Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS and Appetite

Hi everybody I have been gone from the boards for quite awhile and decided to check in with my fellow AS sufferers. I have had AS since 1980 and am on the following meds. Morphine SR, Statex for breakthrough, Voltaren Sr, Flexeril, Previcid etc. My problem is weight I,m 5' 10 and my weight is down to 138 at times it has been down to 120. I just can not eat food taste terrible to me plus have difficulty swallowing. They say my espogus(not even close in spelling eh} is inflammed from as. I am currently drinking Mammoth 2500 which gives you 1250 calories per glass. I wanted to know if anyone else has had problems with weight. My Doctor keeps saying don't worry drink your supplements. It is better for your joints not to be heavy. Thats find but summer is coming and it is really embarrising to walk around in teeshirts. So look forward to hearing from anyone else.......Thanks Rick

Hi Rick,
I also am having problems with weight. When I was first dx I was a healthy 130 or so lbs. I am now at 117 lbs. I am having to stuff myself twice a week and I mean STUFF myself. I used to follow the low starch with chicken and fish. But have had to incorporate beef back in. I feel too weak without it. For some reason after my son was born eight months ago my body started craving more protein. So I am going with it. I have a bad gut and it seems to be under control due to the low starch and successful treatment of the pylori but my back is still flaring like no one's business.

I don't take supplements so I am sorry I have no suggestions. I also have trouble swallowing sometimes. I am on aciphex for the GERD. Would get nauseous and it has helped me very well. I am also on Soma and Bextra when it gets real bad which I feel is around the corner with this current pain level. It seems to be common with lots of As sufferers from what I have seen in past responses. I need to ask my Rheumy when I see him on the 27th. It's also hard to eat when you feel so crappy. I have to force myself. I never in all my years thought I would be eating more just to balance out. But when you are in pain food is not as appealing as it used to be.

Take care...and hope you get some good suggestions...


Buggy

Thanks Buggy, your info was very helpful especially the swallowing part its good to know other AS'ers have had that problem. Your right about eating when your in pain and also the lack of appetite due to flareups. I will talk to my Doc about maybe changing or adding something to my Previcid. By the way great pics of the Family.


Rick

My appetite was terrible whilst on NSAID's. I was frequently very depressed as well.

Well I was forced off NSAID's due to the side effects, and pursued alternative measures. And although my appetite is no problem now.. I still am unable to put on weight. So I have been trying to understand this problem...

My thoughts:
* Try taking digestive enzymes and probiotics (Acidophilus etc) about half an hour before eating. I take them with about 2 glasses of water to help them past the stomach acid. Since our guts are generally in bad shape, the Enzymes are used to help us gain the nutrition from our food. The probiotics improve the health of the gut.

* Try doing weights. I figure muscle tends to turns to fat later on.. the people I know who used to do weights are now really chubby and overweight. I think it stimulates appetite and digestion.

here is a post from George on weight gain :
https://www.kickas.org/cgi-bin/w3t/showflat.pl?Cat=&Board=support1&Number=146923


"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy

A quick note on the enzymes and the probiotics that I didn't include in the Probiotics thread. My gastroenterologist said that I should take both the enzymes and the probiotics during or just after eating so that the acid wouldn't be an issue.

So, I take the enzymes and the probiotics with and after my meals but after having done it this way for a few weeks, I suddenly remembered that I am one of the few people who doesn't have to be concerned about the stomach acid. I don't have any stomach acid as my last stomach surgery included a vagotomy (cut the vagus nerve going to the stomach).

For those people who still have a somewhat normal stomach where acid is secreted when you start to swallow your first bite, you can still take the enzymes while you are eating IF you buy the enzymes with the ENTERIC COATED capsules. The same thing goes with the probiotics. Get them in an enteric coated capsule and all 6 billion of those little bacteria will arive in your gut and ready to go to work.


George

Old George thanks for all the info, I also read the previous post about weight gain. I am already using the Mamoth 2500 but my instructions say 4 scoops per day. Now the little problem i have is it is 50 per cent protein and only having one kidney[ removal unrelated to AS ]. I'm wondering if it can affect my other kidney....Also Old George have you noticed any problems with bowels using the Mammoth 2500.....I use stool softners but still feel like I have rocks in my bowels.....Anyway thanks George I will look into the enzymes and probiotics.

Good question re possible kidney implications. This is the first time I have heard that high protein could be a problem with one's kidneys. Check with your Doctor on that one.

Since I started the Mammoth 2500 just before Christmas, I was having a slight to medium amount of constipation and haven't found that the Mammoth has made it worse. I did try stool softeners for a short time and my Doctor suggested I change to Meta-Mucil as it didn't become as habit forming as other laxitives.

Then my dear wifey suggested that I take a couple of dried prunes at breakfast and two more at dinner time. Works well for me now, less expensive then the alternatives and non habit forming.

Please let me know if you hear anymore about Mammoth/high protein vrs kidney problems.

George

Will do George, I'm not sure about the high protein and kidney function so that one will leave to my Doc. But the prunes are a good idea, I will try taking them. So far I,ve had Chocolate and Strawberry Mammoth, don't care much for Strawberry though. Have you tried Bannana or Vinilla yet. Thanks for the info.. Rick

I quickly tired of the Banana and thankfully, we had only bought the smaller container of that. I then bought the big pail of the Vanilla and I like that. If I want a change, I just get the blender and add some real banana or maybe half an orange with it. Hmmm, wonder how pureed peanuts would go with it.

Be adventurous, it's sometimes the only fun we ASKickers have.

George

Never once thought of adding things that is a great idea. I made the mistake of buying the big pail of strawberry because I liked the chocolate. But I can give the strawberry to my daughter she wants to gain a little.