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Ostomy x2.  


Joined: 1 week ago
Posts: 2
December 4, 2018 3:40 pm  


I am having a colostomy done at the end of this month.  It has been a two year struggle to get this far. What's more, this will be my second colostomy in my life, with this one being permanent.  

The first was done right at birth, as I was born with Cats Eye Syndrome ( trisomy 22) which caused anal atreasia.  In other words, I have no natural rectum. By the age of two I had everything cobbled together and lived a relatively normal life. 

Now, my colon has just stopped working on it's own and as a result, my life has been turned upside down. I am eager to have this done, though a bit scared.  My main fear is that I will not be patient enough with myself.  I don't like to be kind to myself and within about a day of being told I need to rest, I go all Yellow Wallpaper and start getting a bit nutty. 

I am hoping that I can catch up on my reading and anime list while I recover and I won't get to stir crazy.  

At the same time, I am a massive nerd, with an interest in medicine ( I recently got to see the Ether Dome in Mass General) so I'm finding everything I'm going through absolutely fascinating. I'm actually looking into becoming a surgical tech.

I hope to gain tips and tricks for living with an ostomy, and maybe make a few friends as well.  I don't do so well with face to face social interactions, so I am grateful that I found this forum.

Dona and john68 liked
Joined: 5 years ago
Posts: 1939
December 4, 2018 3:55 pm  

Welcome to the forum, CatEyed22!

I had to look up what Cats Eye Syndrome is - quite fascinating, despite the obvious difficulties it's caused you. 

Becoming patient (in general) is a skill that's difficult to develop, but worth trying. Keeping yourself occupied after surgery is actually a great opportunity to catch up on things. I enjoy that downtime, so I hope you see it as a positive too. 

We're looking forward to having you here. Best of luck with your surgery!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~

john68 and Dona liked
Joined: 1 year ago
Posts: 1114
December 4, 2018 4:19 pm  

Hi CatEyed22, glad meet another new member, I am like you I get "Cabin Fever" very easily. But we have to look at the rest time as some thing will benefit us in the long term. If I can give you one bit of advice before surgery it would be the placement of the stoma. ie a good site where the wafer sits well and works with your clothing. Wishing you all the best and look forward to your input.

ileostomy 31st August 1994 for Crohns

Dona and VeganOstomy liked
Joined: 2 years ago
Posts: 570
December 5, 2018 12:58 pm  

Wellcome to this forum, Cateyed22.

Its always good to have more input here as everyone has a unique story. I think you will be able to live very well with your new stoma. Like most of us ( however we got here ) life will be better after the new improved output system.  You will have to rest and heal but might be surprised how fast that happens. Especially if you aren't really run down physically  going into this. It also helps that you are 'up' for this. I felt nothing but relief.  

Like John said.. be sure to get a good placement set and marked for the stoma. At stoma nurse usually does this prior to surgery.

I read a lot though and can be lazy, so recovery was like a vacation.

I hope that you do go on to some medical field of work. It would be great to have more people  with actual experience  of a stoma in the medical professions.

Keep us posted and ask any questions at all ...hopefully someone will know something useful.

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

VeganOstomy and john68 liked
Joined: 8 months ago
Posts: 115
December 5, 2018 8:26 pm  

Hello Cateyed22,

Welcome to the forum! I have to agree with everyone else that being patient with your healing and having a good attitude will help a great deal! Don't get hard on yourself and be kind to yourself as well. You are not alone in this - we have all gone through what you are about to and are here to help support you anyway we can. 

God bless,


VeganOstomy and Dona liked
Linda Knelsen
Joined: 1 year ago
Posts: 232
December 6, 2018 11:46 pm  

CatEyed22...welcome. I have to admit that I was happy to hear from you. But not about your situation of course. Please let me explain...I do not know you personally, but it is because of a baby, born the same day as my daughter that I was able to go ahead and have the surgery for my ileostomy, and knew that I was going to be just fine after. After my daughter was born, and I was in my room from the C-section, there was a young Mom in the bed next to me. We were the only two in the room. She was upset and crying.  I asked if they were tears of joy? When she explained that her little baby had been born without a rectum and that the infant had been flown to childrens hospital and surgery for a colostomy would be done until the doctors could make a new rectum for the baby. I prayed for that little family a lot over time. I was amazed at her strength. We kept touch for a while after our babies had been born and we even got together in my home for a visit. I remember her having to change the pouch when she was at my home and how much courage she showed in this adversity. The little baby was content as he/she, tho I am sure the baby was a boy, new no difference. I had been dealing with bowel issues since I was ten and seeing for the first time ever a colostomy was actually very impressive. I had nursed in geriatrics, so I have to admit the medical end of it amazed me a lot. To think that a new rectum and anus could be made for this baby was incredible. We have a lot to be thankful for in the world of medicine. My only regret is that I never was able to keep in touch with this Mom after that meeting. I enjoyed her and admired her greatly. About your coming surgery, I think a little fear is normal in any situation. Even healthy. You will do well and heal well I am sure. You have an understanding most do not. While you are recovering, why not watch surgical videos and learn more. The world would be nowhere without nerds. My son and his wife are nerds also. Her children are ahead of them. I think what boils down to being a good nerd is what you do with it. To think that your system worked so well for many years taking you to this point is really amazing also. I wish you all the best and hope you will let us know how things went and are going for you after surgery. Thank you for writing in. 

Dona liked
Joined: 2 years ago
Posts: 570
December 7, 2018 10:31 am  

Thanks for the beautiful remembrance, Linda. 

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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