Ileostomy Reversal Success Story - A Must Read!

Hi ... I had an emergency ileostomy done in Feb 2012. I was on life support and in a coma in ICU for over 4 weeks.

It was a shock to wake up with this bag hanging off me.... They said they could do a reversal....in a few months...

Well, a few months turned into 15 months....because I had an infection and plus the surgery was scheduled 4 times and cancelled....twice by the doctor..to put an emergency in my spot and twice I made it to the operating room only to have it cancelled because of my lungs...

I was very nervous...because I had read all these horror stories online about going to the washroom 30 times a day for the first bit after surgery and also not having control and then maybe after a year going six to ten times a day..depending.

I also had my surgeon tell me three times what a high-risk surgery it was and how I could die of all these different things...
With everything I read and heard, I almost did not do it...

Anyway, I finally had it done...4 weeks ago....And I am happy to say I am so so glad I did it...

The pain was bad after the surgery for a few days...I had an epidural but then they removed it ..one doc said it was not working.. so they put me on a pain pump....and I can tell you the epidural was working...

Anyway...two days after surgery I had one BM loose...Then they said I had to wait till I had gas or regular BM to go home...after I started eating regular food...A week later nothing had happened so they sent me home anyway...

The second day home I threw up ...after eating breakfast...and had another loose BM.

After that, I waited for the running to the washroom to start...like I was told and what I had read about.....A week later I had nothing still....I was getting worried....But then finally I went to the washroom and it was completely normal....

Since that day...I have gone to the washroom once a day first thing in the morning and that is it....It has been a completely normal BM....I have been 3 weeks like this.....Only once a day......NO loss of control..no running 30 times...no diarrhea..

I have no large bowel left....only a small bowel....All the horror stories I have read...and all the worry was for nothing...

I swore if I had a good outcome I would write about it...because I only found one positive story when I was reading on the internet...and it was because of that lady or angel I should say that I went through with my surgery...She was only going 3 times a day....

I count my blessings...I am unsure how I will be in a year but I figure if I am this good now...I am very blessed and lucky so I want everyone considering a reversal to not listen to all these horror stories..We are all different and there are people like me that have had great outcomes.....they probably just do not come back to write about it....

All the best to all of you....

Glad to be back to normal.....after lots of prayers......

Good to hear you doing well.
Can't wait for my reversal.

Well, I almost did not go through with it...between all the negative feedback online and then my surgeon telling me the high risks...of the surgery...I was so close to just keeping the ileostomy for life...

And I am so blessed to be doing so well...I know everyone is different and I do not attend church on a regular basis but I am sure all the prayers and praying daily has helped me.

I am sure there are others out there like me but they just do not post...So I wanted to make sure I posted to help someone else that might be only seeing negative comments..

I have no large bowel and I am only in my 4th week since surgery...I have only had diarrhea once...and from the start I have only gone to the washroom once a day...

Now mind you I did have to run one day because of urgency feeling but one day compared to everything I have read seems like nothing..

Please let me know how you make out and I will pray for you...to come out of it as good as I have...
I am wondering how I will be in a year since supposedly things get better and I am thinking how much better could they get than where I am right now?

Thank you God for helping me recover and be able to have a life after this nightmare...

If you have any questions...message me...I have been through it all...15 months of a nightmare...and I am so lucky to be alive and well...

Hugs

I had emergency life-saving surgery for a pancreatic necrosectomy, cholecystectomy, gastrostomy-jejunostomy tube, and ileostomy in November of 2011. I also developed an enterocutaneous fistula as a complication, as well as a stricture of the large bowel and multiple infections from my pancreas and perforated bowel.

I was on life support and spent 6 months in the hospital, as well as several months in rehab to be able to learn to feed myself and walk again, etc. They only gave me about a 10 percent chance of survival, so I guess you could say I am a living miracle thanks to God's mercy and grace.

I was supposed to have surgery to repair the fistula and resect the bowel to remove the stricture in November of last year, but I became ill again and was hospitalized the day my surgery was to take place.

Due to my nutritional status from being ill, my doctor said she would not even talk to me about surgery for 6 months. I go in two weeks to see my surgeon to discuss possible surgery to repair the EF and the bowel so that I can eventually get my ileostomy reversed. I have been a little apprehensive about this, largely in part because of what I have read and all that I have been through.

Thank you for sharing your story. It does give hope to those of us who are facing additional surgeries. I am glad to hear you are doing so well with your reversal. I will keep you in my prayers.

Thank you, God, from whom all blessings flow!

God bless.

Hi White Rose... Well, I also had to learn to walk... I had sepsis... and numerous other problems and infections. The surgeon said I came as close to death as you can come without dying.
They charted and told my family eleven times that I was not going to make it.

After the coma, I was told three months to reversal but because of lung damage, kidney damage, and bacterial infections, it kept getting put off.
I had read it is better to do it within a year of the first operation... With all the problems I was having and everything I read, I was pretty much ready to give up the idea because I felt that at least I was alive..
I ended up going for a pile of lung function tests and they felt I could make it through the surgery... Now after surgery, I did have lung problems and needed mask treatments every six hours for the week I was in the hospital.

But as far as everything else I read about running to the washroom thirty times and diarrhea and no control... None of these have been issues...

Please keep in touch. I will be praying for you.... I would love to give you my email, but I am unsure if that is allowed on here.... I just want to share my story so others who might be scared like I was do not let what they read affect their decision.... In the end, I decided the worst that could happen is I could end up with a bag, and I had a good surgeon who knew all the problems I had the first time and was going to do everything possible to make sure I made it through surgery... So that and a lot of prayers, I went forward, and I am so glad I did...... I pray you come out as good as I have.... After all, it sounds like you have had enough bad luck with your health, and you deserve to have something good happen for a change.....

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Destinystar - I, too have had a successful reversal. I hit the year mark in Feb. and am doing well. I do have to take several medications to slow things down and bulk them up; but all in all, I will say that the procedure has been a success. I have no large bowel left as well. My prayers for your continued recovery.

Darla

That was a very inspiring message.

However, I am far too scared to have my reversal until I hear of a lot more success stories!

What do others awaiting a reversal think?

I am in Surrey, UK

I had years of 'tummy troubles' but never discussed them with my doctor. In Jan. of this year, I was rushed to the ER by ambulance and was in a coma and on a ventilator for 2 1/2 weeks. I had emergency exploratory surgery and was septic, etc. It seems like we all have such similar stories. After almost 3 months of hospital stays, I had a colectomy done with an ileostomy. My surgeon is willing to do the reversal at 3 months, but I am a little reluctant. My output is mostly liquid, and I want to make sure I have waited long enough to give my body a chance to compensate. I do know that taking Citracil does thicken my output, as well as when I eat regularly. I am not scared for the surgery, but I am just starting to feel better from the last one and am not wanting to go back there just yet. I have adjusted to the stoma but am hoping we are not lifelong friends. I will have a reversal, but I may wait longer than the 3 months.

Thanks so much for your inspiring story, Destinystar! I too was in a very bad way and had to have a second ileostomy because the first stopped working. I spent 6 months in the hospital, septic twice, and had to learn to walk again 3 times!!! I spent a few times in ICU because of heart rate issues due to the infections. I am also blessed to be here.
May I ask why you had to have the ileostomy in the first place? Irritable bowel or what?
My internist is pushing for my reversal too, but I am wanting to be ultra cautious after all that.
Lisbett

Thank you for telling us about your success! I want a reversal so badly, but was told by the Mayo Clinic that due to the long-term infection from acute diverticulitis which was diagnosed as an ovarian cyst and went untreated for 3 months; I now have no pelvic floor muscle left.

Should I be reversed, I would not be able to eliminate through my rectum and without an ostomy, I would be in crisis with no output ability. My last hope is to go to Mayo-Scottsdale where they have the only non-latex anorectal manometry machine within 500 miles of where I live. I'm supposed to attend re-training every 6 weeks for a week at a time for 18-24 months. I cannot afford this, financially or physically. My kidneys have lost 30% functioning since my surgery and I began taking high blood pressure meds today. I also have a low white blood cell count and have been referred to a hematologist.

So my dream of a reversal is slim to none with these other cascading complications, but I wanted to let you know how grateful I was to see someone get a reversal that worked. I stopped reading this site as often as I used to because the horror stories on reversal attempts scared me. However, this site has been a lifesaver to me over the past year, especially when it came to dealing with mechanical blockages BEFORE having to go to the ER. ER docs know nothing about blockages and almost killed me with their sloppy insertion of the NEG tube and inability to pass the blockage. All they could say was, "We need to do surgery, we need to do surgery. We'll do a 3 for 1 - repair the hernia, remove the scar tissue, and do a reversal."

Mayo told me it was a good thing I didn't allow them to take me into surgery as I would likely not have survived it. At the very least, I would have come out with no bag and no way to poop. But again, I am very happy for you and how you acknowledged prayer as your helpmate toward health. I pray everyday, too, and hope better news begins coming my way. Now, I also have low oxygen and last night, was sent for a sleep study. Oh my goodness, what a miserable night! I am so tired today, but can't sleep. Every time I lie down, I'm wide awake and jittery. I think it is the new BP med, and my doc warned me about this, but said to stay on it for a month. So I will. We are just trying to hold my numbers where they are now and not let them get any worse. Slip my name into some of your prayers...it's Loretta.

Loretta!    I have been thinking about you a lot lately!    Glad to see you but sorry to hear of your troubles.    I will definitely keep you in my thoughts and prayers as I have been.......you are a wonderful, special lady and don't you forget it!    Love and Prayers,    Darla

Thank you so much for all of your stories about reversal. I had my ileostomy in May of 2012 for a colon that just quit working and was at risk of rupturing. My surgeon told me that a reversal was possible but that he wanted to wait a full year before considering it.
I met with him last week and I am finally on the waiting list for a J Pouch. I am doing the happy dance. I will have to wait 6-12 months to get a surgical date but at least I have made the first step.
Thanks,
Michelle

Great to hear a positive story! I just scheduled the first surgery for a J pouch, and am really nervous!

I've had an ileostomy since Sept, 2011 due to a ruptured colon from UC. I spent five weeks of last summer in the hospital because of three different blockages. I have been so scared to schedule surgery, thinking something else will go wrong. At the least, I have to have the colon out because it still has the disease in it and is in relapse.

I have been torn between the J pouch and the BCIR procedure (I don't think I can stick a tube in myself four times a day) or just take the rectum out and leave well enough alone! I finally decided to go with the J pouch in July but am worried about all the negative stuff I have heard. So this is a nice change to hear successful stories!

Thank you so much for posting this.

I am so happy for you!!

JoAnn

I also had a successful reversal 16 months ago. My advice: listen to your doctor, get a second opinion if you are not comfortable with the first opinion, use a reputable surgeon, even if you have to wait, and go with your own gut feeling. No one can make this decision for you. And trust in God and the power of prayer. Don't rush it, give your mind and body plenty of time to heal before the next surgery. Beaner

Amen, Beaner.    Good to see you here again!    Darla

Thank you all for posting your successful reconnection stories. I too have a successful reconnection story. At age 48, my large colon went into system failure due to my RSD/CRPS. My large colon had to be removed. I was told it was 15 feet long and weighed 25 lbs by one of the residents involved in the surgery. She stated it was the largest thing she had ever seen, it was bigger than her leg. My life-saving 10-hour surgery ended prematurely as the colorectal surgeon felt I was not able to survive much more surgery. I ended up in ICU for 10 days. 5 months later, the surgery was completed once my body had a chance to heal somewhat and I was able to gain some strength back. So now I had an ill ostomy and full-body RSD/CRPS. I was in really bad shape. My doctor told me a reversal was not likely to ever occur. Well, this November thank G-D I went to see my surgeon. She was amazed. She could not believe that I was the same person. I started having a new treatment for my RSD/CRPS. We repeated all the necessary tests to attempt a reversal once again, and this time I passed with flying colors. April 8, I had my takedown completed. Yea! Yes, I'm having to go to the bathroom frequently. I've only had a very few accidents, but I'll take that any day over a bag! My question to others that have had reversals is your food intake. What type of foods can you eat? For me, I tolerate mild white fish, mashed spuds, yogurt, the best so far. I'm working on advancing my diet. I really need to build up my stamina. Most of the food I eat kind of goes right through me. Any ideas would be welcomed. Thanks, Barb.

What a beautiful request, Loretta. You always have our prayers and best wishes. You're in His hands. Do not be afraid....It's PB and the rest of us here.

Hey Barb!
I've had my reversal for a little over a year now, and I have found some little tricks to help with the food intake and diarrhea, etc.    First of all, the frequency, etc. will get better as time goes on.....the rectum will learn to hold more, and in my case I go about 4-8 times per day, now.    As for the types of food I can handle, it was a very short list at first, as yours is, but I can pretty much tolerate most foods now.....the exceptions being a lot of red meat like ground beef, stringy veggies like cauliflower and undercooked green beans, etc.    I can do most berries and fruits now which is great because I LOVE fruits like strawberries, raspberries, and blackberries....things that I COULD NOT EAT when I had the bag!    I still cannot do oranges or anything with big peels or skins.    I have recently been reintroduced to salads, green salads with mostly iceberg or butter lettuce, tomatoes chopped up, cheese, sprouts, etc. and am handling them well in small increments.    For me, I have to go easy on the greens as they do not digest well, but I love them!    I can also tolerate most fish, chicken, and binding foods like rice, bananas, peanut butter, etc.    One of the main things that will help you with both frequency AND bulk is FIBER.    Lots and lots of fiber!    I don't get enough in my normal diet, so I take about 8-10 Metamucil capsules daily (cannot stand the Metamucil liquid!) and they help tremendously with slowing down and bulking up!    I am especially mindful to take them with or just before the evening meal, as this helps with nighttime frequency and consistency!    I still have a few accidents, mainly at night, but I can count them on one hand since about the 6-month mark and they mainly occur if I am already sick and am either on antibiotics or have a stomach virus.    I tell ya, being compromised with a reversal and having a stomach bug added into the mix is NOT FUN!

The main advice I can give you on the types of foods to eat is to slowly introduce or reintroduce the things you love in small increments.    If it "sticks", then eat a little more the next time.    Watch out for the foods with a lot of grease, or fruits and veggies with tough skins or membranes.    Nuts have to be chewed and chewed and eaten in small increments, but they are good sources of fiber, too!

Hope this helps.
God Bless!
Darla

Thanks Darla, PB, and everyone else. Your prayers are working. One week on the BP med and my BP is just a hair below 120/80. I am feeling so much better. Knowing my kidneys are not taking multiple hits per day is such a relief. I am having a guest over for dinner tomorrow for the first time in over a year. I have been feeling so good that I overdid on the housework, etc., so I am going to call a cleaning service to finish the rest. My house is always tidy, but living here in the dusty Southwest, it needs frequent vacuuming and dusting. I still have problems pushing the vacuum and bending over at the waist with my hernia. Anyway, I just wanted to write and say thanks. Prayers are heard. God bless you all. Loretta

Has anyone noticed how many of us had to learn how to walk again after surgery? I was flabbergasted that I could not walk and seriously thought I may have had a stroke. Nope. Just couldn't walk and spent 2 weeks with physiotherapy to learn how to stand and walk again. And it hurt like hell.

I, too, have an ileostomy with no hope for reversal or so I have been told by my doctors. Your story makes me wonder at the possibility of it all. Maybe it's time to chat with my docs again.

Mike

You are most welcome, dear lady.    You are never far from my thoughts and prayers and I am so glad that you are feeling and doing better!    I know that we all have our ups and downs, but you have taken it particularly hard, health-wise, for the past several years....and it is high time for a change!    I know what you mean about overdoing it when you feel good, I went full speed on Saturday with thrift store shopping all day and then sitting at a 3-hour dance recital for my niece on a wooden seat with no cushion....I was flat on my back all day Sunday and could barely move!    I am just now getting around better after that day of outings.....but it was well worth it to see my niece dance and twirl for her last year!    Hope your dinner is both fun and healing....we'll be thinking of you!     Love and Prayers,    Darla

Hi all, I know this thread hasn't been used in a long while but I just had to write to say thank you. I had my ileostomy reversal operation yesterday and while I know I've still a way to go in terms of recovery, this thread really calmed my nerves before having the op. There are so many horror stories I was beginning to doubt whether the procedure would be worth it... I google searched "positive ileostomy reversal" in the hope I could find a little ray of hope and came across this feed which to me felt like a godsend. And now I can contribute and for myself, the procedure itself was nowhere near as traumatizing as having the ileostomy surgery in the first place (Crohn's flare-up, perforation, and septicemia in March 2017). Yes, there's pain and yes, I'm bloated and sore. But 24 hours later I'm eating and drinking relatively normally (still being sensible and going for smaller portions more often and including protein etc to aid healing). I've got no cannula, lines, tubes, or invasive medical equipment and I'm walking about trying to encourage my large bowel to work again. My wound is smaller than they had anticipated so they have said I don't need packing, just a dressing to cover it up, and my nurses made sure anyway that I was topped up with pain relief so it didn't hurt when they removed the packing from the surgery, so it really wasn't bad. I know I still have a journey getting to my new normal in terms of my bowel habits, but I am so relieved I went ahead with the surgery. Hopefully, my post will help others as much as yours helped mine. Thank you all so so much!

I'm so glad to read this! If you don't mind me asking, where did you have your surgery done and which surgeon performed it?

This shocked me as well. I went from working 12-hour shifts on my feet and hitting the gym afterward... to learning how to walk with a walker and having next to no muscle or exercise tolerance.

Hi Jennifer

How are things going now with your reversal?

I had the first stage of my reversal surgery 6 weeks ago in Manchester, UK, and it went fine. I am now awaiting the final takedown stage in around 3 months.

I agree, these positive posts have been a lifesaver for me during my darkest times and have helped me with my decisions. Thank you to everyone who has contributed over the years!

Take care, Jenni

I had my colostomy turned into an ileostomy and also could not walk. What is this about? On May 4th, I will be going in for a takedown, and I'm so afraid it will happen again.

I just had my takedown 2 weeks ago and I'm not trying to scare you, and it is different with everyone. I stayed in the hospital 2 weeks. I had an infection in my poop, diarrhea would not stop, it was raw, very little sleep, a lot of crying. I was a mess and questioned myself if it was worth it. Here at home, I still have the infection but with more antibiotics, I can see there is light. I don't know when things will get better, I continue to pray and thank God for each day. I so hope things go great for you, and I will pray for you. Remember, this is just one story out of many good ones. Best wishes

Yes, I agree Skylar - everyone is different.

I finally had my takedown surgery 4 weeks ago in the UK. It went great. Things are going much better than expected. My surgeon warned that the first month or so would be "horrendous" but that things would improve - however, it's been nowhere near that. It is a million times better (in terms of frequency, etc.) than having an ileostomy.

I probably go twice per night and 6-8 times per day, but it's still early days. I'm experimenting with the dosage of Metamucil and loperamide as recommended. I can already eat sweet corn, nuts, salad, etc. - everything I couldn't with a bag.

My