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Raine
(@raine)
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Joined: 2 years ago
Posts: 64
May 7, 2018 4:10 pm  

Hi all,  I've been reading your posts for a couple of months now and  your knowledge has been sooo helpful!

I was diagnosed with Crohns in 1982 at 21 yrs. old.  After a couple of years I had a good long remission that ended around 2001.  Since then it's been a roller coaster of different drugs and doctors.  My next step is Stelara, fingers crossed it works.

About 2.5 years ago I was dx with rectal stenosis and had a flap procedure done to try and correct that and an RV fistula.  It was a total disaster and led to 2 years of regular dilations.  My current surgeon kept saying he would do them as long as I wanted and/or it was a viable option.  On March 12 he said I would need to have my anus, rectum and decending colon removed.  Surgery was April 4, it lasted 5 hours and in addition to the proctocolectomy he also did a small bowel resection and removed the old anastamosis as there was a mess of scar tissue wrapped around it.  

I'm healing well and will return to work soon.  But I'm still struggling with leaks around my stoma.  I was just switched to a convex wafer but after 3 different ones from 2 suppliers I'm still having issues.  Grrrrrrrrrrrr.

Well thanks for being here and than you Eric for this sight!

Raine

 


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VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2868
May 7, 2018 4:21 pm  

Hi Raine,

Welcome to the forums and thank you for sharing your story. 

It sounds like you've had a lot going on! 

Because you've had a small bowel resection, I would imagine that your output is quite liquid, right? This could very well be a source of your leak problems, but that might only be part of it.

Have you had a stoma nurse look at your skin to assess whether anything else needs to be done to get your appliance to fit better? 

And good luck with Stelara! 


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Raine
(@raine)
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Joined: 2 years ago
Posts: 64
May 7, 2018 5:37 pm  

Actually it ranges from liquid to pasty, mostly pasty.  Yes the ostomy nurse is aware, she suggested switching to convex.  She'll be here for the last time on Wednesday.  Hopefully she will have some suggestions. 


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john68
(@john68)
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Joined: 3 years ago
Posts: 1563
May 7, 2018 6:20 pm  

Hi Raine, That is a lot you have through. do you use a seal or ring when putting the wafer on? Plus when you say the stoma nurse will be their for the last time! the follow up with a stoma nurse should be on going.


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Dona
 Dona
(@dona)
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Joined: 3 years ago
Posts: 790
May 7, 2018 8:57 pm  

Hello Raine,

Welcome to the forum.

Well, I had to look up several words in your introductions, so thanks for the education.

Sounds like you have had a long road to travel to get here. Hopefully your visiting stoma nurse will be able to help with the leaks, and as John68 said, you should have access to a stoma nurse once the home visits are over. Either in person or by phone BE SURE TO ASK BEFORE THE LAST VISIT how to get in touch.

I also use a convex wafer ( Hollister). You should have already learned that they are available in a least two convexities, one shallower than the other. I started with them when my stoma kind of occasionally started to lay flat with my abdomen, causing it not to be spout like, ( the preferred shape) and leading to leakage. No one has a perfect stoma.

If this is your problem, the convexity really fixed the problem for me. I also use an Eakin barrier ring, which also both helps the wafer to stick ( for me) and makes the wafer a bit more convex right around the stoma. ( there are other brands of rings some seem to work on some folks and not others..trial and error). There is also the issue, that as we heal up from the ostomy surgery the stoma can  and usually seems to change size. Just something to be aware of if you aren't already. This also causes the wafer to not fit anymore and leads to leaks.

Good luck with all this, you will get it sorted. As you know you have to protect the skin right next to the stoma. It isn't at all happy with leaks. 

And good luck with the new drug.. hope it helps. Let us know.


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Marcie
(@shulmjs)
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Joined: 3 years ago
Posts: 1510
May 8, 2018 3:08 pm  

Hi Raine, and Welcome !  I am in the short bowel area bl abla . I found Banana flacks........  U can order from amazon.... These were interduced to me the other week.  Nicer to your stomach and  upper bowel than meta-mucil.  Most of these so called flakes (which really are ground up) contain milk-so read the label - and ask your Dr. !!!!!!!!  They are far more gentler to my insides..  -  Also, as a liquid out put person my self, I make the cutting/seal ring smaller and I seem to get a better fit.  But YOU ARE NEW NOW AND YOUR STOMA WILL CHANGE IN SIZE.. Eric  has a video on early on foods, go by this the best u can, and u will be fine.  You as the rest of us have gone through it, and nothing about having a stoma is much fun, but got to make the best of it and live it some humor later on when your up to It my friend. Many adjutments......  and we have the help and many answers for you.. Rest and eat well --- Best. M. 


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Raine
(@raine)
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Joined: 2 years ago
Posts: 64
May 8, 2018 4:00 pm  

Yes, I know the stoma nurse is an on going thing.  I just meant this will be her last post op visit to me at home.  I have her work cell number so I can get hold of her any time. 

 I guess at 5 weeks, I should give myself a break  :-P .  I just need to get this straight before vacation next month.

 


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Marcie
(@shulmjs)
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Joined: 3 years ago
Posts: 1510
May 8, 2018 4:11 pm  

Raine, just 5 weeks and your going on vacation?  Where? I am excited for you-- Take me along with this.. IN THE LOUNGE :-)  Your doing great my friend.. Take it slow and be nice to yourself.. and enjoy yourself......... Also, the stoma nurse will not have to be an on going thing for you..  That is for starters and possible later IF (?) issues you may need to see the Dr. or nurse.  And u have us....................... Best M.


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VeganOstomy
(@veganostomy)
Admin
Joined: 6 years ago
Posts: 2868
May 8, 2018 4:56 pm  
Posted by: Raine

Actually it ranges from liquid to pasty, mostly pasty.  Yes the ostomy nurse is aware, she suggested switching to convex.  She'll be here for the last time on Wednesday.  Hopefully she will have some suggestions. 

Yes, I hope she's able to assess the situation after you've used the convex appliance. 

It's often a multi-part assessment when you're trying to problem solve for something like that. And I do echo what others have said (and what you seem to already know) about making sure you have someone to follow up with after this nurse ends her care with you.

Please keep us updated on how things go.


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Zvitusk
(@zvitusk)
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Joined: 3 years ago
Posts: 396
May 9, 2018 12:11 am  

Hi Raine, 

I just read the batch of notes on you and the other guys seem to have covered most everything, so I will just be nice and welcoming and say "Hello".

Tell us about you and your life. It is starting now. Once you get used to the freedom of your bag, and the freedom of not having pain, you will start life over.

Keep in touch. Connect to us.

Z


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john68
(@john68)
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Posts: 1563
May 9, 2018 5:12 am  
Posted by: Raine

Yes, I know the stoma nurse is an on going thing.  I just meant this will be her last post op visit to me at home.  I have her work cell number so I can get hold of her any time. 

 

 

Good stuff, it good to build a relationship with yer stoma nurse as it opens many doors to treatments and help. well done you. :-) 


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