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BlacJAC
Posts: 43
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Wed Jun 29, 2016 3:23 pm

I have no idea Didge what biopsies are required for. Assuming with AIP there must be changes within the tissue.

I just had it explained to me that biopsies are required for a diagnosis of AIP 1 or 2. Normally done via an ERCP, again if i recall correctly, but because I need my gb removed, this will be a case of two birds with one stone. They do not think I have the first one as 2 GI's have stated that manifests itself in a very similar fashion to PC e.g. lesions/tumours/duct blockages and that's something i have no evidence of thus far. AIP 2 is more difficult to detect because it seemly manifests similar to chronic pancreatitis. I hope I'm recalling all this correctly.

AIP 1 is a multi organ condition and AIP 2 usually just involves the pancreas and maybe the saliva ducts.

BlacJAC
Posts: 43
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Mon Aug 29, 2016 7:55 pm

Hi everyone. My stress levels are back and my diarrhoea has been back with a vengeance for the last 3 weeks (not pale, brown and sinks to the bottom of the loo after a few seconds). Even though I no longer eat much fats. So much so I decided to actually go private and see a GI consultant for a 2nd or is it now a 5th opinion?! Not really sure now. After looking through my scans and records, he's questioned why I'm getting my Gallbladder removed when there's zero evidence of stones or inflammation. Which leads me on to the next thing, he's astounded I haven't had a colonoscopy, yet had numerous scans and tests. So he's written to my GP recommending I get one before any GB removal. He also stated I shouldn't have had an ERCP because those should only be used as a last resort, to obtain 'further' information on a condition already suspected via US/MRI/CT or to fit stents etc. He's actually surprised this was given the go ahead by the doctor doing the procedure.

As for the pancreas thing, he said everything he can see from the scans is encouraging. He thinks if the colonoscopy comes back clear this all should be chalked down to IBS-D. So it seems I've wasted a wad of cash just to be told I may have IBS.

I simply can't believe IBS would make me feel this awful and have such an impact on what foods i can and can't eat. With my cant's considerably larger than my cans list

BlacJAC
Posts: 43
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Wed Nov 09, 2016 11:16 am

Hi, I had a colonoscopy done yesterday and had it done privately as I was gonna have to wait until the new year had i waited on the NHS. All i have to say is "OMG, the prep!!" THE PREP! It was awful. Even after reading all the hints and tips on the net, I thought my entire GI tract was on its way out at one point. If i never have to do that again it will be too soon. Other than feeling like crap (completely washed out like you feel after having a bug and walking like John Wayne having just stepped of his horse), the actual procedure was a cake walk. It's as if my body was ridding itself of food that I had yet to eat.

They found 3 polyps, 2 of which are said to be fine, with the 3rd firmly in the "not too sure" category. They were all removed. They noted there was irritation down the descending colon, but they don't think it's Crohns or UC, but they took a sample or two anyway. It's probably a result of the codeine and poo remaining longer than normal.

They are now 99% sure the pain in my upper right side that goes through to my back is down to my colon. It was mentioned I have a very tight curve in my colon compared to most people. So if i get constipated, it will affect that area due to the gas build up. However, I'm of the opinion that my toilet habits have been regular for the last year insofar that I haven't went a day without going and what i've produced isn't a small amount, just normal. But i suppose the irritation doesn't lie.

Not unduly worrying about the dodgy polyp because what will be will be. I just don't want to ever drink that horrid stuff ever again. I'd be more worried about that than them going back in to remove more.

PCUK Nurse Jeni
Posts: 955
Joined: Mon Jun 14, 2010 12:30 pm

Re: My convoluted diagnostic thread

Postby PCUK Nurse Jeni » Wed Nov 09, 2016 3:33 pm

That all sounds positive Blacjac.

Good to hear that things are being investigated and that a potential source for the pain seems to be found.

Lets hope you will not need any further procedures.

Take care,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

BlacJAC
Posts: 43
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Tue Nov 15, 2016 3:06 pm

Hi everyone this will be my very last update as I've spammed this forum enough and I feel for now I have reached the end of my diagnostic journey.

The pathology report came back for the polyps that were found and subsequently removed during my colonoscopy. Two were normal, the 3rd was found to contain pre cancerous cells. The actual name escapes me, but the term began with the letter 'A' that is better used to describe the type of polyp found. During this journey (now little over a year) i have lost around some 3 stone with some of that weight loss being easily attributed to anxiety/worry and hopefully the rest being down to my overhauled diet (my body is happy with around 1400-1500 cals a-day), having completely removed fried food, pizza and any other garbage you can think up. Fruits, fibre, protein and carbs are now my staple.

Anyway, the consultant I saw stated he was 100% confident that the entire polyp was removed and that the actual stalk of the polyp contained none of these cells, so not chance of those cells coming into contact with the wall of my bowel. Talking a step back from all this, it's obviously been a blessing in disguise that I have pushed and harassed both all the GP's and consultants I've seen over the last 14/15 or so months. Initially convinced myself I had PC only to be fobbed off with an initial diagnosis of IBS, yet they found something I never once suspected or gave a second thought about. Thankfully I pushed and pushed and because of this I have dodged that particular bullet for the time being. I am so thankful I was in a position to pay for these tests privately and without that money, I could have gone on to develop colon cancer. It's wrong that it should take having some spare cash before you receive potentially life saving tests and consultations, but I suppose it is what it is. To finish up on this subject, I now have to get checked at 2 yearly intervals for the foreseeable future, so more prep for me (YAY!).

I would like to thank everyone who has taken the time out to help me and to the nurses who's time would have been better focused elsewhere. Thanks!

PCUK Nurse Jeni
Posts: 955
Joined: Mon Jun 14, 2010 12:30 pm

Re: My convoluted diagnostic thread

Postby PCUK Nurse Jeni » Tue Nov 15, 2016 4:01 pm

Great news Blacjac!

Thanks for coming back on to update us all, and to "close" your particular journey for now.

It has been a pleasure and pleased it all turned out well in the end.

Kr,
Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

sandraW
Posts: 990
Joined: Thu Oct 31, 2013 5:38 pm

Re: My convoluted diagnostic thread

Postby sandraW » Tue Nov 15, 2016 9:57 pm

Great news Blacjac, good that they got that polyp as soon as they did, which as you say without you pushing would have caused problems in the end.
Hopefully you will now start to feel better as you will no longer be worrying take care sandrax xx

Didge
Posts: 776
Joined: Sun Dec 29, 2013 10:35 am

Re: My convoluted diagnostic thread

Postby Didge » Tue Nov 15, 2016 10:15 pm

Christmas is only a few weeks away. Have a great one! X

Dandygal76
Posts: 688
Joined: Sat Mar 12, 2016 9:49 am

Re: My convoluted diagnostic thread

Postby Dandygal76 » Wed Nov 16, 2016 10:39 am

I am glad you are feeling stronger BlacJac. I am sure if we had all convinced ourselves we had PC then we would be the same. Stick to your new healthy habits. I think good healthy living is the key on the whole. x

BlacJAC
Posts: 43
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Mon Sep 11, 2017 9:18 am

Hi, been a while and thought I'd give an update. The 2 years since all this began has kinda been 2 of the unhappiest years of my life, but always used the mantra "It could have been worse" as witnessed by the stories strewn all over this site.

Anyway, 3 weeks ago after an argument with my wife one night I suddenly became hot. Like virally hot, but felt fine. Never worried about it because I thought it was either stress, a virus or it would just be away the next day. Needless to say I was sat for the first 2 weeks with a wet flannel in front of a fan. Simply felt i was burning up. Again, never ever felt virally and my temp was always normal.

During the 2nd week I contacted my gp as I had come to the realisation that this may actually be flushing, even though I wasn't going bright red, nor sweating. After a whole battery of bloods last week everything including my thyroid all came back normal.

Being the raging hypochondriac that I was/am, I decided to do what I promised never to do again - GOOGLE. Really wish I hadn't but in a way glad that I did. Dry flushing in males is never a good thing and I think this is related to my GI issues I have suffered from over the last 2 years. Jumping the gun maybe, but all my symptoms point to carcinoid syndrome.

Carcinoid tumours (or you may recognise them better as neuroendocrine tumours) are notoriously difficult to find. My GP is refusing all further investigations due to all the tests I had last time out and because all my bloods were picture perfect and she's putting it down to anxiety. In a way I don't really blame her, but something I have never ever been checked for other than my thyroid is hormones. Reading up on neuroendocrine tumours something that has been quite striking is the amount of people who have went through the exact same journey as myself, tons of normal scans, bloods etc only to find out later after specific blood/urine tests or even the gold standard pet scan (not the normal pet scan) that there was indeed an issue is amazing. More often than not, it's how this pans out.

Would one of the nurses please be kind enough to give me some advice on how best to approach to my GP without her thinking I'm being some raging hypochondriac, please?

Dry flushing in guys is a red flag symptom, yet according to her, it doesn't warrant further investigation as my bloods are fine. It's not thyroid or diabetes so she's not interested. I really loathe how gp's nowadays use the "if it sounds like hoofs, it must be a horse" approach.

PCUK Nurse Jeni
Posts: 955
Joined: Mon Jun 14, 2010 12:30 pm

Re: My convoluted diagnostic thread

Postby PCUK Nurse Jeni » Mon Sep 11, 2017 11:34 am

Hello BlacJac,

Thanks for your post.

Sorry to hear that you are experiencing some symptoms again.

I will email you directly regarding other tests which might help.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

BlacJAC
Posts: 43
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Wed Sep 13, 2017 8:31 pm

Hi Jeni. Thank you very much for your email that went above and beyond what I expected a PC nurse to do for someone that remains undiagnosed.

After talking to my GP today and after showing her your email she has reluctantly referred me on to an oncologist so she can "put my mind at rest". She stated had i had pancreatic cancer I'd be a helluva lot worse than I currently am or dead after 2 years, especially without treatment and my bloods would be showing something by now. Something I think we both agreed on. However, it's not how most NET tumours work or progress.

I'm not saying if the worst case scenario pans out that it's necessarily in my pancreas, but at least now i may get the specific blood and urine tests. She also said most of those tests can't be done in GP offices. No idea why, but you'll know the reasons behind why they have to be done in a hospital. Whilst still slightly stressed with anxiety, I am actually quite clam about it all. I've lived a thoroughly miserable 2 years with a very limited diet; Can't eat out, can't order take aways, going on holidays are a major embarrassment as I'm that guy that has to bring his own food and a host of other hindrances. I don't know anyone with IBS who lives my existence. Most can at least indulge even if it's for 1 night. Thought i'd never hear myself say this, but I'd rather have a good 2-8 years than another 30 odd years of the last 2 years.

I'm not saying this through depression nor just saying this for effect, it really is the truth. Of course I'd rather be care free with my health in tact, but I'm old enough and hopefully wise enough to know life throws some of us a curve ball from time to time. My kids are healthy and that's ultimately all that matters to me now.

PCUK Nurse Jeni
Posts: 955
Joined: Mon Jun 14, 2010 12:30 pm

Re: My convoluted diagnostic thread

Postby PCUK Nurse Jeni » Thu Sep 14, 2017 2:26 pm

Hello BlacJAC,

That's good news to hear that at least these other issues are being checked out. I am sure it has put your mind at rest.

And that's no problem Blacjac - I might still get in touch with the NET foundation though, as they may have more information for you.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

BlacJAC
Posts: 43
Joined: Thu Oct 29, 2015 8:14 pm

Re: My convoluted diagnostic thread

Postby BlacJAC » Wed Oct 11, 2017 12:49 pm

Hi folks.

I saw the oncologist last Friday and it was a complete and utter waste of time. Sat for an hour to be taken, then once i did see the oncologist I was instantly brushed off with it's "generalised anxiety". My "fight or flight mechanism misfiring" This is going to sound almost laughable, but the testing began and ended at my testicles being examined. :shock: :mrgreen:

The entire appointment lasted 5mins.

Who needs further investigations, scans, bloods etc when some oncologists possess the super human ability to give a diagnosis like that straight off the bat. If anyone is needing such an oncologist, then I can pass their information on. Unbelievable. Even my GP was scratching her head and didn't initially believe the consultation panned out in this manner until she read the report.