Hi,

stress makes everything worse. Stay positive, you seem like you have a good support system with your family. You will do fine, the ileostomy is only temporary until you heal and then get the J pouch. I’m 43 years into this, I had the two step Procedure twice six years apart. yes the beginning was tough, But with medication you can control the leaks, Until your body gets used to everything and you should fine. we are here for you.,Sending prayers!

Hey! I am sorry that you need surgery and I am sorry for your suffering. The best advice I can offer is to have faith everything will be okay. Faith and Hope are what got me through the dark times, I hope Faith and Hope can do the same for you. I have made a couple posts of ostomy care that I think will help you. You can message me anytime you need support and I will do my best to be there for you.

God Bless.

https://www.j-pouch.org/topic/...ions-and-anti-fungal

https://www.j-pouch.org/topic/...y-care-that-i-follow

Of course you are absolutely terrified.  This is a huge life changing event.  Give yourself the grace to know it is a big change but having read what you have already been through hopefully this is a means to an end.

My ileostomy was the result of emergency surgery so I had very little time to prepare.  I was given lots of support in the hospital by the ostomy nurses and I went to some ostomate meetings where I met with other people who had ostomies for a variety of reasons.  I believe that was the most helpful because...they didn't look any different or act differently.  They lead full and interesting lives and were full of joy and knowledge.  I also went down the Youtube rabbit hole and watched all kinds of influencers who live with ostomies.  They were full of encouragement.  I also learned many tips and tricks for bag changes and clothing choices via YouTube.

My ileostomy and eventual J-Pouch gave me my life back.  I am so very happy I had it done and have had very few issues.  Sure there is trial and error with the odd leak but you learn to roll with it, learn preventative tips, and always have extra supplies with you.  I continue to work as a nurse, I have been a long haul flight attendant and enjoy competitive highland dancing.

Take a deep breath, arm yourself with solid, up to date knowledge, go to ostomy group meetings, know there are millions of people living productive and healthy lives with ostomies and j-pouches.

Good luck.

Thanks so much. I really appreciate the kind words. This has been so overwhelming. I try to find as much info as I can and get overloaded/intimidated. I've been trying to find in person support groups near me, but haven't found any yet.

The majority of posts here are from folks dealing with challenges. The (many) folks doing very well are mostly engaged in other things. You can use the search function, though, to find the posts from people reporting their successes. A search term like “good news,” for example, will find some of those.

@Jen H posted:

Thanks so much. I really appreciate the kind words. This has been so overwhelming. I try to find as much info as I can and get overloaded/intimidated. I've been trying to find in person support groups near me, but haven't found any yet.

Your welcome. Here is a link to try to find a support group. I used this link and found so much support https://www.crohnscolitisfound...find-a-support-group

https://www.mycrohnsandcolitisteam.com/

Don’t be scared. I know that’s easy to say but I’ve been through it, many people have. I have had my “temp ileostomy” since 2016. I’m just now going in the spring to have my pouch surgery with Dr Remzi. Only thing stopping me was fear. The bag saved my life… I was eat up w cancer… rectal & colon. You gotta stay strong, and learn with each day. It will be good days, bad days, crying days, and days u forget “you’re not normal” … that’s being said leaks do happen , but once you find your right fit with supply’s leaks will prob be very rare. Your sleeping pattern will change, and a lot depends on what you eat to be honest. Supply cost outside of insurance can range. You can almost always find what you’re looking for online for lower cost. I find probiotic yogurt or smoothies always help. Drink plenty of fluids. I avoided soda the first 6 months due to bloating & such. Feel free to reach out if you need to chat, but please don’t be scared… you got this! I promise!

@MichaelChase84 posted:

Don’t be scared. I know that’s easy to say but I’ve been through it, many people have. I have had my “temp ileostomy” since 2016. I’m just now going in the spring to have my pouch surgery with Dr Remzi. Only thing stopping me was fear. The bag saved my life… I was eat up w cancer… rectal & colon. You gotta stay strong, and learn with each day. It will be good days, bad days, crying days, and days u forget “you’re not normal” … that’s being said leaks do happen , but once you find your right fit with supply’s leaks will prob be very rare. Your sleeping pattern will change, and a lot depends on what you eat to be honest. Supply cost outside of insurance can range. You can almost always find what you’re looking for online for lower cost. I find probiotic yogurt or smoothies always help. Drink plenty of fluids. I avoided soda the first 6 months due to bloating & such. Feel free to reach out if you need to chat, but please don’t be scared… you got this! I promise!

Since you have a temp ileostomy, do you mean you are going to have your reconnection surgery in the spring?

Yes

@MichaelChase84 posted:

Yes

Good luck, let us know how it goes

Surgery is scary, however, cancer is more freaky.  Lucky they caught you when you were in the pre-cancer stage!  I went through the 2 step surgery in 2004 and then (while trying to heal) got chemo for 6 months.  That was totally sucky.  Since you won't be getting chemo, you may have an easier time healing than I did.  The point is that I still did heal, and you will too.  You might have the best j-pouch ever!  Lots of people have them and don't have issues. Check back in with this group and people will support you and give you tips on how to manage your new rearranged guts.  I didn't have the benefit of this group back then but wish I had!  They shared so many important and helpful things to try.  My doctor told me zilch about aftercare and had no help for the problems I encountered.  Oh, he did say to use probiotics. 

https://www.j-pouch.org/topic/...7#729094710186155127

Thanks for your advice and tips, I really appreciate it. It's nice to know leaks will hopefully be rare after a while. I'm hoping my insurance pays for most of my supplies. I have to have a prescription though. I've been reading all this advice to buy extra sheets, pjs, pants incontince pads, a support belt and ORS drinks or powder.

I don't think Google has been my friend on that last one. It told me to drink 6 to 8 cups of ORS each day and avoid water. That doesn't seem right.

I'll try my best to take it day by day. I tend to be a worrier. I hope your reconnection surgery goes well.

I didn't have the ORS but maybe it would have been a good idea.  Currently, I make sure to have extra electrolytes regularly, especially when the stools are watery, but not necessarily every day.

There are some folks who need lots of hydration with temporary (loop) ileostomies, but most have more reasonable needs. What is true is that without a colon we need to become knowledgeable about how our new plumbing manages fluid, and what tools work best for us to take proper care of ourselves and avoid dehydration. This is often a combination of strategies, but drinking enough is quite important.