Reversal concerns

Hi!
I had a reversal done on March 15th, it was rough to begin with, alot of gas pains and constantly being distended but that doesn't last long. Before my reversal I heard alot of people talking about being incontinent so I was pretty worried about that. And I know everybody is different but I have not had the 1st bit of incontinince. I've heard of people taking immodium to help if it is an issue and theres also something your doctor can prescribe you to help as well!

Thank you for your response..I haven't had much luck getting responses at all but thought I'd give it another shot. I am reading through other posts that are making me fell more confident and definitely more prepared for what to expect. I am concerned that my surgeon doesn't have much experience with my situation and trying to get a second opinion has proved difficult to. In the end the only doctor I found was my surgeons partner for crying out loud! It feels irresponsible to "just do it" but I'm at a loss for what to do. I even tried to get to UC Davis medical center (one of the best hospitals and schools in the US) and they refused to see me since I wasn't their patient

from what I understand an ileorectal anastomosis (the surgery you will be getting) is simpler than an ileoanal anastomosis (a J pouch) because your rectum is fine so they can save it instead of having to form a 'new' rectum from small intestine. Your rectum already knows how to hold waste and I think it should be better at absorbing water than small intestine so you should have fewer worries of incontinence and frequency...

I also found this for you:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1420918/

Which pretty much verifies my guess.

Lastly, very few people who undergo either surgery end up with permanent incontinence. There may be some leakage or accidents after your surgery but they should markedly decrease over time. There is even a type of 'physical therapy' for us :P Incontinence does not have to be tolerated. If your IRA fails you still have the option of getting a Kock pouch or a permanent ileostomy.

I hope I helped to ease your fears! I know I'll be feeling anxious before my takedown too - but I have another surgery between now and then xD

Thank you everyone for you replies. The article was particularly informative. As for waiting and doing more research I really hesitate because I am in so much pain from the burn around my stoma. 5+ months out nd I still recline most of the time because of the pain. I am isolated most of the time and my employer will eventually have to replace me (I love my job!) so I'm in a hurry. I realize this is ridiculous as my health is much more important but it's hard to think of continuing like this for another second. I have requested a second but have less faith in this doc. I'll keeplugging along and try to be patient (not one of my strong suits). Thanks again and if you think of anything else please keep 'em coming!

Windy City,

Thank you so much! I found a doctor I'd been looking for. He'd done one of my seven surgeries and pulled off something no one else had been able to! I'm so thrilled and will call him Monday - seriously thank you!

I have no personal experience w/a reversal, but wanted to comment on your stoma burn. Have you posted another thread on that? People here might be able to help you.

Do you use eakins or some other barrier ring?

If you post what you do, there's a lot of experience here, and someone might have an idea that could help. That's a separate issue and shouldn't be costing you your job or be the main reason for surgery.

Lisa - not to sound like a martyr, I am just dealing with things as they are. My GI doctor swears my surgeon did an excellent job in my resection (I've never had scar tissue, adhesions, blockages). But my original surgeon's surgical approach was one other surgeons wouldn't have taken. And what did I know back then - nothing! My experience with surgeries were a few D & C's and oral surgeries. I just was not informed at all. I don't think I would have even known what to ask my original surgeon anyway, but it was only in the subsequent years when I've pressed other surgeons to weigh in on why I had the surgical approach that I did have - one was his partner (my original surgeon moved to Atlanta). He said he would have given me a J pouch. My new surgeon (who I would go to if I need more colon surgery) shook her head once, got tears in her eyes and said she wonders sometime if "we" should be doing these surgeries at all, meaning patching people back together w/o a sigmoid. She implied I should have had a permanent colostomy. And yet my situation isn't malpractice either, my original surgeon did save my life - he got every single cancer cell, I haven't had one colon polyp since the one that turned malignant - 13 years ago.

So I guess when I see topics like yours, I just want others to be aware that removing your sigmoid - the colon's reservoir - is tricky. You may end up multiple bm's per day, for life.

I always joke that if we win the lotto, I'm going to the Mayo Clinic. It would be great to hear what other doctors would suggest but we have inadequate insurance. I can't even work full time. Now I'm starting to sound like that martyr and that is not my intention. I'd like others to be aware and ask questions that I didn't know enough to ask. In hindsight, I probably should have had a second surgical opinion. From what I gathered, no doubt another colon surgeon would have had a different idea on how to remove my tumor (which was barely inside).

I hope you find the help you are looking for. And finally, I want to say having an ostomy is not the end of the world. Not at all. I managed my temp one just fine.

Lisa - I would specifically ask what you can expect post-takedown/reconnection. How many bm's per day, what your stool consistency will be like, if you'll need to eat a certain diet at first (a low residue diet is what I reply upon the most). Don't let them think you are asking about post-surgical pain. But rather what your life will be like, day in, day out. My original surgeon kept saying to me - "this is going to turn your world upside down" and I didn't ask him to elaborate. He did ask what previous surgeries I had had and since they were either D & C's or oral surgeries (wisdom teeth extractions), I honestly thought he meant post-op pain. Had I known I'd be having this high # of bm count, I may have asked for another surgical option/approach. But again, ignorance was bliss for me back then, I was mostly shell shocked at being told I had cancer at age 43. What I really should have been asking is - okay, 6 months post-surgeries/takedown, what will my daily life be like?

Now all of this said, I have been told my post-takedown situation is extreme, many in my shoes have 6, 8 or even 10 bm's per day. I realize now there is no way I could go back to one bm per day, there just isn't anywhere internally for stool to collect. I eat, I go, it's a given.

I sure hope I haven't frightened you but armed you with info and questions, and prompted you to ask questions, pin your surgeon down on what to expect post-op wise.

My experience has been once your stitches are removed, your surgeon doesn't need to see you again. And you GI doc is the one left with caring for you. I feel as though I fell thru the cracks of the medical system at times.

Mostly I do okay, mentally. I know many more people in my age group with more severe health situations, so thinking about them makes me cope with my situation. So I poop - a lot. lol It sure would be nice to have one normal stool/bm day. lol

Good luck!

 

  I have just had my ileostomy reversed 7 weeks ago and I didn't know what questions to ask and didn't know what help I would need afterwards.  I just thought great back to normal or at least continue the same as on ileostomy. 

I now realise I should have asked for some counselling from a stoma nurse or an incontinence professional who are well equipt to tell you what you should know and how it will affect you. 

They all say that what you can expect is different for everyone and that is true - we all have different lengths of large or small colon and other problems so no one is the same. 

I am struggling to understand what is happening with my shortened large bowel and smaller small bowel, and would love to hear from anyone else who has a similar experience.  12-18 BMS and both constipation and diarrhoea and sore bottom after evening constant trips to loo.

Bye for now.