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Posted by Angelicamarie

Ostomates it's 2018 and were still here!! I have read things that different ostamates have experienced. All of them discussed different reasons for getting an ostomy. To some, it meant the end of life as they knew it but the end results where a chance to live. Some are dealing with it gracefully while some are still having a difficult time. Then there a lot of reversals taking place which is great when they are sucessful. People are finding love and sometimes meaningful relationships on this site. But think of this, even if we didn't have an ostomy, we would still have rainy days, but the sun would eventually shine.

I read a story in which I would like to share with you. It follows:

                                                                               A mother's story as quoted by Marieke Hulsbergen

It's about a premature child, whose name is pepijn . When her son was born two months premature, in just a few weeks it was determined his intestines weren't working properly.  At first , the doctors assumed it was because he was premature but later found out it was more to it than immature intestines. After numerous test, he was diagnosed with a disease called Hirchsprungs. This is a disease which is a congenital intestinal disorder. There are no cells present in a certain part of the large intestine.

Pepijn had become very ill because feces were backing up in his intestines. His condition was quickly deteriorating. So his doctors decided to operate in order to examine his intestines thoroughly. They also wanted to give him a stoma in order to give his intestimes time to rest.

Marieke had never seen a stoma, let alone, looked after one before. And now, that was going to happen. The big bag on his belly covered everything. It was so large that there was no sign of the stoma. The next day, a stoma nurse came in to instruct/initiate us into caring for a stoma. At home it seemed that looking  after a stoma was more difficult than I thought. Wafers didnt want to stick, the bags would leak and his skin was red. I was sometimes quite desperate for a solution. Pepijn and I got used to the stoma. we went to swimming classes for babies and I stuck an oaque bag on his belly. No problems!

A few months later I heard that Peijn would have to have an operation and that maybe his stoma would be removed. I was extremely worried. Never the less, Pepijn underwent another operation and his stoma was removed. He is now 9 years old and still don't have a stoma. If this continues , we are happy. Children with Hirchsprungs disease do not nessarily have a stoma but sometimes there is no other way or choice.

Doctors think that a stoma is a last resort and I agree with them . People with a stoma cannot be compared with one another and I think we should try not do do so. Will Pepijn ever have a stoma again, who knows? In any case, I know there is nothing to be afraid of! Hope, what a wonderful word. Happy 2018!


See all blogs by Angelicamarie
tomoc : Hi Angelica I do enjoy reading your posts and this is another good one I think I went through every emotion when I woke up with a stoma instead of a neo bladder. I did want to die and didn’t want to live like this. Well was I wrong!! After 7 months post op I am so happy to be alive and able to watch my boy’’s Last year of college baseball in addition to spending time and playing golf with him. Now it’s not all fun or perfect, example went to casino for a lobster buffet, got a free amazon fire stick and had $240 profit from playing a little slots. Great day but on the way home lo and behold a leak I laughed got home showered and changed bag. No big deal. I’m alive and enjoying life again. I’m glade to be here and adjusting from wanting to die to happy to be alive. I have great HOPE for a long future life. I hope all of us can find hope. Thanks for the post. Tomoc
Bill : Hello Angelicamarie. Thank you once again for another interesting post. HOPE is so important in life as it is the one thing that gives us the will to live and look forward to the future, rather than dread it. My clients used to get very emotional in all sorts of different ways when they felt that their 'hope' had been stolen from them. (usually by politicians) It was sometimes very difficult to re-establish hope in the face of such determined opposition but it can be done with the help of those who know what it's like to have been there and done that! Best wishes Bill
Angelicamarie : Hi tomoc, I agree it’s not always perfect and yes we have mistakes, but we’re here,, thanks for you comments. Angelicamarie
Angelicamarie : Hi Bill, how very true hope does give us the will to go on!! Of course it does help when one who’s been there can tell you their struggles but made it. Thanks for your comments . Angelicamarie
Bill : Hello again Angelicamarie. I feel the need to thank you once again for your post as it came just as I was writing a chapter on how politicians act as bullies and use the making if laws to subjugate the weak and vulnerable whilst simultaneously supporting the strong and powerful. One of my clients, who is long-since deceased, once told me that she felt that they had 'stolen her hope' and the concept has stimulated me to write some rhyming verse on the subject. I will put it in a separate blog because the replies on here do not allow us to lay out the rhyming verses as they should be read. However, I would like to acknowledge that it was your post which prompted me to put my mind to versifying it. Best wishes Bill
Angelicamarie : Bill thank you, I appreciate the fact that it touched you!! Have a great day ! Angelicamarie
scorsby : Angel. Once more a throughly stimulating Blog. Your usual thought provoking high standard. Don't stop as your blogs are wonderful reading. John
Angelicamarie : G'afternoon scorsby, thanks for your kind compliment, and I'm glad you liked my blog hope! Have a great evening!!! Angelicamarie