Called Cleveland Clinic yesterday to schedule surgery. Want to know what exactly I can expect. How painful etc. how awful is the bag until 2nd surgery. How soon can I expect to have surgery? Had last Remicade 8 weeks ago and stepping down on Prednisone from 40mg a day. I'm a stay at home mother of 4 girls ages 5-13. What help will I need. Physically in great shape, mentally a wreck.
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I find it depends on where your coming from. when my colon was taken out i was doing fairly well but the medication was slowly losing effectiveness putting me back in full blown flare like all the other medicines did. so when i got the ostomy coming from a decent day to day life it was terrible. my head wasnt in it, i was pretty sad about the whole thing, i ate barely anything just enough to appease those around me.
i got the j pouch a month and a half after...was great for a couple of months then she wanted to scope me to see how it was, right after that scope things just went downhill, terrible straining, 25+ bathroom trips a day, it was like she pissed off the j pouch or something. after a year of living with that, numerous blockages (there were some clear days in there but so far in between) i went back to an ostomy (see my signature) the ostomy gave me back a life of doing ANYTHING. i went from a terrible bathroom trip life to ostomy and this time around it was a god send. im going back to a j pouch on January 26th in about a week basically and im scared to death.
how many surgeries are you doing for this? 2 or three? having the colon removed was probably the number 2 BIG thing that really hindered me doing anything. the first thing that hindered me was getting used to the j-pouch.
i got the j pouch a month and a half after...was great for a couple of months then she wanted to scope me to see how it was, right after that scope things just went downhill, terrible straining, 25+ bathroom trips a day, it was like she pissed off the j pouch or something. after a year of living with that, numerous blockages (there were some clear days in there but so far in between) i went back to an ostomy (see my signature) the ostomy gave me back a life of doing ANYTHING. i went from a terrible bathroom trip life to ostomy and this time around it was a god send. im going back to a j pouch on January 26th in about a week basically and im scared to death.
how many surgeries are you doing for this? 2 or three? having the colon removed was probably the number 2 BIG thing that really hindered me doing anything. the first thing that hindered me was getting used to the j-pouch.
Funny! I have 4 girls the exact same age range.
I didn't have to go through the surgery myself but I was there every second for my daughter. She was very tired after the surgeries and rested a lot after the first and second. I needed help with the other girls while I was helping her at the hospital and at home. She wasn't suppose to lift anything heavy for awhile so for you lifting kids, laundry, etc. might be harder for awhile. As far as the ileostomy and bag are
concerned it is hard but you get used to it.
We prepared ourselves by watching YouTube
videos on how to change the bag and what
the ileostomy would look like when she came out of surgery. We bought a band for her waist so she could tuck the bag into it and no one could tell she had it on. She was really sick before the surgery so she felt a lot better after the colectomy.
Definitely have an ostomy nurse show you how to change it and what equipment to use.
I didn't have to go through the surgery myself but I was there every second for my daughter. She was very tired after the surgeries and rested a lot after the first and second. I needed help with the other girls while I was helping her at the hospital and at home. She wasn't suppose to lift anything heavy for awhile so for you lifting kids, laundry, etc. might be harder for awhile. As far as the ileostomy and bag are
concerned it is hard but you get used to it.
We prepared ourselves by watching YouTube
videos on how to change the bag and what
the ileostomy would look like when she came out of surgery. We bought a band for her waist so she could tuck the bag into it and no one could tell she had it on. She was really sick before the surgery so she felt a lot better after the colectomy.
Definitely have an ostomy nurse show you how to change it and what equipment to use.
I had a 3 step surgery. My first surgery was emergent and I was in the ICU doing horribly in the hospital beforehand. After my surgery I immediately started feeling better although I did stay in the hospital for probably a couple weeks afterwards. I was really scared of the ostomy bag for a while because I didn't know what to expect.
I agree, stoma nurses help so much!
My pediatric floor gave me a bunch of videos too and taught me everything I needed to know before I went home as well. I am not sure how much different peds and adult care is because I am still in peds, but I imagine they will teach you everything.
If you're physically in great shape, I wouldn't be too worried
I hope everything goes well
I agree, stoma nurses help so much!
My pediatric floor gave me a bunch of videos too and taught me everything I needed to know before I went home as well. I am not sure how much different peds and adult care is because I am still in peds, but I imagine they will teach you everything.
If you're physically in great shape, I wouldn't be too worried
I hope everything goes well
I certainly understand you being a mental wreck. I was too. I had my first surgery in May 2013 with takedown in August. You will have pain of course. The biggest issue I faced was not the pain but dealing with the bag. Make sure you have a nurse helpingou when you get home. My stoma was so flush with my skin I had to have convex wafers to stop the leaking. Once I got the hang of the bag, it was wonderful. I started having a life outside of my bathroom!! I was nervous about the takedown because life was so good with the bag. Of course living without a bag is better! I am a very happy J Poucher! Good luck!