How did you rate your after care when you had your ostomies done?

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Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 11/14/2009 2:12 PM (GMT -6)   
Hi everyone, just curious about what you think or thought of your after care. When i first had my op the stoma nurse was lovely and couldn't do enough to help and would ring now and again to make sure all was ok and if not would invite me in to give advise but unfortunately she went on maternity leave and the care went down hill from there. as i suffer with skin issues if i ring the stoma nurse she basically tells me to change the bag more often(i change it every day as it is!!) i don't find her approachable at all. and have now stopped contact with her i get more info coming on here! (thanks guy's) when i went in to hospital last week A&E left a message for her to to contact me and to checkout the burnt area i'm still waiting for that call but its to late now i've sorted it!!!!!! what have been your experiences good or bad? Bev x
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/14/2009 5:07 PM (GMT -6)   
I think i asked this before, but what is A&E?
Anyway my care was pretty good, my ET nurse was very helpful, but honestly, i got more help from here also. My home health care nurse was useless, she told me (this is true) to stick a safety pin into my bag and make a few small holes to let the air out! OMG what a mess that would be! After that she was going to come back and help me change my bag, and i canceled my appointment, and since my husband is a nurse, i just told her he could check my vitals and my incisions for infection. Plus, i dont think she took baths very often, lol.
My nurses in the hospital were good, of course it was where my husband worked, so that makes a difference. But i got very lucky and one of CNA's daughter had an ileo for 3 years, as an infant, so she knew lots about them.
Anyway, can you call another hospital and get a different nurse to help you? Or you can also call some of the companies have nurses and reps who can help you.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 11/15/2009 9:35 AM (GMT -6)   
Hi Summerstorm, thanks for your reply Pin holes in the bag! that remark did make me giggle. I have another hospital about 10 miles away i think i will give them a ring to see if i am able to go there and see a stoma nurse if i need to BTW A&E stands for Accident and Emergency (UK)same as a ER. thanks again for your advise and the humour Bev x
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)

Regular Member

Date Joined Oct 2009
Total Posts : 453
   Posted 11/15/2009 11:18 AM (GMT -6)   
wow summerstorm that is funny...stick a safety pin in it why don't ya???
I received very good care in the hospital but I had other things going on so the focus was on that and not teaching me to deal with my stoma,wafer and pouch. Things were interesting when I got home. I didn't know that there were actually WOCN's until I got to this and C3Life's site. I live in a smaller town and we didn't have that speciality here. I did find one fairly close and working with her has made all the difference in the world as far as maintaining the wafer...Good Luck and keep us informed.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 11/15/2009 6:23 PM (GMT -6)   
I would definitely try the other shouldn't have to suffer with skin breakdown! I had a wonderful home nurse and I am lucky to have a great WOCN department at my hospital and tend to go there if I have an issue.

Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 11/16/2009 12:09 AM (GMT -6)   
Call your surgeon if the ostomy nurse isn't helping with the skin breakdown! I did and they gave me a few tips, then I got tired of useless info from my ostomy nurse (she told me I couldn't irrigate because I had to wait until I was regular, but I was on 2 antibiotics NOT making me regular - basically, she said irrigation is to make you regular, but I couldn't irrigate until I was regular *scratching head*)

Anyhow, I decided to take it into my own hands. I had been using convatec products and felt like I liked their products the best.. so I called them direct and spoke to a nurse or some type of ostomy guru. Of course they were going to sell me on products, but she sent me a HUGE care package of sample products and told me I needed the skin protector wipes and powder AND paste. My dimwit of a stoma nurse told me I didn't need stomapaste with a moldable convatec wafer! (Ya, no WONDER I WAS IN PAIN WITH SKIN BREAKDOWN!). So, she spent about 30 minutes on the phone with me and she sent me plenty of samples. If I want to try something new, I just call them.. but they did walk me through over the phone some tricks..

MIlk of magnesia and a blow dryer is what helped me until I spoke to convatec. Also, you might consider the eakin seal until you are 100% healed with skin breakdown...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 11/16/2009 2:12 AM (GMT -6)   
My ostomy nurse was amazing! Her husband has an ostomy due to Crohn's, so she really knew what she was talking about. She recommended the Coloplast Assura Extended Wear wafer, which, in my opinion, is incredible! I get 7 days wear time and no leaks.

I hope you find an ostomy nurse like the first one you had. Hopefully, she'll be back to work after her maternity leave. You shouldn't have to change your wafer every day! sad Have you tried a convex wafer with an Eakin Seal? The Coloplast Assura Extended Wear wafers have a built in skin barrier and come in convex. You might want to give them a try.

(((Big hug)))
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

schrek-chewbacca hunk
Veteran Member

Date Joined Jun 2005
Total Posts : 2666
   Posted 11/16/2009 5:44 PM (GMT -6)   

In the hospital my nurses were a nightmare Washington Hospital Center- they were terse and not compasionate, nor were they following the written and verbal orders from my GI and surgeon until I had to call them to explain to the nurses what I needed, and I was in control of my paim management not their opinion.  They even bad-mouthed my doctors to me.  How disrespectful.  As for the Ostomy nurse, even in a DC huge hospital, there is only one Ostomy nurse that works one day a week for visits, and a long time to reach on the phone.  Basically it was trial and effort, of me and my wife who figured out I didn't have a perfectly round stoma and I had to customize the cutting of the wafer.  My wife was immensely more help than they were. 

On other surgeries, the nurses at Georgretown, the other big hospital in DC, they were prepared to deal with my ostomy even though it was my legs/Charcot disease for the reason being there.

I have gotten so much better advice here, and I am told there are associations of ostomates that will come to your house as a volunteer and help - but I haven't used them.

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 11/18/2009 2:47 AM (GMT -6)   
When I had a colstomy in '89, the aftercare was awesome.  Stacy (I'd rather not mention her last name, but she's in my will), my ET, was awesome. 
However, when my colostomy was changed to an ileostomy in '04, the ET was @#$%ing terrible!  Luckily I was already a veteran at the time!!!

Post Edited (vette guy) : 11/18/2009 12:59:53 AM (GMT-7)

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 11/19/2009 5:33 AM (GMT -6)   
WOW! Pin holes in the bag, oh, my! Yeah I'd vote for another hospitals ET nurse and there are usually other visiting nurse companies around. One thing that helps me with skin breakdown is stomahesive powder on the burn and then an Eakin Seal around the stoma on top of the burn then put on the wafer..Also to click on the tupper ware like bag onto the ring that is already on you (as part of the wafer) put a bit of foam soap around the part of the bag that clicks onto the ring then you don't have to press so hard. oh, also before applying the wafer put allcare wipes on your skin. This applies a layer of shelack on your skin and helps it not get irritated. (But never put the allcare wipe on a burn or .....ouch!) This is the combined knowledge of two excellent ET nurses. One at my local hospital and one at the place where I got the ileo. Each ET nurse seems to contribute something. Good luck, Rosemary

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 11/19/2009 8:44 AM (GMT -6)   
Excellent before and after ostomy care. I had three meetings with the ostomy nurse before my surgery - she gave me bags to try out so I could 1) see and feel what it would be like after surgery and 2) decide the best spot for my stoma (with her help). I wore a bag full time a week before my surgery to get used to it.

After surgery, my stoma nurse came to visit me every day on the ward for 2 weeks before I went home and made sure I could change it by myself (I was 10 years old at the time) before sending me home.

If I had problems, mum would call her up and we would get to see her either that day or the next working day (all free of charge - I'm in Australia).

I have no complaints about my care at all.
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums


I'm not a complete idiot - some parts of me are missing!

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