What do you think?

[Eppie41]

Hi, I've suffered with bowel 'stuff' for about 15 years. I've been diagnosed with constipation variant IBS basically as a default diagnosis after they failed to positively identify anything else. Sorry for the long post but I really need your input please.

The problem I have is that a lot of my symptoms don't seem to be caused by constipation and sometimes when I have symptoms, I'm not constipated! My symptoms are mildly there all the time but I have these painful 'flare-ups' which is when the diagnosis doesn't seem to fit. When this happens I have a severe pain around the caecum area and sometimes ascending colon and when really bad in transcending colon aswell, not along the whole length though, sort of in patches. I get very bloated and generally sore all over aswell.

The first time Crohns was suggested to me was 5 years ago when I was admitted with suspected apendicitis. Although I was constipated my GP also noticed that my bloods showed high inflammatory markers and Folate deficiency. He sent me for a colonoscopy which was incredibly painful and the doctor who did it got really cross with me for not staying still..anyway I digress..I was sent home with a piece of paper that said 'normal' on it, no biopsies were taken and no follow up given.

Still with ever increasing severity of symtoms I continued to pester the specialist as I was worried about bowel cancer. 2 1/2 years ago I had a barium meal x-ray which according to the radiographer (she was chatting to me through the large bowel bit) showed an anomaly around the caecum but this was never written down in the notes and the specialist has now told me to go away and not come back because as far as he's concerned the only thing he can do is remove my colon and "you don't want that do you?"

Last week I was sent to A&E again with what my GP suspected could be a bowel obstruction - pain and swelling caecum to mid ascending, couldn't even pass wind- I was definatley NOT constipated as I had done loads of enemas and hadn't eaten for 2 days. I was told to go for an x-ray and not to delay. The hospital staff said, there's no note from your GP and we don't do xrays JUST for constipation!! like I was stupid. I was still in loads of pain but I just went home as I couldn't stand the shame. Over the next 3 days I gradually started passing so I felt reassured that it was not blocked but now after 5 days, my poop is still really skinny and quite loose and I'm very bloated and tender abdominally which is what seems to happen after one of these painful episodes - and I'm still NOT constipated..... This was so bad this time though, I just cant stand it happening again and I'm still not convinced that it can really be IBS??

What is there left to say to them? They keep saying that there's nothing wrong because I don't get bad diarrhoea or blood in the stool (although they've never tested for this). As far as I can see, I have all the symptoms apart from the D. Is is still possible I could have IBD, can you have IBD and NOT have bad D? As I said, it really scared me this time around as I thought I was going to explode and the pain and fever were unbearable.

Could something have been missed in the colonoscopy 5 years ago? Do I have the right to ask for another one now and should I have one whilst I have symptoms or not?

Thanks ever so much if you've read this far, I know you've read this stuff a hundred times before, please reply if you can, ta.

 

[DustyKat]

Hi Eppie and :welcome:

Oh yeah, you most certainly can have IBD without diarrhoea and/or bleeding and from the symptoms you describe I don't think you can rule IBD out. My daughter never had diarrhoea or bleeding and actually tended to constipation due to the narrowing in her terminal ileum.

I'm not surprised Crohns was suggested 5 years ago with those type of blood results and the Folate is interesting as one cause of this could be disease in your terminal ileum and your resulting inability to absorb the nutrient. Also abnormalities in the caecal area may be evidence of disease in this area also. Ileo-Caecal Crohns is a common area for this disease to occur.

Have you had recent bloods done for inflammatory markers or B12 and Folate?

I would pursue testing if I were you until you get a definitive diagnosis. By all means ask for another colonoscopy with loads of sedation! Get more bloods done, maybe a pill cam if the colonoscopy is inconclusive. Just push, push, push, you know yourself better than any doc and if you think something isn't right go with that gut feeling.

Do you keep a diary of your symptoms? If not here's a link to some things you may want to keep a record of....

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck and keep posting and if you have questions just ask! Welcome aboard!

Take care,
Dusty

 

[Eppie41]

Thank you Dusty, it's sort of relief to know I could still be helped but also a bit daunting to have to go back. I just don't want to end up with a perforated colon!

I've had no tests for 2 1/2 years and can't go back to the same Dr as he wont see me anymore, I also suffer with mental health stuff and he just keeps saying it's that and IBS and wont take me seriously. The only other hospital available to me is where I had the torture that was the colonoscopy with no pain relief! Aargh, I wonder how much it costs to go private?

Thanks again

Ally

 

[DustyKat]

Hey Ally,

Where are you located? There may be others here that can recommend a good GI or hospital nearby. Would travelling further be an option?

Dusty.

 

[Eppie41]

I'm in NW England/Yorkshire. I could get to manchester or leeds but any further is a problem as I dont have a car and struggle with long train journeys.

 

[jboi85]

It definitely sounds to me like you need to see a different specialist, because it sounds like you aren't well at all. I'm not an expert but I'm sure you do have the right to request another colonoscopy (make sure you're either very heavily sedated or anaesthetised!), and I don't think it matters if you are suffering symptoms at the time of the test or not. Saying that, any decent consultant (obviously not the one you have presently) should request this, or any other (preferably less invasive!) examination(s) needed to reach an accurate diagnosis. I think it is very unfair the way you have been treated, even disgusting. After all, as Dusty so rightly pointed out, go with your gut feeling, you know your body, and you know when it's not right. I hope you reach a diagnosis soon, so you can start treatment, and hopefully start to feel an improvement. I know it's hard, but try not to let this ruin you. You can/will beat this, as long as you get competent professionals behind you

ps. sorry if this does't make much sense or is a bit weird to read, I have had to use some painkillers and I feel very floaty!!!

 

[Rebecca85]

There must be other GPs in your area, you can change what practice you go to, or maybe you're allowed to go get a second opinion without changing GP, contact PALS (patient advisory liaison service or something like that) for info and help!

 

[Manzyb]

You definitely should persue this again. Find a new doc. Any doc that isn't willing to listen to his patient is just ridiculous.

I had the same thing a long time ago when the doc kept telling me it was IBS, and then I was anorexic, and all kinds of things. I finally got so sick I ended up weighing barely even 90lbs at 15 years old. It was so bad at that point it took me a good year to recover on mediciations.

Just keep going back!! Don't let them tell you there is nothing wrong when you know something is going on in your own body.

I hope you find some answers!!!
:goodluck:

 

[Astra]

Hi Ally
and welcome fellow Brit

I'm shocked and appalled at your doc's attitude, to go away and not come back?
This is not acceptable at all. I had this crap for 15 years, and in all that time without appropriate meds, I was scarring and narrowing.
Go back to the GP and tell him that it's your right to choose which hospital you go to to see a specialist, he has to comply. This is a new initiative, it gives patients more choice where to go. Here's a link

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

Print this off and shove it down the GPs throat if you have to!
Be assertive, Insist & Persist!! Start fighting, don't let them walk all over you, they are not Gods! It's your right as a UK citizen!
If you don't get any joy, phone PALS, they're batting on your side!
Good Luck!
lotsa luv
Joan xxx

 

[clearwell]

Hi Astra, I love the bit about shove it down your Doc's throat if you have to.That
sounds like very good advice.The suffering is bad enough without having to fight for
decent medical treatment.

 

[tiggerbabe]

Hi Eppie,

I'm really sorry to hear what you have been through. Some people can go for years before crohns is diagnosed.
I am not a doctor but have you looked at the posibility of Coeliac disease. I have had friends you were diagnosed with 'IBS', who have then changed their diet to manage Coeliac and this has improved things dramatically in a very short period of time. It won't hurt to give it a try.

If it doesn't help, like others have suggested, change Doctors or demand you see another specialist. We have a right to medical care. If you don't get satisfaction please follow up with the PAtient Advisory Liason Service.

I was told 10 years ago I had IBS, needless to say they were wrong, After having bouts of illness over a 20 year period I was eventually diagnosed with crohns after a severe flair.

Please please don't give up.