Length of your temp ileostomy?

[seasnail]

Hi all. We had a visit with our surgeon today. Hubby is about 5 weeks out from his resection (liver and rectum) and doing good, just working on gaining some weight. He started back up on the Adapt regimen last week and has no issues with his incisions or anything. We are both fairly exhausted all the time though and are trying to get lots of rest (which has been trying as we live in an apt under a group of girls who think they are in a sorority and party 7 days a week through no insulated walls where we can hear every "omg no way" conversation, every footstep, and every bottle clanging)...but that's neither here nor there.

I was just curious, for those who had temp ileostomy's, how long did you wait for the reversal and what was the reasoning?

I hope this doesn't come across as too whiny as it is minimal conpared to a lot of things going on, I know, but we were really disappointed to find our surgeon wanted to wait much longer to do his reversal than we thought (at the very earliest 3 months but could be 8+). I think someone at the hospital (it was such a blur I don't know who) said it could be as short as 8 weeks, and we of course hoped for that. My husband was utterly dejected at the news. The bag has been really tough emotionally on him and so frustrating at times and I think mentally not having it is a way for him to literally kiss cancer goodbye. When dh sees it now and has to fumble with leaks or changes it's like this constant reminder to him that it's not "over" and already seems to be taking a toll. Its like we convinced ourselves to get through this part because it would only be "a few more weeks" but the thought of it possibly being 2015 before its reversed hit him hard. Mentally, this has been tougher on him than chemo and radiation and the surgery itself. Like this is the wall he finally has hit. Again, I know we are incredibly fortunate for everything else and this is so small in the big picture but as you know the whole process of cancer sucks and now feeling so close, yet so far, to at least trying to move on from it, has been hard.

I guess I'm mostly curious what your process for reversal has been (and just needed to vent as I left the office really frustrated). The doc said he'd need more scans and some kind of scope (colonoscopy?) to visually inspect before doing the reversal and dh would need to be off chemo again (he just started back up) to be worked out with our onc...so it feels like a whole other long process. We also felt kind of frustrated that we were left in the dark as to how big of a thing this whole surgery was going to be (I mean we know surgery is big, but as in a million pre appointments and PT and scans and more scans and ostomy nurse appointments and difficulty of recovery and then reversal process and 2nd recovery etc) and just feel so worn out because we didn't expect it to be like this and definitely weren't told it would be this much of a process. Plus this now messes with both of our job schedulings (another long story) and we had travel plans for a Hawaii vacation this fall that may not happen now (depending on when his reversal actually is and how his recovery goes) so we are just having a tough night trying to process the new info and continue slogging through. And as noted by my 1:30 am posting I'm grumpy and tired and had to write because I cant sleep due to the drunk group of people above my head singing and laughing. So sorry for the sleeplessness induced mini pity party/rant. This is the only place that just gets it.

[Jachut]

Mine ended up being 9 months.

My surgeon told me in the initial consultations that it could be about eight weeks, I saw him 6 weeks post op and he advised me to wait - I wasn't healed up enough. I wanted to go on holidays so it suited me. I was coping fine. Then I started chemo and by then I had done some research about reversal and I wasn't keen at all. Chemo was rough emotionally and the last thing I needed was to go through a reversal - to me, its not the end of something, reversal is the start of a very challenging and emotionally trying six months. I wasn't in any hurry at all, I was messed up enough. I wanted to wait until chemo finished, and by that time, I'd changed my mind, didn't want to reverse at all. But I did in the end at nine months.

It wasn't very successful for me, but in some ways I'm glad I reversed and now have a colostomy instead of an ileostomy.

Can you schedule a reversal for AFTER your holiday? If he goes through reversal first, it could be months before he feels confident enough to travel. A well established ileostomy will be much easier to manage than a new reversal.

[Regan]

Ohhhhhh....I can sooo empathize with you.
There are so many here that I am sure will offer you what comfort and encouragement you so desperately need right now. I too would read here late at night while my DH was trying to rest after his same ordeal as yours.

First, I want to address your feeling of "uniformed" before this occurred. We had a board certified, Onc recommended surgeon and was always--and still--confident in his "work". But OMG! his explanation of what he was going to do to DH was thorough-OR SO WE THOUGHT AT THE TIME. He showed us a diagram poster of where tumor was, what he was going to cut and reconnect. . . talked about the sphincter . . ..

HOWEVER, reality was that we were so ILL-PREPARED for the consequences of the surgery and recovery. I could write and write but will summarize. The pain, the sensitive diet, nausciousness. . . and I would call the surgeon asst and ask "Is this normal?"

For if it was "normal" I was okay with the recovery process. . . .BUT I COULDNT GET AN ANSWER OF WHAT WAS NORMAL. The Incompetent asst would call me back several days after I called. . .too late for me. .. and one time, I was explaining what was happening to him and she said "Mrs. Adkins, your husband was 'GUTTED LIKE A FISH' so he is going to feel awful for a long time"

I was so utterly shocked that a nurse said this to me I wanted to go thru the phone and slap her. Another post on her, but eventually Surgeon replaced her--didn't help us, as DH made it thru (as will your hubby), but at least other people won't have to go thru her incompetent hell.

I actually learned to call after hours so I could speak to a surgeon-on-call and get answers. One of those times, the answer was "no, this is not what we want. . .I will pre-admit you to hospital so you wont have to go thru emergency".

Blockage (which meant the dreaded NG Tube) and a Contained Leak at anastomosis (where colon is connected to rectal stump).
Hospital for 8 days.

Temp Iliostomy: Ostomoy nurse did not "fit" him with the correct waifer. We, of course, had no idea that was what was wrong. So he went thru leaks, was afraid to lay on either side to sleep (never could sleep on his back--but was forced to now). When he lay there and said--it did it again--I would look at his face and see the mental anquish of "shitting" himself, the bed and the dog. That was almost the worst for me. . .I didn't care about the mess. . .got really fast at changing sheets, bathing dog and de-fuming bedroom. . .but that look on his face would just tear my heart out.

Finally, I found a thread on this place that talked about the "right" waiver. I called Onc office, surgeon office (refusing to let me connect me to "Fish Bitch" and finally got an Ostomy nurse to visit home thru home health care. She took one look at his set up and got huffy. .. . (not at us), went out to her car, came back with a slightly rounded waiver (DH's was flat). She brought a powder and sticky wipe to help with adhesion and WA LA. . .DH was in the stoma-control business. Still was mentally hard for him but the leakage trauma was virtually non-existent after this blessed nurse.

Again, this is the short version. Summing up, DH had to have "Oscar" for over 10 months because the surgeon wanted contained leak to heal on its own. DH went thru numerous Flex-sigmoidoscopies --which is what I believe your DH is going to have. It is a no-brainer procedure. Surgeon would put him to sleep (not deep) and it was a 15 minute or less every time.

Reversal is no picnic. My DH finally had his this past January. . .still learning how to manipulate his new plumbing. (another long post).

Moral of this story for YOU. . . . It is a horrid situation, and you are in the middle of it. .. BUT THERE IS LIGHT AT THE END OF THE TUNNEL!!!!! THEY GOT THE MONSTER OUT!!! We have "forgotten" the hell you are going thru now. . . like labor pains. . .hopefully your DH will reach NED status (no evidence of disease) and you will hopefully, like us, not dwell on what it took to get there. It's just hard while you are in the midst of situation to understand that.

I am wordy today. .. I post, but not a great deal. I read EVERYDAY though. I follow soooo many precious people here and think of them throughtout the day. . .wondering if they are going to provide an update or post. .. .

PS: I dont know if you can do this (mentally), but every since his LAR I watch EVERY procedure doctor's are going to do to my DH on youtube. I even went back and watched an LAR.. .. He truly was "gutted like a fish". But now I understand why he has "massive" scar tissue in his abdomen.

Hang in there. . . .I so wish I could say or do something to help you thru.

[Regan]

Ugh. . .sorry Seasnail. . .I just looked you up and you are a trooper here at the club. . . I thought I recongized your post name. . .I answered as if you were relatively new. . .You probably know much more than me.

[GreenMonkey]

my initial LAR surgery was in September and I had the reversal in May. To me the reversal was easy and adjusting is a joy compared to living with the bag. I also had an incisional hernia repaired at the same time. That hernia made it almost impossible to get a good seal and I leaked all the time. It was terrible.

I have to say that the biobidet (that I heard about here) has been fantastic! So glad I bought one. I'm now 4 weeks out from surgery and pretty much eating normal (with the exception of red sauce of any kind).

[Coppercent]

There are so many variables depending on the individual. When I had my surgery I met someone in the infusion room that had my same surgery at the same time. She chose to have her reversal early in 6 weeks. Emotionally she couldn't handle the bag. She is doing well now. I decided to go with my surgeons wishes to wait at least 8 weeks but my oncologist wanted me started on chemo right away and recommended waiting on the reversal after chemo. I chose that path because an ostomy through chemo seemed the easier route then new plumbing. After my six months of chemo my surgeon said I had to wait for my reversal for 6 weeks after chemo. The 6 weeks after chemo hit a really busy period at work so I ended up waiting for a slow period at work. I had my ostomy for 11 months before being reversed. We are all different and a lot goes into the timing of the reversal. I had my reversal in October 2012 and did a cross country road trip in are December 2012. We walked the streets of New York City for two days. Walking / running helps keep me regular. I have found that not stressing over BM has helped. My philosy now is what is the worse that can happen? I poop my pants. I carry a bag with a change of clothes. I call it my adult diaper bag. It has wipes and a clean out fit and a towel to cover the car seat if needed. I have only needed the bag a couple times in the first six months although I carry the bag so I don't stress over accidents. The times I needed the bag were my fault. You learn what your body can handle. I knowingly stretched the limits. I have never had surprise accidents. You have to listen to your body to know what to eat and when you can eat it. Some people can't eat dairy but it doesn't bother me. I don't do well with fried foods and big meals. As long as I avoid those while out I do well and now I have regular BM. By the way the woman I met in chemo has had the same success I have had so it seems for us the time with the ostomy has not made a difference. We both had straight connects. Do your research and go with your gut instinct. Best of luck.

[CRguy]

I had a temp loop ileostomy for 6 months after resection. Had a very good ostomy group of nurses, had minimal problems, got used to the routine, worked the whole time but did not travel with the "alien".
I kept it to take the hit of adjuvant chemo (Xeloda), which turned out to be not too much of a GIT issue for me.
Others have had more issues with chemo-rrhea and said it helped having the pouch on for that.

There have been a number of mini-blogs on here about takedown (reversal) experiences and you may wish to check more out with the SEARCH function above.
Two posters who come immediately to my mind are :
Surroundedbylove Takedown Info
nicola smith Re: Ileostomy Reversal , who also did extensive research when we were first talking about BioBidets a few years ago.

Cheers
CRguy

[KWT]

I've had mine since nov. 2013. I've decided to wait until this fall just not ready for more surgery,pain,weight loss and then the adjustment period and the chance it may not work and could be facing more of the above for a perm. Colostomy surgery. I am looking forward to it being gone though. It seems like the ileo is small potatoes compared to everything else were dealing with.

Sorry if this sounds negative just my thoughts

[chemo sabe]

Seasnail,
I had my ileostomy for about 8 months. Why?? I was on chemo!! Only emergency surgery is allowed while on chemo (chemo zaps your blood). So I completed chemo and had my takedown surgery.

I had my colon resectioned in two places and is quite a bit shorter than most folks. That made my recovery a bit trying. I was off from work for about 8 weeks and for about 7 of those I did not want to be too far from a bathroom. I slept on a mattress pad even after that. It was slow but I learned how to live with the new me.

[justin case]

3 weeks. The surgeon and I agreed I didn't get along too well with the bag. After hospitalization for dehydration, and my overall general bad mood, and a blockage that needed surgery any way, it was decided to go for the reversal. That digital exam was brutal before the surgeon made his decision
Michael

[nicola smith]

I had a temporary loop ileostomy and kept it for a year. Like CRGuy, I kept it through chemo in order to avoid the complications of diarrhoea. Then I kept it for another several months just because.

Thanks CRguy for the link to my old post. I can't think of anything to add!

[CRguy]

Hey fellow Canuckian !!!! Howzit goin' ?

This forum is a great resource and when folks like you do the homework of many ....
I see it as my job to pay it forward, with full credit given.

Cheers and Harmony
CRguy

[seasnail]

Wow, thank you everyone for your replies. I needed all the thoughts and perspectives!!

I'm hoping to be able to help inform my dh about the possible trials of a takedown, which in his mind, will be nothing compared to the bag. He doesn't read the forums Maybe the understanding of the potential difficulties will make the bag less sufferable - or maybe we can expedite if everything else is on track (besides his mood) ha. We aren't sure if chemo will affect ileostomy plans because he will only be doing oral chemo and it will be for about a year and a half (it was originally planned for 3 years but the cancer was all gone when they examined his liver, so our onc is shortening the protocol).

And Regan...your post was so great. I still feel new in all of this and so so so appreciate your response. It was like I was looking in a mirror reading it. I'm sorry you had such a terrible nurse...my jaw just dropped imagining her saying that. And same thing with the hubby...I have no problem cleaning and getting down and dirty with the bag and cleaning up/airing out the bathroom, whatever, but it's his face that kills me, like he's weak and helpless and while it's obviously not the case, he believes it and is having such a hard time coping. And seriously, I just cannot believe how unprepared we were for all of the lingering effects of the surgery and the learning curve needed on what would happen and how to get help and how many appointments and things we would have to do along the way.

Kennyt- I 1000% agree. It truly is small potatoes both to what others are dealing with and what he has already had to deal with. The crazy thing that makes me the most scared is knowing my dh very well, all the "tougher" parts were ok for him. Like all the chemo and radiation (and the pooping razor blades) and intense pain...he managed. This, for whatever reason, is mentally breaking him down and to watch that scares me. His recovery has been pretty decent from surgery so the idea of up to 8 months to wait to reverse, at least in his mind, is like the last straw.

Michael thanks for letting me know. It is good to know some have had an earlier reversal and that it is a possibility if need be, but we will kind of see how it goes with work and vacation plans and his overall feeling towards it. He has actually had some gas and bowel movements (that he can control) so we are hoping he's well on his way to recovery anyhow (wishful thinking?) so maybe there will be hope things can move on a quicker timeline.

Thank you again so so much!!!

[nicola smith]

Hey fellow Canuckian !!!! Howzit goin' ?

This forum is a great resource and when folks like you do the homework of many ....
I see it as my job to pay it forward, with full credit given.

Cheers and Harmony
CRguy

Going well, CRguy, thanks for asking. I am going to be out of town when the scan results arrive...but my favourite administrator at the hospital is going to keep an eye out for them for me. If there's anything I need to know, the administrator will arrange fort he doctor to get in touch.

To return the compliment, I do think you do a great job on the board and manage mostly to keep the kettle bubbling without boiling over.

Cheers

[laneylou]

Hi Seasnail,

Don't give up on the ileostomy situation just yet - it took me a good 2 months to get into a groove. Like your DH I had a very bad experience in the hospital (and the ostomy nurses were totally unhelpful) - thank God for home health care nurses with a clue!!! Also finding my "bombproof" setup of wafers, rings, stoma powder, barrier wipes, etc. (is he using an Eakin seal or Adapt ring? Total MUST for an ileo, at least for me anyway!)

One month in I was still so upset and frustrated and crying all the time, especially when I couldn't get the stoma to "shut up" long enough to get a new bag on! By the time I reversed 9 months later I could tell my surgeon with perfect honesty that if the reversal failed, I could live with a stoma and be OK. He'll learn his new rhythms and what works for him, it just takes time and maybe some experimentation.

I would strongly recommend keeping the ileo during chemo - I cannot imagine dealing with the GI effects of 5FU with a new reversal. So much better changing bags than being in the bathroom constantly.

Many hugs and good luck to you both!