New here, with a long story to tell!

[Pitzi]

Hello people. Just found this forums and it seems a great place to share a long experience and advice.

I am not sure on where to post my whole diabetes experience as its a very long one, and type-1 related.

Any suggestion as to which would be the best forum?

Thanks :)

[duck]

I think it would be a good way to introduce yourself, go ahead and post it here!

By the way, welcome.

[HeatherP]

Welcome Pitzi, I'm T1 also.

Nice to meet you,
HeatherP

[am1977]

HI and WELCOME :)

I'm also Type 1....have been for just over 3 years and am currently on a MM 511 insulin pump. I've had my ups and downs, but I find learning and sharing my experiences with others has really helped me deal with this disease. So please do share your story...I know I'll look forward to reading it ;)

Hope to see you around! :)

[CarlyesHope]

Welcome Pitzi...

Being fairly new here myself, I can tell you that this forum is like my home away from home, It is a wonderful place to confess you fears, get a hug when you need one, and find a great joke.

My daughter is the diabetic, diagnosed March 8, 2005.

Welcome again,


Kelly

[gettingby]

Hello Pitzi and Welcome. Duck is right. This is the perfect place to tell your story. I'm a type 1 now for 20+ years. Feel free to jump in anywhere and give your opinion. :D

[Pitzi]

Hello people, thanks a lot for the welcome :)
I am new to the idea of sharing my story on a public forum, but I feel tht my story might help others with a similar problem. My real name is Gerardo and I live in South Africa. Please bear with me with my long story and metric measurements ;)

Anyways, here goes.
It all started in 1994/1995. It was a very bad period in my family, I was 16 years of age, after a very long marriage, my Mother and Father decided to split up, and I was somehow involved in the whole story. I was the beginning of a very stressful period for me and the beginning of a nightmare. Within months, i started losing weight and not feeling to well at all. The typical diabetes T1 symptoms, hunger, thirst, weight loss. Living in a remote area didnt help much. I visited the local GP who found my blood sugar levels in the morning before having any food at 10.6. It was confirmed that I had juvenile onset diabetes. The first case of such a condition in my family, in both sides (father and mother). I knew nothing about the condition, and having an absolutely ignorant GP and being stuck in a remote area with my Dad didnt help much. The GP prescribed me with some medication (strangely, not insulin but oral medication!) and a strict diet. The medication he gave me made me more ill than better, I lost even more weight and my blood sugar levels were still very high. Seeing that his tretment didnt work, he decided to book me in at the local (horrid) hospital to get me on insulin medication. This he did, however after spending 4 days in hospital going on a constant hypo/hyper yo-yo he decided that I should visit a specialist as he couldnt get my insulin dosage right and was shooting in the dark. (scary stuff that a medical professional could be so ignorant and hopeless) Anyways, it was decided by my parents that it was best for me to go and visit my Mother whom now lived in Italy, and to see a specialist there. I was now reduced from a big strong 1.83m 75kg young lad to a 51kg bag of bones. I was not a pretty sight and it was getting worse. I was immediately diagnosed with Type 1 juvenile onset diabetes at the Rome clinic, otherwise I was perfectly healthy. The endocrynologist immediately put me on Humulin I (intermediate) insulin, 20 units before lunch, 15 units before dinner. I immediately started feeling better, gaining weight, and looking like a human being again! I was so happy, my blood sugar levels stabilized to normal levels. I was a happy chap. I returned to SA, and the "Honeymoonperiod" as I like to refer to it began.

I could eat anything except for sweet stuff, and I regained weight. I was fit again, started playing sport and enjoying life like before the diabetes. I had regained most of my weight and now weighed a healthy 70kg.

All this lasted until 2000. When the wheels started coming off.
I once again started losing weight, feeling ill, this time it was my gastric suystem playing up. I started having severe hypo's in the mornings, and luckily I still lived with myDad as I went pretty close to passing away due to hypo's. I suffered from diarrhoea, stomach cramps, acid indigestion and terrible pains in my stomach.

Seeing from my previous experience of the doctors here, i decided to fly straight back to my Endo in Roma and do another checkup. I was booked in for a full 2 -day checkup (it was ****!) including a E-scopy and G-scopy. I was diagnosed with H. pylori, elevated stomach acid levels and gastric ulcer. I was put on a combined antibiotic treatment and H2 blockers to control my stomach levels. I tested negative for gluten intolerance & lactose intolerance, but I couldnt touch anything with gluten or dairy, it made me really sick. I forgot to mention earlier that in my "honeymoon period" I was very subsceptible to sore throats, colds & flu. I must have had it at least 20 times in 5 years or so. And with numerous antibiotic treatments to try and curb the infections, to no avail.

On the ulcer treatment I immediately started feeling better, my glucose levels started going back to normal and I returned to SA. The joy was to be short lived though. Almost on a daily basis I started becoming intolerant to all foodstuffs. Previously it was just the lactose & gluten, now it became vegetables, most fruit except pears, chicken was a big no-no as well as any other white meats. The only thing I could digest as white boiled rice & grilled red meat. terrible. I went to a local GI. We did another G-scopy and E-scopy but he could find nothing. My ulcers had healed perfectly, my stomach acid levels had stabilized (I had to stay on the medication, Nexiam because as soon as I stopped taking it i would experience sever heartburn and go hypo almost immediately) my colon and intestines were perfect. He put me on anti depressant medications, and diagnosed me as having IBS. The next year or so was a nightmare for me. Having to eat a monotonous diet, feeling ill, not gaining any weight and being in a constant dozed off feeling due to the anti-depressants. I was sick, and the doctors couldnt figure out what was wrong with me.
The hypo's in the early morning were getting worse and worse, I had cut my insulin dosage by half, and still I was having Hypo's. No matter how much I ate, hypo's were a daily occorence. I decided to go back to italy. Another checkup, another G-scopy, all tests negative. I started believing that I must have been cursed or something. I weighed 59kg again and was barely skin & bones. terrible.

I came back to SA empty handed, my parents were going insane as they were seeing their son fading away and the doctors could do nothing about it. Thats when i cried enough with doctors and started doing some research on the net. I could find very little by doing a diabetes + intestinal problems Google serch. Mostly, gastroparesis (sp?) came up, but that wasnt what i had. At last I found an article (I wish i had saved the url) about some type 1 diabetics developing digestive enzymes deficency. basically, from what I understand, the pancreas has 3 functions. the first is to produce insulin. the second is the production of dygestive enzymes, basically the enzymes that break down the food that we eat so that it can be absorbed, and thridly to produce bicarbonate to neutralize the stomach acid. I started adding up things. Indigestion and intolerance to foods, the fattier the worse, having to take H2 blockers to control my stomach acid, diabetes. I printed everything and went back to my GI in JHB. he was very sceptical about it but agreed to my having a stool fat test.

Stool fat test came back positive, I passe on a huge amount of undigested fat in my stool. Bingo, we had finally found it, and it wasnt tghanks to the useless bunch of doctors that made me suffer for almost 2 years! Unbeliavable as it might seem, of the 4checkups that I went through, not a single doctor thought of doing a simple stool fat test :(

Anyways, to cut a long story short(er), I was put on Creon digestive enzyme supplements, have to take 2 with brekfast and 6 capsules with every main meal (that seems to be the perfect balance) and I have to take 1 Nexiam 40mg daily to balance my stomach acid production. scans etc were made of my pancreas as we suspected I might have a tumor or something, but my pancreas looks perfectly healthy in all aspects, except for the fact that its as useful as a paperweight.

I went back to my original dose of Humulin I, however the best weight gain I could get is arounf 66kg, no more. i still look a bit skinny, but there is no ways to put on more weight. the hypo's have been severely cut although i need to keep a close eye on my blood sugar levels as sometimes they tend to go a bit low. Its been 2 years now, and I cannot say that I feel too bad. Glucose levels are stable, but my lifestyle has been severely compromised. I still suffer from a bit of IBS. and for some strange reason I cannot come near gluten, dairy or chicken meat. strangely enough white meats seem to cause severe indigestion, even if I take the Creon or even increase the dosage. Other than that everything is pretty much ok.

Before this happened, I used to test my blood glucose like twice a week, it was always stable. Now I am testing myself between 5 - 10 times a day, as my blood gluose levels sometimes drop for no good reason. What drives me insane sometimes is the fact that I can wake up with a low blood sugar level of lets say 3.0, and I get a very small portion of starch, and it shoots up to 10.0 straight away, whilst on other occasions I can wake up with the very same reading and have something to eat, and when i test before lunch I am back at 4.5. The wonders of being a diabetic I guess :eek:

The worst feeling that i have felt in my life is being hypo. I have had it many times when i was still vetry sick, I simply cannot describe the feeling. It sometimes takes me up to 2 days to feel well again.

Anyways, hope this story might shed some light on the intricacies of diabetes. I have always been of the opinion that there are deeper roots to diabetes than simply affecting blood sugar levels. Mine might be a 1 in a million case, but it goes to show that diabetes can affect you in more than 1 way.

PS Ever since I have been on the digestive enzyme supplements and cut out the dairy/gluten, I havent had a single case of flu in the last 2 years......

[Belinda]

What an interesting story....Welcome to the forum family. My question is why didn't you stay with your mother since the specialist there was more on track than the one where your dad lived?

[Cinnabon]

wELCOME!
I HAVE TO SAY BELINDA HAS A VERY GOOD POINT. SEEMS TO BE THAT THINGS ARE MUCH BETTER IN ROME FOR YOU. I AM GLAD HOWEVER THAT YOU ARE DOING A BIT BETTER BUT YOUR STORY IS BEYOND INTERESTING. I HAVE ALWAYS HEARD AT TIMES THAT A TIMES WE ARE OUR OWN BEST DOCTORS! PLEASE KEEP US POSTED ON YOUR RECOVERY PROCESS AND IM GLAD YOU FOUND US.

[Dode]

Welcome to our forum. It is through stories like yours that we all learn something new. I am sorry that you had to go through all of that , but I am sure glad you found and told us about it. I agree that sometimes we are our own best dr.

[Pitzi]

Thanks for all the support people. All my business is in SA, and I hate europe. me and my mother dont get along too well either.

[Dewey]

Hi Pitzi! Just wanted to chime in and welcome you to the forums family, too. :D Hypos are certainly scary, especially if they've affected you for up to two days post! :eek: Sure hope you continue to improve (as it sounds like you've been doing), and hope you continue to share your experiences with us. :thumbsup: