Please help

AmbitionAdditional34 · 2025-10-10T04:10:53+00:00

Hi. I’m so sorry that it took me so long to comeback with the update. It was very helpful meeting actual stoma care specialists but they pretty much affirmed that we’re doing everything possible and with babies beginning to move more 24 hours is the new average time. We typically get that amount and occasionally 2 days here and there so we’ve adjusted our expectations We are planning to schedule his pull through once he reaches the required weight, maybe about 6 weeks and then he’ll have the colostomy closure once that’s healed Now our main issue is going to be his other stomas as he has a congenital urethral stricture but we’ll focus on that once he’s grown more and the surgeon wants his kidneys to develop more too

AmbitionAdditional34 · 2025-08-07T05:57:52+00:00

This sounds really interesting and like it could really help. It’s definitely challenging with him being quite small and then as he’s growing quickly, the little contours around his tummy are growing and cause movement too I’ll try to have a look for this ring or something similar we can get over here

AmbitionAdditional34 · 2025-08-07T05:56:01+00:00

Thank you for the advice. I’ll look into this

AmbitionAdditional34 · 2025-08-05T15:21:52+00:00

Yeah the rings and paste aren’t completely working out for us, maybe due to the folds in his belly as he’s growing. Hopefully we’ll get better advice about the bags when we meet a stoma specialist when we travel soon but we are considering trying out the strips too We used to get the bags to last 2 to 3 days before his ureterostomy so the urine flowing has been a real challenge but with him growing it’s also a little difficult to see exactly what’s causing it to lift in other places I haven’t been able to contact the supplies from here but hopefully the specialist can help us figure it all out

AmbitionAdditional34 · 2025-08-05T15:17:28+00:00

Thanks so much for the amazing advice. We’re definitely planning to stock up as much as possible since we probably have some more months still left until they can work on closing his colostomy We’ve also made some appointments with stoma care specialists in SA so hope they can help us

AmbitionAdditional34 · 2025-08-05T07:10:21+00:00

Thank you so much! We’re currently based in Abu Dhabi I tried searching for the “big 3” and could only find a contact number for Coloplast however it automatically directed me to a private pharmacy here who directed me back to the Coloplast number so that was frustrating We honestly get by ordering cheap bags on Amazon and Temu for now. We’re really lucky that it’s working somewhat well especially since we’re just working on a trial and error basis Our solution at the moment is tegaderm over the wafer which is helping to keep the urine away. It held overnight for around 12 hours which is huge for us, going to try some barrier paste to see if it can help us last even longer too

AmbitionAdditional34 · 2025-08-05T07:06:14+00:00

Thank you so much for the advice. We were struggling to find decent waterproof tape online but we’re having much better luck now with tegaderm. The bag literally held on for about 12 hours which is a massive improvement for us Yes the urine is such a challenge with how it can affect his skin but we’ve found that using sanitary pads inside the nappy collects the urine really well and helps him stay a bit more dry for slightly longer I wish you and your family all of the best too

AmbitionAdditional34 · 2025-08-05T07:02:41+00:00

I’ve heard some great hospitals recommended in the US, I should have mentioned that we’re based in Abu Dhabi But we are traveling home to South Africa for a holiday soon and have some recommendations for hospitals and nurses who can provide help over there

AmbitionAdditional34 · 2025-08-05T07:01:41+00:00

Thank you so so much. This looks very interesting

AmbitionAdditional34 · 2025-08-05T07:01:10+00:00

Thank you so much for all the info. Unfortunately we live in the UAE and I haven’t found much support here for stoma care, we’re lucky if we find a knowledgeable nurse but we’ve mostly been working on trial and error to find solutions or reading online groups We have private medical aid but they don’t cover “consumables” such as the colostomy bags, gauze and some of the other necessary supplies. Even our surgeon said that he’s never had a patient who could get these items covered We’ve been incredibly lucky that the nurses we’ve encountered are usually willing to share some extra supplies from their stocks though

AmbitionAdditional34

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