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Reginabean
Hey everyone, I am scheduled for a revision surgery on Monday, 10/8. I have to be there on Thursday 10/4 for pre op testing and appointments.

Dr Strong is doing the surgery. He's a really great guy, and I had a pretty good connection with him. My MI doctor, Dr Kim, is a former colleague of his. Anyway, Dr Strong is going to redo my jpouch. He's going through the abdomen, taking the pouch out, clean up all the scar tissue, re position it, and then give me a temporary loop ileostomy for 3 months. Also, since I have cuffitis, he is going to cut about an inch of my rectum out, pull the pouch down, and then reconnect it. He said this will be the most extensive surgery I have had. It will be about 6 hours.

I am kinda nervous, but I know I will be fine. It's just setting in that I really am doing it now. I can't wait to get this all behind me. I had my first surgery 10 years ago as a result of UC. I had 8 surgeries so far, and looking back, I can't believe what I have gone through.

The reason I am having this surgery is because I have an efferent limb at the top of the pouch. Basically it's angulated, and kinda like a kinked hose. I also have an ulcer at the bottom of my pouch, and have granular tissue buildup from straining so much over the years, and cuffitis. I also have pelvic floor issues. My muscles are very tight, and have a hard time relaxing. All of this makes me feel bloated, I have throbbing pain in my belly, achey pain that radiates to my back, and then to top it off, it hurts so bad to go to the bathroom. A lot of times it's a burning pain in my rectum, and then it hurts for a long time even after I go.

Anyone who has had surgery at the Cleveland Clinic - Do you have a private room? The reason I am concerned is my Mom is going to stay the night with me in the room. I am going to call a social worker tomorrow regarding that. I am just wondering if that would be possible. What has your experience been like there? Did you have good care with the nurses? Where you sent home with a supply of ostomy bags? Any advice would help. Thank you so much! This site is amazing.

Replies sorted oldest to newest

L liz11Member
hey regina.
welcome to the board and extra good luck with your upcoming surgery. This year I had my pouch removed and a permanant ileo at CC. I chose this path rather than the pouch redo path as for me.. enough was enough. Anyways, I have never had a single room at CC. Not even sure if they have any. We did try though. If you do have to share a room, ask the nurses to hunt for one of the fancy recliner chairs for your mum. They are few and far between, but if you can score one of them they will make a huge difference for your mum. Just make sure no one tries to steal it out of your room if you do manage to get one.

Oh.. the nurses there are absolustely amazing, along with the rest of the staff - even the food delivery and blood drawing people are extremely nice. They also have very talented ostomy nurses who will make sure you have a good functioning appliance/system before you leave. No worries there.
Overall.. CC is really a caring and great enviornment to be in for this type of thing. Very different than previous hospitals I had been in.
L
CTBarristerCTBarristerMember
I had two J Pouch revisions done in 1998 and 2000 at Mount Sinai Medical Center in New York City. The issue was a "septum" that developed in my Pouch, causing a problem with my ability to evacuate. They went in through my rectum to do the surgery so it was minimally invasive, although it was done under general anesthesia. It was done on an outpatient basis. In 2000 they did the procedure again because the "septum" re-developed. Since then I have had no problems structurally. I do have chronic pouchitis which is treatable.

Good luck with your surgery.
CTBarrister
D dawn58Member
Hi Regina,

I have been at the Cleveland Clinic a few times. My surgeon is Dr. Remzi. I stayed in a room with a roommate and my mom stayed with me everyday. When we got there she spoke to a nurse and went around to all the rooms to find the chair that somewhat reclines. We brought our own pillows cause the ones in the hospital are not so great and my mom brought her own blanket. As far as private rooms, the J building has them and if I stay in the hospital again I think we would get that. Most insurance companies won't pay for the private room, but it was not so expensive. You can also get a private room that is connected to the private room and now you would have an extra bathroom. The nurses are excellent and they will give you any samples or supplies you want. Also, anything that is left in your room you should take home cause I was told once it is in your room they throw it out.
D
TE MarieTE MarieMember
I wasn't at CC but my hospital ostomy nurse ordered my first round of supplies and I was sent home with more than enough to keep me until the supplies arrived.

She also called convatec and they sent me nice samples of different bag types, wipes, a nice "bag" to carry supplies in when leaving the house. I think other companies send out samples too - hollister is one of them.

I agree take home all the tape and other things left in your room. If you don't need them now you will probably need them eventually.
TE Marie
J jeaneMember
Regina,

quote:
I also have an ulcer at the bottom of my pouch, and have granular tissue buildup from straining so much over the years, and cuffitis.


I am sorry for your pain and pouch problems. I am hopeful this surgery will help correct your problems. I thank you for posting about the issue you have with cuffitis and straining as I also have this issue, as well as a small ulcer on my anastomosis. I do not have an inch left of my rectum though( just a couple of centimeters), but my surgeon has also indicated I could have the pull down procedure if the cuffitis does not abate. I was unaware that the straining could cause the issues you have described. I am going to ask my surgeon about this when I see him.

I am confused. Are you having a new pouch made or are they correcting your current pouch issues (efferent limb)and then basically sewing your existing, fixed pouch to your anus with no rectal cuff?

Best wishes. I will be interested to see how you do. Will be thinking of you.
J
TE MarieTE MarieMember
Every hospital must be like this! I was waiting in my dad's hospital room a few weeks ago and asked his NA if he could find one of those recliners for dad. He found one and I thanked him as he was saying something about me staying all night. I said I wasn't staying but that my dad couldn't sit in the other chairs as he's a larger man and has so many problems with his artificial hip - that's what the surgery was about.

Dad said at least once a day other employees came in asking if they could take the recliner for people staying all night with patients.

Hello - get a clue hospitals. Make sure you find these if you need them ASAP.

FYI
I noticed when I had my first surgery I got a huge room with a nice couch in it. I was there 16 days. After #2 I was in a smaller but nice room for 4 days. Several months later I had surgery #3 for an incisional hernia and the room for 3 days was so small you could hardly fit one small chair in it. All the rooms are private and I finally figured it out that you could figure out how serious your surgery is by what kind of room they put you in. Just a regular hospital here. All these surgeries were taken care of on the floor/department.

I know I dwell on strange things. I count ceiling tiles too Smiler
TE Marie
runner4449runner4449Member
I don't have any experience with what you are going through, and am still waiting to have my take-down on 10/11, but I just wanted to let you know I am wishing you well. I am at a military base, and believe it or not, get a private room every time. My husband has stayed with me for the first few nights of my first two surgeries, and it sure is comforting to have him by my side. I hope you are able to score a private room, but at the very least be able to have your mom stay comfortably with you. Take care!
runner4449
ReginabeanReginabeanMember
Jeane,

Good question. I actually don't remember if it is going to be totally redone or just fixed. I think it's going to be just fixed, and then sewn to the rectal cuff.

Thank you all for your helpful advice and information. And yes, it is so very comforting to have someone in the room with you at night. My ex husband did the same thing Runner4449. It helps so much to have someone there for you!

I will try and keep everyone posted on the outcome of it all. Thanks again!!!
Reginabean
FM Former Member
Regina,
I had a colostomy and jpouch surgery at the cleveland clinic and I have nothing but wonderful things to say about them. The nurses were wonderful, and I always felt taken care of. They are also great post surgery, if you every need anything CALL them, they are so helpful! They set me up with a stoma nurse and I was given plenty of supplies to get me through for a while at home. Good luck!
FM
A ActiveUC'erMember
I just had my surgery at the CC two weeks ago. I don't think they have any private rooms in the colo-rectal section. The staff there are excellent (from nurses to na's to care staff). I also think I counted 50 patient beds for only colo-rectal patients so that's definitely the place to be!

Have you thought about a camping mattress as an alternative to the recliners? They can actually be quite comfy.
A
CR CC RocksMember
Had all my surgeries at Cleveland Clinic back in 2010 best place ever. I had a private room for all my surgeries. You need to contact someone in the Office of patient experience. You need a patient service navigator to schedule a private room if there are any available. They put you on a list. My husband called well in advance of each of my surgeries 3 total to make sure I ahd a private room. i have awesome insurance, so my insurance overed what a regular room would be on the colo-rectal floor and we were responsible for the rest it is quite expensive, we had to pay at least $2000 for each night I was there. The private rooms are around $5000 a night. Understand that is the V.I.P floor as they call it. Hopes this helps. If you can go this route do it the best care ever.
CR

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