Hi i am a 47 year old male.

My story. It all started a couple of years ago, i had been getting pain in my lower right abdomen, the doctors suspected it was my appendix, which was removed and i have since found out that it was healthy. My pain continued with minor bouts of diarrhoea, which i just put down to stomach bugs. By the summer of 2009 the pain was much worse and the bouts of diarrhoea where getting more frequent, so in September it was back to the doctors who said he thought i had an Inflammatory Bowel Disease, an appointment was made to see a colorectal specialist, after a 2 month wait i got to see one, they sent me for a CT scan which didnt show anything, so back to the specialist who said IBD inflammation doesnt always show up on a CT scan, sent for a colonoscopy which didnt show anything but still waiting for the results from the biopsies. Since first seeing the doctor to thus date it has been 6 months and i am still none the wiser as to what i have. In the past 2 months i have started to show signs of blood in my stools and i am also vomiting on a regular basis.

i am really starting to believe that no one in the NHS really cares about patients.

Thanks

Ian

Hello Ian

I'm a new member just joined today as well.

If the colonoscopy came back clear then it sounds like the problem is in the upper bowel. You'll most likely be sent off for a barium X-Ray next. As far as tests go...that's one of the easier ones lol All you have to do is drink a couple of litres of barium and lie in front of the X-Ray. No tubes up your jacksie with this one!! lol If you're lucky you'll get away with just a course of steriods to ease the flare up.

I'm a bit of a crohns veteran so if there's anything you want explaining please give me a shout.

Thanks Oliverio

I did think that would be the next route, no tubes wooohoooo unless they use a Small Bowel Enema which means one down the nostril.

Call me Oli

Must admit the nostril one is the only test I've never had. I think its pretty rare that they still do that test. THe vomiting also makes me think the problem is in the upper bowel...You shouldnt be vomiting if the food has already travelled to the lower bowel. When it reaches there its usually trying to get out of the other end! lol

Really hope it all works out for you without too much discomfort.

Thanks once again Oli.

It is a real good help being able to chat with someone who has been through it all.

Looks like i am going to have another few months of putting up with this then, seems to be about 4 weeks in between visits to hospital.

Hi Ian, don't give up and don't let the doctors treat you like there is nothing wrong. It's took me a staggering length of time to get diagnosed (not saying how long because I don't want to depress you!) I had several colonoscopies, small bowel enema, CT scan MRI scan,white cell scan ultrasound but it was capsule endoscopy that found it. Easy pain free test, swallow a capsule, it takes a couple of photos every second on it's journey through your intestines and showes up everything!!! At times My consultant suggested I had ME or severe Irritable Bowel but you know yourself when something is just not right... My consultant was quite shocked at the level of ulceration in my small bowel that just wasn't showing on any tests. I'm just starting treatment so a long way to go but wanted to advise you to not let them dismiss you! Good luck

Hi Chihuahua.

Thanks for the feed back. I hope your treatment is going ok and making a difference.

Welcome Ian and Oli. Nothing much to add to the comments above, just agree that you keep harassing them, they seem to get there in the end! My problem was not the diagnosis (which was stumbled upon while looking for something else ) but the treatments, of which I have had a selection of with little apparent success.

Hi Ian, Welcome there fella, just keep on at them doctors, if they don't listen, just switch to another, look in to who has the best reputations, you have the right to go anywhere.

Hi all

Well been waiting 3 weeks for my biopsy results, what a joke. Does the NHS have any other speed apart from very slow and if i phone up to find out they are not very helpful at all.

Best wishes
Ian

Hi Ian,
Please insist they send you for a capsule endoscopy asap. It's taken them three years to diagnose me and I had 2 colonoscopies, 2 CT scans, gastroscopy, blood tests, a laparoscopy, stool tests and umpteen X rays. The doctors kept telling me that I was depressed and I couldn't seem to get through to them that yes, I was certainly depressed but that the reason I was depressed was that I had lost two stone in weight and had felt desperately ill for almost three years!
I too found the NHS interminably slow. I paid for some of the tests privately and badgered them about the others. But the capsule endoscopy - a tiny camera you swallow - shows up everything. I wish they'd done it sooner. It's painless and easy too. I think they hold off with this test because it's expensive to analyse but I think you should really insist they do one.
All the best,
Gail

Hi Gail

Thanks for that, it is a great help i will tell them i want a capsule endoscopy doing, see what they say about that. I just wish they would get a move on with telling me the results of tests. someone could quite easily go from being treatable with drugs to needing surgery the speed they work at.

Cheers

Ian

Hi all

Just had possibly the worst week i have had.

Tramadol wasnt even touching the pain and as for food if it wasnt going straight through me it was coming back up. What worries me the most is, i dont feel hungry, yet i must be empty.

Moaning again

Ian

Ian, make sure you don't get dehydrated even if you're not eating much and sugary drinks can be useful for the energy if you aren't keeping much else down. Sorry to hear you're having a rough time

I had a fairly positive visit to the consultant. Even though he pretty much said the drugs aren't doing me any good he said there's not much point in going for surgery unless the symptoms are actually sufficiently bad to make it worthwhile. So I carry on taking nothing for a few weeks until we find out if the Crohn's has just decided to behave itself for a bit or whether it's the remains of the 6MP in my system keeping it under control...

Nigel

Hi Ian

Sorry to hear you've had a rough week!

Only advice I can offer is to keep drinking. The Nourishment drinks are quite good when you can't eat anything solid. You can find them in the fridge section of most newsagents.

Try to avoid fuzzy drinks but as Nigel says sugary drinks like Ribena are excellent to keep energy levels up. Drinks like Lucozade are rubbish though and will only give you gas.

For the pain I would recommend you steer very clear of painkillers like Nurofen as they cause internal bleeding.

What I have often found is for temp relief from pain have a long soak in a very hot bath. Take a book in there if you need to and just lie back. It works almost like heat therapy

Hope you get through this little hiccup soon mate!

Hello all

That capsule endoscopy seems the route for me. Watched a test on youtube - that little camera is the business. I am never having a colonoscopy again - unless they bribe me or put me out. Nurofen are murderous.

I know I am slightly off thread but does anyone know how much it would cost for the capsule route privately?

Regards

Ian - B (makes life easier).

Hi All

Got my date for my next trip to the Consultants for my biopsy results, 6th April, makes a change from the usual 4 week wait, makes me wonder what they are going to say.

Keep smiling

Ian

Yes, I the capsule is definitely the easiest of the tests. I found colonoscopy really painful even with sedation and pain relief. I suspect the capsule text will be expensive because of the time it takes to analyse all the footage. But, if I'd known about it, I would have paid to have it done just to get a definite diagnosis. I think it only records data from the mouth to the end of the ileium though....I think it's too murky in the large bowel for the camera to pick anything up.
Let us know how it goes at your appt. Glad you don't have to wait too long for that at least.
Gail
xx

Thanks Gail

I didnt mind the Colonoscopy, but then again i dont remember much from it. I suppose they use them to rule out UC in the large bowel, seems like my lot have started at the bottom, pardon the pun and are working their way up.

Keep smiling

Ian

Glad to hear that your finally going to get the results Ian whatever the news at least your making forward progress - I do hope it goes well for you.  I have heard nowt from my test so I will get on to them next week.

Regards

Ian B

The trick is to keep on at them, be a real pain in the arse, pardon the pun.

On the one hand it will be good to get the results but i am as scared as hell as to what they are going to say.

Keep smiling

Ian

That has to be the worst bit - knowing that you will be told something. The way I see it is whatever the diagnosis, something is wrong and needs to be addressed.

Who knows how these people come to their conclusions so don't be afraid to put them to task and explain how the diagnosis was arrived at and treatment options. They work for your benefit not the other way around. If only they realised that, the process would be so much easier irrespective of outcomes.

My thoughts are with you - Best wishes

Regards

Ian

Just back from seeing the consultants, bloody useless they are. biopsies didnt show anything. They have given me Loperamide for the diarrhoea. Being sent for an Endoscopy, i did mention the capsule one but they wont do that until they have done the normal one. I feel so fed up and really low now.

I aint smiling anymore

Ian H

Hi Ian,
Sorry they couldn't give you anything more useful today. It's so frustrating having to wait for results. I know how you feel. I think they have a protocol of tests to go through and they can't deviate despite their clinical judgement or your needs - cheapest tests first!  Are they doing the gastroscopy this time?
Gail
x

Hi Gail

Yes they are and then it is back to the consultant in 6 weeks time. If nothing shows on the gastroscopy then they will send me for a capsule endoscopy.

Ian H
x

Hi Ian

Sorry to hear that you haven't had a useful result.  This happened to me over 10 years until I paid to go private - the best £200 I ever spent.  Basically this was for the initial consultation and then referred for various tests (CT scan, colonoscopy & barium small bowel plus a selection of blood tests, which included different tests than the normal full blood count), then back to the NHS.  My colonoscopy never showed any evidence of crohns as it was in the small bowel and this couldn't be reached, however the CT and bloods indicated that something was wrong and suspected (96% sure) it was crohns.  Then sent for a barium x ray which clearly showed it, never understood why I hadn't had it before. I was very relieved yet very angry when I got the results but after speaking to other crohnies, sounds like we all have a similar tale to tell.  My boss paid for the capsule - think it was about £200 but it didn't show her crohns, hers came up on a CT scan only.  I guess it depends where abouts it is.
Best of luck with it all, try to keep smiling (in between toilet visits)
Lou xx

Get that smile back Ian.
Not many are diagnosed quick.
Head Up!!
Smile.

Hi Ian

I've been thro the same thing over the past 30 odd years but after my op in Jan, and the fact that the surgeon TOLD my husband and I that the biopsy showed crohn's, I thought i was home and dry.  However today I got a copy of a letter that has been sent to my gp from the gastro doc, not the surgeon, at the hosp.  It says that "biopsies were not diagnostic of crohn's disease as they had no granulomas" and the pathologist stated that "this is suggestive of quiescent IBD".  Can anyone explain this to me please?  I cannot get an appointment with my GP till nxt week, and although I have a barium meal booked for 29/4, my nxt appointment with the gastro doc is AUG 15TH!