GI Update III

It as been almost a month since my last update so thought I'd better add something. In general the feed continues to go reasonably well. The plan to ingest 1.5 litres of Peptamen 1.5 is a work in progress. I have increased my feeding rate to 75 ml/hour and even tried 80 for a couple of days but with an increase in bloating so backed off again. Have also experienced some bloating at the 75 rate recently and am considering doing a course of erythromycin to clean out my gut. I'll give it a couple more days to see if it takes care of itself though.

I really haven't been monitoring my intake very closely so can't say how much I'm getting on a daily basis but I suspect it's averaging about 1.25 l. Perhaps I'll make an effort to log my time on the feed, if for no other reason than to see if I'm actually making any progress or simply standing still. My weight is currently 113 lbs., up 2 or 3 pounds from a month ago, not spectacular but moving in the right direction at least.

GI Update

Yesterday was my second appointment with Dr. Howard. I had mostly good news to report in that I continue to tolerate the Peptamen 1.5 quite well, have only had 2 incidents of reflux since starting the formula 6 weeks ago ( both the result of eating too late in the day), no nausea and only minor bloating. The down part is that I've only gained 1 kg (2.2 lbs.).

The solution? Increase the feeds by 50% to 1.5 l/day. This would give me 2250 calories plus whatever I can get orally. I forsee two potential problems with this. Firstly, at my current rate of 70 ml/hour that works out to close to 21 1/2 hours that I will have to be hooked up meaning I have 2 1/2 hours in which I can go out. Secondly, I already feel full most days so an increase of 50% means I could end up feeling bloated and over full again on a regular basis.

And so, I think I will just take things as they come. It's summer, I love being outdoors and 2 /1/2 hours is just not enough time to do the things I need or want to do. I'll make 1.5 l my end goal but am not going to lose any sleep over it if I don't reach that every day. For example, if I allow myself up to 6 hours of 'free time', which sounds much more reasonable, that still means I can get 1260 ml/day or almost 1900 cal. On those days when I stay in due to rain or whatever I can aim for the full complement. Also if I ease into this more gradually, perhaps I can avoid the potential bloating problem. The other possibility is that I can increase my feeding rate but based on past experience I am not optimistic about that possibility. My conclusion, take it slow and see what happens. The bottom line is, I am not losing at the current rate of feeding so there's no big rush to get those extra calories.

My next appointment will be in October some time so that gives me a couple of months to work on the new regime. Overall, I'm feeling pretty good about it.

Canadian Health Care

The majority of people visiting this site are our good neighbours to the south in the United States so I wanted to post this in response to a video I was just made aware of in which a Canadian, .Shona Holmes, is interviewed on Fox News. Apparently she was recruited by conservative interests in the US to speak about how our health system is a failure.

This video is full of inaccuracies and leading questions and some just plain ridiculous statements. For example, this woman did not have a tumour, she had a cyst. I suggest that the word tumour was used because the dramatic effect is more powerful than calling it a cyst. Shona Holmes also says that our system is not free because we pay for it with our taxes. Well, duh, this statement alone shows how ridiculous her whole argument is. Of course we pay for it with our taxes but it's a darn sight cheaper than paying for private health insurance or worse, paying $100 000 for surgery at a private clinic as she did.

My own case is evidence that our system does work. I have never paid one cent for any of the medical expertise I have received. I currently see two specialists, a rheumatologist and a GI doctor on a regular basis, plus my GP as required. In June I spent the night in hospital as a result of my fall and it costs me nothing. I see a physiotherapist weekly and, again, my visits are covered by the health care system. Yes I pay taxes so I suppose that I pay indirectly but it's a great trade off.

And then there's my medication and formula which come to over $2000 a month. I pay $120 (based on my income), again not a bad deal. I could go on, but I think you get the idea. I get the best care possible and it's not costing me an arm and a leg nor do I need to go out and get private insurance at an outrageous price and for which I would probably be turned down anyway because I have a progressive chronic illness which is expensive to treat.

So, if you should happen to see the ads run in the US featuring this woman please keep in mind that she is one person out of 33 000 000 and the rest of us are pretty darn happy with our system. Is it perfect? Of course not, but it sure beats the alternative by leaps and bounds.

Update-July 31/09

Heard a news item on the radio this morning re this woman's case. In an interview with a medical expert, it was stated that no one has ever died from this type of cyst as it is comsidered benign and if it did become malignant she would be scheduled for surgery immediately. More evidence that this woman is definitely not credible. She is apparently now preparing to sue the government over the matter. That explains a lot.

Indulging Myself

Well, it's been almost four weeks since I began the new feeding formula so thought I'd better add an update, albeit a brief one.

The feeds themselves are still going well. I have had a couple of minor incidents of reflux but it was my own fault as I've been getting careless about eating in the evenings. For the most part though I've gotten away with it which is encouraging.

My weight remains the same. The other day, I realized that I'd been enjoying a Guinness (Irish beer) each day when I was gaining the weight so yesterday I went out and bought a dozen. There is anecdotal evidence that it helps with digestion but I don't know if anyone has ever done a study to verify this. Whatever the case, I enjoy it and the small bit of alcohol doesn't seem to irritate my GI tract so what's to lose? I know that it used to be prescribed in the hospital for people with weight maintenance problems and it was also recommended, in moderation, for nursing mothers. Of course this would be taboo nowadays but, hey, hundreds of years of Irish tradition can't be wrong can they? And after all I am of Irish heritage so I'm just being true to my roots. That's my story and I'm sticking to it damn it.

GI Update

As I mentioned last time, I am now on a new feeding formula and to put it briefly, things are going well. In fact, they are going exceedingly well so i wanted to share my experience here in case it can be of help to others.

I am now on Peptamen 1.5 and ingesting 1000 ml, or 1500 calories, per day. Previously, I was using Jevity 1.2 which came in 1500 ml bags but I was only able to handle half that each day so was only taking in 750 ml (900 cal.) and even that was causing a great deal of discomfort in the form of reflux, bloating and feeling nauseous, although I never actually brought up. This also meant that I was taking in very little food orally because eating simply did not appeal to me. Well, with the Peptamen, I not only have none of the side effects but actually am feeling quite hungry and have found myself eating substantially more throughout the day. And I have gained about three pounds so am almost back to the 110 I weighed a month ago. All of this in only nine days. From my understanding, the main difference between the two formulas is that the Peptamen is predigested so my gut doesn't have to work as hard to get the nutrients from it.

I have only made minor changes in my medication, taking two instead of one 20 mg dosages of Pariet and making sure I take three 10 mg doses of dom peridone each day. The only glitch I ran into was with the feeding tubes. After making numerous phone calls with everyone telling me something different, I finally discovered that the Kangaroo pump and spikes I was using would work with the Peptamen, I just needed to use an adapter which is supplied free of charge by Nielsons who makes the Peptamen.

And so, initial results are encouraging and with luck things will continue to go well. I remain guardedly optimistic.

GI Issues

Me emceeing at our concert

Yesterday, I saw a new GI specialist and am very pleased with the results.

First a little background though. Weight maintenance has been my major challenge since the onset of this disease. In January of 2008 I reached a new low of 93 pounds which, on my 6' 1" frame means I was basically a bag of bones. I managed to put some of that back on but couldn't get past the 100 pound mark so agreed to have a feeding tube installed in April, specifically a G-J Tube. I was delighted with initial results as by the end of June I was up to 110 pounds. But I seemed to plateau there and then started having problems including nausea, bloating and reflux. Feedings were cut back to half and I have stayed there until the present. This has resulted in no more weight gain but at least I have maintained the 110 pounds. About a month ago I noticed that bloating, nausea and reflux were becoming the norm again. And thus my visit to the gastroenterologist, Dr. Howard.

My first impression was that this was a very empathetic and gentle man and his actions proved me right. The second thing that impressed me was his thorough knowledge of his field further complimented by his clear and concise explanation of my condition and the options that were open to me all of which he put in writing for my benefit. By the end of his explanation we had been joined by two interns and finally a dietician.

The result of my visit is that I will be going on a completely new feeding regimen with changes to dosages and types of medication and I am very optimistic about the future. I have said it over and over again that if I could just get past this weight thing I would be one very happy camper. Scleroderma has affected my life in numerous ways but I no longer see any of those things as affecting my quality of life on a day to day basis as I have learned not only to cope with but overcome each one as it arose. The exception, of course, is my weight and I'll keep you posted here with periodic updates. I expect to receive all the details soon so will post early next week for those interested in more details.

(Chris Trowell, Bill Durst & David Wahl performing at our concert)

Jill Martin, a member of the London branch of the SSO put this together so I've asked her permission to post an edited version here. Thanks Jill for your enthusiasm and support in this project.

THANK-YOU!!!

We want to Thank everyone for coming and helping Us expand the Awareness of Scleroderma. The money raised at this Concert will all go to the SSO. We want to thank the Bands for donating their time and talents and to the Eastside Bar and Grill for the free use of there facility and to all the Staff. And thanks to all that have helped with the Concert and bringing this idea into reality .I hoped that all left enjoying this event and also took with them with a much greater understanding of this disease SCLERODERMA. Most of all a bit more knowledge of what we as patients deal with.And that some might just be able to recognize someone with Scleroderma now and can now say YES I’ve heard and know something about that disease.

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

LAUGHTER AND MUSIC. Laughter and music have been proven to help many Chronic Diseases. It raises your heart rate and can improver your immune system and lower blood pressure and even reduce pain .Most of all one gains a Positive Attitude. Laughing reduces stress and promotes relaxation. "Laughter Can The Best Medicine." Several Universities In the USA are doing studies/surreys on Laughter Therapy. Music can sooth the Beast." BUT It also may be able to help your body as well. Studies have shown that listening to Music We Enjoy actually can cause tissues in the inner lining of the blood vessels to dilate improving blood flow. Listening to Music you Enjoy can expand blood vessels by as much as 26% and in Contrast listening to Music you don’t like can make you anxious and cause blood vessels to shrink thus less blood flow.. Both Laughter and Music have been found to have similar effects on blood flow through the body. There was plenty of both at this our Concert . It now over and it went very well .We accomplished our goals of raising some very needed funds for SCLERODERMA and building some more awareness of this disease.........We had our trials and worries but in the end it all played out well.And building some more awareness of this disease and its problems for us as patients. It was well attended and all seemed to enjoy the whole event. There was a 10.00 cover charge that was totally donated to our cause.

The day was perfect---Weather wise-- The sun was out and many attendees enjoyed the outdoor patio as well as the cool air in the Bar .People began to arrive shortly after 3:00pm and that put all our minds at ease. As we all worried and wondered would there be anyone but us volunteers and band members etc that would show up???HEHEHE.We had just enough time to put the finishing touches on everything as the first band warmed up and got ready to Rock & Roll. We were having some very talented local bands play that day Bill Durst , Chris Trowell Band ,Robbie Antone's Blues Machine . A great addition came at the end of the evening with a big finale of all the bands playing together in what they call a JAM.It brought the house a rocking to everyone's delight.The bands donated their time and talent to us that day and all gave 110% From the sound system and all the bands voices and instruments the whole Bar sounded like a big fantastic party A HAPPENING EVENT!!!

The owner operator of The Eastside Bar and Grill also graciously donated the establishment for our event.The staff worked very hard all day and with a steady flow of ppl the staff was definitely kept busy serving drinks to those that were hot and thirsty and to those that were hungry from the yummy smells coming from the kitchen.I had some of their fries they were hot enough to burn you tongue and so crunchy that they were addictive to eat.Needless to say a whole basket of fries were finished quickly at our table.HEHEHE

We also had many prizes donated and had draws during the breaks. We had gift baskets of>>Fruit and Candles and Bath Assessories and Pet doggie and Kitty Treats....Gift Certificates from a Hairdresser...Bowling night at Fleetway....Kingsmills one of London's oldest Dept Stores ....Wine glasses....And several corn/oat heating bags....T shirts and Snow fleece tops....And Tickets from 102.3 BOB FM Radio to our Annual Blues Festival In The Park.

We also had three 50/50 draws.The door prize was a Framed Print (click to see) by Bill .It was a composite made up of bits and pieces from his Graffiti Series of London Ontario .

A SPECIAL ACCOLADE MUST BE GIVEN TO Bill's family and friends and all the great supporters he had behind him . They all worked endlessly and with great enthusiasm from the beginning stages of this idea all the way to its wonderful ending.