List of comps. after long term (89') BPD (Long Loop RNY) reversal

Hi Y'all,

Just thought I'd add a list of bummer side effects I'm now plagued by years later following "reversal" of BPD in 89' (no DS involved, the BPD was performed in 85');

Osteopenia - Will soon have IV Reclast.

Impaired motility - Food moves through the GI tract ever so slowly.

Reactive hypoglycemia - Causing tachycardia (up to 120 bpm) and shakiness/weakness.

Bloating/flatus - Enough to fill the Goodyear blimp and clear out a stadium full of folks. This should be classified as a weapon of mass destruction.

SIBO -  Small intestinal bacterial overgrowth syn. I still have a blind loop.

Intermittent burning in the throat - I have very little stomach left so, I assume this may be bile reflux...

Joint pain - Docs are calling this "Unspecified Connective Tissue Disease".

Infrequent runs - A couple times a month, at times more.

Bad skin - Fragile, dry, cracking,  and breakouts similar to acne.

Insomnia - 3 to 5 hours of sleep per nite.

Frequent URIs - Have had at least 5 already this year involving junk in the chest and sinuses, up to 104 temp.

Fatigue - Duh!

Hemorrhoids - In the absence of runs/constipation (internal/external).

Swollen, painful salivary glands under tongue - Cyclical, not Sjogren's Syn.

Anemia - Comes and goes.

High Vit. B-12 -  Without supplementation (it should be low). Also, some other weird lab values.

Oh, TMI, huh? There's more, but these are the worst ones.

I am a professional and am now only able to work PT due to these symptoms.

I have consulted so many other docs, some just assume I'm doc shopping (without reading the med. records).

There's a paucity of info re the condition of long term WLS "reversal" pts...  Some WLS c a n ' t be completely taken down. Once you monkey with your guts, sometimes there's no going back...

At the end of this month, I'll be undergoing a DBE (double balloon enteroscopy) performed at the only facility doing this procedure on the west coast. It may be able to get into areas other scopes couldn't.

WLS digestive tracts can't always be completely visualized (especially the small bowel and blind loop) by other procedures.

I really want to hear from those of you who were "reversed" and how you are doing now. What side effects if any do you have?

 I haven't had mine reversed but have been seriously considering it.  I have several of the side effects you have listed.  The one that most struck me is the blind loop.  They have diagnosed me with blind loop syndrome and took out about a foot of bowel last year.  I have been doing somewhat better.  But I am curious as to what you do when you have flare ups?  Any info is appeciated.

Stephanie E

Hi Steph.,

When I have flare ups, I get joint pain, skin probs., etc. I've also been found to have bacteria in the bowel. I've tried courses of meds including, Flagyl, Xifaxan (note: this med won't work unless it comes into direct contact with the bacteria), E-mycin, etc. They don't work well for me.

Think about what a blind loop is. It's a section of bowel closed off at one end that wasn't "designed" that way. So, flow can become stagnant and or bugs may grow...

Take a look at Blind Loop Syndrome on WebMD, PubMed, or other good sites like Mayo Clinic.

When and what WLS did you have, what was the reasoning behind removal of 1 ft of your bowel?

Get your surgeon to draw a picture of your entire GI tract so you know how your plumbing is connected and you carry that in your wallet with medical alert scribbled above it.

 I had my oringinal rny in December 2002.  My revision last August basically redid the short y portion of the rny.  They took out the foot of bowel thinking that would help the blind loop and the spasms that I get as a result of it.    It did for about six months and then back to the same old problems.  I get what I call a spasm in my gut and it feels like labor.  It tightens and releases.  Sometimes it only lasts for seconds other times its days.  They've tried different anti spasm medications like bentyl, levsin, and levbid.  When I get them and the meds don't help, I end up going to the ER.  I'm sure they call me a frequent flyer, but I have no choice.   i've built up a tolerance to so many pain meds already!

Most of my surgeries and my journey are listed in my profile.

Thanks,
Stephanie E

Hi Steph,

Your story sounds like mine. Yucky, huh?

I think I went to the ER at least 20 times!

Are you considering reversal?

The way you are now is no way to live... Even though I still have some bad side effects, I'm glad I had the take down. I'm still better off than I was with the surgery.

Ask your doc if you if you could have a partial obstruction, hernia and or adhesions. Persist until he answers you and orders lots of testing. 

If he's a putz, go to a second doc. Take someone with you into the exam room    

Best,

DJ 

Are you supplementing your shortages? Since your surgery cannot ever be completely reversed, you'd still be treating yourself AS IF you were still an intact BPD.

Seems like someone shoulda intervened with the correct forms and doses of supplementation long ago to prevent your suffering!

I'm a distal RNY, so same intestinal arrangement as you had if Bill Marcus did your surgery. If it was a Scopinaro procedure, I have a bit more intestine functioning.

There are things we long termers do to help ourselves that are outside the medical arena.

Thanks for your response.

I'm still treating myself like an WLS. I take supplements.                                                         

What I have what is now described like a Billroth II with very little stomach remaining.

I went to a UCLA M.D. nutritionist who knew nada... I even had some unusual tests performed (Amino Acids-plasma: threonine, asparagine, tyrosine, phenylalanine all low), (Organic Acids-urine: malic and 3-hydroxyphenylacetic both high) I requested these tests based on research. Rest of my labs are fairly decent except for low plasma carnitine. I had low vit D, iron I have since raised with supps. There is one really weird thing, high vit B 12 without taking any supplement. There are a lot other findings possibly unrelated to nutritional deficiencies.

When I show these results to docs, they quizzically stare at them and then say they don't know what to do with them...(especially re the amino/organic acids).

At the end of this month, I'll be having a Double Balloon Enteroscopy that may be able to transverse the blind loop and all of the small bowel. We'll see... ought to be fun.

What are you taking for vit D?

High B12. What's your folic? Have they tested MMA and homocystein? those can be tangled up with B12.

I can send you a list of labs, codes that help the docs order them, and the targets I personally like to see.

Do you have bile or acid reflux?

I take 50,000 IUs of vit D2 every 3weeks, and I'm always telling docs to order MMA, Homocys., folic acid, etc. According to their lab values, these are now normal.

I assume it's bile reflux since without most of a stomach, there's not going to be much HCL (or even intrinsic factor to convert into B 12). The B 12 should be low but it's high---weird or maybe due to SIBO???

My method for ordering lab tests includes culling research articles (via MedLine) and looking at what the bariatric surgery ctrs. are requesting. I get my docs to add anything else they think is good.

I'd still like to see what you have on your list though.

Thanks,
DJ

Shoot me a real email at [email protected]

We can fix your vit D in about 2 weeks, but the list I have includes dx codes, test codes and so on. Makes it easy for the docs.

Are they testing your other fat solubles? A, E, K, Selenium?

Yeah, see high B12 in the absence of IF or actual B12 is an indicator of "something else", which means I have no clue. LOL