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. 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 Colostomy 4/30/18. 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. 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 Hi Jayne, Welcome! You've picked the best place to get information and support! Stella 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. Linda Linda 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.. 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. Tony
I love the smell of coffee in the morning. It smells like .... victory.
~ Crohn's Disease ¦ Ileostomy ~
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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May 29, 2019 5:16 pm
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