My son had an ileostomy mid-January. Still struggling mentally. Also getting pain at the moment when urinating. He has had a few UTIs since the operation. Only had 2 days' notice about the operation, so it was quite a shock for us all. Due to Crohn's.
He is 42 and has a fiancée and 2 children. How long does it take to feel like yourself again and get your confidence back? Anything I can do as his mum? We are all supporting him the best we can. Thank you. x
G-Day Mazzy,
We are all different in that some come out of it all in a short time and others it could take weeks or even months. The fact that you all have his back will be his best healing. Tell him to take it easy in not lifting up the kids and doing anything that could create a hernia, which is a thing we all have to be careful of.
Keep us all up to date and give him our best wishes.
Regards, IGGIE
MeetAnOstoMate.org is the only place where people truly understand you. It's because everyone here has an ostomy.
Many come here for advice or to give advice, others have found good friends, and some have even built long-lasting relationships.
Privacy is very important - there are many features only visible to members.
Thank you so much. I'm in tears reading your reply. It's a very emotional time xx
Hi Mazzy, my heart breaks for your son and you as his mom. How many times as parents have we said we'd take whatever they're going through so they don't have to? Was he in pain from the Crohn's before his surgery? You might bring that up with him. Being out of Crohn's pain can make him accept his ileo more easily, although the pain from his UTI doesn't help. Is his ileo temporary or permanent? He didn't have time to process his impending surgery; he'll be processing it now and needs to. We all vary in how long it takes to feel like ourselves after surgery. The surgeries where I had no choice were harder. The last one, which was my choice, a permanent ostomy, was so much easier. Then, of course, I was out of pain and ready to truly live the life I had been missing. He's blessed to have such a supportive group around him as he navigates this new normal. We're here for you so you can be there for him 💜.
There's little you can do except accept him and make sure he knows that you accept his ileostomy.
I cannot imagine how difficult it is to accept a stoma with little to no warning. I had about 3 months before my surgery to come to terms with the idea that I would have 2 stomas. I was so sick with multiple issues prior to surgery that I got to the point of welcoming the stomas as a relief. He didn't get the time to process all of that.
And even with the advance processing time, it took a couple of months to get comfortable with my new reality. He has to do that while doing all the processing I did in advance.
You both will be in my thoughts.
The fact that you are asking what you can do to support your son shows that you care a lot about him. Keep caring and keep showing him that you care about him. It takes some time to adjust to the "new you" when you get an ostomy. You have to learn how to care for it. Learn how to deal with knowing that you now have a bag. And it takes time before you want others to see it. Sometimes people feel shame. It is nothing to be ashamed of, though. It is just a part of life. Try to show him it can be the new normal. That it's not as big a deal as he thinks it is. Just that it's part of life and meant to make his life better once he adjusts to it. Be patient with him. It does take time.
Just carry on being you, be there to support and encourage him, and I'm sure his partner will be doing the same. There's no time limit on getting your confidence back; just encourage him to go out more with you and family and friends, even if just for a coffee or taking the kids to school or the park. It all helps to build confidence up, and don't be afraid of giving some tough love out in the future if needed. All of us need a foot up our backsides at times; I've often had a size 7 up mine in the past! His stoma nurse can give basic counseling if he needs it.
Be his mom but don't baby him. He and his family need to learn how to deal with this. Eventually, as things heal, he'll get back to his new normal, and life will go on.
Asking him to take a peek at us on here would make you the superhero. He has to be here to talk for himself, vent, ask, and become one of us as a second family.
We know exactly what he's going through and perhaps what the future might hold for him.
What to look forward to: the ups, and what to be aware of: the downs.
Get him on here somehow.
Also, you mentioned he has trouble "weeing"?
Urination issues are common because he was sliced open down there, and it will take time to recover. There is a medicine available to help him pee.
His lower region will have pain. It's common. I hurt for the longest time, but it subsided. I am still on the 'pill,' ha ha, the medication to help pee, like a lot of us are taking daily.
Its generic name is Flomax.
It will get his Peter pumping.
It's the best thing you can do is convince him to board our ship here. We laugh, we cry, we vent, and we get along.
Have him be part of something
that matters: us and him.
Thank you for your story. You are doing the right thing.
Hi Mazzy, Your son is lucky to have such a caring mum. Knowing he has your support and acceptance is a big thing, even if he doesn't realize it now. As others have said, everyone gets to a new normal at different speeds, but give him time, and don't put expectations on him. I was thinking along the same lines as Warrior, that encouraging him to get online with us would be a good step. Let us welcome him and see that there is a whole big world full of ostomates out there that understand what he is going through. He can also ask specific questions about any problems that crop up, as there are always bumps in the road. He doesn't need to deal with it all alone.
Terry
Hi Mazzy, yes, please show him this site. I had a colostomy; I know it's not exactly the same, but the struggle is similar if it's unexpected and without choice. I feel like the mental anguish was worse than the physical pain. When I found this site, I didn't feel so alone. My family was a great, super great, support system for me, but to have people I had common ground with helped so much. To know others were struggling like me with wafers, irritation, anxiety, and anger like I was truly helped me. I think it's so great you care so much to take to the internet to find help and that he has your help and support, and the support as a family too helps a lot. This is not something he has to get over; it's something he has to go through. He will get through it; he isn't alone, and time heals. Introduce him to this site; he can ask anything about any subject, and someone on here will respond without judgment.
Hello,
Sorry to hear your son is struggling. Dealing with a stoma is overwhelming in the beginning. I struggled and was miserable for months... until I stumbled on this website. It's here I learned how to care for my colostomy. Once I gained confidence with the physical aspects of having an ostomy... then I started working on my mental attitude. I'm a little guy. My stoma sticks out quite a bit, a large lump under my shirt. Whenever I talked with anyone new, I immediately pointed at the lump and said, "ostomy." And everyone told me, "Oh, didn't really notice." So I stopped doing that. And a short while later, I stopped obsessing about having the stoma. My wife noticed I was happier. Without my ostomy, I would have died, and my wife a widow.
Invite your son to look at this website. Read the posts and experiences of people from around the world living excellent lives with ostomies. He's not alone. All of us here have had dark days, setbacks, failures, and eventually success. It takes time and determination to discover the ostomy supplies that work best. Everyone is different. What works for me fails on someone else.
Once your son physically heals, it will be easier for him to focus mentally and regain his confidence.
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Hi. Yes, it is a permanent stoma. Thank you so much for your reply xx
Mazzy,
It's like most things. It's such a new experience and can be a difficult journey when trying to get back to normal, at least as normal as one can breathe with an ostomy. Just support him and let him know that with time he'll learn to adjust. He just needs good people around him, and he'll be fine. You could also have him join this site. We have all been through his experience and just need like-minded people who can relate. I'll be the first to offer my friendship from across the pond. Good luck to your son. I hope he can make the adjustment. Take care.
