Successful Ileo Reversal and Recovery Insights

Since I can't figure out how to post in the forum (it keeps logging me out), I'm putting this in blog form.

I had my ileo reversal last week and it appears to have been successful!

I feel good, I'm being careful about what and how much I eat, and I'm able to wear pants again, though still too sore to do up the top button with a tucked-in shirt.

Please, please, please understand that I am not bragging. I had an emergency colostomy in mid/late June due to post-op complications stemming from diverticulitis, and that reversal was done in late September. However, I hadn't yet healed properly; there were many adhesions and a lot of scar tissue that the surgeon had to remove. So, to avoid the probability of resulting complications leading to a permanent colostomy, the surgeon elected to go with an ileostomy to allow my colon time to heal properly.

If anything, I found the ileostomy much harder to deal with and accept than the original colostomy had been. And the original wasn't easy for me by a damn sight.

For those here planning/waiting for a reversal, it is possible to be successful! I advise scheduling the surgery first thing in the morning, as mine was late in the afternoon, which allowed me the time to have one final emotional meltdown while waiting to go in.

I still have to be careful what I eat and how much so I don't do something stupid like splitting open the seal in my small intestine for a while yet. But, that is not going to be a problem! If I have to be a complete pain in the ass to my surgeon's staff with questions, well then I guess that's exactly what I will be, and I won't even feel bad about it. I have found that a single Aleve controls my post-op pain very well and now only need an oxycodone once per day (maybe) and then a couple right before bed, as by then I'm pretty sore from puttering around the house all day or going for a nice walk if it isn't too cold outside.

It can work! I realize that it's still early yet, and it's possible that things may go south again. But then, it's possible that a satellite might fall out of orbit and hit me in the head too, and I don't worry too much about that. I have more control over my recovery than I do over orbital reentry, so I feel even better about my chances at complete success than I do about my chances of getting domed by a comsat.

Best wishes to you and yours, highest hopes that you will embrace life whatever your condition, and a sincere and heartfelt thank you just for being here on this site when I needed to read and write or relate.

God bless you all.

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Apologies, but no matter what I do, I can't get this thing to let me add a reply to answer questions, so I will just edit and add on here.

Thank you for the encouragement and well wishes; it means a lot coming from you good folk who've been there and done that. I appreciate the well wishes I get from others, but they can't really know the way we know. Thank you sincerely.

fable:

There is some pain and stiffness, but much less than I expected. I'm a little over a week out now and am taking an Aleve every morning that works almost all day. In the evening, an oxycodone or two before bed since by that time I'm pretty sore and need a little help to sleep.

The BMs were at first very alarming since it was expelling blood from the surgery. Expect this, but keep open communications with your nursing staff and surgical team. You'll probably be asked to poop in the hat so they can track the volume the way they track urine output. It's unpleasant, but you buy your ticket and take your ride.

At first, I had a Penrose (?) drain sticking out either side of the sealed stoma incision to allow drainage. This was removed before I went home, and if I hadn't been watching, I wouldn't have known they even started, let alone finished removing it. My stay this time was only three days before I went home.

Be careful not to overeat; it's easy to do without realizing it, and that can lead to some pretty severe cramping, as I found out. It's also a good way to accidentally split your intestine open, so several small meals, not one big one, okay?

I had a lot of false alarms at first. Run to the bathroom and...nothing. Maybe a little gas, but I didn't want to push too hard either. I'm taking 1 or 2 stool softeners a day along with mild bulking fiber with meals. Want to keep it all moving smooth, after all!

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This stay was three days; the colo to ileo stay was 4 or 5 given my history of failed surgeries (2 failed laparos and one major surgery in June this year) and an apparent susceptibility to infection. I did well after getting the loop ileo, so this time they sent me home after three days and watching my output to make sure everything was what it was supposed to be. On another good note, the seatbelt didn't tear anything open on my way home this time like it did in September! Two thumbs way, way up for not having to run to the ER a couple of hours after getting home again! I actually didn't have very much pain at all for the colostomy to ileostomy procedure. Yes, there was some, but not too bad. This one has more, but I think that's primarily because not only is my body trying to heal up the inside, it's also trying to heal up the incision itself this time.

The soreness I have now is "deeper" than I had before, like a very touchy bruise for instance, but it seems to be localized around the former stoma site. It's the itchy feeling I get from the tape holding a 4x4 in place that really drives me buggy. Although at one point early on, my wife rolled over in the night and elbowed me right dead center in the incision. Wow, that's an eye-opener!

I would suggest bracing yourself into bed with some big soft pillows on either side when you first get home to keep something like that or a rollover from occurring. On the upside, I haven't slept in my own bed since June, and man, does that sleep better than that rented hospital bed torture device I had been using.

I know exactly what you mean when you talk about the ileo/colo difference. It's the same experience I had to the letter. I have a lot (well, more than I'd like anyway) of what I can only surmise is gas pain. At this point, my chief concern is constipation, which might result in complications, so I'm doing my part to avoid that.

I don't know how common it is, but when I began even my clear liquid diet post-surgery, I had some semi-severe trouble with heartburn/indigestion followed by the worst case of hiccups I've ever heard of. I'd hiccup for hours after a meal, and they finally gave me a 25mg Thorazine along with my evening meds, and that stopped the hiccups. It sounds silly, but they were strong and constant enough that I was beginning to worry that I might rupture some sutures, to which they lightly agreed, so we tried the Thorazine. I was also pretty cramped up by then because I ate more than I should have, so they gave me a full dose of IV pain med. I slept really well that night but thankfully was able to wake every now and again for a trip to the bathroom.

I'll be pulling for you, and feel free to post up any question you want. I may not have an answer, but I will tell you how I dealt with something if I have experience with it.

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Jaebreezy, breathe, hold it a few seconds, then let it out. I understand the fear of going under again, and it sounds like our stories are very similar.

I never knew what diverticulitis was, let alone knew I had it, until August 2010, and by June 7, 2011, I was having a partial sigmoidectomy. By the end of June, I was on emergency surgery number 2 (3 surgeries in all that month, including the original) and I was down some 25 lbs and fading due to infections and sepsis, and kidney failure and a new colostomy...it was a rough road. A week or so later (2 weeks maybe?) I was back in the hospital due to malnutrition and dehydration and was down another 10-ish pounds.

The reversal surgeries went much better than those did. It is possible that complications may arise; I don't want to try and BS you about that. But, the reversal is almost always far less complicated due to the nature of things according to my surgeon. You might have to go through a two-step process; it might be a one-step, I don't know, but your surgeon does, and that's what really counts. Follow their instructions for care afterward. Something that has helped me an awful lot in getting back into the whole processing food business is kefir (think of it as liquid yogurt) since it's packed full of the good guy little critters. Talk to your doctor before trying it though to make sure you don't have some allergy or something. Most people don't, but I don't know your full story, and your doc does.

I know it's difficult to do, but relax. Get as relaxed as possible and let your surgical team know you're scared so they can have some Valium or something waiting for you before you go in for surgery. I got so scared that the Valium wasn't enough, and they had to dose me with Versed (versed? Can't...uhhh...remember ;p) quite some time before they wheeled me in. I kept squeezing my wife's hand and repeating over and over, "I didn't quit, I made it this far, I didn't quit."

I'll tell you all a little secret: I quit a lot of things in my life. Some were "good" quits, but mostly they were "I'm tired of this, I quit" type of "bad" quits.

If I didn't quit, then dammit you can't quit either. Hang tough, and you'll see the world on the flip side.

I am so happy for you! There's nothing better than the feeling of accomplishing something you have dreamed of (even if it's to be 'normal' again). I tried the reversal but for 14 months I had infections, and abscesses and I was in pain all day everyday (even with paracetamol, ibuprofen, oramorph and fentanyl in my system) for the whole time. I was absolutely gutted, and quite heartbroken really when they told me the reversal would never work and I ended up with my permanent ileostomy (which btw I found really easy to deal with considering everything!) and now I've got my ileostomy back, I'm not in any pain or on any pain medication (even though it's only been 3 months since the surgery) and I'm almost back to myself. I really wish you the best of luck with your reversal, because I know how bad it feels to think you've achieved something only to have it taken all away from you. Best wishes x

Hallelujah!! Finally, someone who has gone through what I am going through right now. Thank you!! First, I don't think you're bragging by any means. Your tone is so positive and full of insight rather than condescension or disdain. Big difference. I had my colostomy transformed into a loop ileo as part of a two-phase reversal process on 11/14. I had it done early at 11:45 6 am because I knew I'd flip out just being hooked to an IV again. Can I please ask how your recovery from the second surgery went? Details? Did or do you have

Ok, that was weird... I was going to ask if you have urgency or incontinence issues? Was it difficult to control your BMs? How long did you stay in the hospital for the second surgery? Did you have drains? I'm sorry for bombarding you with these questions. My second surgery is in 2+ weeks and I'm nervous, excited, scared!!!

No, you're not bragging at all, darlz. Your reversal sounds like a great success. I was so excited to have my first stoma reversed. I wasn't scared; I was excited too, but that feeling of being normal again just never happened for me. This is my 3rd stoma. Just because I was reconnected, I didn't feel NORMAL one bit. And yeah, ileo and colostomy are very different. I know many people with colostomies who can irrigate and only need a tiny patch to cover the stoma. Ileostomies and urostomies, in my opinion, only seem to have gotten the shitty end of the stick, but I had no problems putting on a pouch whatsoever for my ileostomy, just a bit nervous the first few times. I work with the majority; out of 30 of us, I'm the only ileo user, and the other 2 people have uro's; the rest have colostomies. I was pissed off about hearing the difference with a colostomy, although not everyone can irrigate even having a colostomy. All the best, darlz. Take care, good luck with your health in the future. Mooza xxxx... Oh, I had drains and that rotten nose tube when I had my couple of reversals. Fable, but could be better these days! Maybe my ileo was on in 1996 till 1997 and back on in 2000 and off in 2001 and back in 2005, but another op for total colectomy in 2008. ADHESION PAIN NOW and hernias, grrrrrrrrrrrrrrrrrrrrrrrrr, more op on the way xx

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

I have the same problems trying to post in the forum from my mobile. It just logs me out. Oh well... Thank you for the tips!! I remember the hat and having to measure my output when the nursing staff was too busy. I have indeed purchased my ticket for this rollercoaster ride and intend not to stuff my face lest I hurl post-operative chunks. ;) You seem in remarkable spirits one week out from surgery. I'm glad to hear you aren't in too much pain. How long did you stay in the hospital for the colostomy to ileo surgery? Was the stoma closure incision more painful than the colostomy to loop ileo? I'm having a hard time adapting to my ileo. The effluent is just so liquid and NONSTOP. Ugh. I preferred the colostomy and told my colorectal surgeon that if for some reason the first phase didn't work out, I would rather stick with the colostomy. Anyway, I am rambling. I hope your recovery continues as well as the past week. Please keep updating!! As I've said before, I want to read it all—the good, the bad, the ugly. :) Take care, Fable

Wow, very informative! Interesting about the hiccups. They can hurt after a while, don't they? I can't tell you how grateful I am to read your experience and advice, especially now. I don't have any blinders on. I fully expect this to be a major hurdle, but if I can beat cancer and survive peritonitis with multiple intra-abdominal abscesses, then I can give it my best shot! So far, I have been taking good care of myself; eating well and building stamina by doing a little more each day with lots of rest in between adventures. My best wishes to you and your family! Happy holidays and thanks again for the responses! :)

Thank you for sharing your positive story. My reversal is coming up this week and having seen so many stories where the outcome was not as great, I was starting to get pretty nervous. This gives me hope. :)