Negative tests; negative doctors

[Little Bear]

Hi Everyone,

I have just got back from my 2nd hospital stay via A&E and I need your help and wisdom!

What I have to date is:
Jan 2013 - inflamed stomach
April 2013 - passing blood
May 2013 - diarrohea starts
June 2013 - A&E/hospital stay through pain
~given Questran for diarrohea & antisickness etc~
July 2013 - Back into hospital via A&E diarrohea/pain/sickness

Tests & Results:
Jan 2013 - endoscopy (inflamed stomach) small bowel MRI: normal
April 2013 - Calprotectin - 158
May 2013 - Calprotectin - 220
May 2013 - Colonoscopy - normal
July 2013 - X-ray - distended colon
- Pill cam: awaiting results


After my first Calprotectin result in April, my GP referred me to a Gastro and the appointment came through for end of August (!) since then I've been rushed to hospital twice and am managing with the help of questran. I saw a consultant in hospital yesterday who put my calprotectin levels down to bacterial infection back in April (GP had checked this with a full panel and it was negative) and said my episode this week must've been a bug, despite me feeling absolutely fine other than dehydrated. I know it wasn't a bug or food poisoning, it was the pain that made me go to hospital (couldn't move) and it took 2.5 days of codeine and not eating to slow my gut back to its now-usual several times a day.

The junior Dr did get a preliminary report, stressing to me repeatedly it was just a quick glance and they needed the full report, of the pillcam and it said it looked OK. She kept stressing he literally just had a quick flick through in case there was anything glaringly obvious.
I had a SB MRI booked again from my 1st hospital stay and the jnr Dr said this can absolutely show something that it didn't last time as I now have abdo symptoms and might have missed a flare last time but the consultant said cancel it. The jnr Dr was pretty surprised but did as told.

I am making sure I am not under Dr. Dismissive (luckily got a connection in MRI bookings too) and being seen by the Dr from the 1st hospital visit (who is unfortunately on holiday), but am I crazy in thinking this consultant is writing me off without even looking into why I spend approximately 1.5 hrs of my day in the loo???

I've asked my GP to do my calprotectin again (the hospital are too, but I don't trust them to be organised enough to contact me) so if it's high or higher, which I expect as my symptoms are worse now and it's been some time since the last 2 tests, then isn't this a strong indicator there's inflammation not caused by bacteria (this is being screened too) that they're not finding??

I need a diagnosis. I've spent 14 days in hospital over the last month and a half. I don't want to have to sink to my knees in A&E every few weeks! (I'll tell you now, carry a bucket, sob, and sink to your knees and they'll usher you fairly quickly. Also, throw up and almost black out and they'll find you a bed)

Please help me guys - I need reassurance I'm right to keep fighting for this. Yesterday I was completely beaten - today I've been delivering poo to the drs and hospital like Santa with Alzheimers and calling everyone and anyone, but that Consultant has made me doubt myself. I'm at the stage where I don't care what it is, I will take anything: I can take anything. Just tell me what I'm fighting so I can arm myself.

I am contesting my insurance's claim it's pre-existing too so if the financial ombudsman rules in my favour I can go private and get this sorted asap, but that could take months so until then I have to ride the beast that is the NHS.

Personally, aside from work (which I LOVE), I am trying to train for the Commonwealths (that's the goal) in a few years time and this is seriously getting in the way. I can train through the hot sweats, passing blood, no worries. I can't train through diarrohea (ever lifted your body weight with an urgent need to go? ...me neither and I don't want to).

Love to you all - I read all the posts I can but I can't always comment back as I'm buying our first house training 6 days a week working full time and taking impromptu holidays with the NHD (National Health Disservice)

xxxxx Little Bear xxxxx

 

[Cat-a-Tonic]

Hi Little Bear, I'm so sorry to hear that you're being brushed off and treated poorly by your doctor. You don't deserve that - and you shouldn't doubt yourself either! It's not all in your head, you have a legitimate illness that is causing you real pain and symptoms. And you know it's not a bug nor a virus, this is serious and chronic and you know it. Don't let them try to convince you otherwise and don't let them be lazy! Make them work towards a diagnosis just as hard as you're working to get your health back! If your doctor isn't taking you seriously, it's time to get a new doctor - I hope you can find a good one, quickly.

I know you're an incredibly strong woman - I lift weights too, but just for fun/fitness and I'm nowhere near the level you're at. And I know that lifting weights makes me stronger not just physically, but mentally & emotionally too- and I'm sure the same is true for you. Being able to push myself to keep going through more reps, or to add more weight, or just to keep going even when I'm not feeling well, has shown me that I can handle just about anything. I feel like a warrior when I'm in the gym and I try to continue being in that warrior mindset when I'm outside of the gym. And you're a warrior too, Bear. You have tremendous strength, not just in muscles but inner strength too, so stand up for yourself and tell your doctors what you want from them (more tests, medication trials, to be taken seriously, to get some answers, to get other doctors to look at your case, etc). I know you can do it, so just keep on fighting!

I hope that helped a little bit. Good luck with the private insurance stuff - I'm going to tag BozzyLozzy here as she may be able to help with that more than I can. Best of luck with the new house too! That's exciting, but also stressful, so I hope you can get over the stressful parts quickly and get to the more fun stuff like painting and hanging curtains.

Oh, and as for the diarrhea while training - maybe ask that Junior doctor about Lomotil. It's like prescription-strength Imodium. When I'm flaring, one Lomotil usually stops the d for about a full day. It's not something that should be taken all the time or you risk things like permanently slowing your intestinal motility, and in rare cases, toxic megacolon - but it's okay to take as needed every so often. It might help you get to the gym on a day when you otherwise wouldn't be able to. Just a thought for you. Hang in there, hun! Hopefully answers and relief are on the way soon.

 

[Little Bear]

hi cat-a-tonic
Thank you for taking the time to write all that support to me! I feel so much better for your support and I know EXACTLY what you mean about the strength inside from the outside too I feel like a warrior so strong after training
Ill definitely ask about that although Imodium from a well-meaning GP put me in hospital the first time hehe (5 days on it) I'm sure one offs when my gut goes into hyperdrive might be more sensible than double dose codeine
I am going very strict paleo tomorrow after a spoonful of Nutella today has made me feel so sick and swollen I can't eat dinner end of normality start of even more strict living. Anything to feel normal for a while
I don't even know if it is crohns I don't know what else it could be and I don't care what it is I just want to know - I know we're all in the same frustrating boat here xxxx

 

[Niks]

It is just so frustrating for no one to take you seriously or do something to help.

I really hope you get somewhere fast. Keep fighting!!

(((HUGS))) xx

 

[Little Bear]

Thanks Niks it really is

 

[Cat-a-Tonic]

I know, Bear, I just want a name for my illness too so that I can better fight it. Throwing stuff like Imodium at the problem feels like throwing rocks at a dragon, when what I really need is a bazooka. I hope those pill cam results come back soon - is there any chance you can request a disc with all the images on it? I had asked for that when I had my pill cam but they never gave me any of the images, they just told me everything was normal and that was that. If you get the images, it might be easier to have another doctor take a look at them and give you another opinion.

Niks, how is your daughter doing lately? Is she any closer to a diagnosis?

 

[bozzylozzy]

Hi Little Bear

Sorry to hear you've been having a rough time... I have only just seen that I was tagged into this thread.. and because its late and im in bed haha.. I will PM you tomorrow evening if that's ok?

Xx

 

[Little Bear]

Bozzy that'd be fantastic but no worries if you're busy

Catatonic I doubt it we are talking NHS. they've already said 4 weeks to get a report. The video is only 4 hrs long (cut out before it left small intestine. It may well still be there!)

They could send it to me ill do it. I have two post grads I think they needn't talk to me like I'm a intellectual inferior. Which they do.

 

[Chickadee]

Did I miss this in your post, or have the doctors not done a colonoscopy yet? I also take Questran, and it's helped slow things down considerably. However, it's more of a symptomatic relief effort, as opposed to finding and fixing whatever is going wrong with us.

 

[Chickadee]

Oh, I just saw that they did do a colonoscopy. Hmm...all of my tests have been mostly normal too, but your elevated calprotectin levels seem like a red flag.

 

[Little Bear]

Yeah I agree Chickadee - that's why I've asked them to repeat them because I think they'll be higher still and hopefully that'll prompt them to look again :S

 

[valleysangel92]

Hey Bear, im sorry your getting such a hard time, dissmisive doctors can be so irritating and can really make us doubt ourselves. For a while I was just told to "take pills and itll go" and even told it was in my head. Unfortunatly its something a lot of us have to hear on the way to diagnosis, you arent alone, everyone is here for you and you should never stop fighting!

I know its hard under the NHS, waiting times are horrid and some of the doctors are too busy or disinterested to take much time looking at the facts. There is light though. There are some amazing doctors and nurses out there that will listen and will fight for you. If you arent happy with your doctor you can request a second opinion and i would definitly ask for a repeat of some of those tests.

It may be worse finding out if you can contact an IBD nurse at your local hospital, some dont allow it until diagnosis but some are more open. When i had to wait a long time my gp called my IBD nurse and she got me an appointment within the week. They can also give advice on symptom management and diet.

Keep your head up. You know your own body so dont let the doctors dismiss you and act like its nothing. Keep fighting .

 

[Little Bear]

Thanks valleysangel it's lovely to hear from someone on the other side of diagnosis not just for me but for everyone I expect I'm waiting to hear if the questran interferes with the IUS because if it does I need a hasty trip to get the morning after pill!!! Why doesn't anyone talk to you about your medications!!

 

[valleysangel92]

Oh dear *hugs* it amazes me how little information some doctors will give .. They assume we'll figure it out for ourselves .. I really hope you get an answer soon. If you dont hear back then you may find some information on the nhs choices website or the local pharmacy should be able to tell you if there are any interactions. Hope this helps a little. Hang on in there x

 

[Little Bear]

My consultant was amazing! He wrote me a letter which his secretary emailed me, within 2 hours of me emailing her to ask. It's all fine and he's very happy to take me under his care until he has diagnosed me and sorted out the problem. It's all looking positive, and he seems to have a great attitude! So all I have to do now is stay out of hospital for the next 5 weeks until my appointment... wish me luck

 

[valleysangel92]

Yay! Im so glad you have someone willing to take you on and get you diagnosed its amazing how much difference a new doctor can make . Hopefully it wont be long before you get some answers and they find a way to help you . Keep us posted.

 

[Little Bear]

Hey all,
A little update - the calprotectin came back as 43 and the pill cam was normal although it only recorded halfway of my small bowel. The new gastro said IBS and asked if I'd tried FODMAP (I've been told FODMAP for yrs when I had IBS actual symptoms and already don't eat fruit or trouble veg) and cognitive behavioural therapy - which I took to mean that they don't know what causes me to poo myself 2 mins from my house, but they can help me be ok with it. We had a few arguments and he agreed to repeat the pill cam to see the rest and I'm currently having a SEHscan to check for bile malabsorption.

I'm worried the calprotectin was low because I hadn't eaten in 2 days to stop the big D, and I know I had nothing in me because the last few times I went I was passing clear water and I'd taken codeine for those 2 days then they asked for a stool sample (classic NHS) so I ate then went 3 times 8 hours later (in the morning) and they tested that - is that long enough in the gut to absorb calprotectin?

And I have cut out sugar (a major inflammation causing/assisting element) and take a lot of omega 3 etc to reduce/eliminate inflammation. Maybe I've shot myself in the foot. I can go anywhere between 3-23 times a day. Generally it's 8 now. I used to be so normal. Now I get sweats night and day (intermittently) and the pain has hospitalised me twice. Maybe I need to re-read up on IBS but I'm not convinced.

Yesterday i walked my dog for an hour and just cried my eyes out. Some days you just feel so beaten. Today I'm going to my GP to talk.

 

[Little Bear]

PS still trained after the appointment and got a few PB's - no sense in giving up on everything

 

[Cat-a-Tonic]

You don't get night sweats with IBS - night sweats can be an indicator of infection or inflammation, but it's definitely not something that happens with IBS. IBS doesn't cause pain to the point of needing hospitalization either. I don't know a lot about calprotectin so I can't answer your questions about that. I'm glad you're having a few more tests, although your GI sounds like a dead end of they're already saying IBS. As exhausting as it is, you may want to consider switching GIs again to get another opinion. Do not accept an IBS diagnosis, because it sounds to me like there is clearly more than "just IBS" going on!

If you do test positive for bile malabsorption (or even if you don't), you may want to give psyllium husks a try. I don't have bile malabsorption, but psyllium has helped me with reducing the frequency of my bowel movements. Even when I was in remission, I was still going 4 to 10+ times per day. After I started taking psyllium, that went down to more like 2 to 4 times per day. I've read that psyllium can help with bile malabsorption too which is why I mention it, but regardless it may also help reduce how often you're going. Just a thought for you.

I'm glad to hear you're still training. I'm in a mild flare myself and I nearly puked at the gym 2 days ago... but I'm going back to the gym today. Working out is the one thing that makes me feel like a healthy normal human and I am *not* going to give that up! I'm so glad to hear you're not giving up either! Keep fighting!

 

[Little Bear]

Hey Cat-a-tonic I hope you're well today?
thanks for the advice with the psyllium husks - something to look into
I'm trying to look at my problems from the perspective of IBS but I am struggling, although I'm not so certain its crohns anymore. I've asked my GP for a repeat calprotectin and I may or may not have a SB MRI tomorrow (did the hospital gastro cancel it?) and my gastro has agreed to repeat the pillcam and run SB bacterial overgrowth tests. I eat once a day and even that is a pain, twice and I'm pretty ill stuck on the loo most of the morning. I remember being normal (ish) those were the days. More than anything, I'm scared I'm going to lose my job.
-working from home-
Bear x

 

[Niks]

UUURRRRGGGGHHHH!!

What is it with Doctors and if there is nothing obvious and you don't fit into a neat little box they say IBS!

My daughter has been in hospital more times than I can accurately count easily upwards of 14 times since last October because of pain and dehydration.

Her GP has now given her morphine patches as he is at a loss as to what to do because her employer wouldn't have her at work today because she's not well enough! GRRRR She is so scared she's going to lose her job too.

I really hope you get your repeat pillcam, she hasn't had one! AND They cancelled her last colonoscopy because it would be too painful for her! Have you ever heard anything so ridiculous :ybatty::ybatty::ybatty:

Sending you (((HUGS))), keep fighting to feel better! That surely is a basic right :ghug: