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Dona
 Dona
(@dona)
Joined: 7 years ago
Posts: 832
 

Hi Kerby .. we seem to be posting at about the same time. Welcome.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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Barbara
(@msbjlee)
Joined: 7 years ago
Posts: 452
Topic starter  

Also if they plan on a temporary ostomy and the plan is to hook things back up, the stump is a necessary part to hook in so the plumbing works

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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Dona
 Dona
(@dona)
Joined: 7 years ago
Posts: 832
 

Ann C .. I just re read your post from the last page. I too had a discharge like that for a few months after my colectomy. Also felt the need to push it out. My doctor said that was normal. BUT .. if you are worried you should certainly ask your doctor.

And Barbra's point is right. If the doctors are planning a reconnect there should also be a bit ( a fair bit, I think) of colon left in there as well as the rectum. If there isn't enough colon left there is nothing to compress the output and remove the liquid...and then the outcome could still be the hated diarrhea. I asked one surgeon about this and she said they treat that with opiates ( no thanks).  So, if thats on the table ASK a bunch of questions.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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(@ann-c)
Joined: 7 years ago
Posts: 23
 

Thanks dona! Do you think I should be concerned that I DONT discharge mucous? It seems like most ostomates pass mucous on a regular basis but other than those two times, I haven't passed anything.


   
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Dona
 Dona
(@dona)
Joined: 7 years ago
Posts: 832
 

Hello Ann C.

I don't know what 'normal' is.  I think I passed the darker 'stuff' a few times, then nothing for awhile, then this mucus stuff every now and then.  I have only had my ostomy coming up on three years this July. Good thing about this forum is we can get some input on what our fellow ostomates are experiencing.  ( Thanks again, Eric!.)

As always, I would recommend asking your doctor what the 'new normal' is for you.

Maybe you even have a way to contact her or him through email? Worth asking, just to set your mind at ease.

Someone once told me ( a professor) ' No question is stupid if you don't know the answer'.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4211
 
Posted by: Ann C

Do you think I should be concerned that I DONT discharge mucous? It seems like most ostomates pass mucous on a regular basis but other than those two times, I haven't passed anything.

It's normal either way :) Some ostomates (who have a loop ostomy) may still pass a little stool from their inactive rectum.

If there's blood in the mucus, then I would be more cautious, but even that might be "normal" for someone who's just had surgery. Checking in with a doctor or stoma nurse for reassurance is always an option.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@ann-c)
Joined: 7 years ago
Posts: 23
 

Ok thanks to you both! There is still so much I am not sure about. I am very grateful for this forum!  I see my surgeon tomorrow, so I will ask him then. :)


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

I'm jealous of your problem. My tumor left me with no margin for reattachment. After the surgical removal of my anus , it did dump mucus once . Then it sealed tight. No more attention required. 


   
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Barbara
(@msbjlee)
Joined: 7 years ago
Posts: 452
Topic starter  

My surgery left me at a point where reattachment is possible but it probably won't happen. My surgeon said he wouldn't consider it for at least 2 years. I am 1 year in.  He also said I probably wouldn't want it done. He said reattachment surgery was a more difficult surgery with a long recovery period.  He also said that getting things working was "iffy" at best. I could end up with a serious constipation or diahreah problem and a chance of my original problems returning.  He also  said that type 1 diabetes and rheumatoid arthritis mke me a lousy surgical risk.

So ... I am not holding out much hope in reattachment being done.

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

We cannot know your specific situation. However,  I think that it is wrong of your surgeon to remove your hope.  The chance of  , the possibility of , repairing your body to function,  may be remote but it is not impossible. 

I would wait the year and then, if you haven't lost your hope, i would seak out a better , more sympathetic surgeon . As highly educated and experienced your present surgeon is, he is not god. 

I have seen and experienced enough miracles to know that doctors and surgeons are human. 


   
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Barbara
(@msbjlee)
Joined: 7 years ago
Posts: 452
Topic starter  

Thanks Zvitusk!  It is so easy to lose hope with chronic diseases.   I recently bought a new bracelet. It has a disc hanging from it and this us engraved on it:  "You were given this life because you are strong enough to live it!" When I found it I felt like it was a message specifically for me.  I need to take it to heart more and be stronger. I am often intimidate by doctors and think they are the know all, see all that need to be followed.  I am only recently learning that i am the only real advicate that i have for me.  I think i am part of the generation that blindly did what the doctor said because they "knew best because they were doctors."  Thank you for reminding

me of the truth. I will hold out hope!

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

Every day , we get a little bit more smarter. 

When i need a new doctor,  I look for humility.  Not a god.


   
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Barbara
(@msbjlee)
Joined: 7 years ago
Posts: 452
Topic starter  

The strange thing to me is having doctors that are the age of my kids. But then i think its a good thing,  they are likely more up to date on the current new stuff.  AND I will probably die before they retire so, if they are good, I won't have to do the work of finding a new one.  ?

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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Marcie
(@shulmjs)
Joined: 7 years ago
Posts: 1510
 

I think my Dr, in the E.R. last Sunday still had his training wheels on his bike. I did ask him, and he said "yes" with a grin.. He will be a great Doctor with many patients very soon. Loved him. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


   
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Jattzl
(@jattzl)
Joined: 7 years ago
Posts: 118
 

I searched for mucus and this post came up - embarrassing question lol - perfect!  Thank goodness we have this forum for our "embarrassing questions".  I was lucky because my doctor warned me about the mucus (but they didn't warn me about hernias and so now I'm stuck with a hernia since shortly after surgery)  I should say I have an ileostomy due to gastroparesis and nerve damage of my colon and rectum caused by long term Type 1 diabetes.  My problem with the mucus is I always feel pressure like I need to have a bowel movement.  Because of the nerve damage I am unable to pass the mucus without an enema which causes cramping and nausea.  If I don't do the enema I need to deal with the pressure and eventually the mucus becomes like a thick plug.  I had no idea this, the hernia AND all of the ileostomy issues would impact my quality of life to this extent let alone diabetes and its complications.   :(  sorry that sounded like whining.  I'm also curious.  If they remove the colon and rectum what happens to all that mucus??

54 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015.


   
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Barbara
(@msbjlee)
Joined: 7 years ago
Posts: 452
Topic starter  

Jattzi, thanks for posting. I too have issues with the mucous. Luckily for me I can pass it without an enema however it will build up a large quantity before it lets me know, and then it feels like the old days when the urgency was bad with what what daddy called "the Rocky Mountain Quick Step.,"  and you weren't whining. We call it venting and this is a good place for it! So... whine on!?

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4211
 

Hi Jattzl, if your ileostomy is permanent, have you considered closing everything up down there? 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Jattzl
(@jattzl)
Joined: 7 years ago
Posts: 118
 

Hi Eric.  Yes.  It is permanent.  It has been discussed several times.  The consensus seems to be that it is a major surgery and at the time they considered the mucus issue a simple issue without realizing how much it would effect my quality of life.  I also have a peristomal hernia that is going to need to be fixed which is another surgery.  If I were to close everything up what happens to the mucus?  Does it just build up in there??

54 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015.


   
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Kerby
(@lkerby33)
Joined: 6 years ago
Posts: 83
 

I came Home from my surgery in November. My Ostomy is permanent. My rectum was sewn  shut!!!!  I've had no leakage, nothing. Mucus?  I had rectal cancer. There was no cancer in Lympnodes :). I go every 3 months for CT scan, plus blood work. Colonoscopy every 6 months. I'm glad you Guys are here for me. I was a mess coming Home from Hospital!  How can I do this ? Quite the learning lesson. It's comforting to know I'm not alone. My Ostamate Family is great. Thanks to you all for opening your heart on here. I know it's not easy at times but that's why we are here .Im a better Person for this Site. ???


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4211
 
Posted by: Jattzl

Hi Eric.  Yes.  It is permanent.  It has been discussed several times.  The consensus seems to be that it is a major surgery and at the time they considered the mucus issue a simple issue without realizing how much it would effect my quality of life.  I also have a peristomal hernia that is going to need to be fixed which is another surgery.  If I were to close everything up what happens to the mucus?  Does it just build up in there??

I'm assuming you have no colon, but the rectal stump is still in place, right? When they remove the rectum and close up the anus, there's nothing to produce mucus, so it's literally a non-issue at that point! Some people may still experience "phantom rectum" where you feel the urge to pass a bowel movement, but there's nothing there. That tends to go away after some time (if it even ever starts).

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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