Son's Transverse Colostomy Reversal - Seeking Support and Advice

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Biddydi

I am fairly new to this site and have posted comments to others' threads and now am posting my own story. My son, who is 38 years old and developmentally handicapped, is having his reversal done on Monday, March 26th.
He is pretty nervous about this but happy to be having it done. It has been a very long road for him since August 18, 2011, when he took extremely ill with Fournier's Gangrene and had massive abdominal surgery on that date. They did a transverse to let his rectal area heal. His sphincter muscles are not as strong as the surgeon would like them to be, but he wants to try a reversal. She cannot say for sure if he will have problems, but he is prepared to try. We have been given the option to have a further colostomy done much lower in his abdomen should we wish to do so at a later date.
I am so thankful for all of your posts and have learned so much by reading each one's story. I am watching Dave in Canada very closely and am very happy that he is "on his way back". Also, Darla has been posting wonderful information and makes me laugh along the way. What a gal!
Keep posting your stories as I am learning something new every day to help me when the time comes to help my son get back to his "normal" self.
Dianne

Past Member
Biddydi
I was a newbie last year when I had an emergency ileostomy due to no previous diagnostics... it just happened that part of my bowel decided to show itself as wrapped around another part and died... I spent nearly two months in the hospital at that point but have not been 100% since and felt abandoned by the dietician and GP until my collapse at home in mid-January this year when I ended up back in the hospital again with various health issues after collapsing.

I've just come back to the site after spending a month again in the hospital but this time they not only did an ileostomy reversal but also took out my gall bladder as they found gallstones... I'm now on the recovery trail yet again...

I'm sorry to hear about your son but hope that his reversal op works for him and gives him a better quality of life...

Thinking of you both

Regards

xxxxxxx
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Biddydi
Hello Confused.
I just posted on your thread, so I won't go into too much here.
It is so very frustrating when you can't get your doctors to listen, and you feel no one is supporting you. I know the feeling.
My son is scheduled for his reversal on the 26th, and I find I have a lot of unanswered questions that I will need answers to prior to the 26th.
We have a post-op clinic appointment for the 14th, so I will hopefully get some answers there. Otherwise, I will be trekking back to our surgeon's office for some answers prior to.
We are really hoping that he will be able to be trained enough to get back to a better quality of life and gain a little of his independence back.
Thank you for your kind words.
Dianne
bag_n_drag
Dianne-

I am so happy to see this post from you!

This is one of many "first steps" that you'll be taking, along with your son, in the weeks and months to come! It sounds as if your son has really "been through it"; not to mention all that you have been through and go through every day as his mother and caregiver. My mom was the primary caregiver for my middle brother for 35 years; so I am somewhat familiar with the "adult child caregiver" role and some of what that entails, watching my mom with my brother over the years.

Let me tell you, dear lady, that you have my utmost respect and admiration as you assist your son with his life; and his upcoming journey into reversal land and subsequent recovery. We'll be here to lift you up in our thoughts and prayers; and offer support and encouragement; as March 26th nears and for the days afterwards.....those days of waiting, and wondering, and "figuring things out"; and wondering what the heck that "new normal" really is......

If I could "wish" you any one thing right now it would be for your son's reversal to be as uncomplicated and successful as mine and the others who are in "reversal retrospect" at the moment...Dave, Colm, Jean, Yukon Steve, Fable, Patrice (forgive me if I have left anyone out here).....we all are doing well after our reversals and we are going to believe that your son will be right in here with us!

Sending prayers and tons of "good stuff" your way!

Blessings!
Darla
Biddydi
Hi Darla:
You have once again lifted my spirits. You have no idea how I have been feeling these last 8 months worrying about my son. He is my only child and I so want him to be okay. He has been through so much in his 38 years and I have always thought that he just doesn't deserve what he has to bear now.
But as I say this, the wonderful people on this site also do not deserve having to travel this road and suffer the way they do, and so many others who have not posted here.
Thank you so much once again for all of your kind words. I have been feeling a little down the last few days, so your message to me has been timely for sure and has lightened my heart. He is very scared about his surgery, as we all are. We have told him it will not be near as bad as what he has already had to endure.
They are not too forthcoming with information on his reversal, and I don't know what to expect fully after he comes home. I will have the nurses coming back in to keep an eye on his incision and stoma closure, so that is a relief, but they can't seem to guide me with what I will need, etc. by way of supplies other than Depends. I am hoping to get this info from the pre-op clinic, although I am not sure how much they even know about reversals. We shall see.
Bless you, Darla.
Warmest regards.
Dianne
 
Words of Encouragement from Ostomy Advocates I Hollister
bag_n_drag
Dianne -

I, too, only have one child....a daughter, who is 27 now and is going to have her first baby in July! I can only imagine the shock you must have felt last August; and how the residual concern and worry never really leaves you....even on those rare occasions when you can take that short "break" from it all and focus on something else; the worry is never far away and always in the back of your mind. And, no, neither of you deserve what you have to bear now; and it is okay to acknowledge this as fact. I, too, am humbled by the sufferings of others as compared to my own situation. The good news is that we are blessed with an abundance of grace, mercy and my favorite 4-letter word.....HOPE.

With respect to supplies and such, I learned much more about what to have on hand post-reversal on this site than any medical professional could tell me. I have found that Calmoseptine cream and Coloplast Critic-Aid Barrier w/ Antifungal have been lifesavers for the bottom burn and irritation. I got the Calmoseptine at Walgreen's; but had to order the Coloplast cream from Allegro Medical on the internet. You may not need the antifungal agent....this mainly helps with itch if that's a problem plus the cream is clear and non-staining. The diaper rash cream "Anti-Monkey Butt" is also great for bottom problems.
He will need some good baby wipes, too, especially in the beginning. Even the softest toilet tissue will irritate if he is going a lot. I thought I would need Depends, too, but I haven't had to use even one so far. So you may want to buy one package and see how frequently you need them before you buy out the store. I had accidents for the first few nights but have had none since I got home from the hospital.

You may want to check with some of the guys to see if they have needed anything in the way of supplies that I may not know about.

Glad I could bring a smile to your face, dear lady! You bring a smile to mine as well. Thank you so much for the gifts of your encouragement and support.

Darla
Biddydi
Hey there Darla:
Wow, congrats on that first grandchild. You must be just flying right now and can hardly wait for the arrival.

I have a very dear friend who was told she would never have children that is expecting a baby in July also, so it will be a very happy month.

Thanks for all the advice. I bought some Sudocreme at Walmart for his bottom because I saw it recommended by a few on this site. Is it the same as Anti-Monkey Butt cream? Also, have baby wipes handy.

I am not sure if his post-reversal will be the same as an ileo reversal. Our surgeon lightly touched on the fact that he would be "back to normal" eating-wise and bowel-wise, but she just isn't sure if he will be incontinent.

I was hoping to hear from anyone who had a transverse colostomy and/or a reversal of the same or another type of colostomy to see if it is the same.

I guess you are right. We will just have to wait and see what we get when the time comes.

The latest up here is they are running short of "surgical pain killers" and other types of IV drugs, so the hospital where we are getting it done in Peterborough may be running short. Hopefully, they will not postpone his surgery because we are ready, but they might. He has a very high pain tolerance, so I am hoping they will put him through, but I am sure he is going to need the heavy hitters for a very short time in any event.

Yes, HOPE is one of my favorite words right now too. Thank you for reminding me.

Thank you so much for talking to me on this site. Still sending prayers for a quick recovery your way.

Will post more as the time draws near. Post-Op clinic next week, so hoping to find out a bit more.

Kindest and warmest regards.

Dianne
Biddydi
Hello to everyone here. Hope you are all doing well and moving along nicely.

Well, pre-op clinic is now behind us. Everything went well and is straight ahead!

They are going to give Ed an epidural so he will have no pain at all for the first few days and when they take it out, he will be able to manage well with whatever he has.

Have to be to the hospital for 6 am and to the surgery clinic by 6.30 am. It is way early but..... won't have to hang around at home worrying and the surgery, if on time, will be over well before noon if everything goes as planned. Hoping this is so.

Will post again as soon after the surgery as I can. Hope and faith and constant prayer are now our closest friends.

Dianne
bag_n_drag
Hi Dianne -

So everything is a green light, yes? That's great news!

How is Ed taking his upcoming ordeal.....is he anxious, or apprehensive....or looking forward to it....or all of the above?

Yep, 6am is what I refer to as the BCOD (Butt Crack o' Dawn).....I had to be at the hospital at 6am, too, the day of my reversal....but you are right, if you are first on the docket then your surgeon is fresh and hopefully alert and you get it over with first thing. And I am glad they are giving Ed an epidural in the beginning.....my mom actually had one after her total knee replacement for a few days and she says it was a lifesaver....it got her through the worst and by the time it wore off she was able to make it with a lot less pain medication.

Please know that both you and Ed will be foremost in my thoughts and prayers over the next several days and weeks to come. We are going to believe that everything will be good.....that Ed's procedure will go smoothly and will be a total success; that he will have complete healing and minimal pain; and that both you and he will have the peace of mind that only the Father can give us.....that HE will take your precious child and hold him close; and hold YOU close as well. And we, as your friends, will hold tightly onto that faith and hope of which you speak. Everything will work for the good.....I just know it!

Please keep us posted.

Warmest Blessings!
Darla

PS: I saw John Ramsey on GMA the other morning and he was speaking about his return from sorrow to HOPE.....thought of our previous conversations.
Biddydi
Hi Darla:

I think Ed is anxious but is handling it extremely well. We are excited to be getting it over with and the only thing that he knows is that he wants his bag gone. We both are a little nervous but who knows where we will be when the time comes near.

As I said, we are full of faith and hope and are praying for a smooth transition. He is trying really hard with his deep breathing exercises and his Kegels and is trying to walk a bit. I have told him that on this website I have learned that you must walk, walk, walk and have told him that is what he should expect as soon as he can get up and at 'em at the hospital.

Will post as soon as I can post-op.

Dianne
bag_n_drag

Dianne - As you approach this day....this wonderful day of transformation and healing for you and Ed; I pray that God's hands will guide your surgeon and that Ed's reversal will go smoothly and have a most favorable outcome. I pray that you will have peace today; knowing these things will all work together for the good.....for you and Ed.

We'll look forward to an update from you.

God bless!

(((Hugs)))

Darla

Biddydi
Well folks, it is all over but the healing. xmlo/o
Darla: I was thinking about you very early this morning along with other well-wishers on this site and knew that you were there with us as we left for the hospital and made our way through the system. Also, fabulous pic Darla. Love it!!o/o
Ed's surgery was a success. The surgery lasted just under two hours.o/o
The surgeon did not have to "cut" him to do the reversal. She was able to do the reversal through the stoma site only. Yay!!!. o/o
She said his bowel is very healthy and that there is very good blood supply. o/o
They did not do an epidural as they thought it was overkill when they didn't have to cut him. o/o
He is on a pain pump dispensing hydromorph??? which they are teaching him to use as he needs it. If he can't manage a pump, they will go another route. They are talking maybe dilaudid. With the morphine, they are running a strong anti-nauseant as he is very sick with morphine.o/o
He has a catheter in and may have it for a day or two. o/o
They are not feeding him until his bowel starts sending out sounds and he has to pass gas, and then they will start to lightly feed him. o/o
He is pretty darn groggy and very sick today and slept most of the afternoon, so I am home to go to bed early and will get back in there tomorrow at 11 am visiting hours. o/o
Our alarm went off at 4.40 a.m. this morning, and Ed came and woke me up and then announced that he was going back to bed. I had my coffee while he lay in bed, and when I went to get him to get up and get his shower, he decided that he was very tired and that he needed more sleep. Yikes! I wasn't sure if I was going to get him out the door. o/o
He was very scared this morning and certainly showed it. I talked him through it the best I could, but he was mortified by the time we left. o/o
I didn't get a chance to draw anything on his pouch. I had forgotten last night, and with trying to get him to move along this morning, I didn't think of it when I put the fresh flange on. Drats!!!!! I know my surgeon would have really liked it. She is amazing.
Will post again tomorrow.
Dianne.
bag_n_drag
Hey Dianne....

First......Thank you, God!

Second.....Yay! Yay! and yet another yay!

What great news this is.....on so many fronts! No incision.....no epidural......no unnecessary trauma.....as you said, let the healing begin! And I would say that Ed is a very fortunate young man! I was up at the BCOD this morning as well and thought many times of you and Ed.....thus the early morning message I left.

May your dreams be filled with angels this evening and you awaken to a day filled with new promises tomorrow.....promises of health and healing, and hope!

Keep us posted, dear lady.

Darla

PS: And thank you for your sweet comment about my new pic....you are too sweet! I am so thankful that I feel well enough to get out and celebrate spring!!
dandare

Great news, Dianne!! Oh, here's hoping and praying his recovery is swift and he'll soon be out of the hospital. And good on you, Darla, for supporting Dianne like this. It's wonderful to see your great "neighbourliness" towards Dianne and everyone here. You're an absolute star!! Here's hoping things are settling a little more for you too! So take good care, ladies... will keep you in my prayers and thoughts, Colm.

bag_n_drag

Hi Colm!

I was about to send the "forum posse" to find you since we hadn't heard from you in several days!    Everything ok?
Nope, not a star......just care about you wonderful peeps!
Things are settling down a bit....I am "going" about 12 times per day now, give or take.    Hey, it beats 16-18 times per day.....I'll definitely take it!
Let us continue to lift Dianne and Ed up and pray for a complete and speedy healing and recovery!
Glad to see you around again!

Darla
Biddydi
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.
bag_n_drag
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
dandare

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.

Biddydi
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
Biddydi
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
bag_n_drag
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
Biddydi
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
Biddydi
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
bag_n_drag
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
Pinky

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.

skidder
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!
Biddydi

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.