Countdown to Ileostomy Reversal - What to Expect Post-Op?

Hello everyone.
I just found and joined this site a few days ago. I wish I had discovered it sooner. So many helpful tips and hints that even the hospitals don't seem to know.
Anyway, with that being said, I begin the countdown to my ileostomy reversal.
Five weeks from today.
I know that sounds like it's far away, but in my head, it's coming fast and I have no idea what to expect.
A brief history of what happened to me starts at the end of May 2011. I awoke in the middle of the night with severe cramps and vomiting. A few hours later, I was on the table. The doctors say that my large intestine ruptured and I became septic. I was transferred to a larger hospital when they couldn't stabilize my vital signs. I was kept in a coma for 10 days and awoke with an ileostomy.
The surgeon tells me he removed a foot each of my small and large intestine that was damaged as well as my appendix since he was in the neighborhood. He gave me the ileostomy as a precaution to allow my body to recover.
Unfortunately, my extended period in a coma left me with paralysis, foot drop, and neuropathy in my legs and hands. I had to learn to walk, write, and handle basic tasks all over again.
I was dependent on a wheelchair and walker for an extended period. I was hospitalized for over 50 days.
The reversal surgery had been postponed due to my overall condition and fears I may not be strong enough to handle another surgery.

Since then, I have been doing regular physio and feeling much better. I even managed to put back on 20 of the 60 pounds I lost over the summer.

Surgically, since my release from the hospital, there have been no complications, no pain, no fever, nothing to indicate a problem.

A colonoscopy a few weeks ago showed all is well, and the date has been set for Feb 21, 2012.

Nothing to do but wait now..

After all that, if you are still reading, can anyone offer tips, suggestions, or even thoughts on what to expect post-op?

Thanks and best wishes to everyone here.

Dave

P.S. I will admit that after reading several posts in this section, there seems to be a lot of negativity concerning complications after reversal...should I consider not having it done?

Welcome! I'm relatively new here as well. We're all soldiers here and have the 1,000 mile stare from being in the bloody minefield of ostomy land. (Ha ha ... Full Metal Jacket reference there... )

Reversals aren't an option for everyone, voluntary decision or not. It seems to all depend on how you became an ostomate in the first place. Mine was bowel injury during gynecological cancer surgery. I have received a good prognosis on the success of my upcoming reversal despite a minor incision infection. Some have experienced painful disappointment when a reversal doesn't work out as they had hoped.

My unsolicited advice? Try not to take it negatively, but as wise words of caution from those who have BTDT and are trying to provide another perspective. There are plenty of successful stories, too! Many positive and supportive ostomates that have come back to share their journey. I hope I'm one of those, but if not, then that's my story, too.

Tips for recovery?
Sudocream
Baby wipes
Patience

Take care and keep us updated,
Fable

Thanks Fable,
I welcome the input, regardless of what it is. The truth is the truth. Although they say they have no idea what caused my original illness that caused my rupture and led to my ileostomy, they assure me that I am all clear now for reattachment and that the prognosis is excellent.
I try not to be too loud about that as I know there are many here that will never have the option.

All the doctor has said is that it will be an adjustment as my body learns again and that I should be prepared to have diarrhea one day and be constipated the next...great...now is not the time to rethink renting a place to live with the bathroom on the second floor...lol.

Thanks for the tips..every little bit helps.

All the best.
Dave

Hey Dave - just wanted to wish you the best of luck - I don't think that you have to worry about the people who can't have a reversal - I'm one of them and it doesn't bother me that you can - I am used to Stefan now and I might miss him LOL - I live in London and I was wondering where you are having the reversal done and who your surgeon is - just curious to see if yours was the same as mine. Any time you want to go for coffee or a drink just let me know. Terry

Hi Dave, sounds like you've got some very good advice there from two clever ladies. Like you, I also found myself surprised to have an ostomy after emergency surgery back in February last. I also had some serious complications at first and spent almost a week in ICU. Thankfully I didn't suffer like yourself. But you're now on the road back once again. I'm also awaiting reversal surgery but have had a few cancellations and still waiting. Like Fable, I'm not particularly worried if my reversal doesn't work, but I still keep a positive outlook and am just thankful to be here. I've learned so much this past year and the help and advice I've received here has kept me on the straight and narrow...(Thanks Dawneagle!!) So my advice to you is to stay positive and I'm sure everything will go well. Just have a look at Sunnydisposition and Gizmo's posts here and I think you'll get a pretty honest insight into the good and bad days of recovery. Keep us posted and here's wishing you the very best for next month. Take care, Colm

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Terry, and thanks for the reply. I'm sorry it's taken me so long to answer.
My original surgery was done in Woodstock by Dr. Humphrey. I will be returning to Woodstock for him to do the reversal.
I'll have to take a rain check on the drink until March or so. I'm staying with family near Ottawa until my surgery date. They put me up in a spare room on the main floor near a bathroom. It's been nice not to have to climb stairs as well as being near family.

Take care, and thanks again!

Thanks for writing. Yes, those folks that have replied have been very kind. It's just a lot to deal with, and of course not an everyday thing, so it's hard to guess. Of course, the more you speculate, the more your mind gets carried away.

I will definitely check out those profiles. Thanks again and keep us posted on your reversal.

Dave

Dave-

I know where you are, dear friend. I am in the same boat; scheduled for my reversal on Feb. 1st after a couple of disappointing postponements. If you start thinking about things too much, your mind can definitely start going crazy!
When "those times" hit for me, I return to my original assessment.....since I AM a candidate for reversal, do I think that I owe it to myself to try it and see how it works out? And my answer is always a resounding "YES!" Not because a stoma makes ANYONE any more or less of a person; that's just silliness....but because I do have this option available to me; I am still young enough and well enough to have it done at this point in my life; and I know the longer I wait, the less likely I will be able to ensure halfway decent health to carry out and recover from a reversal....I have lupus and it rares its ugly head way too often. Plus, I have decent health insurance right now and that may not always be the case in the future.
Am I scared? YES. Excited? That, too! Nervous? You bet.
Colm. Carol. Fable, Beaner. Ambies and a few more fine folks on here have really helped to encourage me and listen to all my rants as well! Sometimes I feel really guilty, fretting about my own situation when there are so many on here who have fared so much worse. I am humbled by the sufferings of others here as compared to my own situation.
I'll be taking all this good advice and recommendations with me as my reversal date nears; to the hospital; and homeward towards my recovery phase. Believe it or not, the surgery doesn't scare me nearly as much as the potential for accidents afterwards! Guess I'll depend on DEPENDS for a while.....you might want to buy stock since I am certain the price will go up when I start purchasing them in bulk!
I wish you the inner peace that you seek going forward; as well as a successful reversal and recovery phase! You will be in my thoughts and prayers!

Darla

Darla,
I can't thank you enough for your words. They came at exactly the right moment. I was having a horrible day. My feet are swollen, I'm in a bad mood... feeling sorry for myself.
I read what you said and it snapped me out of it. Something that I did take away from your comments, whether it was implied or not, was that I owe it to everyone here that doesn't have reversal as an option to go through with it. How selfish of me.
Your humor is a delight (depends) and your words about being humbled by the sufferings of others brought tears to my eyes.
I will keep you updated. I see you are scheduled (again) before my date. I will keep you in my thoughts and prayers.

Dave.

Dave-
Yes, I think we owe it both to ourselves and every person on here who is or is not a candidate for reversal to try and see what can become of our situation because "we" can! If it works, great. We'll be here to share our success stories and the journey of recovery and living life with our "new normal!" If for some reason we find ourselves with an ileostomy in the future; at least we can say we tried and can have the inner peace we need to move forward with life as a permanent ileostomy survivor!
You know, it's not so bad having had my ileo for over a year now; because I had to come to terms with it and accept it as well as what happened to me. Lupus killed my entire large intestine; but, like you, I really had no "warning" beforehand.....my only symptoms were a couple months of vomiting and low potassium; and a constant lower back ache. I hadn't had Crohn's or UC or cancer or any of these other illnesses that cause so much suffering and pain and debilitation in the large and/or small intestine! I have made peace with "Old Faithful" now; and that's the thing that I needed to do in order to move forward with the reversal.
Thank you so much for your kindness; openness; and perspective. We are all human and have "bad days".....I have more than my fair share of them, too, as well as times of vacillating back and forth about the reversal....it's just fear of the unknown sneaking in.....then I remember what FEAR stands for....False Evidence Appearing Real!

Darla

Hi Dave,
I am also in Canada, Toronto. I have never met someone so close geographically, so I am excited to meet you! I am also waiting for reversal but no date yet. My surgeon is Dr. Zane Cohen at Mount Sinai Hospital, Zane Cohen Centre.
It's nice to meet someone in Ontario!

Hi! Dave, I live in Casselman, Ont. 30 minutes from Ottawa. I had a temporary ileo two years ago because of colon cancer. I wore the bag for nine months, resting my bowel. I had my reversal in June 2010. My BM's (Bowel Movements) have been very inconsistent. Yesterday, I had around eight after lunch, double that after supper. Some are solid but pencil thin, others are a bit loose. Then, on occasion, I've had what I call explosions, just huge blasts which empty my bowels.
We live on 80 acres here and have an outhouse (Thank God) which has been my savior many times. Walking seems to speed things up down there. I envy my great companion Sacha when she has those huge solid dumps (Sweet Memories). I have learned to cope with this and I am cancer-free after having both prostate and colon cancer. Both were caught early due to my getting tested on a yearly basis.
Today is my 70th birthday and as usual, it's my workout day. I lifted weights for 32 years and thought that I was invincible. What a blow to my ego this was, Dave. My workouts are a lot shorter now and I walk with Sacha 3 miles a day. I do dumbbell work DAH!! and curl a 130 lb. car axle to stay in shape. I have a very positive attitude and hate to lose, so I beat the crap (pun intended) out of cancer. Life is great for me and I enjoy every day because now I have realized, Dave, that health is indeed wealth.
Please keep me informed of your progress, Dave. Your new buddy, Zeppo.

Dear Dave:
Always always consider "not having something done" just as much as you consider having something done.
I just had a colostomy takedown (reversal) before Christmas.
I'm doing well, but it looks like I might have a fistula as I have poo in my vagina, or so it seems. That is not the kiss of death -- it's reparable.

Aside from that complication, quiz your surgeon incessantly about not just recovery time, but on steps involved.
This is what I needed to prepare for:
1. Bowel rest in the hospital until I farted. This meant nothing by mouth except limited ice chips. I only suffered deprivation for 2 days but sometimes it takes longer.
2. Something like diversion colitis - I had "anal spasms" (fluttery farts discharge), some lovely burning along the colonic passageway (and oh, how my heart goes out to those who truly suffer colitis!!) and gentle anal incontinence.
3. I was asked to follow a "low residue" diet - essentially zero fiber, nothing with seeds, everything cooked to death including fruits other than banana. This is to allow the internal suture site(s) to heal properly, to not have any little pieces get caught and cause problems, allows the bowel portion that's remained dormant to learn to go "back to work" in a gentler fashion, and to keep stool soft to prevent straining.
4. I was also stuffed to the brim with Colace (Dulcolax), a stool softening medication to keep everything mushy in addition to the special diet.

I wasn't told, but I think the excessive Colace might also provide a hint as to whether the anus is coming back to continence. There are delicate little tissues on the inner aspect of the anal canal whose job it is to distinguish between solid, liquid, and gas, and when to "let go" and when to hold it.

How have I managed?
I wear layered protection 24/7 these days, including a long pantiliner + a folded paper towel. With my doctor's permission, I systematically backed down the Colace, ditched the diet, and took child-portions of Pepto or Immodium, depending on whether I was burning or running.
Being a girl, I wash out 2-5x a day as I can't stand the feeling of "mud" in that place where it most certainly doesn't belong.
The only unnecessary expense was the $18 for adult diapers; when the "mudslide" hit on New Year's weekend, all my WOCN/ET friends were on vacation and I didn't know how much worse the mud would get. Turns out, that first morning's mudslide was the same volume as any other day.
But I did feel a little more secure at night for a short while, knowing that I wouldn't awaken to mud having slithered out of my underwear onto my jammies and ultimately onto the bed.

The only other advice I can give you is to watch the timing of the takedown. Considering the infection, which hopefully was a fluke (I had a UTI that required hospitalization but did not interrupt the surgical schedule) and the extra 5 weeks to heal, my unlicensed feeling is that if your surgeon feels you're sufficiently healed to tolerate both general anesthesia and having your belly sliced open once again, you should be OK.

Good luck, and I'd be interested to know if you found my input helpful/comforting. Go read my bio and see if I'm "OK" - I speak "professionally" only because of formal education, intense self-education, and personal experience.
Mazel tov - Kate (aka "annabeth")

Dear Annabeth-
Your clarity in potential outcomes is much appreciated. Armed with this type of information beforehand can be so helpful afterwards in communicating our issues and solving them. My takedown is scheduled for Feb 13th and the unknown of "what could" is far scarier than knowing.
Thank you for sharing,
Rabbit

I was diagnosed with ulcerative colitis in 2003 after having problems for years. My father had Crohn's disease. I had my large intestine removed in 2009 and had a stoma for the next year and a half. When I found this forum, it was a huge blessing for me, although I don't post much.

This last October, I had my reversal. I was blessed with an awesome surgeon.
She did the surgery in two parts. Her reasoning was to let the internal pouch heal completely before using it. The loop ileostomy was not fun and a little more difficult to manage than a regular stoma. This was because they pull a little bit of the intestine out above the pouch into a stoma. Mine rested too close to my skin, and I wish I had gone to see an ostomy nurse sooner to get fitted for a new convex bag. Also, after the first surgery, I tried food a bit too quickly. My intestines apparently didn't like being moved around, and I should have been extra slow with the food initially. I suggest toast and water or 7-Up and gradually go up. I didn't follow this, ramped up food too quickly, and got a blockage as my intestines twisted and spent twice as long in the hospital with an NG tube, which was one of the worst experiences. Through all of this, however, I kept going and had my family and friends supporting me. Now, however, it all seems so far behind. The second part of the surgery, where the surgeon popped the stoma back in and stitched me up, was a blink in comparison. I wasn't allowed to eat until I passed gas, and while I worried at first, there really wasn't any need to. It naturally just happened. It can take a bit for your intestines to wake back up again, so don't let them push you into thinking it should happen sooner. I think it was something like the first 24 to 48 hours after surgery. I slowed into eating this time and was rewarded without any problems.

They purse-stringed my stoma; kinda cinched it smaller with thread instead of closing it completely. This allows for drainage and is easier to keep clean and non-infected. They show you how to pack it wet to dry, and after having to change the bag for so long, this is easy. However, they are not kidding, it takes at least 8 to 10 weeks to heal completely, and by the end, I was impatient. Personally, while many of my friends were grossed out by the open "stoma" wound, I found the whole healing process involving it fascinating.

Everyone is going to be different. Every surgeon will do it differently. This is my experience; I have no insight really to anyone else who has had the reversal done. I will tell you, for me, it was worth it, and I haven't had any problems afterwards and have gone back to eating things I couldn't eat with the ostomy.

I did find this site http://www.iasupport.org/forum/default.asp The ileostomy internal pouch support group - not sure how much help it is or not because I haven't looked at it yet.

I love the fact that I got the reversal and don't regret any of it. I hope my story helps.

Hi Dave, gosh reading your post brings back so many memories for me. Your experience sounds just like mine, as I was in a coma, lost use of my walking ability, and spent 7 weeks in rehab learning to walk again. The difference is I am not having a reversal because I don't do well with surgery. They don't want to do any more, and my breathing is very bad from COPD. I am fighting cancer of the colon and due to go for my scans the first week of Feb, and I always get very nervous when these scans come up. I had one bad scare as a mass was found three months ago, but thank God it came back non-cancerous after the biopsy. I find once you have cancer, your mind is never at rest as you are always going for tests. I want to wish you good luck with your reversal. Hometown: Joyce

Hey there, nice to "meet" you as well.
Check out the site and you will see there are well over 200 people from Ontario that are members on this site. Chances are there are some in your area even closer than me.
I plan to keep posting here after the reversal, as soon as I am able.
It's 4 weeks from today... Yikes!

Hello Zeppo, and thanks for writing. My reversal is scheduled for exactly 4 weeks from today. I am excited and nervous all at the same time. They say my chances for a successful procedure are excellent, even though they never did narrow things down to the original cause. I'm trying to prepare myself by stocking up on plenty of bathroom supplies. It promises to be an interesting ride.

Nixxfey- Thank you so much for posting your reversal experience! I am scheduled for a reversal on 2-1....I had my entire large intestine removed in Dec. 2010. I won't have a J pouch as I have enough rectum left to suffice. Question: How long did it take you to get back to a "new normal" stool wise? I have read that those of us with no large intestine left can "go" 15 times a day in the beginning.....I am also friends with a nurse who had her large intestine/j pouch reversal 2 years ago and she tells me that Imodium and psyllium husks have been her secret to "slowing things down!" Any insight on your personal experience will be greatly appreciated. I am so happy to hear that you are doing well and that your reversal was successful! Congratulations and best wishes for continued recovery and an awesome "new normal!"

Darla

Well, Kate/Annabeth, thanks for the input. It was both informative and entertaining. I can't say I've actually chuckled out loud at a posting here until now. Well done.
Thanks for the detail and honesty. I think that's all any of us really want when we post here.
To paraphrase another member, it's not that we fear what we know, we fear what we don't know.

P.S. I can't check out your profile. Are you hidden or something?

Hi Dave, I had Crohn's, had a fistula perforate my bowel, had emergency surgery last February. I was in the hospital for 6 1/2 weeks for ostomy. I had developed Legionella pneumonia, so I almost died twice in that period of time. So I was told to walk as much as possible before this surgery to open lungs. I had my reversal on Jan. 12th in Philadelphia, PA. I had no prep to speak of, liquid diet the day before. I felt very confident and calm going into this. They planned to try it laparoscopically, unless something came up after they got in there. Everything went well. I was in for six days. Nothing by mouth until gas passes, then as soon as I passed a stool, they shipped me out. I had a wound care nurse here for six visits to change the dressings in the healing stoma site. That is all my insurance allowed, so my husband will be changing it until it heals, which will probably be a few weeks. I was told to eat well-cooked food, nothing raw except bananas. Drink lots of water. This was the right thing for me to do, and I am healing on schedule. If something were to happen and I had to have the ostomy again, I would be fine with that. It saved my life and allowed me to still live my life. I will keep you posted on my progress, and please let us know how all is going with you as the time draws closer!

I didn't get Legionella, just MRSA. I'm glad to hear that after all you went through that you're alive and kicking. That is awesome! I've made note of some of the things you said about foods to eat. Why nothing raw, I wonder? I have heard others say that too.

You're so right now. I see the light. For 8 months, I have resented the thing that saved my life. I actually thought today for a moment that I might miss him when he is gone. I have noticed others here nickname their stoma. Today, I was calling mine the 'Horn section" for all the gas I was passing rather loudly.

Between my work insurance and the socialized medicine, I should be good for nurse visits. I'm coming to understand that the stoma site is somehow left open??

You caught my attention with laparoscope... I didn't know that was an option. What an improvement over 65 staples and a scar from my belt to my man-boobs.

I'll have to ask my surgeon. I had my gall bladder done with the laparoscope. What a difference.

I think my biggest fear now is not so much the surgery, but the after effects. I've had funny bathroom habits since having the gall bladder out ten years ago. Having said that, it's settled down dramatically, but from time to time shows its face in the form of a "lights and sirens" trip to the loo.

My house has the bathroom on the second floor, and as a result of my coma, I have foot drop and some neuropathy. I also sprained my ankle while my leg was numb and didn't realize how badly until the feeling started to return. Now, of course, it hurts like an SOB ... all in all, stairs are a challenge. I can deal with multiple trips, but the urgency scares me. Any thoughts on that?

Thanks again for the post. What a happy outcome. All the best!

Beaner....you're back!   YAAAAAAY!

So glad to hear that things went well....Did you get to have this done laparoscopically?    Sounds like you did since you didn't mention a huge incision.    My reversal got postponed until 2-1 due to some lupus issues; so I will go in a week from today.    I've been thinking of you and praying for you......I'm really happy that you are doing well and the surgery appears to be a success!    Good for you!

Darla

Wonderful to have you back, Beaner!! Sounds like you're well on the road to recovery right now. As always, it's great to have another positive story to read. Well done and may the road to recovery be nice and smooth. Take good care, Colm

I went for my two-week check-up with the surgeon. I have an open wound that needs to heal from the inside out where the stoma was. He said it had a lot of dead tissue in it, so he scraped it out... Not painful, just a sensation. My poos are a little on the firm side, so he said to start eating more than just the soft diet. Tomorrow I will have cereal and banana, and a different veggie at dinner than green beans and potatoes. Dave, you may want to stay in one of your upstairs rooms closer to the bathroom, maybe for part of the day, until you feel a little more confident about the time it takes you to get to the bathroom. I did have mine done laparoscopically. They did not make the decision until they got in there and looked around. I was in surgery for 4 1/2 hours. I did have a psychotic episode the second day after the surgery, probably due to the anesthesia. Like they say, everyone is different. Feel free to fire away with questions!

Hi Beaner, and thanks for writing. You seem to have a fan club here. Glad to hear you are doing well after the first two weeks. Now that I know that the scope is an option, I'm really hopeful.
I'll try not to get my hopes up too much. If I wake up with 65 new staples, so be it.
I hear what you are saying about staying close to the bathroom. I'm already stocked up on toilet paper and reading materials.
The things I'm looking for now is a menu or a list of foods for afterwards. I live alone and want to stock the place up before I go in for surgery.
Any thoughts or recommendations?

The other thing that's been troubling me, and it may sound silly at this point, but the more I read, the more I'm not sure of what sort of ileostomy I have.
My surgeon called it a "loop" but from what I've read, it's an "end"..what's the difference?
I have one stoma with one hole in the end. My colon is intact (minus the last 30cm).
What else do I need to know?

Thanks everyone.

Just a hair over 3 weeks until my reversal. I'm anxious, but in a good way. If I had my way, I'd be doing it tomorrow.
Following the advice of some of the members here, I made my first "post-surgery prep" purchases today. The girl at Wal-Mart looked at me funny when I asked her where the diaper rash cream and adult diapers were...oh well.
Still looking for ideas to stock up on groceries for after my surgery. Any suggestions would be greatly appreciated.

Dave

Dave -

Yeah, I've been looking for some Calmoseptine cream myself!

I'm still on for 2-1!    Like Beaner, it's clear liquids all day on Tuesday and then NPO after midnight.    I am due at the hospital at 6am Wed. morning....surgery is scheduled for 7:30am.    No other real "prep" work other than doing several rounds of wipes the night before and the morning of surgery to cut down on MRSA exposure.....
I'll keep you posted on my first few days post-surgery as I am able.    Glad to see you are making preparations as well and are looking forward to your journey!

Thoughts and Prayers-
Darla

Hi Darla,
If you are looking, the Walmart had everything I needed (including the Sudocream) and all cheaper than the local pharmacy.
I don't have my pre-op instructions yet, but my pre-op meeting isn't for a couple of weeks yet.
Unfortunately, I was in the hospital so long (it's the best place to catch something, since all the sick people are there) that I tested MRSA positive..figures. Now I have to tell everyone and their brother about it until this July.
I look forward to reading all about your journey. I'm sure it will be smooth and for what it's worth I'll say a few words for you too.

All the best.
Dave

Thank you, friend.
I will take a stroll to Walmart in the morning and see what I can gather for my week in the hospital!
My family and I went and tried out for the game show "Family Feud" today! It was a blast! We should know if we made it in about 3 weeks... but even if we didn't, we had a great time and a lot of good laughs... we'll treasure the experience and will smile one day when we pass down these memories to future generations!

Darla