out of his room to help me back to my bed because I can't get there on my own. I've nearly passed out a couple of times myself. My entire stomach has blown up. I'm having pain through my smaller intestine region, but also in my flanks along my large intestine area... most of the time on the left but sometimes on the right. And it's along the sides toward the back but sometimes the pain is actually in the back. It's in the area near the kidneys but I don't have any urinary or kidney or pancreatic symptoms and all that's been checked anyway. So the only thing that makes sense to me is my large intestine/colon on each side. And if I go a few days without eating anything, I don't get any flank pain at all.

OH, and the fun little addition is that I'm also having constant GYN pain too. Constant cramping like as if I'm on my period and having cramps all the time, and periodic very sharp stabbing pains along the sides in my pelvic region. But usually my G.I. pain is so severe that it just drowns that pain out completely. Not really anything we can do about the GYN stuff right now though. The G.I. stuff takes precedence right now.

But it took me a month and a half to get my primary care doctor and my G.I. doc to frickin order a test at all! I've finally got my endoscopy/colonoscopy ordered for the 24th... next Wed. I'm just hoping beyond hope that mine actually shows what's wrong. But from the things I've read on here, a lot of times they don't. Oh and forget anything for pain! Holy crap. Yeah, my G.I. doc wouldn't give me anything. The best my primary doc would give me is Bentyl which, like you said, helps a slightly with the pain... just knocks the edge off really... but it doesn't fix anything and it isn't really that effective as a pain killer. I'm still in constant pain it's just not as extreme as it was without the Bentyl.

Some of my symptoms are different than many of the guys with Crohn's. Like I switch back and forth between diarrhea and constipation. And the only time I bleed when I go to the bathroom is when I have a constipated BM and it rips me open. Gotta love anal fissures. OUCH! And sometimes they'll bleed for days even if I just go to the toilet to pee, I'll drip blood in the toilet. I've had it bleed so severely that the inside of the toilet bowl looked like something that would fit into the movie Carrie or The Shining!

And I've been getting fissures and getting BMs that are too big or too hard and cut me open for over 10 yrs now. That's why my G.I. doc had planned to do a colonoscopy on me in the first place. He had decided this at our appt on Oct 21 and we'd planned for some time in Dec tentatively. Then on Oct 22, my stomach blew up.

Anyway, what kills me is knowing that until they can diagnose me, then I go untreated, which means I will continue to suffer. And unless I keep beating them over the head, they will continue to sit back and do nothing.

I hope both of us have some better luck. Keep advocating for yourself. It's the only way we're going to get anything done. I know about the depression too. I've had some days that I just melted down. But I allow myself those days and I allow myself the dark thoughts so long as they remain as thoughts only and I know that they are just emotions, just how I'm feeling and they're never going to become more than that. And then the next day, I pick myself up and move forward again. I'll be DAMNED if I let these doctors decide my fate or decide who I am or ruin me in any way! As much as it doesn't seem like it sometimes, we're stronger than this thing. =)

I'm a weirdo with weird beliefs but I believe that we're all connected on this earth... everything and everyone. That means that all of us are connected so we can share our strength with each other. And we do that through this forum. So when you need some, you come here and we'll give what we can. I offer some of mine freely. I hope it helps! *hugs*
 
Hi and welcome to the new members!

CWT, it sure sounds to me like you've got something inflammatory and I'm surprised they weren't able to diagnose you even after seeing abnormalities in your terminal ileum (the TI is the spot where Crohn's most frequently manifests). I would recommend you get a second opinion if this doctor continues to say they don't know what you've got. Has the prednisone had any effect yet? Sometimes it does take a little while to kick in, although it's usually pretty quick to start working. It usually works on inflammatory conditions although there are a few cases where people seem to have an inflammatory illness but pred doesn't work for whatever reason. I'm tagging StarGirrrrl here as I seem to recall that she had that experience, she almost certainly has something inflammatory but pred made her worse if anything.

Anjalena, good luck on your scopes next week! I hope they get you some answers. Most of us on here have had scopes so we're familiar with the prep and everything, so feel free to ask us any questions you may have. (Long story short, prep is the worst part.) It sounds like you're doing all the right things, advocating strongly for yourself and fighting your doctors when you know you need more tests - I've done the same thing and I'm sure my doc thinks I'm a pain in the butt but I don't care what he thinks. The important thing is that I get the medications, tests, and medical attention that I feel I need. Good for you for doing the same! Keep us posted on how your scopes go - and oh goodness, you're having scopes done on xmas eve? I hope you get good results and some answers so that you can have truly happy holidays!

Hi Melibean, how have you been? Hope you're doing okay?
 
Thanks everyone for your responses. I appreciate reading other stories and knowing that I'm not alone in this battle. The doctor I asked to be referred to declined to see me. I don't know if they are friends or colleagues of my current GI doc, but it seems like they don't want to step on his toes.

I emailed my primary care and begged and pleaded for her to help me, since I am getting nowhere. So far, all I've gotten is "I'll see what I can do."
 
Melibean said:
I'm doing okay thank you. How have you've been?
Click to expand...

It's been a rollercoaster for me lately, good days and bad days. I'm feeling really yucky today. I've had a few bouts of gastritis lately and that's been the opposite of fun. Currently dealing with a flare of gastritis right now - I'm so nauseous, but I can't take the day off from work (all my PTO for the remainder of the year has already been allocated, and I can't afford to take an unpaid day off) so I just have to deal with it and try not to barf at my desk. It's particularly bad today because I am supposed to go out for a holiday luncheon with my department at work, and they were so nice about it and even let me pick the restaurant that we're going to because they know about my tummy issues. Now I don't think I'll even be able to go with them (I doubt I can eat and even the smell/sight of food might be too much for me to handle) so I feel like a let-down in addition to feeling physically awful. And today was the only day that works for everyone in my dept so it's not like we can just go to lunch tomorrow instead or whatever. Ugh. It's one thing to have a bad tummy, but it's another to end up feeling like a bad friend/colleague because of your bad tummy, you know? So I'm basically sitting at my desk trying not to barf and trying not to cry. I hope your day is going much better than mine is!
 
Ah yes cwt I totally failed at Pred. I had a 39 day course with no relief in my symptoms. In fact, my blood tests after the Pred showed higher levels of inflammation than before I started. Had everyone scratching their heads.

Of course I got a healthy dose of side effects!

I don't come across many people whose inflammation doesn't respond to steroids we are a rare bunch :( I had heard it was something of a wonder drug was very disappointed it didn't work for me.

However my symptoms have evolved since then- emergency admission for severe anaemia in June (never low before) which has improved with intense long term treatment but alongside that low B12 (also new) got lower so now on treatment for that too.

Weirdly during that episode I got a couple of normal CRP readings whereas it's usually raised and a couple raised ESR which has always been normal.

:shifty-t:

And just for a fun steroid shots into my affected joints had mixed results; left arm which is the worst one wasn't helped but right hip which is fairly mild was.

I do wonder sometimes if Pred would work now but not keen to try!
 
Anjalena - try keeping a good diary if you find that your symptoms are better if you dont eat - include every little detail as there are some unexpected foods that can cause problems - even if you dont find anything to help, it will be useful to show to your GI in the future - hope your scope went well. Also, get your GYN issues seen too - they can mimic other issues and if there is something GYN going on you dont want to ignore it - and getting it sorted will at least make that bit feel better - I know its tough and you end up prioritising symptoms.

CWT - sorry to hear you are having a tough time - hope you get some answers soon - I know its a pain but keep at them and don't take no for an answer.

Cat - hope your gastritis settled and you are managing to enjoy the festive period

Hope everyone is well and happy festivities x
 
My health also regressed when on predisone and also remicade. So they do not know what to do with me. However, it has been found those medications made me worse as they would allow infection to set in, every time. Last time it took over 6 months to diagnose the infection. I felt I was dying.
So sick and tired of being sick and tired
 
Must say without all the medication I was on not so long ago I don't feel half as dizzy n unsteady as I did before still feel rotten sick all the time guts and all not even gonna take the sedation at my colostomy appointment and not sure yet I'm gonna go with the pain meds either, have a high tolerance to pain after years of suffering from cluster headaches will see how things go next week gastro and colostomy appointments finally only a week away.
 
Got pre op medication and list doesn't seem so bad up until the day before which even after the light breakfast before 9am the drinks don't look so bad, opted out of sedation and the pain medication.
 
Hi all, this is my story.... It started back in 2011 when i was first admitted to hospital with agonising abdominal pains. I have a long history of kidney stones, but this was nothing like the renal colic pain i get from that so they ran the usual tests, bloods, ct scans, x-rays etc and found that a portion of my bowel was enlarged with inflammation.

They attempted a colonoscopy, twice under sedation, but both times, I was in agony and they could not get to the area highlighted on the scan/x-ray as my bowel was twisted. I refused a third attempt. I was in hospital for 3 weeks and came out much the same as i went in, with the advice from the Consultant, that if the pain happened again to return to A & E.

During the next 3 years, I had numerous surgeries for my kidney stones including a reconstruction of my ureter and re-implantation into my bladder as it had completely closed up due to damage done by stones and the surgery to remove it (laser) and I had a nephrostomy in situ for 9 months.

During the next few years, I had "flare-ups", but managed this at home as I did not want another stay in hospital as before, and at each appointment with my GI, I did not tell him the full story as to what had been happening.

Roll forward to September this year and I had gone from having regular BM's with episodes of diarrhoea, spasms, fevers etc to going once a week and only if i used laxatives. I also had noticed bloody/slimy stools. Finally after 2 days of excruciating pain, and huge amounts of bright red blood in the loo, I gave in and returned to A & E. I was admitted to a surgical ward and spent a week in hospital. I was severely impacted and was given enemas which cleared me out good and proper, but did not get rid of the pain, in fact it made it worse every time I had a BM, going 25 times in the first day and then 20+ for the following 2 days.

Two weeks previous to this, I had a MRI scan and a Renogram to check on my kidney functions and they both reported thickening of the bowel and advised that I be seen by a GI for follow-up treatment and further investigations. My GI Consultant came to see me on the ward and wrote in my notes that he wanted the surgeons to carry out a laparotomy and also another colonoscopy under GA as he suspected it was UC. The surgeons refused to do either.

In the past I have undergone numerous abdominal surgeries, including a C-Section, total hysterectomy, gall bladder removed, and as I said before, numerous surgeries due to kidney stones. I was sent home with a follow-up appointment for 6 weeks later.

At my appointment, the surgeon advised that I was suffering from chronic nerve pain caused by adhesions due to all the abdominal surgery I have had.

The surgeon explained that after reading through all my notes and history, she thinks that there are 2 ongoing problems. The first is that she is going to speak to my GI to ask him to redo the colonoscopy, but will have to be done by someone with a lot of experience and under general anaesthetic as due to the bowel issues and the swelling in the colon it is pointing to UC. Also, the other issue is due to all the previous surgeries and the adhesions inside, which is causing chronic pain from the nerves. For this she is referring me to the chronic pain team. She explained about why surgery is not an option in her opinion as she said that due to all the previous surgeries, and that there will be so much stuck together, once they start unpicking it they have to carry on and basically I could die on the table as others have during such surgeries.

For the last 3 months, apart from hospital appointments, I haven't been out the house.

I then had another appointment with my GI and he said that if i do have the colonoscopy under GA, there is a strong possibility that my bowel would be damaged as they rely on patients indication of pain when the bowel is stretched too much, whereas, under GA they dont have that warning and damage to the bowel is more likely....... i was given 2 weeks to decide what to do. He commenced me on a new medication (pregabalin) for the nerve pain caused by the adhesion's as this is causing more problems for me than the diarrhoea/constipation at present. He did more blood tests too, so yet again it was wait and see.

The following day, the consultant himself rang me to say he had discussed it with another surgeon and said they could do it on the 29th December as he would be in the room next to the theatre that day so he would come in and do the procedure himself. I agreed to this.

I went in on Monday and had the colonoscopy done under heavy sedation, as I also suffer from sleep apnoea, and they will only give GA on patients with this condition as long as they have a HDU bed for me to go into afterwards, which of course they didnt have any. I am glad to say that I did not feel anything, and apart from being told they took numerous biopsies, I have no further info on what, if anything, they found.

I have a follow-up appointment on 16th Feb, but can ring in 2 weeks for the results. Since the colonoscopy on Monday I have still been very constipated, with no BM's so far.

My other symptoms are frequent mouth ulcers, weight loss of 22lb in 6 weeks, no appetite, only managing to eat soup or toast, night fevers, and joint pains in my hips, knees and back (never had any issues with joints before). I am so fed up, and just want to be pain free and get my life back as apart from hospital appointments, I haven't left the house in 3 months... Thanks for listening x
 
Last edited by a moderator:
Lolli I hope you don't mind but I have broken your post into paragraphs so it is easier to read :)

Goodness you have been through so much and I hope you get some answers out of these latest test results

:ghug:
 
Hello Lolli, again, welcome to the Crohn's Forum.
I'm not a doctor, but I do have 9 years of past experience in a clinic for Stomach and Intestinal disorders, and the patients were mainly Crohn's and Colitis.

I wanted to address the previous surgeries and the bowel thickening. Both loose bowels and thickening of bowel walls can cause the weight loss, and the loss of nutrition.

I would recommend you see a nutritionist if that is at all possible. Bone broth and many of the nutritional supplements that are in liquid or powdered form will help maintain your health and your weight. Exercise is important, but not to the point of straining the whole system so that it has to repair itself, more for the purpose of circulation.

I think your doctors are correct in looking for bacteria that is causing the issues. Even if you have any form of bowel disease, an invasion of bacteria that doesn't belong becomes very common and is very difficult to beat.

Scar tissue from previous operations is a very serious problem, with intense pain and fever. It usually becomes brittle and is similar to having broken glass in your abdomen. It can also cause damage and thickening of the tissues, like any scar.

The major problem I see, is that if it continues unchecked, the scar tissue and damage increases. This increases the chances that you will carry more damage forward that could have been prevented.

So I can only advise that you head to a hospital where they specialize in intestinal issues, and let them try and get you back on track.

From my own experience, a long dose of intravenous antibiotics, multiple surgeries, and plenty of maintenance medications... and it still took 10 years before I felt better. There is a good possibility that I contracted some of the bacteria while working in the clinic. I don't think modern medicine has them all accounted for, or knows how to treat them all.

What usually triggers the whole problem is another illness that weakens the body's defenses, so that they can then multiply out of control. If you have Crohn's or Colitis, or many of the other diseases, then bacteria will be a constant menace.

In addition, many doctors over look the fungal infections, or how weak the immune system becomes. Some don't bother to know more than the special area they work in, so they also don't see the cross-connectivity or the cascade of events that can happen when something else is not functioning, such as kidney, liver, pancreas, gall bladder, et.

This is an orchestra of chemical activity, and any roadblock can then cause poisons to build up or tissues to become inflamed.

There are many protocols for bowel maintenance. My favorite is fasting. Clean and clear water from a good source for 2 to 3 days with light sauna or other sweating. Always followed by replacement of electrolytes. If you have medications that require food, then it wouldn't work. But I can usually stop my medicines for the few days, clear the system and let the poisons drain.

At other times, the best medicine is plenty of rest, try not to move around and irritate the system. Perhaps warm soaks in the tub, if you have one.

A heating pad is a wonderful friend. Ice packs also help. Sometimes you use one for 10 minutes, then the other.

Regrettably, morphine does nothing for me, but I hear from others that it is a wonderful pain medication. I use Tramadol sparingly, and rely more on detoxification and removing the pain source, such as inflammation or infection. Once that is under control, many things will calm down.

And, don't forget to check for sensitivity. Some foods will now bother everything or actually hurt, burning new sores in your mouth. The same applies to medicines and liquids of all kinds. One of my favorite techniques is to stick a little between the lip and gum in the front of my mouth and wait 10 minutes. Then spit it out. If that spot becomes sore, I know I better leave that alone.

Bacteria needs food to survive, sugar is one of the favorites. So when you go to the nutritionist, you may see that there are foods to avoid that would feed the bad bacteria.

If the bacteria are originating in your teeth, you may not even know it. Sometimes there is a slight taste or burning, sometimes it hurts if the tooth has issues close to the nerve. But many times people don't even know it's there. And it can be so impacted that there is no medicine that can reach it. The only way is to then have a dentist dig around and find any possible spots. Root canals are notorius issues. They are closed up, but bacteria is growing up near the root where it can bother the blood supply and sometimes it spreads and you only notice the bowel discomfort portion.

So, there is a lot to do. Hang in there. Talk to the doctors about possible antibacterial treatments. Sometimes the benefits outweight any possible other damage. And talk to them about antifungal medications.

Getting some of that crystal scar tissue out would certainly help, but it can also cause more.

All in all, most of us have researched the Internet and come up with more information than any doctor would tell us, and we usually end up knowing more about our bodies and our problems than any doctor. We become our own specialists. The doctors either love us or hate us.

Welcome to the group. I hope we can alleviate some of the problems with you and be a big help in your recovery. In any case, we are all here to support you.

Big hug, David
 
Thank you both StarGirrrl and David for your replies. It does make easier reading with it paragraphed, as I wrote it in the middle of the night and reads like I was rambling on lol.

Also, with regards to one of the points you raised David about the nutritionist. I didn't add that I am a vegetarian, and have been since birth in that I have never eaten meat, fish or any fowl. I saw a nutritionist following analysis of my kidney stones, which showed they were made from calcium oxylate. I was provided a list of foods to avoid, even though the majority of them I did not eat in the first place! The main item i related to consuming a lot of was diet coke, as the diet coke with lemon had just come out and I loved it so was drinking quite a bit of it, that is to say about 2 cans per day.

Most of my surgeries have been done following discovery of "stones" in the area affected. My total hysterectomy was carried out after finding that my pelvis area was full of calcified material. I also had my gall-bladder removed following gall stones and of course multiple issues with kidney stones. Even just last year, I developed a blockage, caused by a stone in my parotid gland (salivary duct) causing my face to swell up when I ate or drank. This also resulted in removal of said duct, and I have been left with a "dent" in the right side of my face and some numbness. I am awaiting further surgery in the near future to transplant fat cells into the affected area to fill in the dent.

Regarding removal of the adhesions / scar tissue that has built up following all the surgeries is not an option for me at the moment as they have told me I would probably "die on the table" due to damage to my internal organs whilst trying to unpick it all, and even if any surgeon agreed to attempt it, there is a 80-90% chance that it would re-occur following that surgery.

My current medications that I am on are:
Oxycodone - 60mg bd, plus the liquid one prn.
Pregabalin - currently 50mg bd, with the next step going to 3 times a day. Omeprazole - for duodenal ulcers following years of taking diclofenac / anti-inflammateries.
Ramipril for hypertension.
Buscopan - for spasms.
Sertraline - anti-depressant.

Thank you for taking the time to provide so much advice, support as I am in a "no idea what is going on anymore and just want the pain to stop" situation.

:rosette2: Lolli
 
I do believe you have hit on a very important note. All this calcium buildup, stones, etc.
I only had issues when the doctors asked me to take a calcium supplement for osteopenia. Almost within weeks of starting that I got numerous kidney stones. When I stopped, they stopped. I'm sure there is more to it than that, but it would be worth looking into.
 
No problem that is what admin staff are here for :)

Can I say to cwt and mjr while I am sad Pred the so called wonder drug doesn't work for you, I can't pretend i'm not glad to know I am not alone, it feels like it sometimes when I read so many success stories!
 
Lolli said:
Thank you both StarGirrrl and David for your replies. It does make easier reading with it paragraphed, as I wrote it in the middle of the night and reads like I was rambling on lol.

Also, with regards to one of the points you raised David about the nutritionist. I didn't add that I am a vegetarian, and have been since birth in that I have never eaten meat, fish or any fowl. I saw a nutritionist following analysis of my kidney stones, which showed they were made from calcium oxylate. I was provided a list of foods to avoid, even though the majority of them I did not eat in the first place! The main item i related to consuming a lot of was diet coke, as the diet coke with lemon had just come out and I loved it so was drinking quite a bit of it, that is to say about 2 cans per day.

Most of my surgeries have been done following discovery of "stones" in the area affected. My total hysterectomy was carried out after finding that my pelvis area was full of calcified material. I also had my gall-bladder removed following gall stones and of course multiple issues with kidney stones. Even just last year, I developed a blockage, caused by a stone in my parotid gland (salivary duct) causing my face to swell up when I ate or drank. This also resulted in removal of said duct, and I have been left with a "dent" in the right side of my face and some numbness. I am awaiting further surgery in the near future to transplant fat cells into the affected area to fill in the dent.

Regarding removal of the adhesions / scar tissue that has built up following all the surgeries is not an option for me at the moment as they have told me I would probably "die on the table" due to damage to my internal organs whilst trying to unpick it all, and even if any surgeon agreed to attempt it, there is a 80-90% chance that it would re-occur following that surgery.

My current medications that I am on are:
Oxycodone - 60mg bd, plus the liquid one prn.
Pregabalin - currently 50mg bd, with the next step going to 3 times a day. Omeprazole - for duodenal ulcers following years of taking diclofenac / anti-inflammateries.
Ramipril for hypertension.
Buscopan - for spasms.
Sertraline - anti-depressant.

Thank you for taking the time to provide so much advice, support as I am in a "no idea what is going on anymore and just want the pain to stop" situation.

:rosette2: Lolli
Click to expand...

http://drsircus.com/medicine/magnes...eatment-with-magnesium-and-sodium-thiosulfate
 
Very interesting reading David... I may have to look into this further as it does sound a lot like my experiences. Thank you so much for taking the time to post it for me :hug:
 
Ok odd as i never requested it but appreciated anyway have been reffered for a 24 hour ecg monitor also having a 24 hour bp monitor,along with the colostomy tomorrow i hope they will know what is going on at last.
 
Back from the colonscopy wasn't so bad at all endured it better then i expected was over with quite quick and soon after was allowed to go home,didn't find much diverticular disease which i knew i have a polyp which they snagged possibly hyperplastic i'm hyper trying to figure what that means ;) right and left sided biopsies to rule out microscopic colitis and chronic diarroeh biopsies still a mystery why i have the distention but i'm not a crohny ;)
 
I'm sorry to hear you're feeling low :(

Sadly a normal colonoscopy doesn't rule out Crohns, it (in fact both scopes) only peek into the end of the small bowel which is very very long. And CD can occur from mouth to anus i'm afraid to say.

I've seen other members here after a normal colonoscopy get a definitive diagnosis through scans and some through a capsule endoscopy ( the use of which is generally restricted in the UK).
 
So what are the next steps apart from the biopsy results,what tests should i press for next and now you mention it i'm sure i was supposed to be put forward for the more extensive test found out the ecg 24 hour monitor was actually meant to be a bp monitor so wouldn't be surprised if someone put me down for the wrong bowel screen.
 
Ffs 3 days since last heard from her n since just read text's trying to keep busy but more she staying silent more frustrated I feel hate this @#$/^& guts crap would've probably gone to South Africa soon after we met if it weren't for this gonna log out for a while need some sleep. :(
 
ellazmeanie said:
So what are the next steps apart from the biopsy results,what tests should i press for next and now you mention it i'm sure i was supposed to be put forward for the more extensive test found out the ecg 24 hour monitor was actually meant to be a bp monitor so wouldn't be surprised if someone put me down for the wrong bowel screen.
Click to expand...

Personally I'd ask for an MRE, CT scan and/or a pill cam (make sure you take the fake dummy pill first as you do have unexplained distention, don't want the real pill to get stuck if you do in fact have a stricture). If none of those show anything then I'd have a Double-balloon enteroscopy done (a scope of the entire small bowel with biopsies). Good luck!
 
Thank you Jenn i do feel like i'm getting somewhere a long process maybe,apart from the distention though i don't feel quite as shitty excuse the pun ;) and think by our chat Ella has been feeling the same stuff i have been feeling were good though :)
 
Just a word of caution, the pill cam is often on the restricted use list here in the UK and not many places perform a DBE, although some do exist and I imagine living in London there will somewhere near by.

When something is on restricted use a Dr can apply for funding or there will be a set of criteria, as an example my local Hospital will only give a Pill Cam if you are anaemic through a suspected small bowel bleed.

I was rejected for one in 2001 the irony is I am now anaemic and low B12! Seeing a GI elsewhere now anyway I need to ask about this at my next appointment.
 
Used to get melatonin for my clusters which was named paitent basis pill cams through gi gonna ask Thursday to be referred to a new one at the Hospital i had the colonoscopy at will print out all this and show to doctor not prepared to let them talk over me
 
I think by the talk i had with the doctor i'm seeing Thursday all those test's you mention are in the pipeline have to wait for the biopsy results from the colonoscopy before the next step,but they do seem to be listening to my concerns.I am off to church tomorrow never been think it maybe a good thing and help with me and Ella hope you are all good
 
StarGirrrrl said:
Just a word of caution, the pill cam is often on the restricted use list here in the UK and not many places perform a DBE, although some do exist and I imagine living in London there will somewhere near by.

When something is on restricted use a Dr can apply for funding or there will be a set of criteria, as an example my local Hospital will only give a Pill Cam if you are anaemic through a suspected small bowel bleed.

I was rejected for one in 2001 the irony is I am now anaemic and low B12! Seeing a GI elsewhere now anyway I need to ask about this at my next appointment.
Click to expand...

Ah that explains a lot lol (you'd think it the easiest option but budgets I guess), a lot of the London ones do I think, I know my granddad around a decade ago had it done at the royal in London (and quickly was diagnosed with diverticulitis) and I imagine St Mark's does as well, you'd think after a decade pillcam would be cheaper than having a combo, ct, barium, transit, colonscopy, endoscopy job.

I don't think my local hospital does pillcam at all (1hr away from london) they're pretty stingy when it comes to transit shapes and whatnot as it was
 
Hey, Cat and Melibean. It's been a really long time since I was here, and I don't know who else here is new or has joined since I've been around. I've moved back to Wisconsin and been messing with docs quite a bit. Still no diagnosis.
Lately things have been quite a bit worse. I have a new diagnosis with a new doc at the end of the month. The GI NP I just saw was probably the worst person I've seen so far.... after recommending an ultrasound of my gall bladder (which was negative), she told me to see a dietician if I wanted some help gaining weight, and to see a physical therapist for my 'abdominal wall pain'. This was in a letter she mailed to my house.
During the appointment when I gave her a list of foods I can eat (I'm down to about 20 now), she pretty much blew that list off and said that could be from IBS. She asked if my weight loss was intentional. I told her it wasn't. In the last year I've lost about 25 lbs. Now I'm down to a size 0 in American junior sizes, and my physical therapist says my joint pain is from my body burning the fat between my joints. I can't even exercise anymore because I can't eat back the calories from it. I'm pretty frustrated.
 
Cindy!!! :D I know we talk on facebook semi-regularly but it's still nice to see you on here. Oh goodness though, I didn't realize things were getting that bad for you with the weight and joint pain. That's awful, and what a stupid GI NP! I hope the new doc is much, much better. How are things for you otherwise? How's the head and the seizures been?
 
So far, so good with my head. No new seizures, just some headaches. I have my next scan in March, I'm hoping for continued good news with that. This next GI just has to listen to me.... my husband is going with me to make sure.
 
Ah. i'm getting anxious about what might happen at my next GI appointment, added to which, I still haven't got said appointment (supposed to be February), arrgh!

They've had one reminder I am still waiting time for another soon I think.
 
So I got a letter today, apparently I did have an appointment for February, but it has been cancelled, and put back until June :( Tried phoning and offered one for this Friday but didn't take it because need blood tests done beforehand so not enough time. Double :( :(

I've contacted the complaints service to see if they can help. Sometimes I feel so utterly defeated by the system I just want to give up. I don't have the energy for all this fighting when I am sick.

Added to which less than week after a 5 week ENT bug finally left I am coming down with something else.

:stinks:
 
June?!? How can they cancel your appointment for February and put you off until June? That makes zero sense. Unbelievable.

Next Thursday can't come fast enough for me, every day seems to drag. My poor belly hurts every time I eat and even in between. last night it was so bad I took some Vicoden just to get through it and sleep. There's so much nausea as well. I'm hoping this doctor takes me seriously and helps me figure out what is going on inside me.
 
That's the NHS for you, sometimes wonderful and sometimes damn annoying and more besides lol.

Anyway good news is I have now taken the slot for Friday and my June appointment is still booked. I would have preferred having blood tests beforehand to make sure the B12 treatment is working but it is certainly better than nothing. I suppose I can always go back to my GP and explain the planned check didn't happen so I need them to arrange some.
 
Oh man.

March - September 2014
Calprotectin +ve, bloods -ve, colonoscopy normal but couldn't get into the small bowel and biopsies minor abnormal, MRI minor abnormal.
Gastroenterologist told me it's IBS, so goodbye, but I should get another calprotectin just to make sure (it should be negative).

October 2014
Re-checked calprotectin - still positive.

January 2015
New gastroenterologists (because I moved home) reviewed the MRI and said this:
The MRI small bowel was sub-optimal and therefore could not be interpreted properly.
Click to expand...

I've just had a letter referring me to have a capsule endoscopy. Hopefully it'll show something even though I've had no symptoms for months...
 
StarlyteLass said:
Ah that explains a lot lol (you'd think it the easiest option but budgets I guess), a lot of the London ones do I think, I know my granddad around a decade ago had it done at the royal in London (and quickly was diagnosed with diverticulitis) and I imagine St Mark's does as well, you'd think after a decade pillcam would be cheaper than having a combo, ct, barium, transit, colonscopy, endoscopy job.

I don't think my local hospital does pillcam at all (1hr away from london) they're pretty stingy when it comes to transit shapes and whatnot as it was
Click to expand...

I've had no trouble getting pill cams on the NHS - my doctors keep trying to make me have them when I don't want them! I am diagnosed already, and I'm not in London.
 
Borg said:
January 2015
New gastroenterologists (because I moved home) reviewed the MRI and said this:

The MRI small bowel was sub-optimal and therefore could not be interpreted properly
Click to expand...

My small bowel MRI report said they had trouble getting clear pictures too - they'd written that it was because I don't have any fat on my stomach. I think they'd still notice if you had something major wrong though.
 
UnXmas said:
My small bowel MRI report said they had trouble getting clear pictures too - they'd written that it was because I don't have any fat on my stomach. I think they'd still notice if you had something major wrong though.
Click to expand...

They probably didn't get clear pictures because the drink stuff went straight through me. Unfortunately I couldn't hold it in, so it all ended up in the toilet before I went in for the MRI. Oops :p
 
Borg said:
They probably didn't get clear pictures because the drink stuff went straight through me. Unfortunately I couldn't hold it in, so it all ended up in the toilet before I went in for the MRI. Oops :p
Click to expand...

:lol: I only had to drink half because I've had so much intestine removed I didn't need it all (and that stuff tastes so terrible I'm not sure I would have drunk the full amount!). I also had to start drinking it nearer to the test start time to try and avoid the problem you had - the contrast is a laxative. I have a stoma, which I'm always so glad about because there's no running to the bathroom.... or at least there shouldn't be. But just as they were starting the test, the contrast began coming out. My bag filled up so fast, and I thought it was going to leak (or possibly even explode) all over the expensive MRI machine. But it held out. :p
 
My appointment went okay.

A bit annoyed because the GI clearly wasn't up to speed and started on about periods (I don't have them) and my normal blood count no need to come back...

Once I had confirmed I did indeed have issues with D along with mouth ulcers, joint pain, night time toilet visits and pain/cramps present when D has finished, he took things a little more seriously. Said more tests were needed on the small bowel to rule out CD. If all normal there are other causes of the B12/Iron deficiency that can be investigated although didn't say what.

He said they cannot visualise the whole small bowel via endoscopy when I know full well they do the Pill Cam there :mad2:

I am going to do a stool sample next week to look faecal calprotectin, To the best of my knowledge in 8 1/2 years I have not had this test. I have had 2-3 stool tests but I am fairly sure they were only looking for infections and bacteria, not inflammation. If that comes back raised he will order a small bowel MRI :( Not looking forward to that if it happens.

Plus, he wants a small bowel bacteria overgrowth test. I have had this before (without deficiencies) and the solution you have to drink acted like a laxative prep for me- told it is rare but not unheard of. Yet another :( It was not a good day, literally sat in a toilet until it was time to puff into the machine again, then ran back!

:thumbdown:

Had bloods done for folate, ferretin and B12 so will be able to check the replacement therapy is working. Been on tablets since late November I am told it should now be up to the normal range.

So pleased things are moving again and it looks like if CD is a dead end they will carry on trying. Not pleased with the tests involved! I know no one likes them but I have to do my appointments via public transport and takes around 40 mins each way at the various stages (bus, train, bus). Only 20 of those are covered by a toilet!
 
StarGirrrrl - My doctors wanted me to have a pill cam, but they also said they're unlikely to show anything that's not been found with endoscopy and small bowel MRI. So if you can't get a pill cam, it doesn't necessarily mean they've missed a diagnosis.

If you have the MRI with contrast, the contrast is a laxative. But as indicated in the posts my Borg and myself above, for some of us at least it passes through very fast, so you may be able to get it out in a hospital bathroom before you set off home.

But check with your hospital for transport options; they run free transport sometimes to people who qualify (it's based on income I think). And have a look online for volunteer hospital transport in your area too - there are a couple of people near me who drive people to hospitals and you only pay the petrol cost. Because they run the service specifically for hospital patients, they will understand about things like toilet stops. I used one when I had no one to take me to an appointment once and was too ill to get buses.
 

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