Son's Transverse Colostomy Reversal - Seeking Support and Advice

Thank you Colm and Darla:
Colm, you are so right. Darla is certainly a star. You have no idea how close I felt to you guys the night before and the morning of Ed's surgery. I'll say it again that I truly did feel you guys right behind me.

Was in to see Ed today. He is on top of his game with his color back and very alert. He was sitting up in a chair and had been walking about before I got there. He has his catheter out so he is getting up regularly to visit the washroom. He has a lot of cramping and gas right now.
He wants to know how long 7 days is? I showed him on my fingers that he has already used 2 days up so now he only has about 5 fingers left as long as he has no infection.
They changed his bandage today and the nurse said he is a little red but it is dry. The surgeon will look at it in the morning.
They are keeping him on liquids for another day but he has slight bowel sounds now. The most he has had today is popsicles which he inhales.
They have also stopped the pain pump to see how he is managing and he had no pain while I was there, just a lot of discomfort from cramping. They are giving him Tylenol every 6 hours instead. Oh Yay!!!!
Will post again tomorrow. God bless you guys.

Hey, Lady!

Glad to hear that Ed is getting along so well and has already been able to cut his pain meds way down....
I am hoping that by today he passed the magical gas and is able to eat something more than popsicles!
So are we still looking at 4 more fingers worth of hospital time?

Have you been able to get any rest during all this? How are Ed's spirits holding up?

It's a humid, hot day in Dallas today.....one that makes your clothes damp and wrinkly and your hair big and frizzy! And allergies are sooooo bad......need to make a Zyrtec run sometime today!

Have a super duper day!

Darla

Great news, Dianne. It sounds like Ed is passing us all out in the recovery race! And long may it continue too. Walking, walking, walking is what my surgeon recommended and had me doing from 8am the morning after the surgery. And chew, chew, chew was the other advice as soon as I started eating. Here's hoping the 3 fingers worth of hospital stay won't be too long in passing!! God bless to you both, Colm.

Hey Darla and Colm:
Having trouble with my internet, so not on as much as I would like.
Ed had his IV taken out this morning, and he is coming home tomorrow. He is so happy.
He has a closure about 6 inches long and has stainless steel staples in it. They are going to be taken out on April 6th. We have the nurses checking in for visits and will also take out the staples, and for this, I am so grateful.
He has a lot of cramping and goes to the bathroom a lot. Bet you guys know what I'm talking about.
Passing a tremendous amount of gas, which they say is good, and a small amount of BM.
Started on semi-solid foods today. Oatmeal, yogurt, coffee, tomato soup, and custard.
I will always be so grateful for this website and the comfort it has given me along the way.
I learned so very much from this site from a lot of really neat people who are going through the same things as I am. I even got my girlfriend to pick me up some cream from Walgreens in Florida just in case I need it for Ed.
I thank God we are doing so well and know that the guardian angels have been over Ed's shoulder the whole way.
Will post again soon.
Hope you are both having a wonderful day, and Darla, hope your hair has stopped frizzing. I have big hair, so I know all about the frizzing thing. lol.
Dianne

Hiddey Ho everyone.
Ed came home Saturday morning. Yay!!
He is on soft foods for a while yet, although the surgeon told him there were no food restrictions. Yikes!!
He had just started on soft food on Friday, so he hasn't been on it very long yet.
The discharge nurses said he has to have the soft stuff for a while yet.
Really hard to figure out what to feed him. We have done bits of chicken breast, cod fish, creamed soups, mashed carrots, potatoes, sweet potatoes, and parsnips. The nurse said I can give him a bran muffin, so I have been cutting one up small and also gave him 1/2 banana today to see how he tolerates it.
Can anyone give me any suggestions for meals? I will not be giving him any red meat, i.e., beef or pork for a while yet.
He has done amazingly. Very little pain meds and has no pain at home. He is sitting on the throne a lot but mainly just "blowing," which is a good thing for sure. He has lots of cramping, which is very normal, and I have told him it will continue for a long while yet.
He is passing bright red blood though when he goes to the bathroom. Not a lot, just coloring the water. My nurse said this is normal and could go on for a bit because of small fissures, etc. I have a call into my surgeon for her assistant to run it by her.
Other than that, he is really good, no infection or fever, and really good color.
He gets his stainless steel staples out this Friday. A nurse is coming to his apartment to do this, so it should be interesting.
There is absolutely no way I am going to get him to go to the hospital again.
Hope you are all doing well and moving forward in your recovery.
Dianne

Hey Dianne -

Sounds like you had an eventful weekend..... I was "sittin' on the throne" a lot, too, this weekend! Don't know exactly why....I may have picked up a little bug but I was also out a lot running errands so it could be that everything that went in came right back out with all the walking I did!

Ah, meals.....the 64k dollar question. I think we've all had frustrations with what to eat and what to avoid.....
Personally, I am STILL avoiding certain foods like red meat, pork, and most non-soluble fiber veggies. Mainly because the red meat stays in the digestive tract for a couple of days on average. I eat LOTS of fish, some chicken breast dishes, brown rice, squash....easy stuff. I have done a small hamburger patty and I didn't like the way I felt afterwards; so back on the avoidance list. Pasta dishes with light sauce; dark breads; yogurt. I have started with fruits again in moderation....stuff like berries and peeled apples. No oranges due to membranes. One of my neighbors brought dinner over one night and it was chicken spaghetti....first time I had ever had it but it was DELICIOUS and easily digestible. Perhaps we can all brainstorm on recipes and then write a cookbook for post-reversal meals since this is a difficult issue for most of us!

I am SO THANKFUL that Ed is doing so well! Sounds like he is recovering at a remarkable pace and that his emotional state is stable and receptive.....well, except for the going back to the hospital part but I can totally relate there.....the mere thought of a return visit gives me a case of the bad "goosies!" No "accidents" so far, I take? I had a few accidents at night while in the hospital but luckily not ONE since I got home! That was one of my greatest fears....incontinence...but so far, so good.

Oh, insofar as foods are concerned, you may want to ask Yukon Steve, Colm, and Dave if they have any ideas or what they are eating as they had similar reversal procedures and all have large intestine left; so their system tolerances may be a bit different than mine. I'm kinda the "odd gal out" on some of this stuff since I don't have a buffer anymore Since taking the Lomotil, Opium Tincture AND fiber, I have gone from 16-18 bm's per day to about 12-14 per day.....it's progress and I will definitely take it for now!

Keep us posted!

Doin' the Happy Dance for you and Ed!

Darla

Hey everyone:

Not been in touch as I have been having problems with my computer at home, so I have been coming to the library occasionally to post.

Ed is doing amazingly well. He got his staples out last Friday. A nurse stopped by his place to take them out. Hardly a peep from him. His incision is healing nicely, and he doesn't complain of any pain, although it is looking really nasty and he has a gigantic bruise on the other side of his incision, which looks like it could have been some kind of pressure applied during the surgery. The bruise has just shown up in the last few days.

He is still eating soft foods and is happily moving along. I am not letting him have any red meat, seeds, nuts, etc., just like when he had his colostomy for some things. He is eating a lot of creamed soups, eggs, fish, chicken breast, and pastas, all cooked well.

He does not seem to be incontinent and goes to the bathroom every time he needs to. No accidents whatsoever. I think if he was going to be incontinent, there would have been a few accidents, I would think, but nothing.....

He still has "brain fog" from his surgeries and is not quite himself for sure. Our surgeon says it could be up to a year before he gets back because his first surgery was so extensive.

He is so happy to have his "system" gone and says he never wants it back. He remembers that his belt "pinched him like crazy".

He has problems with his behind being sore, so we are applying Sudocrem when necessary, and it seems to really help him.

Will post again soon. Hope everyone is coming along nicely with their progress. Once again, I am so thankful I found this website because without the input from all, I would have been lost. They sure don't tell you anything at the hospital to prepare you for the colostomy and the reversal.

Dianne

Hi everyone:

Just a quick note to let you know that Ed is progressing nicely.
He is starting to get back to his old self and is wanting to do things again.
He is still having pain in his back and right side, and the doctor gave him some muscle relaxants which seem to be kicking in. Apparently, it takes a few days to show any results.
We are going to the surgeon on May 8th for a checkup on his incision. I am pretty sure she will discharge him at that time, and I am hoping that he can resume some activities to start getting him mobile again.
It has been pretty hard to get him to rest as he doesn't quite understand the seriousness of taking it easy, and he has all but forgotten the "one day at a time" attitude we have lived with for the last 9 months.
Hope everyone is doing well and progressing along as well as my son is.
Dianne

Hey Dianne

Good news! I am so glad to hear that Ed is making such good progress! It will just get better and better from here on out!

Darla

I had my temporary transverse reversed in December 2003. Then I went for about 5 years in pain and agony due to radiation damage to my rectum, so in Feb 2009 I had a permanent descending colostomy placed.

If you did not have a bunch of radiation, you will probably do just fine with a transverse reversal. Just take it slow and eat about half portions at first.

Hi Pinky, Skidder here! I just read a little excerpt from you asking why people neglected to say what type of ostomy they had/have. In 1971, I was in Bethesda Naval Hospital for 6 months and I was diagnosed with Toxic Megacolon. All of my large intestine (colon) was removed, hence an ileostomy. I did well until 1979, where I ended up with a total proctocolectomy and ileo revision. I've had surgery in '84 and '88, many, many blockages, and surgery in 2002 for a parastomal hernia. More blockages and that brings me to the present! I am the proud mom of a 41-year-old girl named Mary. I wish I could say she's a college grad, but (no pun intended) she sits there like an old bag and toots all day! She's a real cherry, she is!!!!!
Have a great day, Pinky!

Hi everyone.
Ed went to see the surgeon this morning for his 6-week checkup. She is extremely happy with him and is delighted that he is not incontinent.
He insisted that he go in to see her by himself, so off he went with his list to cover with her and did very well. She came out to see me after she was done with him and says he is healing well and there are no signs of a hernia, etc. His abdomen will go down a bit, but there will always be a bump there.
He still is not to eat nuts, popcorn, and any foods that could cause a blockage, but other than that he is doing amazingly well.
She has said he can now bowl and golf, and he is now charting his course in that direction. lol
We have to keep an ongoing eye on him to "slow him down" as he does not understand the seriousness of his condition. He continues to have nighttime pain in his back and/or right side, but the muscle relaxants seem to be doing some good for him. The surgeon said he will have pain off and on for a long time, she would think.
So........ she has now discharged him back to his GP for future follow-up but said I could make an appointment with her if I ever needed to talk to her or if there were concerns.
I am so going to miss this amazing lady. For a surgeon, she has such compassion and always showed that she cared and took her time with him every time. I told her I will always be indebted to her, and she will be in my thoughts for the rest of my life.
P.S. Skidder, thanks for the laugh.
Pinky, I am sorry that you had to have a further colostomy after going through the reversal. We never know what our Lord has in store for us, and I have been taught to live for today and take one day at a time.