Stoma check-ups

I've been stoma-tized since 2016. At that time my surgeon recommended I see him annually for the first couple of years.  In 2018 he suggested "occasional" visits with my gastroenterologist just to make sure everything remained functioning well. The gastro. doc suggested I undergo a "scoping" of my stoma just to make sure everything was okay. Has anyone here done this procedure? - particularly if there are no issues to report? Many thanks for any insight and/or recommendations. - Silveradokid.

I've had an ileostomy my entire adult life and I've NEVER, NEVER been told I should submit to a "scoping" just to make sure everything is alright.  If you have no visible, physical, medical indications of anything being wrong, if everything is working okay, I would be very, very dubious about the appropriateness of submitting to that, especially since you're six years into it now.  I don't mean to be crass, but it reminds me of a garage mechanic telling me that he should switch out some equipment on my car just to make sure everything is alright.  I've had a few garage mechanic-like physicians over the years... 

I am with Henry on this.  My feelings are, if everything seems to be okay why go looking for problems?  There are far too many docs out there “practicing medicine” these days.  

Many thanks, HenryM. You confirmed my suspicions. Seems unnecessary and only something that can create a problem rather than find one.

Thanks, Justbreathe, for the input. Quite agree with you!

Hi Silverado,

  Now hold on there Bobalouie!.....as QuickDraw used to say.  I hear what everyone is saying.......but the answer to your question depends on why you got your front butt in the first place.  Reading your bio it sounds like you had pretty severe Ulcerative Colitis.  UC and Crohn's are essentially the same disease and just differ by location......and one tends to become the other over time if not treated successfully.  Since your UC didn't respond to any of the treatments you tried it would really suck to find out it had spread to your small bowel, which it can tend to do. 

  That's why your Gastro wants to see what's what to keep ahead of any continued inflammation........since it seems your treatment options are like zero.  I don't agree with your surgeon needing to see you repeatedly unless you have some issues with the actual surgical portion of things........like abscesses or slow healing or a hernia.  Once your surgery has healed you shouldn't need to see him.  I'd make it a point to ask WHY he feels the need to see you again and again......ie, what is he looking for?  But the scoping thing is a no-brainer.  They use a very thin children's sigmoidoscope, sedate you, and you're done in like 15 minutes.  You won't even have to change your barrier.  And if they do see any signs of your inflammation returning they're buying time to come up with a better treatment plan this time around.

  I make it a point to get scoped every second or third year, because like you, nothing we tried other than prednisone, had any effect on my Crohn's.  And if it starts to come back.......I want to know it BEFORE I get the symptoms, because by then it's too late.  Your bowels need to get pretty inflamed before they start screaming for help.........so why risk it?  If I were you.........I'd scope away!  At the very least you'll have some piece of mind knowing all is well for now.  You've got nothing to lose but a day off work......and a lot to gain.  

;O)

bob

Thanks Bob. Good points. I'm just hesitant since everything has been going quite well. I've been seeing a dermatologist for skin conditions which have developed post-surgery and she has been keeping an "eye" on my stoma. At this point in time the gastro. doc. may be overkill. I'll give his office a call in the morning to discuss further. (PS - traveling into NYC from Long Island is far from enjoyable during rush hour). Appreciate the input! 

I totally agree with Henry and the others!  I would not agree to any medical procedure that was unnecessary, and if everything is working fine, why risk it?  It seems strange to me that this doctor would even suggest it.  

Terry

Hi T,

  Sort of depends what you consider 'unnecessary'.  There's no cure for Crohn's or Ulcerative Colitis, and it can affect you from your mouth to your anus.  But what's left of the bowels that they don't remove still has a very strong propensity to develop the disease, especially if it's the fistulizing variety.  For me they removed the bowel sections that they thought were diseased 3 times.......until there was basically nothing left to remove.  Each time they 'hoped' they 'got it all', but you never do. 

  I'm now on Humira (Adalimumab) as a precautionary drug, and I monitor my Humira dosing continuously to make sure I'm not building up any antibodies.  Cuz once that happens you're done using it, which only leaves Stelara, another immunosuppressant......and then I'm screwed.  Treating the symptoms rather than the disease is what gets Crohn's and UC patients in trouble, so the smart thing to do is keep ahead of it and know if something is brewing well before you start to feel pain.  So what would be considered 'unnecessary' to someone whose issue was cured by an ostomy is totally different than someone whose issue was a treatment to an ongoing disease.  You wouldn't tell someone who supposedly beat cancer that future screenings aren't necessary unless they see symptoms.....would you?  It's like that. 

;O)

bob

Hi Silverado,

  I hear ya......I made the trip from LI to NYC myself many times and you're right....it's definitely NOT fun.  And I know how you feel...when things are going good you don't want to upset that.  But waiting and then kicking yourself for waiting if something arises is a much worse feeling.........trust me.........been there, done that.  I'm now a BIG proponent of catching issues when they're small, rather than waiting until they're too difficult to deal with.  I think if you get scoped you'll see how simple and easy it is and really won't think much of it.  Not so much for the commute though.  Are there no good Gastros out on the Island these days? 

;O)

bob

Hey Bob. Actually there are some great gastro. docs on The Island. I had a great one here in Wantagh but my condition only worsened with each option he tried. Eventually, he and his partner referred me to a specialist at Mount Sinai on the upper east side in Manhattan. Excellent doctor. We tried various infusions. By the way, the infusion center affiliated with Mount Sinai is terrific.  Private rooms with very comfortable reclining bed/chairs with high-end televisions attached to the wall. Treated myself to episodes of Dog, The Bounty Hunter, during each infusion. He always caught the criminal but I never caught a break. This gastro. doc introduced me to an equally impressive surgeon. After the surgery my Ulcerative Colotis "morphed" into Crohn's. As you know, Crohn's can rear its nasty head in many different forms. Mine has currently settled on Pemphigus. Hence the dermatology specialist. I discussed all of this with the latest gastro. doc (the one I first met, and trusted, at Mount Sinai left to do UC & Crohn's research in Cleveland). Yes, Cleveland. So this new guy now decided to discuss my particular case with the dermatologist in Connecticut and put a temporary hold on any scoping procedure for now. Thank you, all who responded, again, for your input and concern. It's what makes this site so beneficial... 

Hi Silverado,

  Sounds like you have a a plan.......that's great!  As for the Pemphigus........I'll just say that really sucks.  Hopefully the Derm folks will get that under control for ya!!  I've been to the Cleveland Clinic......it's an awesome place.......as far as hospitals go.  I was in the Washington Hospital Center getting IV nutrition and fluids waiting for a bed to open up at Hopkins.....and it just dragged on and on for over a week. So I called my Mom and said.....Roadtrip time!  She busted me out of WHC and we drove up to Cleveland.  I called them on the way to say I was coming and when I got there.........there was a team of 9 people waiting for me at the entrance to the hospital.  They take the "team" approach to a whole new level.  Wouldn't hesitate to go back there again if I needed it.  But Mt Sinai is also pretty darn good from what I hear.  Let us know how you make out.........as we're all pulling for ya!

;O)

bob

Goodness! Why wouldn't you take the offer of a scoping to check you out? If they spot a growth, cancerous or pre-cancerous polyps, it's so much better than ignoring it.

The only bad part is that yuck MoviPrep (or whatever they call it over there) that you have to take the night before and the early in the morning to clear you out. This year I had my last check for until 5 years from now and it was a doddle. Yucky drink and a long car ride by my brother, but the hospital bit was so easy. This time they didn't use sedation, the one that doesn't knock you out but just cuts a few hours from your memory. They are trying to get away from that I think and offered Nitrous Oxide (or similar) - the old-fashioned "laughing gas". So I got to view and remember the entire procedure. Nothing untoward found. Most memorable part was the TV monitors that the surgeon (30ish, French, tall, svelte, footballers' stubble) and I watched to look at my insides while he manipulated the Nintendo joystick (well, a bit like that) while the female anaesthesist and the 2 nurses had their gazes firmly fixed.... on him!

Me, too. My surgeon said- It’s good, we’re done, good bye.

About 5 years ago my gastro decided it would be a good idea to have a colonoscopy through my stoma using a paediatric scope. VERY BAD IDEA!!!

Three days later I was feeling really unwell & my tummy was hot and red. Turns out he had perforated my bowel & I needed surgery 😠

My advice would be don't agree to have it done without a very good reason!

Exactly !  

As I see it - it’s Dr Las Vegas out there.

One has to take chances - a gamble, so to speak, on whether you have made the best decisions regarding your doctors and your medications. 

I am not a gambler so I pretty much say “no” to everything. 

Why this attitude you might ask? 

My mom had a stroke at age 82.  She was taken to the emergency room and a doctor was called.  He wouldn’t’t even come to the hospital as he said there was nothing he could do and she wouldn’t survive the night.  It was 11:30 at night.  She survived the night in the very cold emergency room with 3 of her adult children by her side.  

Fast forward - she rallied (although paralyzed on her right side).  But during those days following her stroke we were told on 3 different occasions by 3 different doctors she would not survive the night - who says this?  They were wrong !

She passed at the age of 90.  In those “extra” years my sister and I had many happy laugh days and even 2 trips cross-country by train from Phoenix to Chicago to visit family. 

This life experience left me questioning the medical profession and just how much trust I should put into docs and drugs and just how much I should put into my own judgement - it’s such a gamble.  Las Vegas indeed!  

I realize there are many stories of great “life-saving” doctors our there and we each have our own stories which influence our decision making - and I respect that. 

I have been scoped both through the stoma and through the remainder of the large intestine/rectum. My problem to start was cancerous polyps, so they wanted to make sure no more developed. I'm now on a 5-year schedule. However, in addition, I had (due to radiation for the initial cancer) damage to the intestinal walls that won't heal totally. I have bleeding from the rectum as on spot continues to try to heal, and continuously breaks back down and bleeds. That has been checked and scoped several times, and there's basically nothing they can do about it except watch it to make sure it doesn't expand. I guess I would be a candidate for the "Barbie Butt" procedure and have it totally removed (can't bleed if it's not there ...).

There could be as many different reasons for doing a scope of the stoma as there are individual circumstances on getting one in the first place. I think your doctor is doing the right thing to keep an eye out for returning Crohn's - although I think his communication skills could use a brush-up!