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Hi everyone  


Joined: 4 months ago
Posts: 1
May 29, 2019 6:16 pm  

I'm Jayne and I have had an ileostomy since May 5, 2017 because of fistulizing Crohn's colitis. My wound opened after surgery so couldn't go back on a biologic right away so I won the lottery. Crohn's returned in my stomach 5 months post op and brought along severe gastroparesis (delayed gastric emptying). I was down to 100 lbs at 5'8 and none of the very limited less invasive treatment options for gastroparesis worked (there aren't very many) I had surgery for a jejunostomy (j) feeding tube in Oct 2018 which bypasses the stomach directly into your jejunum. That's how I receive most of my nutrition.

Fistulizing Crohn's diagnosis Jan 2015
Total proctocolectomy with end ileostomy May 2017
Gastroduodenal Crohn's Oct 2017
Gastroparesis Nov 2017
Jejunostomy (j) feeding tube surgery Oct 2018

IleosTony, LK, john68 and 1 people liked
Joined: 8 months ago
Posts: 63
May 29, 2019 6:34 pm  

Hi Jayne, Welcome. There is so much great stuff on this site, and Eric is a superhero! I have learned a lot, met wonderful people, and have appreciated the support and stories so much -  I hope that you will, also. LLNorth

I love the smell of coffee in the morning. It smells like .... victory.

Joined: 5 years ago
Posts: 2390
May 29, 2019 7:14 pm  

Hi Jayne, welcome to the forums!

Thank you so much for sharing your story and I hope that you're able to make use of the forums and VeganOstomy website! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~

LK liked
Joined: 2 years ago
Posts: 1339
May 30, 2019 6:46 am  

Hi Jayne, welcome, it’s always great to meet a new member and hear  their journey  . Enjoy making use of the forum 

ileostomy 31st August 1994 for Crohns

Joined: 1 year ago
Posts: 279
May 30, 2019 8:20 am  

Hi Jayne,

Welcome! You've picked the best place to get information and support!


LK and VeganOstomy liked
Joined: 2 years ago
Posts: 575
May 30, 2019 5:53 pm  

Hello Jayne...Welcome to Erics site. Your have been thru so much!  If your 5"8" and under 100 lbs. you really dealing with a beast.  I have a friend who has severe gastroparesis, he gets "Botox" injections once every 5 to 8 weeks depending on if it takes or not after the injection. He travels 6 hours each way to get them. When they work, they really work.  I admire your strength in continuing to fight this disease. Here, you are alone only until we catch up to you. How are you dealing with the feeding system? Are you at home or in hospital? For me, TPN and in hospital was a struggle. Chime in here when you like, and feel free to help others also. Sometimes, just knowing someone else is or has dealt with these issues goes the mile, as well as a friendly ear.  Questions or updates are always welcome.  Stay strong and be as well as you can be! I will add you to me prayers.



IleosTony liked
Joined: 2 years ago
Posts: 1506
May 30, 2019 7:35 pm  

Hi Jayne,  I am also 5'8" tall and got down to 100 pounds.  After being so sick etc.  The weight will come back little by little--  I gained 30 pounds within 5 years- but now going backwards again-- other health issues.. Just eat what YOU want and CAN eat--- Protiens -sp- did not put the weight on me at all-- but that is what I wanted for my body-- then, I was feeling up to par so to speak and enjoyed everything!! So do what u can and relax and get better.. 

Best- Marcie...……..

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

IleosTony liked
Joined: 5 months ago
Posts: 110
June 10, 2019 6:56 am  

Hi Jayne,


You're quite welcome here. Thank you for sharing your story with us. This site is the single most comprehensive source of information and support for ostomates that I've found. Ask your questions. Share your fears and frustrations. Don't hesitate to encourage others or share some tidbit if you see that you can help someone else. You don't have to be an expert or veteran ostomate for your input to be well received and appreciated.

Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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