I had to go do a simulation the other day where they made a mold of my body and marked several areas on my body. They put me through a scanner to watch how the nodule moves around as I breathe. This will help them plan the actual treatment.  The planning will last for 2 weeks and I'll get the treatment later this month. It will only require one treatment and was told that the usual side effect will most likely be some fatigue. 

Then will get scanned again in 3 months to make sure it's shrinking or gone away. I have my fingers crossed. 

But as far as my bag issues go, thankfully there are none. Hence no posts. I got my routine down. Change once a week 98% of the time. Sometimes twice a week in hot weather and lots of bending at the waist. Health is not too bad considering my age and bad habits. So just to let folks know.This thing can work out okay. Sixty eight now and still working 40 hour week or more with a fair bit of physical exertion at work and at home. I don't have any unusual tips or tricks to offer. But if you want to know anything just ask. I may just be lucky.

I have recently been plagued by a problem that I’ve never encountered before. I have noticed a smell coming from my pouch. I am not eating anything unusual that may cause this.

I am wearing an Eakin Ring, Convatec appliance and a Convatec pouch - the same products I have been wearing for years.

It’s not too bad. My partner doesn’t notice it, but I do.

Thoughts?

meredith 

I came across an article for a municipality in my region, who announced that they will be participating in the "Hidden Disabilities Sunflower" program.

As it turns out, our regional transit authority is also part of the program, and as I explored deeper, the United Ostomy Association of America is, too.

So, I had a look ( https://hdsunflower.com ) and ostomy was being featured in their index of non-visible disabilities.

What I understand from the program is that participating businesses, airports, transit authorities, etc., train their staff to recognize patrons who are showing the Hidden Disabilities Sunflower (lanyard, pin, wristband, etc.), and they'll discreetly know that this person may need extra assistance.

It's an interesting program, that I'll be looking out for now. It's apparently in countries all over the world.

My only real hesitation is that the program is being run by a private company (based out of the UK), not a charity or non-profit. Their business model suggests that revenue is generated through the sale of their Sunflower products (pins, lanyards, etc.), as well as memberships for organizations.

They've been around for nearly 10 years. 

Anyway, have any of you come across this program?

Im wondering if anyone else with an ileostomy has had to drink these and if there's one that may not cause this side effect for us. My PCP is clueless about this.

It's really been wearing on me. I can't seem to get a good seal and even the ones the stoma nurses have put on don't seem to last either. They really have not offered any solutions other than one time to try without a ring but then stool got under my pouch barrier. After a couple empties I start to get odor and this has really been distressing me terribly as I live in an apartment building and worried about odor.  I can't afford the deoderant M9 any longer as I'm on a fixed income. I found myself not wanting to eat much or to go out of the house around people due to this. It's had me tearful and with situational depression. 

My original colorectal surgeons secretary called me due to me telling the stoma nurses that I wish he could fix my stoma but that he can't because there is mesh in there and that's not his specialty. But anyhow I had mentioned to the nurse I wish they could go into surgery together, him and my general surgeon to fix this thing. So due to this she said he is offering me an appointment to come speak with him about this. It may be a possibility.

I understand that my surgeon tried and he did his best and I'm not knocking him. He's a very good surgeon but a complex situation with the mesh inside and as he told me , they can't sit me in an upright position on the operating table as to see what I'm seeing when I'm standing changing my pouch. I totally get this and I know it's not his fault. I mean, who would have ever thought that I'd be getting 6 bowel obstructions from adhesions in 4 months time and then having open surgery having to cut through the mesh.  I'm just thinking that maybe with both of their heads put together and by going into surgery together that just maybe I can get this thing fixed to an at least manageable state

I hope you are all well!!  ❤️

John succumbed to cancer on February 24th, 2025, just one week after his last update.

I know that at the time, he had been given a prognosis of 3 to 6 months by his doctors, so his loss was unexpected.

I would like to personally thank each of you for supporting John over the past year, and for all the love you gave him.

Please keep Lorraine in your thoughts through this difficult time.

John was always such a positive person, and even as he was fighting against the odds, he remained optimistic with a sense of humour!

I will miss John, but I will never forget him.

Eric

Every year on my birthday I reflect inward and thank Squeaky for all these years I almost did not get. I came so close to dying in 2018. The Doctor was surprised I made it through surgery and if my hubby hadn’t called the ambulance, I probably would have died of sepsis, since my colon was perforated in two spots and just leaking into my body.  

So Squeaky's birthday in June is a big day for me, but I also think about how lucky I am on my birthday as well.  I've always loved my birthday and so far now Squeaky has given me 7 more that I might not have gotten. 

I hope you are all doing well today. ❤️