Intussusception, Aspirin, and Ulcers: Lessons Learned

I hope everyone will read this and take a couple lessons from it.

Well, first, here's the story:

My abdominal pain became so severe and began to travel upward and scared me enough that I finally listened to my friends and  my husband, who for days had been urging me to go to the ER. We went on Thursday evening and gave the ER docs a real puzzle.   They ran another ct scan - which, I was later told, looked better than the one from a month ago.  Will explain shortly.  I  was admitted to the hospital at the advice of the on-call bariatric surgeon, whom I met the next day.

By a stroke of luck, she had studied under my own surgeon, about the time I had my surgery in '06, so she knew exactly what  my insides were going to look like before she ever took a look.  Regarding what looked like intussusception on my previous ct  scan: this seems to have worked itself out, as, she explained, it often does.  Apparently, everyone panics when they see that  - and it can be dangerous and must be followed up on - but it does often work itself out.

She did an endoscopy to look for ulcers on the pouch.  Not finding any, she strongly suspects that I've developed an ulcer on  the "remnant stomach," that is, the part of the stomach no longer in use on my digestive system since WLS.  

I've been out of work and un-insured for some time.  When I lost my insurance and money got really tight, I couldn't make  follow-up appointments with my surgeon any longer.  And I became so involved with fighting Lyme Disease and all that came  with it that I let myself fall off track.  I remembered protein and drink a lot - how I should eat, basically, but everything  else - all those little details - I had been so diligent about early on?  Well...I just forgot. Dealing with so much else  every day...and when a doctor suggested a few months back that I take a low dose aspirin daily, the only thing that came to  mind was the blood clot I had in my lung a couple years back and I thought: sure, good idea!

It wasn't until the other night, just before I was admitted, when a bariatric surgeon asked if I had taken this or that or  aspirin that it came to me, clear as a bell: I CAN'T TAKE ASPIRIN!

So, 2-3 months of low dose aspirin daily has likely burnt a hole in my unused stomach.  The surgeon can't be 100% sure of  that unless she actually goes in surgically, which she doesn't like to do unless she really must.  But the fact that I took  aspirin and the kind of pain I described in that location make it a pretty good bet that this is the case.  She is treating me with a strong  prescription antacid in high doses.

She had all the nutritional labs done for me and we will discuss in follow-up.  I have this hospital's financial assistance  plan, which provides a clinic, which she gives time to, so she told me to make an appointment to see her there.  She said she  sees a number of bariatric patients who fell through the cracks after losing their health insurance, thus losing their way.

I'm going to have this additional pain to deal with for at least a couple more months, which bites, but at least I know it's  not going to kill me.

The surgeon mentioned that their work is often sabotaged by well meaning docs *****commend aspirin/NSAIDs to bariatric  patients, not realizing what they are doing to them.  And she mentioned too that bariatric patients often are sent home from  ERs when docs can find nothing wrong; when contacted, she will normally want to see that patient herself before letting them  leave.

There are various things I need to re-learn.  Being a bariatric patient is not just about eating the right things. I need to  go and dig out all my old paperwork that came with the post-op diet and study it.  Know it.  There's a lesson I learned...I  need to learn the old lessons all over again.

Intussusception...learn the symptoms and tell your surgeon if you have any.  From what I've read, it seems to happen to folks 5-7  years out.  I had never heard of it.  Don't panic if your ct scan results show this, but do, absolutely do follow up on it.

Always try to go to an ER that has a bariatric program attached to it.  

Keep a list of all the drugs you take, including otc and supplements.  Bring it with you to the hospital every time.  At the  top of the list, it wouldn't hurt to jot down your wls date and type of surgery.  If you're sick or dealing with pain or  whatever else, take your temperature regularly, so you have some idea how to answer when they ask, "Have you had a fever?"   (For some reason, docs don't seem to accept the results of my mom's lips to forehead measurement of temperature taking :-))   Answer their questions, all of them, as clearly as you can; there are reasons for all of them.

Educate your doctors about the special needs of bariatric patients.  They are thinking of your well being when they prescribe  or recommend things, but if you know it's wrong, you must gently and with diplomacy remind them that you've had WLS and  therefore can't take aspirin, etc.

Sign only what you feel comfortable signing.  The on-call surgeon I saw in the ER had me sign a consent form, just in case,  for some kind of scan they might want to do.  He explained what it said, the risks involved, etc, and that if they found a  problem, they might have to do "a bowel resection, and on very very rare occasions, ostomy."  "You mean the bag?" I asked.   He confirmed this, so I said that I wouldn't agree to that. Personally, I've always felt that if something bad was found, I  wanted to be awakened intact so that I could make an informed decision, get 2nd, maybe 3rd opinions, and so on - whatever the  issue!  He looked surprised, but didn't get angry.  He just re-did the form with "ostomy" omitted.  

A nurse once explained to me that surgeons are trained to preserve life and will do so when the option exists.  If you want  them to do something other than that, you are responsible for being specific about it.

Stay on track.  Every so often, get out your bariatric info from those early days and read it again.  Don't forget that you  are different now.  Your insides are not like other people's.  You are different and different rules apply.

Oh - at the hospital, if you must go, try to keep you sense of humor.  Everyone there is under pressure.  I've always ended  up making people laugh at some point, which just makes it easier for everyone.

Finally, for the love of all you hold dear, do NOT take aspirin!

I hope the lessons I've learned and tried to share will help some of you from making some of the same blunders.

Wishing you all good health and much joy in 2013.

Lisa

WOW. . .  Lisa, first of all I am glad you went to the ER and 2ndly, thanks for the information. . .  last year I had a heart scare and they suggested I take a low dose baby aspirin if I had the pain return, until I had gone through the necessary testing. . .  I told them that I was a WLS post-op, they told me to take it with food and an anti acid and ONLY if I needed to.  But the lesson I've learned is that we have to realize our bodies are not NORMAL, which I also want to add here, that over time, I have read and heard of some people who fall off their vitamin regime, another dangerous folly.  While doctors are well meaning, oftentimes, as hard to believe as it is, they are not knowledgeable in our rerouted insides and don't know how to handle us.  So when choosing a doctor, it is important for us to know the rules.  On occasion when my pain is really bad I take Aleve, but again, sparingly and with food, as there are times nothing else relieves the pain. . .  Just glad to read you are now being treated as you needed and learned the lesson.  Please keep us updated and be well!!!

Hugs, Laureen

Thanks for the well wishes, Laureen, and thank you for adding your good advice here also.  I'm glad you are well now and sorry you are still dealing with pain.  

Yes, that's the heart of the matter: our bodies are not normal.  We are different.  We must remember this and educate our care givers - because, often, nobody else has!

Hugs,

Lisa

Lisa,

     Thank you so much for taking the time to let everyone know what happened and how you are doing.  As someone who is 3.5 years out I don't think about possible complications down the line.  I also am without health insurance but try very hard to stay on top of my vitamins and iron.  Found out the hard way last year that ignoring them made my depression a lot worse.

     I am glad that you have some answers and have found a bariatric surgeon who will work with you.  Can't imagine the anxiety you have been having over this.  I pray that 2013 will be a better year for you health wise.  Please continue to keep us posted on your journey.  Take care.

Donna

Always happy if I can help, Donna. And that's what we're here for, right?

All the best,

Lisa