Diabetes and my news

[Guest guest]

Hi everyone,

I must apologise for not having been on the board as often as I used

to and, especially, if I've missed any posts of significance to me.

I haven't been feeling well lately, apart from the ten days on the

steroids! I put this down partly to the ear/nose probs, which turned

out to be polyps. However, I have had symptoms such as light-

headedness or singing in the ears, in addition to the muffled sound

which I sometimes get and which is probably linked to the polyps.

Well, today I had my regular appointment at the pancreas clinic. I saw

Professor Sutton, a delightful gentleman, whom I've seen on other

occasions hen Prof Neoptolemos has not been available (in theatre

today). He said my last glucose-tolerance test result was 13.7. This

is definitely indicative of diabetes. He is now referring me to an

endocrinologist. Of course, I have been waiting some time for diabetes

to develop. It seems I have now virtually reached total burn-out, not

surprising after 55 years of symptoms, very severe at times and less

severe at others, of chronic pancreatitis.

I told him that the steroids (prescribed for the nasal polyps)had not

only begun to restore my sense of smell but had also made me feel very

good...absolutely no abdominal pain, for example, whereas I usually

have some pain each day, even if it's not bad these days, and usually

feel tired as well. I asked him again about the possibility of auto-

immune pancreatitis. After all, I have coeliac disease (auto-immune)

and polyps are often indicative of allergies. He listened very

carefully and took me very seriously. However, he said that my CP did

not look typical of auto-immune CP (which I know from what I've read),

much more like typical hereditary pancreatitis and that, even where

auto-immune CP was strongly suspected, the use of steroids was still,

to an extent, experimental and controversial, although definitely

being used. He thought that the sense of well-being I had experienced

was more likely to have been general rather than specifically related

to my CP and said that the side effects would probably make the use of

steroids not advisable in my case. The tests I've had do not actually

point to the likelihood of auto-immune pancreatitis.

We then moved on to take about monitoring for cancer. I am very high

risk as I have had CP for so many years. People with hereditary

pancreatitis of such long standing, especially with extensive

calcifications (which I have) and diabetes (which it appears I've now

developed), do run a high risk. I want to have another ERCP (had last

one last December) for juice collection so that they can do another

mutation analysis. Last year I was found to have the Kras mutation but

this is common in CP cases. I did not have the P16 or P53 mutations

which are, apparently, more significant in indicating possible

cancerous or precancerous activity. Prof Sutton said he would

definitely support me in my wish to have this test repeated. If the

two P mutations are found, then they will strongly advise the TP. If

the two P mutations are not found, then they will wait three years

before doing another ERCP.

My only problem is that my gastroenterologist (who carries out the

tests such as ERCP and EUS) does not like doing more of these tests

than are absolutely necessary, for obvious reasons I suppose.

Hopefully they will agree on this one, though, and I will have another

ERCP soon. The gastro did the one I had last December and I was fine

apart from a few days increased pain. Apparently, once the pancreas is

in as bad a state as mine, the risks of serious effects following ERCP

are quite low. (Is that a " perk " of advanced CP???!!!!)

So that's my news folks. A bit sobering! Diet might be a problem but I

have no idea what the endocrinologist will advise...nor how long the

referral will take! I already have to avoid gluten, fats, too much

protein and all alcohol! I'll have to begin looking at advice on

diabetes now, as well. Still, I do think it might be one reason, along

with the polyps, why I have been feeling less well lately. Hopefully,

once I sort out appropriate diet and/or medication, I should begin to

feel better.

Jim is fine at the moment. No more treatment just for now. More

monitoring tests in December to check the PSA level. Prostate can be

very slow, even supposing it hasn't been totally eradicated, so we are

cautiously optimistic for the moment.

I still intend to retire in July...unless the ERCP throws up very

worrying results, in which case I'll probably leave at once and have

the TP.

Some of you may remember the bid I wrote for my school to have what is

known as " specialist status " as a Maths and Computing College? (yes, I

know it's ridiculous that I, who am not very good with computers,

wrote this bid!! However, I AM very good at understanding Government

rules and philosophy and how to please them! You might remember that

we got the status? We are having the big official opening in a couple

of weeks time. Our MP will be there. I'll tell you all about it

(whether or not you want to know!!!!!!) afterwards. Good excuse for a

new outfit....not that I need one! (An excuse, I mean. One always

needs a new outfit!)

This post has been very selfish....all about me. However, I think

there are some points which may be of interest to certain patients and

that's why I've sent it.

I send my love to all my treasured American friends (and non-Americans

too!) and thank you again for your wonderful support both in my

illness and during Jim's. It means a great deal to us. Once I retire,

you won't be able to get me off this board!!

Take care and thank you for " listening " .

Fliss (UK)

[Guest guest]

Fliss,

It is good to hear from you.

Crystal