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3 months post ileostomy reversal Update

Posted by canaussie, on Fri Apr 23, 2010 9:47 pm
I wanted to put a quick update here to let those interested know how I'm doing since my ileostomy reversal 3 months ago.
I had good progress for the first 2 months but the past 3 weeks seem to have gone backwards.  I'm still in a lot of pain and spending too much time in the bathroom (8 - 12 x daily).  I am housebound all morning and if I need to go out at all, I fast beforehand.  Gas and cramping are a huge problem!

The surgeon is fairly happy with the way things are going.  He told me 2 weeks ago that recovery could take 6 - 12 months - that was a downer.
I also have a huge swelling on my lower left abdomin - I look 6 months pregnant!  Surgeon and Dr say it's not a hernia (yet) but they are watching it closely.  
I'm still careful with my diet but I can eat tomatoes and lettuce in moderation, some vegies and peanuts!
I have to admit, there are days when I wonder if I was better off with the bag, but I do believe things will get better, eventually.  

I had been taking Imodium (Loperamide) and Percacet (Oxycocet) up until today.  My doc wants me to try a 2 new meds - Tramacet (Tramadol) for pain and Normacol (sterculia gum) for bulking fibre to help reduce/bulk bm's.  Has anyone tried either of these before?

Thanks and love to you all,
Lorraine
Reply by weewee, on Sat Apr 24, 2010 12:47 am
well hope things get better alot of shit to deal with at one time and pray that one day a true shit is well deserved. for those who are looking at a reversal we would have to always wish the best and pray that it happens flawlessly. remember the old saying no pain no gain good luck and best wishes to you and your family
Reply by WOUNDED DOE, on Sat Apr 24, 2010 3:52 pm
Honey please feel free to keep in contact with me privately if you wish, you poor sweet thing....honestly, in my own opinion, doctors often times say things when they really are only surmising, their words are not always fact to hang on hun......bluntly, they try to make educated guesses.  

These things take a great deal of time and there is no set amount of time for everyone....true facts are this, some people do well after reversal....many do not, unfortunately....it's still very early for you darlin' but I feel terrible for what you are going through and I wish I could help you somehow  SadSadSad  I am concerned about the bulge in your tummy you speak of...I had something similiar happen once....long story....but I would love for you to contact an OBGYN and let him/her give you a look.  Don't stick with one doc and one opinion.....write me privately if you wish and we can get into this more if you want....bottom line is you ARE going to be OK sweet one!!!  You will...but we just need to support you right now and help you stay on top of things and figure out what is best for you.......meaning, maybe a couple more docs might/should get involved.   It will all get figured out honey, in the meantime, try to rest as much as possible and do your best to relieve the pain, feet up on the sofa dear!!  Push the fluids and don't do anything strenuous...keep us up on how you're doing!  I wish I was there to help you with something!!   But please know I've got your back in whatever way I can help Smile

Hugs and Love from your Doe Smile
Past Member
Reply by Past Member, on Sat Apr 24, 2010 8:05 pm
Hi Lorraine,

6-12 months may seem like a lifetime but imagine how well you will feel once you are back to full health, it can and does happen with reversals, the waiting must be the hardest part though.

With regards to Tramadol I personally would say an emphatic NO.  I took that post ileo surgery only for a few weeks, not only did it NOT kill the pain (had better luck with panadol of all things) I also had side effects like tremors, palpitations, hallucinations, depression and night sweats; pain relief it was not!  Perhaps I was unlucky and it may work for you,although there are many prescription painkillers that do the job and don't have many side effects.

Wishing you well on your journey to recovery,

Jo x
(yankaussie!)
Reply by junopete, on Mon Apr 26, 2010 4:47 pm
Get off all the vegges, the gas will decrease.  Most of the cramping is caused from the gas.  After many months you will normalize to a degree.
Are you a J poucher?

Rick.....
Reply by car1951, on Tue Apr 27, 2010 8:11 pm
I would be surprised if the Trandol worked for you.  Its nearly useless for the type of pain caused by spasms.  Try Darvocets--not so strong it puts you to sleep but capable of muteing the pain.  It won't stop it all together but it makes it bearable.
Gus
Reply by Gus, on Tue Apr 27, 2010 9:12 pm
Panadol taken 4 hourly is one of the best pain relievers around. I was on endone and the other mongrel painkiller and i got off them and onto panadol. It builds up to a level where pain is bearable but not completely gone. that tells you your alive. Once you stop taking panadol it flushes from yuor system over a few days so it doesnt have that "hey look at me I,m a painkiller and your hooked" affect.
Reply by canaussie, on Tue Apr 27, 2010 11:57 pm
Thanks for all the support guys.  So far the tramadol is keeping the pain at a low level, so I'm happy with that.  It doesn't make me drowsy, which is nice, and taking it throughout the day keeps me comfortable.  I haven't had any side effects.
I tried taking Panadol (Tylenol) and it didn't help at all.  I even have some panadeine here (my sister sent it from Aust.), and that didn't work.  So, for now, I'll stick with the Tramadol, knowing I have the percacets as a back up if needed.

I'm not sure the Normacol is working though.  Its supposed to bulk up the stool but so far I think it's worse.  I have to go into town tomorrow (hour drive) so I will be taking the imodium and fast beforehand, just in case.  I'll persist for another week before calling the Dr to see if I should go back to the imodium or try something else.

Rick, I don't have a j pouch - just had the ileostomy reversed after losing about 12 inches of large colon due to OB/GYN surgical error.  I am very careful with vegies - don't have them most days due to gas.

Anyone have thoughts on coffee/tea etc?  Do they cause gas or BM problems?

Thanks again,
Lorraine
Reply by junopete, on Wed Apr 28, 2010 2:47 pm
Coffee, has not bothered me at all.  I drink alot of it through out the day.  I put protein powdrer in the coffee.  But that is me.

The bowl seems to take months to recover from an operation.  A resection, which is what you describe of only 12 inches should not be a long term problem.

Good luck

Rick.....
Reply by dee05, on Fri Apr 30, 2010 1:18 pm
Hi there
I will not speak for anyone else, but for me the pelvic pouch/j-pouch did not work..I went 2 years with having 10-12 even more B.M per day.  I went down from 130lbs to 85lbs anything I ate went right through me.  They tried me on every med possible with no luck...In October of 2006 I was rushed to the Hospital by ambulance with extreme pain in my abdomen...after tests they rushed me into O.R. and preformed a temporary iliostomy and repaired my j-pouch.  They said I had a tear in it which caused an abcess on my ovary and apparently I had feces in my body from the tear for how long no answers......I have been living with the temporary iliostomy since that day as well as a abdominal infection...Leakage through my wound area for 3 1/2 years.  I finally am having surgery on May6th to take down pelvic pouch and will close rectum and have a permanent colostomy bag.. but you know living with an infection this long as well as the bag I think Im ok with the outcome not to say Im disappointed the j-pouch(reversal) did not work for me........this infection as you can imagine is smelling; and I have to have dressings and tape on me all the time which more often leaks all over my cloths... As for the colostomy bag yes it sucks but I have worn a bathing suit and no one would have known.  I wear my same time jeans (just not super low) ha ha  when I tell people I have a colostomy bag they are like shut up no way???? Which makes me laugh.  I never ever let it get full or even 1/4 full.  I go to all my sons soccer games which here in Manitoba it seems they think people don't need to use bathrooms.  Not one field has a porta potty or club unlocked for people to use.. That will be my goal when Im fully recovered is to push for out door pottys... lol...anyhow I just don't drink or eat prior to a game...or I purchased a Man's urinal for the vehical.  The femal one doesn't have a closure...
That is my story and my quality of life with the bag so far has giving me so much more freedom than with the Reversal.. I also have a family member with the reversal and after 2 years of his body getting used to it has been doing great... he's back to work full time and only goes to the bathroom maybe 3x's per day.. awsome.. So stay positive and I wish you good luck with your reversal.. take care
Reply by Concerned_hubby, on Tue May 04, 2010 6:09 pm
Hi, I am new here.  My wife just had her ileostomy reversal last Thursday.  The surgery took 2 hours and she spent 5 hours in the recovery room.  They were unable to get her pain under control.  Eventually they gave her an epidural.  Surprisingly they sent her home on Saturday.
The reason for the ileostomy was due to a surgical error caused by her OBGYN 3 months ago.  She had a loop ileostomy and had to suffer for 3 months as a result.  She was in pain the entire 3 months due to the stoma being about an inch from her belly button resulting in the appliance leaking into her belly botton and onto her skin.  She had constant leakage and severe acidic burns on her stomach as a result.  She has been on percacet the entire 3 months to cope with the pain and burns.

We are now glad the reversal is done, its only been 5 days and still has the staples in.  She is still in a lot of pain and has a lot of swelling.  She looks like she is about 4-5 months pregnant.  The swelling is more around the closed wound and she says it feels like its about to pop open.  She hasnt seen her surgen since she came home but spoke to him and he is saying it is probably just gas.
Should she/we be concerned or is it too soon to tell?  Should we be worried about a possible hernia or is that also too soon to tell?
She has been through so much in the last 3 months (3 surgeries) and this has disrupted her and our lives.  Never in our wildest dreams did we expect this to happen due to a routine OBG surgery.
I am just concerned .
Reply by chadford, on Wed Jun 01, 2011 8:02 pm
I just found your post.  I had the exact same problems with skin irritation due to leakage of the stoma near the belly button.  I just had my reversal surgery 7 days ago.  I also look as though I am pregnant.  Did your wife's swelling go away?  How long did it take?  I can't fit in any of my clothes, and it is just one more upsetting experience through this whole ordeal.....
Reply by Rabbit, on Mon Jun 06, 2011 1:12 am
I'm so sorry for all of your suffering and wish I could help you. In two weeks I go in for a hysterectory and reversal- so hearing your information helps me to prepare. It gives me an opportunity to prepare my two teenagers who will freak out if I can't warn them ahead of time, so this doesn't make your situation better- but your sharing is very helpful because once people get out the other side they often leave it behind.

Hang in there and know I lot of caring strangers are thinking of you and wishing you the best.

Rabbit
Past Member
Reply by Past Member, on Mon Jun 13, 2011 1:00 am
Reply by destinystar, on Tue Jan 15, 2013 11:33 pm
HI rabbit and all..I am just wondering how your doing since your reversal or anyone else in this comment section..?
Any info would be helpful...since i am undecided on if i should go through with one or not...thanks.
Reply by latina63, on Sat Jan 26, 2013 12:37 pm
I am 3 months in with my ileo reversal. I will say that it is a GRADUAL improvement and you must be patient. I had horrible pain for 2 1/2 months and just within the last 2 wks has it eased up finally and I don't need a pain pill. To me Tramadol helped with the spasms in my rectum and lasted longer than the narcotics. I only took 50ml because anymore than that gave me the sweats and dizziness. I have LARS (lower anterior resection symdrome) feel free to google it and it will help you alot with your questions. They say that your 6 month mark will be the most noticeable improvement (can't wait for that), I no longer have diarrhea all of the time and now have more problems with constipation but not too bad I just don't empty all at same time like before. It WILL get better, my surgeon told me it can take up to 18 months for the rectum and colon to stretch depending on how much they had to remove. My tumor was in my mid-rectum so they took half plus 7" of colon and rectal lymph nodes, so it is now shorter. It is so worth it now, at first I was begging for my bag because of the pain and 20 BM's a day but it WILL get better, I promise! Good luck
Nora
Reply by ileoscopybaghelp, on Tue May 28, 2013 3:02 pm
I have just had my reversal of an ileostomy.  I am also having to be in the bathroom many times during the day which ofcoarse my doctor never told me of this.  I had A LOT!!!! of complications due to surgens errors, and 7 surgeries since Nov 2012.  My problem is it's hard for me to eat right now.  Food gags me.  I tried toast, rice (to help try to bind me up).  But, most of what am to eat I can't swallow.  Any help?????
Reply by Primeboy, on Tue May 28, 2013 4:48 pm
                                 
ileoscopybaghelp wrote:
I have just had my reversal of an ileostomy.  I am also having to be in the bathroom many times during the day which ofcoarse my doctor never told me of this.  I had A LOT!!!! of complications due to surgens errors, and 7 surgeries since Nov 2012.  My problem is it's hard for me to eat right now.  Food gags me.  I tried toast, rice (to help try to bind me up).  But, most of what am to eat I can't swallow.  Any help?????


Seven surgeries in 7 months? Sounds like your doctor is trying to get into the Guinness Book of Records. Based on what you say, I think you need to find a competent surgeon. Good luck!
Reply by latina63, on Sat Jun 22, 2013 11:40 am
I agree! When it comes to your bowels you will need to find an expert surgeon who specializes in this alone, but of course it looks like we are a day late and a dollar short! Good luck from here on out!
Nora
Reply by Davidwilliams2728, on Sun Aug 06, 2017 4:56 am

Hi all, im just three weeks out from my end collostomy reversal and just like the OP have wondered weather i have donr the right thing.

I did a lot of reading before the reversal and was totally aware that having the runs and spending a lot of time was part and parcel of the process but its still quite a shock lol.

Im looking forward to the day that i can get back to my gardening or even just walk up the garden without worrying about spraying the garden path with fertilizer lol, still.

For those asking weather they should go through with their own reversal , well only you can answer that but me, well i had to give it a shot. Living with a bag becomes bareable as time goes by, you learn to accept what you can and what you can do but after five years with mine, i just had to give it a shot, at least i will know one way or the other, so good luck to all of you having to make the decision .

 

So ive learned two things at least from my first visit here , ( hooray) i can use immodium , im gonna be in this recovery boat for maybe longer than i expected and that im not the only one in that boat, good luck to you all.

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