Some people are shocked when I tell them that I am not going to reverse my stoma and become bagless. I've been told by quite a few people that because I'm a young woman I should try reversing my stoma however I'm choosing to make my stoma permanent and literally have a bag for life! I've had a few questions as to why I'm keeping him so I thought why not do a blog post on it!
*Discalimer : these are just my own thoughts based off information I've been given by my doctors! I'm just voicing my own opinions and hope to give some support to others going through the same decisions!
Lets start at the beginning with this. I currently have a temporary stoma with the option to either make it permanent and keep my bag or have a j pouch created which involves having an internal bag created. I have to choose one of these options but I've had the time to consider both and whichever I choose will be classed as elective surgery.
I've had a love hate relationship with my stoma but we're mostly on the love side nowadays! It didn't take me too long to get used to it and I have to say, I've gotten so used to having a bag - I have a routine with it and my actual stoma I have no issue with. My mucus fiscula on the other hand, which I'm getting rid off, causes me a few more issues which is why I can't wait to have my stoma reversal! I've been very lucky with my stoma; I was happy with the positioning and apart from two little blockages (due to me trying and failing to eat mushrooms!), I have had no problems with it *touch wood*! I definitely think that because my ostomy surgery was so successful I am definitely more willing to keep the bag.
One of the main reasons I don't really want a j pouch is that initially after surgery you can be going to the toilet up to 20 times a day. I've been there, done that and definitely do not want to go through that again! I've read some stories that people are still going to the toilet 10 times a day and it just gives me flashbacks to not wanting to leave the house during the days of colitis flares.
Another main reason I don't want to have a j pouch is that the pouch might fail and I'll end up with a stoma again and this time my stoma might not be as good as the one I have now. There's also more and more surgery involved and I really don't want that! Because my stoma works really well, I don't want to risk getting a new one which isn't as good. There's also the issue of scare tissue and the more surgery you have, the more scare tissue which can effect you!
Would I like to have a bag free stomach again? Of course I would but the risks of j pouches and my own concerns mean I would way rather have a bag on my tummy. At the end of the day, my stoma not only saved my life but also gave me my life back and having a bag on your stomach isn't that bad in the grand scheme of things (Most of the time!)
Let me know in the comments below you're thoughts on j pouches and stoma bags! I'd love to hear your own stories about choosing one or the other!
Ostomy posts are sponsored by SecuriCare and CliniMed
I have an ileostomy and feel the exact same way as you. I spent 6 years in the bathroom, finally I'm not there constantly and my stoma is good to me, so why mess with a good thing? I've had mine for 7 months now. All the best to you!
ReplyDeleteThat's my feelings too! I'm glad you liked the post :) - Katie May xo
DeleteI had my ileostomy after 10 years of UC and finally months of being housebound with 2 children under 10. I spent almost 12 weeks in hospital before my total colectomy! When I got my stoma my life changed! I felt well again put on weight was able to go back to work! I absolutely refused to even contemplate a j pouch I had heard so many stories and like you didn't want to go back to living in the toilet! Fast forward 18months and my surgeon told my my rectum was beginning to show signs of deteriorating so I had to make the decision, permanent stoma or pouch! I decided I may regret not trying it so I went for the j pouch op! That was 21 years ago! Yes I have had some issues with the pouch ( mostly I have a stricture behind my old stoma site that can cause a blockage) but other than that. I have more or less lived a normal life (whatever you class as normal!) I can go to the toilet 6-8 times day but it's not like with UC and you have much more control, and often I go just for convenience excuse the pun! Sorry for the long message I just wanted you to know there are some success stories out there! Good luck with whichever decision you make! ❤️
ReplyDeleteThanks for sharing your story Di, it's so great to hear stories of successful j pouches too! - Katie May xo
DeleteThank you Katie for this information. My 29 year old some just recently had an had ileostomy surgery. He has been sick since he was a teenager. He is also a Liver Transplant Patient. He had that surgery about 5 years ago. He has suffered for years with UC and after the Transplant had repeated attacks of the CMV virus that also mimmicks UC. The Hospital sent him home without fully being prepared for the after care and we had a crazy time trying to figure out what supplies he actually needs. I have been researching and calling companies like crazy to actually get the education that we should have gotten in the hospital. The entire thing was quite a challenge especially because of he is also immune suppressant the worry of him getting an infection.. Now I am concerned because in 3 to 6 months they want to give him a second surgery.. So before we go in for that I am going to research everything.. Never even thought about him being able to just stay with the pouch. After reading this you have sparked another option for him. He seems to be adjusting to the bag nicely and maybe we should just leave as is. Thank you
ReplyDeleteI hope that your son gets better soon! It's so confusing and hard to know which option is best - making a stoma permanent is another surgery but if he's coping well with the bag it may be a good option to look at! Don't be afraid to ask the surgical team questions! If you have any questions, feel free to ask me and I'll try and help you as much as possible! Also try of the forums on Facebook; everyone is normally really helpful on there! - Katie May xo
DeleteWow Mary. I am a Liver Transplant Recipient 23.3.16) with CMV. I have a temporary Ileostomy that is planned to be reversed in 10 days (21.2.17). So many fears as I was in hospital for 5 months! How did your son go?
DeleteThanks Katie - I could easily write a very large blog on this subject....but to keep things brief, I had the temporary stoma for a year and should have done the research (the internet was not so helpful in the late 90's). I had 7 years of misery!! Going to the bathroom urgently, was not really an issue as I was going between 6-8 times a day, but blockages were major. Starving myself either on hospital on IV fluids for up to two weeks to clear or 'untwist' the pouch or at home sipping water up a week once the vomiting stopped...ehhhh. I had between two to twenty blockages a year, so, by November 2010 I had enough. The surgeon asked me several times if I'd like the stoma back, but always said, let's give the pouch another go, but I finally agreed. At last, after some tweaks at the start getting used to things and finding the right bag, I've been great. Even my weight (which should around ten stone), has gone from seven stone and 6 pounds (!) to just over 9 stone now. Sorry for the long message, hope it helps others. Thanks xx
ReplyDeleteThank you for telling your story on here Steven! This is one of the things I'm really worried about with j pouches as I've heard a few stories similar to your own. I'm glad to hear that you and your stoma are getting on well and that your putting the weight back on too! - Katie May xo
DeleteKatie, I think alot of people who have a tempoary stoma dont realise they can choose to keep it, over getting rid of it and having a J pouch. Its nice to hear someone thinking about the long term benefits of a stoma.
ReplyDeleteFor me, my ileostomy has always been a permenant one but if they had decided to make it tempoary I would keep it. My QOL now is far greater than without it.
I'm really glad you liked the post Louise! I hope that it can show people some of the different options which are available :) - Katie May xo
DeleteI had my stoma in June this year, after years of wanting the bag. The J pouch (or a reversal) is not an option as far as I'm concerned. The bag doesnt bother me in the slightest, its given me back control of my life. My stoma behaves wonderfully and my diet is pretty much everything. I would not even consider a j pouch, to me that's going backwards :) enjoy your stoma and your freedom xx
ReplyDeleteI had my stoma in June this year, after years of wanting the bag. The J pouch (or a reversal) is not an option as far as I'm concerned. The bag doesnt bother me in the slightest, its given me back control of my life. My stoma behaves wonderfully and my diet is pretty much everything. I would not even consider a j pouch, to me that's going backwards :) enjoy your stoma and your freedom xx
ReplyDeleteI have a stoma, Mine is permanent also from rectal cancer. Therefore it is not quite the same; however I would rather wear a bag than a diaper. It is not the best but it saved my life..
ReplyDelete