J-pouch removal set for tomorrow morning. Wonder if I will sleep a wink tonight?
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Best wishes to you! We're all rooting for you!
We look forward to hearing that your surgery went smoothly and that you are moving into a new, healthier, more satisfying chapter of your life.
Good luck tomorrow.
We look forward to hearing that your surgery went smoothly and that you are moving into a new, healthier, more satisfying chapter of your life.
Good luck tomorrow.
maximus thinking of you today and your soon to be new and improved quality of life. best of luck.
Good luck. I pray yours goes as well as mine did!
max.
thinking of you this week. hope all is ok and you are making progress in your recovery.
liz
thinking of you this week. hope all is ok and you are making progress in your recovery.
liz
Love the anniversary of having my j-pouch disconnected....I truely got my life back! I am closer to "normal" then I ever have been since developing UC in 1985...best of luck to you!
I hope your surgery went well, you have been in my thought and prayers.
has anyone heard from maximus? surgery was more than a few weeks ago.
I know he has been logged in on the site since his surgery I have been thinking about him too.
Hi guys. It's me Maximaus. I am actually a female. My real name in Laura. I am sorry I have not signed in for a while. It was a lot tougher then I imagined it would be. It seems as though every thing that could have possibly gone wrong did! The j-pouch was fused to my pelvic bone so the surgeon had a horrible time trying to remove it. I lost a ton of blood and had to receive over 12 tranfusions. I lost count after 10. I spent two days in ICU because of my heart rate and blood loss. I woke up feeling like I was hit by a train. They had to reduce my pain meds at first because my heart rate was too high. Ouch! Fast forward to 8 days in the hospital. I am in horrible pain, I keep complaining that the meds are not helping. It is not the usual post surgery pain. But I figured, I have never had this type of surgery and they keep telling me that the pain in normal.
I am released from the hospital. Once I get home, it gets worse. I was in the worst pain of my life and I could not pee on my own. I keep calling for stronger pain meds. They send me to a urologist who sends me home with a catheter. Once that gets removed, I still have to self cath when I want to pee and the pain is not any better. My doc keeps telling me it will take time. Then one night after I cath myself, I turn to the sink and all the sudden, blood starts pouring out of me. I mean, like hollywood style. It was unreal. I am then taken by ambulance back the hospital. It turns out I had a HUGE abscess in my pelvic area. It got infected and I developed a fistula which allowed the blood to escape through my vagina. They put a drain in my pelvic area by way of my butt cheek. This was really painful. I stayed in the hospital another week. The drain was removed about a week after I got home. Thank god. Impossible to move around with a tube hanging out of your butt cheek, not to mention sore. When I returned to have the drain out, they found another area that looked like a abscess. They drained it and said it was huge cyst, but sent me home.
So now I am home and finally starting to heal. It has been an unbelievable series of events. I have not even been able to give any thought to the ileo. I have a long road ahead of me, but think I am finally on the right track. Every pain I feel now, I am afraid it is another abscess. I am positive that I had the first abscess before I even left the hospital. Had they done a scan before releasing me, they would have caught it and avoided weeks of torture.
Now that things have calmed down a bit, (knock on wood) I am trying to adjust to the ileo. I was doing great at first, but have started to get irritation. My nurse said, it is most likely a yeast infection, due to all the antibiotics I was on. She prescribed the Nystop powder and told me to use the eakin ring for a good fit. I have lost 20 lbs in a month so she said the stoma has changed a lot. I have been instructed to use the powder and rings and change every other day until it clears up. I am looking forward to it. I want to start experimenting with all the different bags out there. I am still using the one piece with the clip.
Sorry this is such a long post. I thank you all for the get well wishes. I have missed this site but was just too sick to sign on. I am sure I will have a ton of questions regarding my ileo moving forward. It is just starting to sink in that this is perm. But will be sooooo worth it once I am all healed and feeling good!
I am released from the hospital. Once I get home, it gets worse. I was in the worst pain of my life and I could not pee on my own. I keep calling for stronger pain meds. They send me to a urologist who sends me home with a catheter. Once that gets removed, I still have to self cath when I want to pee and the pain is not any better. My doc keeps telling me it will take time. Then one night after I cath myself, I turn to the sink and all the sudden, blood starts pouring out of me. I mean, like hollywood style. It was unreal. I am then taken by ambulance back the hospital. It turns out I had a HUGE abscess in my pelvic area. It got infected and I developed a fistula which allowed the blood to escape through my vagina. They put a drain in my pelvic area by way of my butt cheek. This was really painful. I stayed in the hospital another week. The drain was removed about a week after I got home. Thank god. Impossible to move around with a tube hanging out of your butt cheek, not to mention sore. When I returned to have the drain out, they found another area that looked like a abscess. They drained it and said it was huge cyst, but sent me home.
So now I am home and finally starting to heal. It has been an unbelievable series of events. I have not even been able to give any thought to the ileo. I have a long road ahead of me, but think I am finally on the right track. Every pain I feel now, I am afraid it is another abscess. I am positive that I had the first abscess before I even left the hospital. Had they done a scan before releasing me, they would have caught it and avoided weeks of torture.
Now that things have calmed down a bit, (knock on wood) I am trying to adjust to the ileo. I was doing great at first, but have started to get irritation. My nurse said, it is most likely a yeast infection, due to all the antibiotics I was on. She prescribed the Nystop powder and told me to use the eakin ring for a good fit. I have lost 20 lbs in a month so she said the stoma has changed a lot. I have been instructed to use the powder and rings and change every other day until it clears up. I am looking forward to it. I want to start experimenting with all the different bags out there. I am still using the one piece with the clip.
Sorry this is such a long post. I thank you all for the get well wishes. I have missed this site but was just too sick to sign on. I am sure I will have a ton of questions regarding my ileo moving forward. It is just starting to sink in that this is perm. But will be sooooo worth it once I am all healed and feeling good!
Well YIKES!!! That's just amazing. I am constantly astounded by how much one human being can endure. I'm so glad you're finally on the right track. Please stay on that track. No more diversions or side tracks - even if it does look sorta nicer on the other side of the fence.
kathy
kathy
Maximus
That's quite a train you got hit by - I sure hope I never get hit by anything like that!
Happy to hear you seem to be coming along now.
I find it difficult to understand sometimes in this day and age why they release people who are in obvious pain without doing some further checking.
Sometimes it seems to me (at least up here) that your release has more todo with - do you have somewhere to go and people to look after you rather than your obvious condition - we don't want to get sued.
Wishing you a more speedy recovery now!
Lew
That's quite a train you got hit by - I sure hope I never get hit by anything like that!
Happy to hear you seem to be coming along now.
I find it difficult to understand sometimes in this day and age why they release people who are in obvious pain without doing some further checking.
Sometimes it seems to me (at least up here) that your release has more todo with - do you have somewhere to go and people to look after you rather than your obvious condition - we don't want to get sued.
Wishing you a more speedy recovery now!
Lew
Wow. I can't imagine how awful the past weeks have been. You seem to have a good attitude though and I love that you are excited about ostomy products! I hope you have smooth sailing from here!
wow laura.. glad to hear you have turned a corner. Your story sounds similar to mine but with the huge exception that they kept me in the hospital. I couldn't imagine being sent home in the condition you were. That is just awful. I too had told the nurses, fellows, residents, everyone.... that the horrid pain I was in was not normal post op pain... but no one listened. Until my actual surgeon came in one day, listened, immediately did a CT scan, and had me in the operating room in less than 12 hours... as I had huge multiple abscesses everywhere and draining out the vagina. I then had to have many more EUAs and CT guided drainages for additional abscesses during my month long stay!
I do think you should be alert to another abscess. Don't question yourself if things don't seem right. Just go get checked out. Is your backside wound left open or stiched up? And yeah also to that yeast infection. I had yeast infections everywhere including my mouth from those massive iv antibiotics I was on.
good luck figuring out your new ileostomy. That was the easy part for me. Let me know if you need any help/advice.
Get lots of rest and fresh air and stay on your positive path to recovery.
best,
liz.
I do think you should be alert to another abscess. Don't question yourself if things don't seem right. Just go get checked out. Is your backside wound left open or stiched up? And yeah also to that yeast infection. I had yeast infections everywhere including my mouth from those massive iv antibiotics I was on.
good luck figuring out your new ileostomy. That was the easy part for me. Let me know if you need any help/advice.
Get lots of rest and fresh air and stay on your positive path to recovery.
best,
liz.
Dear Laura,
What a nightmare. Thank you for posting. I've been wondering if I'm going to need my pouch removed or have it disconnected down the road.
What a nightmare. Thank you for posting. I've been wondering if I'm going to need my pouch removed or have it disconnected down the road.
Laura and Liz -
All I can say is WOW! What a ride you both are taken in life!
If you see my recent post UC to Crohn's I may be on my way to that however, I have only had j pouch for 5 months.
Still trying to heal along w/you guys!
Roberta
All I can say is WOW! What a ride you both are taken in life!
If you see my recent post UC to Crohn's I may be on my way to that however, I have only had j pouch for 5 months.
Still trying to heal along w/you guys!
Roberta