To stoma or not to stoma?

[Azaelia]

I am actually not as sick as a lot if people on here but get diarrhea and pain a lot.
I'm young and want to be active and can't be stuffed with all the trying different meds.

Is a stoma a way to get my life back? Can you not necessarily take bits out just divert the poop? Coz I have quite yuck perianal disease and am have tried different drugs for a year but am willing to get a bag if that will work better and be more definite.

Can you go surfing with a stoma? Really appreciate any advice.

 

[UnXmas]

You can go surfing. I'm young and have a permanent ileostomy and I love it, my life's so much better but my quality of life was really bad before, and my surgeon and I knew that specific symptoms that caused me awful problems would be eliminated by the ileostomy and compared to a lot of accounts I've read on line and from speaking to my stoma nurses and ostomy product suppliers, I have so far been blessed with a very well-behaved stoma and have experienced very few of the problems that can arise from a stoma (I'm hoping this lasts!).

Have any of your doctors recommended a stoma? Usually it is doctors' last resort, though I know for myself I wished I could have had it a lot earlier. I've found many people and doctors seem to pity me for having a stoma at a young age, but I don't feel like it's something I should be pitied for. I wish I'd had more pity for the terrible bowel problems I had pre-ileostomy!

Maybe you could talk with a surgeon and stoma nurse and see what they say about your situation. This is routine before planned ostomy surgery any way.

I'm not sure whether it always involves removing some bowel. I'm assuming you're thinking of a colostomy rather than an ileostomy?

But it is a major surgery and you may experience complications or have on-going or recurring problems, and your Crohn's may later occur in other parts of your digestive tract, meaning you'd still need to take meds.

For many people it's a tough decision. I was so sure of what I wanted, it was an easy decision for me.

 

[rollinstone]

Iv also wondered the same things I.e diverting waste and not taking any intestine out, (but iv heard it can spread especially over reconnected tissue so you'd have to be on meds anyway), wondering why the CDD have kept you on anti-map if it doesn't seem to be working? Maybe it's time to try remicade or something? Have they tried fecal transplant or anything on you?

 

[Azaelia]

Thanks heaps it helps to know from other people who've experienced disease rather than doctors sometimes. I had a phone consult with my CDD specialist recently because it is costing me a lot and I have had improvement but "still a long way to go" so maybe 2 years away from remission. It is hard to organise all the meds too and they had added more recently so I felt like throwing in the towel. I thought that if fear of surgery and appearance were all that stop people getting ostomies maybe it was a better option. At the moment I am sore every day and get pain/diarrhea at the drop of a hat so it is very limiting especially at work as I have a pretty active job and run classes. Should I wait several years with the Crohns possibly not getting better or jump to the bag? It seems to have improved a lot of peoples quality of life. Perhaps I'm too impatient. I don't know...

 

[Azaelia]

Oh and I did ask about Remicade but I live in a regional area so the lady was unsure how I'd get the infusions as I live 6 hours from the specialist. And no mention of fecal transplant. She suggested I talk to my gp and a Colo rectal surgeon which surprised me coz I do not have a medical degree and get most of my info from the internet and books. I thought she would tell me what to do but she said it was my choice.

 

[rollinstone]

That's okay I understand your struggle, in flying down to Sydney in feb to see prof Borody. In my opinion surgery is a last resort, I understand it helps a lot of people but there are still a few options, a) fecal transplants b) MSC stem cell infusions now being trialled in Perth, c) full stem cell transplant which has shown to cure some people. And Ofcourse remicade which you Havnt tried yet, I would definitely recommend giving that a shot as it helps many, many people. Don't give up, be strong and keep fighting. May I ask, did your colonoscopy shoe granuloma formation? (it would say on the report)

 

[nogutsnoglory]

I would always deem any surgery especially one to create a stoma to be last resort. If all options are exhausted and a temporary stoma may allow your body time to heal it may be right for you but please try everything first. You can live a relatively normal life with an ostomy but it has a lot of inconveniences and I wouldn't voluntarily sign up for one.

 

[Azaelia]

So, just to follow up, although I was primarily just wanting an ostomy to get my life back, now I'm in hospital due to get one this coming Tues (today is Friday). It's an Ileostomy because I have severe perianal ulcers and two strictures, one at terminal ileum and one in rectum. I had been told I was not that sick and just had "nappy rash" by doctors who weren't worried coz my inflammatory markers were not hat high. Turns out my bum is a mess and the reason for the low inflammation is its hardened to scar tissue so I was in danger of obstruction. I thought I was being a princess but the ulcers were constantly discharging and I got to the point where I couldnt eat even liquid nutrition without pain. I thought I neededto ssuck it up and persist on ineffective medication but now booked for surgery. I feel like they have saved me, I was desperate I thought Id lose my job. The pain could be crippling and it was daily.

Don't muck around with specialists unless you trust them and they are helping. Feels like with this Ileostomy and the intrducti on of Humira I have new hope. Pretty emotional for me after over a year of horrible sickness & coping before that.

 

[nogutsnoglory]

Sorry to hear you need to join our club but hopefully your ostomy and the treatment will help turn life around for you.

 

[2thFairy]

Welcome to the cool kids club! I hope you will love yours as much as I love mine. Here's to healthier bums!!

 

[Nyx]

Welcome to our little club Like 2thFairy said, I hope you love your stoma as much as I love mine too! Keep us posted..

 

[MicheleM]

I love my stoma, too! I got mine at age 31. My current surgical consultant said it probably saved me from years of anal fistulas. Good luck for your recovery. Keep in touch!

 

[AussieMumma]

Hi there fellow Aussie. So glad you are getting things sorted out. I currently have an ileostomy. Will yours be permanent or temporary? Hope you're feeling better!

 

[Kat24]

Good luck I'm 24 and I love my ileostomy,I didn't have anything removed when I had my surgery and they want to reconnect me in a year but I want to stay like this!i hope it improves your life as much as it has improved mine

 

[Azaelia]

Hi all, thanks for the support, its so nice to hear from people who have known a similar path. They pushed my operation date back to Wednesday, so its now 3 days to the ileostomy. I've watched videos and have been introduced to a stomal therapist but I still feel like I have no idea what it will be like. My guts feel strange on the lower right side anyway coz they are diseased but I think having a hole in them will be different again! They are hoping it is a temporary measure so the Humira can heal things but they may need to do resections and dilations due to the scar tissue areas.

It's so encouraging to hear about people who've had good experiences with this surgery. It is definitely going to change my life. I'll let you know how it goes. Right now a bit concerned that it will hurt & look shocking, but reckon I will be able to handle it .... Hopefully!

 

[AussieMumma]

Hi again! I had a resection and ileostomy, and to be honest the pain was so much less than the pain I was feeling from being sick! The first day or two in hospital was a little rough, but not at all unmanageable. I feel soooo much better than I did before. And it's nice being able to eat and not feel sick! Sure, I still find looking at my stoma a little weird (hello, that's my intestine! Lol), but then again I had no preparation time, I didn't know I was going to get my stoma. It's great you are doing a bit of research so you will know what to expect! Good luck with everything and let us know how you go

 

[UnXmas]

I've watched videos and have been introduced to a stomal therapist but I still feel like I have no idea what it will be like. My guts feel strange on the lower right side anyway coz they are diseased but I think having a hole in them will be different again! They are hoping it is a temporary measure so the Humira can heal things but they may need to do resections and dilations due to the scar tissue areas.

It's so encouraging to hear about people who've had good experiences with this surgery. It is definitely going to change my life. I'll let you know how it goes. Right now a bit concerned that it will hurt & look shocking, but reckon I will be able to handle it .... Hopefully!

It honestly doesn't look that bad once you're used to it, and it's not like a hole. Most of the time you'll have a bag on and won't see it at all. It does look big at first - what you see right after the surgery is not what you're going to be looking at all the time. The stoma is swollen and very red (in my case anyway - and I believe everyone's swells at first) ; over the next several weeks it will shrink as the swelling goes down. Mine is tiny now - it looks like a pink strawberry. It was more like a red apple in size and colour at first. But I think even if it had stayed that way I'd have got used to it. By the time I left hospital after a couple of weeks (my hospital stay was lengthy because I had complications from the surgery), I was fine looking at and handling the stoma, even though it was still big at that point (the swelling takes around 6 - 8 weeks to go down completely, mine was still shrinking for longer after that).

The surgery will hurt but the stoma itself isn't painful.

 

[nogutsnoglory]

The stoma shouldn't hurt but the area around may be a bit tender in the beginning. It can be a bit shocking to look at but you will get used to it. Best of luck on your surgery. Keep us posted.

 

[Azaelia]

Day 2 of having an ileostomy! I have called it my anemone coz that is what it looks like to me. I think its cute. I'm struggling a bit with post op nausea although no puking. Also a big struggle coz I have a stricture at the rectum which still has stuff in it which still won't come out. I wish they had cleared that out. If it was just the surgery it'd be okay but its like my old issue is still there too. It is so horrible pushing and nothing happens. Feels like ill bust a stitch. On the upside the stoma is working well so it is keeping most stuff away from my tiny shrunk up bumhole. Sorry about the tmi!