Disease and Regain Need LTPO

Boy oh boy do I need some help from Long Term Post Operation peeps (LTPO). No pity, and only candid replies, please???

I had rouen-y March 2004 and was down well over 200lbs.  Then in August of 2009 I developed Rheumatoid Arthritis*.  Since that time my RA which is incurable has also resisted every single treatment.  I'm now at a point that I will have to try drugs in the trial phase if I want to seek further treatments to ease the pain, damage, swelling, and immobility that RA has left me with. Along the way I have also developed Fibromyalgia* & Chronic Fatigue Syndrome*. I've accepted my diseases, but what I cannot get over is my regain.  Up until the day I triggered my first flare I exercised daily and did fairly well with the surgery.  

Fast forward to now and I've had an almost complete regain.  So the RA & Fibro cause pain, and exercise with CFS is contraindicated. Meaning, I will only get worse if I do more than the smallest of steps.  I'm talking 30 seconds up the hall and back as "exercise".  I was swimming for almost 2 hours a day before.  I'm also on and off prednisone steroids for the RA and will likely be until there is a cure.  With steroids I feel like I just swell up like a water toy that grows overnight!  Naturally smaller would be better and less painful for the RA but  to what end?  

So, I guess what I'm looking for is other's experiences being so far out.  Did you have a revision? How did it feel? Hurt as much as the first time?  Was is more or less successful? Recover time?  Did you try to restart your losing by going back to your post op eating plan?  Did that help at all?  How was your surgeon about the revision? How was insurance?

My eating isn't the best and that's due to my inability to cook myself and yes food is a comfort when after I got sick I lost my house, husband, career and most of my friends.  My eating isn't near as horrifying as it was pre-op, but it's certainly not that of a 2-5 year post op person either.  I wonder if going back to high protein low carb protein shakes 5 times a day and 1 healthy meal will help shrink my pouch back down.  Or...am I too far gone? Is that too drastic? I refuse to feel sorry for myself as I know I control what goes in my mouth, but at the same time, I know I felt so much control with exercise.  Logically I know that exercise is only 30% of the key, but now that 30% is gone...I have to really buckle down without making my body backfire.  I have after all put it through so much*.  

I'm pretty confused and upset about this whole mess, but I know I have a tool that I want to use for so many reasons.  I want to be healthier, but I also know that I will not be back to mountain climbing ever again.  I have started following the rules closer again, BUT I'm really scared rules alone aren't going to do much for me...I have a stoma that isn't magically going to shrink.  So, please, be candid? Disease is part of it, rules and breaking them another...what would you LTPO'ers do?

Thank you in advance, 

Sarah

**

Rheumatoid arthritis (RA) is an autoimmune disease that results in a chronic, systemic inflammatory disorder that may affect many tissues and organs. The immune system is attacking the body as though the body is a disease. 

Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety.

Chronic fatigue syndrome refers to severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions.

*Lastly, there is a theory out there that those who had extensive dental work or WLS ended up with RA. I had both at the same time.  Literally 60k worth of work on my teeth over a two year period right after surgery.  I don't know that I believe it, but it's weird that I have talked with 7 people that had the same thing happen. 

A lot of people swear that going gluten free.. (100%gluten free) really helped that with symptoms of RA, CFS, etc. 

I know that if I eat gluten I am in pain. 

RA and some other autoimmune things may be related to gut health - and since WLS messes up with our guts -it makes sense our body gets "crazy".

Thanks for the advice. I have never gone gluten free, but often I dream of vegan. Typically, soriatic arthritis triggers from gluten and I asked my former rheumatologist about it and he said it won't help the RA. Then again I can't think of a single nice thing to say about him lol. I'll be sure to talk to my RA doc about gluten Wednesday. If nothing else in sure it's healthier than my apples and cheese mainstay meal now. 

Do you find it hard to prepare gluten free meals? I love cooking but physically can't sometimes so that is a factor for me. 

For now I made an appointment with my surgeon for the 20th to talk revision. 

Hugsnotdrugs 

Sarah 

I like to cook I just had to find ways to avoid gluten. Cooking is not an issue. Eating out is.  

I cook and bake.  

In addition to gluten free - I also had to eliminate dairy (cheese, yogurt, milk butter) and any soy.. sue to severe allergies to them. 

The dairy was real challenge. But I adapted.   do I miss it? or yea.. but I don't like getting the side effects from the allergies. 

Also- due to IBS-C I had to eliminate a lot of other foods (FODMAP diet - google that)   I can have some of them , but not all and not a lot (maybe a bite?) I can't eat most raw veggies or fruits.   I can tolerate some cucumbers,  pickles, some tomato,  cooked spinach and other greens, zucchini or squash, and green beans.  Same sauteed peppers are OK also (not too much). Due to RNY - and severe RH - most grains (even gluten free ) are no-no for me, as well as most starches. 

I still can eat good food and cook great meals.   I learn to concetrate on what i can do and what I can't.  

I love some nuts, nut butters,  eggs, meats and fish, shrimp.. I even found some vegan (no soy, dairy or artificial flavors or sweeteners) taht taste very decent (at least to me) 

I bake my own (weird) protein bars.. ( i call them cookies). i can whip up up to 4 dozen in one-2 hour. (4 dozen is 2 dozen servings..). 

I don't use recipe.. I just put things together - taste and it it taste good - bake it in small batches.. if it does not- I keep adding this or that until it smells and taste good. I am trying to use and utilize the vegan protein  powder I bought that is really not drinkable (nasty smell or aftertaste). what I have at home changes - so the recipe never stays the same... 

I would be lost if I could not cook for myself.. (and BF and friends).  I work full time (and then some) but once in a while (like last saturday) I cooked for 4 hrs non stop - but we have a lot of food prepacked and frozen. Just take out - reheat and eat.. 

I learn to do simple things: i.e. I like thai - and some ready to use sauces are god enough for me - I get a jar, warm it up, put my fresh or frozen shrimps or chicken and let is simmer until ready.  

Same with pasta sauce - - I buy as natural as I can get - covern my chicken with it and let is simmer (or use a crock pot). I may throw in some extra veggies.  Food does not have to be complicated to be tasty and good for us.  

Try to experiment a little bit. 

I don't' have lots of time to cook - that's why when I cook - I really cook.. (then portion and freeze) or buy - semi-homemade type of food easy to prepare. Crockpot is my savor for a lot of meals. (example: chicken, any cut up veggies - or frozen veggies; top with some tomato sauce or even a jar of salsa.  Let it cook for 4-6 hours. Portion and eat.  One meal - proteins, veggies...( I also  add some fat if the meat is too lean)

Already baked chicken.. - thats a meal for me for 3 + days with at least 2 meals each day.  ( just add some veggies- veggie steamers are great) 

Great tips, thanks!  I didn't think Crocpot mostly because I was thinking that liquid eating like post op might trigger some weight loss. 

I can't do even an hour cooking , but I can get help when needed. I used to live by once a month cooking.  I know a lot about FODMAP as I live with someone who has IBS.  So I'll have to see what might work. 

After much research today, food isn't my problem per se, it's quantity. Even though I eat very little compared to non wls folks, I eat too much for me and this immobility debacle I've got going. I would agree though, less gluten would be worth checking. 

On a side note if you boil flax seed it releases it's protein in a wet goo. This is a way around that vegetarian sprinkle crap. It offers protein, moisture and works much like applesauce replaces oil in a cake, but for protein like eggs, or soy. 

Hugsnotdrugs, 

Sarah 

Great points.  I use only freshly ground flax now - because if you grind it and then don't use right away - it may become rancid - toxic. I use flax meal as as filler in my meatloaf, meatballs.

BTW: crock pot - once things are cooked, I strain most of the liquids.  Then can add that if needed - but most likely I will drink that as a very rich broth - instead of overpriced G2 or other "electrolyte" chemical drinks. It it am infusion of mineraslks, vitamins and all the good stuff.  A 12-16 oz of drink like that replaces a one snack.  (Btw- if using higher fat foods - I may defat it - or not. ) I like my fat.  Natural good fat keeps body very happy, and lubricates the joins. 

Limiting carbs limit my insulin output and my hunger. But we need fat because too much proteins can turn into blood sugar. 

I sure hope you find a way to deal with regain.  Revision to DS may be your option.  

Hello,

It sounds like you have a ton of stuff going on.  You say that cooking is not the issue but portion control.  That is a biggie for many folks so you are not alone.  What I find useful is using smaller plates, bowls, glasses.  Try that and see if it helps.  You may want to google search foods that heal.  There are many foods out there that have healing properties.  Also, if you live in a large area, you may find a holistic practitioner that may have some herbal options for you to try. 

Also I see that exercise is a big issue for you.  There are some really good chair exercises you can try.  Research some of those as well.  I wish I had the magic solution to your issues but I don't.  All I can do is direct you in different directions and just maybe you will find help.

Lastly, you may want additional support from a Life Coach.  They can help you develop tools to use against those triggers and obstacles that encourage bad food choices.  The mind is very powerful and controls everything.  That is the battlefield.

Ok, well I know this isn't much help but do take care of yourself and get the supports you need.  Huggzzzzz

Hi Sarah,

I might be going in a different direction here but I also had RNY and tomorrow will be my 5 year anniversary.  I originally had lap band and it never worked so I had it removed about a year after it was placed and then about a year after it was removed revised to RNY.  Both were painful surgeries but RNY was worse to me as it was much more traumatic to my body.

About two years ago I had arthritis in my right basal joint thumb area and had it removed and rebuilt due to the break down of the joint from steroid injections.  This was osteoarthritis not RA.  After I was in a cast for a couple months started PT and that's sort of when I remember my symptoms first beginning.  I would get headaches, low grade fevers and a fatigue like I've never had before and napping never helped.

I began by seeing my primary who couldn't figure me out but ordered blood work and said it's possibly related to my RNY surgery.  I didn't really ask him what he meant because I myself didn't see the relationship.

I also saw my bariatric group to make sure I wasn't deficient in anything and was a bit low in iron and even tried iron fusions but they made no difference.  Then began the barrage of specialists trying diagnose me.

I saw the:

neurologist

rhematologist

gastroenterologist

ENT

allergist

eye doctor

pulmonologist (on CPAP machine)

dentist, in case it was TMJ related

All in all I spent a lot of time and money seeing these doctors and had many redundant lab tests done and many scopes and scans and x-rays done.

The one thing that seemed to point a finger to the RNY as a possible cause of all my symptoms was the fact I had my colonoscopy and endoscopy done and lesions were found in the small intestine where it connects to the new pouch.  I go back to see this gastroenterologist in a couple weeks to discuss this but when he found these he biopsied them for many things and one was celiac disease.  I also had a blood test for celiac and both ended up negative.  Also he found my staple line to be in tact which is a good thing.

During the past year I spent some time researching this because after all we are our own "advocate" for our health and there is some information out there that there is a possibility that someway somehow bacteria is getting into our bodies, through the bloodstream and our bodies are fighting it like an autoimmune disorder.  Not sure exactly how this occurs and have also heard that the "blind" stomach could be producing it.  I believe the only way to figure this out is to do a biopsy of the blind stomach.

I have now developed trochanteric bursitis of both hips and had a steroid shot in one side and it's not "taking".  This bursitis has made it difficult for me to walk especially up stairs.  I now use a cane and am very sore.  It is my latest "symptom".  I also tend to flair up in my hands, tendons and things.  I've developed bone spurs in my back.  So basically I'm beginning to feel like an 84 year old woman and not the 54 year old woman I am today.

Prior to RNY I had energy and could walk on the treadmill and actually enjoyed it even though I was 50 lbs heavier.  I haven't been able to walk on the treadmill in over a year due to the fatigue first and now the bursitis.  As you say with your CFS the more you do the worse you feel or you'll feel it the next day!

Anyway I don't know for sure if this hunch I have on my own situation is related to my gastric bypass but if it is I may have to look into a take down and I know that is not an easy thing either to have done or to find someone qualified to do it.  Even if I do find someone who can if it will solve the problems or if it's just too late.

I connect it to my gastric bypass because I started keeping a journal and when I ate sometimes within a half hour or sometimes within an hour I would start to feel sick.  It was almost like a head cold of sorts.  I would get a low grade fever and just feel like crap, something like what mono feels like if anyone is familiar with that.  It doesn't matter if I eat protein by itself, or a grain or fruit or a candy bar I get the same reaction.  Now on top of it all I have the hip/back issues and I'm finding my quality of life has really gone downhill.  If it is related to RNY I need to know and I'll want to get this fixed.  If not like you said I will try to live like this but not if I don't have to!

There is one more thing I should add if not brought up by any other posters prior but you really need to find out why the weight gain and don't assume it's only due to inactivity because of your health problems.  You should see a bariatric doctor or gastroenterologist to make sure you don't have a problem with your staple line or some other issue related to your gastric bypass that could have failed.  They should do scans on you and you should make sure they follow up on that!  Good luck to you, I know your situation is not exactly the same as mine but there could be some similarities.  Wish you well, Nanook.