Which Doctor is responsible for my Ostomy needs?

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Peace&Harmony
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Date Joined Jul 2010
Total Posts : 1144
   Posted 8/14/2015 1:31 PM (GMT -7)   
Ok I've had my iliostomy since 2012 but when I have problems I get the run around. There's no such thing as an Ostomy doctor and the Ostomy nurses here by my local hospital do not diagnose and treat ostomy related issues...they can't even write a prescription.

I've been bouncing around between my Primary Care Physician, My GI, and also a Dermatologist.
Also how does it work when you have the Ostomy due to UC? Am I still under the diagnoses of UC? I thought removing the colon was a "cure". Why type of diagnosis do I get now? Basically I see myself as having a permanent disability as a result of untreatable UC.

When I called Edgepark, my ostomy supplier, they told me that my GI have be authorizing my ostomy supply over the past 4 years. I was told normally this is in the beginning but the GI normally transfer the responsibility to to PCP.

I don't think my PCP knows diddly squat regarding an Ostomy. Aren't there some seminars he can take to get educated?

Who handles your Ostomy related issues?
Diagnosed with UC, July 2010
proctocolectomy with end ileostomy, Sept 2012
Anal stump removed due to complications, Dec 2013
Bye Bye UC!

Sammy79
Regular Member


Date Joined Aug 2015
Total Posts : 77
   Posted 8/14/2015 2:48 PM (GMT -7)   
You'd be surprised how many general physicians know/remember next to nothing about ostomies. I've had everyone from doctors to nurses and all points inbetween ask me, 'What's an ileostomy?'.

Ostomy specialists do exist; at least, they did when I first had my colon removed in '91. You might have to do some digging to find a specialist through your doctors. The GI surgeon is probably the best one to point you in the right direction.
36/F
UC diagnosis '91; total colectomy; first ostomy created
Ostomy takedown '92
Twin abscesses '99; second ostomy created
Ostomy takedown 5/13/15
Permanent ileo installed 7/15/15

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15678
   Posted 8/14/2015 3:03 PM (GMT -7)   
I think it depends on the issue. If it's mechanical, i would go to the surgeon. If it's skin, probably GP or dermatologist. If it's a problem using the supplies, an ostomy nurse - they can help with skin issues too, probably better than a GP because they see this stuff all the time. If it's some kind of inflammation symptoms, i would see a GI or surgeon. What's the problem you're having?

I don't get this prescription thing either. I ordered some stuff and everything was great. Then I wanted to get some mini pouches for sports and going out and they responded that they have to contact my Dr again. I guess my insurance doesn't want me to have more than i "need". Sorry but we have a bag, we need extra supplies. This is a life altering thing, what is wrong with wanting a few different size pouches so I can feel more comfortable during sports of sunbathing? I don't think it's unnecessary.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 8/14/2015 6:06 PM (GMT -7)   
I don't have any particular issues at the moment but its just annoying that every time I go to my PCP they ask me if my GI is following up on my Ostomy. Also they still have UC down as a current medical condition and that I'm being treated by a specialist? Gee...I thought you needed a colon for UC....and farting! I hate it when they ask me if I pass gas! Duh!

I just had my physical...kinda annoying that I have to do a screening to test for blood in the stool...isn't that based mainly on colon cancer? It apparently did no good for me in the past as my UC diagnoses didn't detect blood in my stools! My main issue was constipation! ugh!
Diagnosed with UC, July 2010
proctocolectomy with end ileostomy, Sept 2012
Anal stump removed due to complications, Dec 2013
Bye Bye UC!

AnnaIvy
Regular Member


Date Joined Jun 2015
Total Posts : 93
   Posted 8/15/2015 2:32 AM (GMT -7)   
It may depend which country you're in.

I don't have IBD, and I still have plenty of digestive problems despite my ileostomy. Before my ileostomy, I was seeing gastros and my colorectal surgeon simultaneously. I had a number of surgeries prior to my ileostomy, but the ileostomy means I need no more GI surgeries, so now I just see gastros.... in theory, but I have had a couple of complications that needed my surgeon involved again. I also have a team of stoma nurses who deal with any stoma issues, including referring me back to my surgeon when needed.

My GP doesn't know a huge amount about stomas, but if I need a new stoma product she can write me a prescription for it, without me having to travel all the way to the hospital to see the experts. Though my stoma nurses are available by phone also.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10140
   Posted 8/15/2015 3:13 AM (GMT -7)   
My hospital has two stoma nurses, so I would see either of them. Unusually for NHS staff, I could email them, which suits me a lot better than using the phone. To be honest, I can't imagine a stoma nurse who doesn't deal with ostomy issues - what do they do then? Every time I had a query about the stoma, I'd ask one of the nurses about it. They also dealt with minor issues that cropped up, like granulomas and mild skin irritation.

They also used to deal with prescriptions, but that task got outsourced to GP surgeries a few years ago. I don't know much about it, other than my stoma nurses weren't happy with the change. One downside for the patient is that supplies take longer to arrive. Another downside is costcutting GPs who don't want to shell out for expensive supplies. This didn't affect me, but I read a right horror story about an elderly man who desperately needed more supplies, but whose GP refused to prescribe them and he ran out. Hopefully that's rare, as I would absolutely hate to be in that position.

As for your diagnosis, ex-UC? I'm not sure. That's a point actually. Do ex-UC folks with successful ileostomies or j-pouches still see their GIs? I don't know. Me, I had Crohn's so I'm considered to be in remission rather than Crohn's-free.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

AnnaIvy
Regular Member


Date Joined Jun 2015
Total Posts : 93
   Posted 8/15/2015 3:33 AM (GMT -7)   
When I first got my stoma, NHS prescriptions were done by GPs, but they arrived within twenty-four hours of ordering, because the suppliers sent you the products and then wrote to the GP for prescription. Then that changed and they now won't send them until they've received a prescription from the GP, which can take two weeks, which I don't like because it's not always easy to judge what you'll need to last two weeks. Though my GP is good about giving me prescriptions for whatever I ask for.

The stoma nurses are great though. For some reason when I call them there's always one there to answer (unlike consultants where you have to make an appointment via secretary), there's never a waiting list for appointments with the nurses, they just see you right away, they always run on time (why can no consultant do that?!) and they come to see you on the ward whenever you're in hospital.

Anytime I'm not sure who I need to see about a stoma issue, I call the nurses and they either deal with it or tell me who I needto speak to if they can't.

AnnaIvy
Regular Member


Date Joined Jun 2015
Total Posts : 93
   Posted 8/15/2015 3:46 AM (GMT -7)   
Sammy79 said...
You'd be surprised how many general physicians know/remember next to nothing about ostomies. I've had everyone from doctors to nurses and all points inbetween ask me, 'What's an ileostomy?'.

Ostomy specialists do exist; at least, they did when I first had my colon removed in '91. You might have to do some digging to find a specialist through your doctors. The GI surgeon is probably the best one to point you in the right direction.


Really? Every nurse and doctor I see knows about stomas. I've had all sorts of scans of my stomach or tests involving showing my stomach (abdominal ultrasound, gastric emptying study, DEXA scan, chest x ray, ECGs, etc. etc.) and no one has ever been surprised when I lift my top up and they see my stoma. Though usually I remember to tell them beforehand, but they are never taken aback and straightaway know what I'm talking about. I once was in hospital and had an HCA who was literally on her first day, and even she knew what an ileostomy was, I showed her how to change the bag - she was very keen to learn.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10140
   Posted 8/15/2015 4:21 AM (GMT -7)   
AnnaIvy said...
When I first got my stoma, NHS prescriptions were done by GPs, but they arrived within twenty-four hours of ordering, because the suppliers sent you the products and then wrote to the GP for prescription. Then that changed and they now won't send them until they've received a prescription from the GP, which can take two weeks, which I don't like because it's not always easy to judge what you'll need to last two weeks. Though my GP is good about giving me prescriptions for whatever I ask for.


Oh okay. That makes it clear, thanks. I was lucky to have a good GP who didn't balk at prescribing me what I needed. Being the pessimist I am, though, I think it's going to become harder and harder for GPs to prescribe stuff. Bit of an aside, but at my previous hospital a doctor told me that some GPs wouldn't prescribe 6MP because of its expense: some patients had to come to the hospital to get it. I was quite shocked by that.

Fear of the future is one reason why I got my reversal in all honesty: I don't want to have to fight to get essential ostomy supplies or have to eke out inadequate supplies.

AnnaIvy said...
The stoma nurses are great though. For some reason when I call them there's always one there to answer (unlike consultants where you have to make an appointment via secretary), there's never a waiting list for appointments with the nurses, they just see you right away, they always run on time (why can no consultant do that?!) and they come to see you on the ward whenever you're in hospital.


It was like that for me at first, but at some point the appointments system was changed: you couldn't just drop in to see a nurse anymore. It meant booking in advance and only seeing them on a certain day of the week (although I presume if it was urgent they would see you sooner).

AnnaIvy said...
Really? Every nurse and doctor I see knows about stomas. I've had all sorts of scans of my stomach or tests involving showing my stomach (abdominal ultrasound, gastric emptying study, DEXA scan, chest x ray, ECGs, etc. etc.) and no one has ever been surprised when I lift my top up and they see my stoma. Though usually I remember to tell them beforehand, but they are never taken aback and straightaway know what I'm talking about. I once was in hospital and had an HCA who was literally on her first day, and even she knew what an ileostomy was, I showed her how to change the bag - she was very keen to learn.


Trying to think if I've had any nurses or doctors who didn't know what an ileostomy was, but I don't think so. I've had nurses ask me what operation I had and then not know what I meant by an ileorectal anastomosis though >_>.

AnnaIvy
Regular Member


Date Joined Jun 2015
Total Posts : 93
   Posted 8/15/2015 4:59 AM (GMT -7)   
Somebody said...

Fear of the future is one reason why I got my reversal in all honesty: I don't want to have to fight to get essential ostomy supplies or have to eke out inadequate supplies.


This is honestly not a worry I have. My nurses and GPs have always been more than happy to provide me with supplies, no questions asked, including when I just fancy trying some new adhesive or lubricant or powder or whatever else I fancy. I use a new bag every day and no one's tried to restrict that, and when I did once run short, my GP faxed an emergency presrciption through, and the suppliers will always deliver you bags before they get the prescription if you tell them you're desperate, though I wouldn't like to do that too often. Plus it's all free.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 8/15/2015 5:35 AM (GMT -7)   
I don't really understand the need for prescriptions either. I'm still on home care and this whole system is making me a bit nervous. What if You need to change something. I mean, I started leaking and had to change to a convex. Every time I want to change part of a order I need a new script? This is insane. I'm still new to this. I'm not 100% sure what will work and what will not. Edgepark told me it takes 5 days to even set up an account.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10140
   Posted 8/15/2015 5:39 AM (GMT -7)   
AnnaIvy said...
This is honestly not a worry I have. My nurses and GPs have always been more than happy to provide me with supplies, no questions asked, including when I just fancy trying some new adhesive or lubricant or powder or whatever else I fancy. I use a new bag every day and no one's tried to restrict that, and when I did once run short, my GP faxed an emergency presrciption through, and the suppliers will always deliver you bags before they get the prescription if you tell them you're desperate, though I wouldn't like to do that too often. Plus it's all free.


I just can't be arsed dealing with the hassle of ordering, the chasing things up, and the worrying. Things are changing within the NHS all the time; just because something is this way now doesn't mean it will be that way in 10, 20 or 30 years' time. It's probably dumb worrying about the future, but I can't help it. I don't assume things will be the same forever.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 8/15/2015 6:05 AM (GMT -7)   
Nice cup of tea I'm exactly like you!
UC 1996

5 asa, predisone, 6 mp
Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3, 2001.
Take down-Jan 3, 2002
Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
Gall bladder out-Oct 1997
April 2010 bad pouchitis flare-remicade (only 2 doses)
Aug 2010-adhesion surgery
Oct 2013 bad pouchitis flare- endocort, xifaxan, pentasa

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10140
   Posted 8/15/2015 6:29 AM (GMT -7)   
Susan, let's have a cup of tea and complain/worry some more about ostomy supplies <_<.

But seriously, it does eventually get easier. I know you're quite new to having an ostomy and that you don't like it; my stoma nurse reckoned it took about a year on average to really get used to having an ileostomy. A few take to it quickly, but they're in the minority: it's a pretty steep learning curve for most people. I basically only had a reversal because I could. However if it hadn't been an option, I would have been okay with living with a stoma for the rest of my life. I hated it for the first year, but at some point I really did get used to it and hardly thought about it anymore.

Just so you don't think it's always going to be awful from now on... :-/
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

AnnaIvy
Regular Member


Date Joined Jun 2015
Total Posts : 93
   Posted 8/15/2015 7:58 AM (GMT -7)   
I was one of those who took to it right away. My bowel problems before were so bad, I loved my stoma from the beginning.

I don't worry about stoma supplies changing, but I definitely have those worries about some of my medications. They are always going to have to provide adequate ostomy bags somehow, but the particular antidepressant or hormone medications I need are so specific, I'm not sure how easy it would be to find alternatives, and the possibility of having to do that if the availability or issuing rules change worries me an awful lot. Stoma bags I don't find that specific, and I just can't see how they'd be able to deny you having them.

susans53, what country are you in?

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 8/15/2015 7:59 AM (GMT -7)   
Thanks, I had it many years ago and remember it took almost a year. It's just so many things being thrown at me at once. Too many illness! too many surgeries.! Whatever your original post was I hope your doing better. I had my surgery on July 16. I remember the reversal was easier. I'm still tired and I hate still the anxious feeling. What can I eat? If I go out will I leak? What can I wear? Now, let's add ordering supplies that I'm still clueless about. Ugh!
UC 1996

5 asa, predisone, 6 mp
Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3, 2001.
Take down-Jan 3, 2002
Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
Gall bladder out-Oct 1997
April 2010 bad pouchitis flare-remicade (only 2 doses)
Aug 2010-adhesion surgery
Oct 2013 bad pouchitis flare- endocort, xifaxan, pentasa

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15678
   Posted 8/15/2015 8:21 AM (GMT -7)   
i want to have tea and complain about supplies with you guys :)

I still haven't gotten to the bottom of issue with the supplies I ordered. I hope my doctor will give the thumbs up. I feel kind of dumb, I am ordering some underwear and things that a doctor really shouldn't have to give approval on... He has to laugh when he sees that on the script.

I use edgepark. I set up the account online. it took a few days to get my insurance approved - i actually had to call. after that, i placed my order, everything as free, then they contacted my surgeon's office to get the script and the stuff shipped and arrived overnight. it was really convenient. What i don't understand is why if I want to get mini pouches I need another prescription. I feel bad that they bother my surgeon. It has been concluded that i have an ostomy and i need supplies. That should be enough. Do they contact him every time I want to try a new air freshener?
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 8/15/2015 9:36 AM (GMT -7)   
btw...If you use Edgepark, please monitor your account closely. I match my insurance EOB of what I'm responsible for to what I actually paid. They seem to be off...sometime by pennies but it builds up over the year. If it's an overpayment then it should be due back to us at least by year end. They claim there is no credit on my account. I'm in the mist of pulling a spreadsheet together to make the comparison.

Also there was a data breach of Edgepark's customer information reported back in Jan 2014. It's file on the Maryland State site: /www.oag.state.md.us/idtheft/Breach%20Notices/itu-235984.pdf Try copy-pasting the website. The auto link doesn't seem to be working. You can also try: https://www.oag.state.md.us/idtheft/breachNotices2014.htm. You'll see Edgepark listed there. I have also downloaded the document. You can email me for a copy. It apparently only affect customer located in Maryland USA. If you are a resident of another State you'll need to go through the state's Attorney General website a search for "Data Breach" or "Personal Information Protection Act".

As for the doctor stuff...I just send my GI and email letting him know my PCP is using an outdated diagnoses and think's I'm still being treated by him for a chronic medical condition. I'm also asking him if there anything such as an annual Ostomy exam...my PCP thinks there is. As far as my surgeon is concerned I just need to contact her if there's issues. I'll give you an update once I get a reply.
Diagnosed with UC, July 2010
proctocolectomy with end ileostomy, Sept 2012
Anal stump removed due to complications, Dec 2013
Bye Bye UC!

Post Edited (Peace&Harmony) : 8/15/2015 10:41:59 AM (GMT-6)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5931
   Posted 8/15/2015 10:08 AM (GMT -7)   
Oh don't get me started with Edgepark...what a pain in the tuccus they are becoming! I am on Medicare with Pa Bl Cross and Bl Shield as my secondary ins. When I had Personal Choice there was never a problem, so maybe it is Medicare? Anyway, they want to know, every month this is, how many days of supplies I have left. How the heck do I know? Sometimes I change every third day, sometimes every second day. Medicare will only allow a shipment if I have just one week of supplies left, so I tell them what they want to hear. I am glad I have extra boxes, just in case, but Medicare doesn't know that.

Peace, my new colorectal surgeon is listed on the form for Edgepark simply because I don't go to a GI doctor, not since my operation. I also have my family physician on there too.

AnnaIvy
Regular Member


Date Joined Jun 2015
Total Posts : 93
   Posted 8/15/2015 10:19 AM (GMT -7)   
It sounds like we have things much easier in the UK. It's free for one thing. When I have a problem or want new supplies I just ring my stoma nurses, or see my GP, and someone will sort it out for me. When it was serious (something serious only happened once) the stoma nurse made an appointment for me with my surgeon.

I do think the websites for ordering online make things more confusing than they need to be though. They don't really make it easy to find what you want.

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 8/15/2015 1:19 PM (GMT -7)   
Christine, Ugg, I have Medicare as my primary too. What number do you give them? Think this is a Medicare thing.
UC 1996

5 asa, predisone, 6 mp
Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3, 2001.
Take down-Jan 3, 2002
Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
Gall bladder out-Oct 1997
April 2010 bad pouchitis flare-remicade (only 2 doses)
Aug 2010-adhesion surgery
Oct 2013 bad pouchitis flare- endocort, xifaxan, pentasa

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5931
   Posted 8/15/2015 5:25 PM (GMT -7)   
What do you mean "what number?"
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