Successful Long-Term Ileostomy Reversal Stories Needed

Hi, my name is Julie. I had emergency surgery on September 14. I had C. diff. I believe I also had E. coli as well, and I lost my colon except for maybe a little piece at the rectum. My small colon is still there, and they didn't touch my rectum. I was very sick with other things, and they say I needed a year to be strong enough to get the reversal. I was born with a physical disability and use a wheelchair. I'm almost 42. If I had a colostomy, I don't think the bag would be so difficult because I guess it wouldn't be so liquid, but with an ileostomy, it's difficult, and I have high output and a lot of liquid. I've been doing a lot of reading, and I see that some post when they are going to get a reversal and maybe they post when they are just out of the reversal and maybe a month down the line or a year down the line, but I want to know about successful stories for many years of people who have had the reversal. Particularly for ileostomy, I haven't seen a lot of those. They said I did well in rehab, but rehab was very scary for me as I lost a lot of ability even just to sit up, and I don't want to go through that again, but I also don't want to keep this bag if I don't have to. At the same time, I am afraid of incontinence, and the doctors are acting like I'll just go six times a day to eight times a day and not worry about anything. They're acting like I can eat anything I want. I didn't even understand that I had an ileostomy and not a colostomy until well after my surgery because nobody really explained anything to me, and I feel like the surgeons are trying to gloss over what could go wrong with the operation, and I just want some kind of honest conversation so that I know what I'm supposed to expect. I know the first year is going to be hard, but what about after? And yes, I know everybody is different, but just please share your experiences so that I can get a better grounding of understanding on what may come next for me. I'm also considering the carnivore diet because I heard that for people with a small colon and no large one, that is best, but it seems wild to me not to have any vegetables. That said, every time I try to have some, my bag gets filled with air except potatoes don't really seem to bother me, but I wonder about the long-term impact of a diet without a lot of vegetables. Sorry if this post seems a bit all over the place, but I'm still trying to cope with everything, and I have so many questions. I've been on this forum pretty much since the first few weeks after surgery, and I'm very grateful for all that I have read.

I feel as though I have been where you are now, but for me, it was 3 years ago. So many difficult decisions, but you are on the right track. I so wanted a reversal at first. I have written a lot about my ileostomy journey, but I will condense it in hopes it'll help you at this point in your journey. First and foremost, stay connected to this site - it has saved me from so much grief. Get as educated as you can by reading about others and making sure you understand your own situation. Doctors, surgeons, etc., always seem to sugarcoat recommendations they suggest. They do not have to live with the decisions we make. You must make an educated decision for yourself. You are just a newbie at this point - take some time to heal first. This is the best thing you can do for yourself. Although I was told I could have a reversal in 6 months, that never happened for several different reasons, and it was my decision to not go through with this surgery. You are young and will be amazed at how your opinion will change over time. The healthier you become and the more you learn, the easier the decision will become. Take this time to heal - 3 months is way too soon to worry about making a lifelong choice right now. Best wishes and get strong, then move forward. Hugs, jb

After re-reading this, I need to advise you my surgeon initially said I could be reversed in 4-6 weeks. We were staying in a cottage in Wisconsin on vacation, so there was no way I could stick around for 4-6 weeks - winter was almost upon us, and there was no heat at the cottage. We then returned to our home in Florida, where my next surgeon said I could be reversed in 6 months - oh, that dangling carrot kept me on the run for a very long time…

Hello J

What Justbreath said, and for the record, I have an ileo, and I eat anything I like and vegetables daily with no issues. I went to a J-pouch, which was a disaster, then back to the ileo.

Hi Julie, I can understand your frustration with the ileo, but like others said, you're early on in recovery and an ileo takes time to settle down. Have you tried using foods to slow down the output, like applesauce, peanut butter, and those kinds of foods to thicken the output? I also use Imodium a couple of times a day to help me; otherwise, I would be emptying 6-8 times a day. Before you had surgery, how hard was it for you to use the bathroom, being that you use a wheelchair? Imagine having to do that 6-7 times a day. Good luck with your decision.

G-Day JVM261, You said you had your colon removed so you cannot have a colostomy, only an ileostomy. I had a J-pouch for 18 years and had 18 years of problems. So I went for a full-on ileostomy and a Ken butt, and it's the best thing I have ever done. Think twice about reversal. Regards, IGGIE

Hi, I had an ileostomy in June and found the output really high for the first 4 months. Now it has settled down significantly and is more directly related to what I eat.

I also had a specialist say they could just connect my small intestine to my rectum. He didn't listen to my whole history as I have significant damage to the sphincter, so I would just be incontinent if they did that. But he was very upfront with the fact that this would mean 'only 10-15 trips to the bathroom' every day (assuming I didn't have the damage), which is much higher than things are currently with the ileostomy and would be back to sudden urgency, etc. again. To me, this would be significant steps backward in quality of life, and my world would yet again revolve around how close to a bathroom I could stay and reduce my quality of life.

Everyone's situation is different, but a bag is not as bad as many might think before they have one. Just get all the information and give yourself time to adjust. I had pain, incontinence, and severe colonic inertia for 12 years, so I had a lot of time to mentally adjust before the surgery and was relieved when they finally did it.

Your surgery is pretty fresh, and your body will adjust. Make sure you get the straight answers before looking at a reversal. With the information I got in my case, having it reversed would make things far more unmanageable than having a bag that I have control over when I empty, etc.

I really appreciate everybody's comments. I'm glad to know that this is going to slow down because I can't imagine having to continue emptying the bag so much. I can walk a little bit. I have cerebral palsy.
I've always been able to take myself to the bathroom and had no problems with incontinence. Sometimes with a UTI, I would have a little leakage on the front side. But certainly not like what I'm dealing with now. It's just wild because I was having cramps, but it was nothing that I couldn't deal with, and I was having some other issues, but again I was being followed by medical people, and I had been checked for C. diff months before and nothing, and then I thought it was food poisoning, but I was able to still go to the museum. I thought it was lactose intolerance at one point. I went grocery shopping the day before for non-dairy yogurt. I wasn't really having diarrhea like you're supposed to have at all. I had a tiny little squirt before I left the apartment. And then I was watching some movies, and I fell asleep, and at 4 o'clock in the morning, I woke up screaming, and I went to the ER a few hours later, and after two or three days in the ER, they told me I needed my colon removed, and I thought it was just gonna be a little bit because when they woke me up, I was feeling great. I must've been given some great painkillers because I thought everybody was overreacting. I thought the emergency surgery wasn't gonna be a big deal, and I woke up with so many machines you can't imagine. And then for a long time, I didn't understand that they removed so much that I only have a little bit by the stump. It's shocking still. It's been helpful to be on here, and I guess one would think that because I'm in a wheelchair already that maybe this would be easier, but I had no problems with my bowels before, and I just want to get back to what it was before. I'm tired of this already, and I know it's only been a few months, but I just want to get back to life. I think for a lot of other people here, maybe it was a relief because if you have Crohn's or something like that, or you have cancer or something like that, it's a little different because you're looking for a way out of the pain. And not that I'm saying that those experiences are not valid, but for me, it was sudden. And not only that, I'm grieving the loss of chocolate. I'm grieving the loss of food that I loved. The vegan protein powder is not giving me the feeling of chocolate that I love. I miss garlic, and I miss onions, and I miss raw vegetables. I just want to get back to my life before this. I don't like the tape; it hurts my skin when I take it off, and I do use adhesive remover, and I use the barrier stuff, but I don't like it. My insurance doesn't want to pay for the bags with the Velcro closures, and that's gonna be a fight, but I have to have those because my dexterity sucks. I just don't want to depend on them, you know, but I'm afraid to have liquid diarrhea constantly with the reversal. There is a guy on here, I forget his name, but he wrote about a direct connection procedure recently. Mine will be a direct connection, and they are acting like because they didn't touch my anus, it'll be OK, but again I feel like they didn't tell me about this acid burning stuff. They didn't tell me about so much that I cannot eat. And I do feel like they are glossing over things, and I do have to keep reading. But I feel like if I don't take the chance to remove the bag, then I'm never gonna know if it was possible, and I know that there's always a chance to go back to the bag permanently, but I just have to see for myself if I can handle the reversal. But I know it's gonna be hell for the first few months, or at least that's what it seems like. I was thinking of getting one of those inflatable pools or something for the apartment, and maybe I will be sleeping in there lol. I've also been looking at bidets, but I know I'm like so new to this because everything just happened in September, but all I can think about is reversal. I'm going to have to wait a year to get better because I was very sick. I'm not at peace with this, and I don't know if I'll be able to make peace with it. And I envy all the people that have. I'm just not there. I wish I was.

Me again (jb) and I can so relate to everything you have explained about the way you currently feel and the shock of what you went through back in September. My emergency surgery and total change of life, as I knew it, was also in September (2020) and for the next several months I lived in despair while smiling and joking with family and friends, but truly felt very alone. No one can understand until they have been through it, least of all surgeons. Although, I must say the surgeon who performed my initial ileostomy seemed to be a wonderful and caring man and would actually hold my hand when it was over. Frankly, I do not remember one word he said that night except “ostomy” - how well I remember that dreaded word! Mentally I still totally rejected the whole catastrophe and was an unenthusiastic patient throughout my hospital stay. Didn't matter, surgery happened anyway and afterward a promise of reversal in the near future - within weeks, I was told. Never mind they forgot to tell me what was required that I must do before actual reversal could be done. Ultimately all those requirements moved the actual reversal out to one year. What a difference a year makes. This promise was only a temporary reprieve for the life of hell that resided in my head. All I can say at this point, I am still amazed at myself for the change of heart and mind and the metamorphosis I have gone through since 2020.

Again, I would say to you - take your time and heal before you make any decision. Everything is so new to you right now.

I too love chocolate and frequently indulge - although sugar is evil :( for me. As for other foods, I am fortunate I can eat anything. I do avoid lettuce although I can eat it, hate the green confetti that clings to my bag as a result and the kind of lettuce I like has no nutritional value for me. And as everyone cautions - chew, chew, chewing is key! I decided early on I was not going to give up things I love and this website helped me with that decision, as well as things like a full-on naked shower - you cannot even begin to imagine the Saran Wrap I went through wrapping my belly bag before finding this site - looking back I should have invested in S.C. Johnson & Son, Inc. stock!

I will be following your progress, so please keep us posted as you move forward, wishing for you the very best and peace of mind as you make decisions. jb

I'm only a year in and I don't have a J-pouch, I have an ileorectal anastomosis (direct connect). But if I can answer any specific questions, please let me know. Are you able to move quickly from the wheelchair if you have the sudden urge to have a bowel movement?

I'm having a big depression; that's why I haven't really responded. I have started thinking maybe the reversal isn't a good idea, and I've put in an email and a call to the surgical team to talk about it more. For me, the reality is that maybe I might end up back in a nursing home that I was in for rehabilitation, and that was horrible. If uncontrollable liquid 💩 happened, it would've been a more horrible situation without a bag. Maybe for wheelchair users, the bag is better, but it is all-encompassing. I seem to empty it, and it just gets full again. Maybe I am averaging 10 times a day, and I know about the medicine to slow it down, but I don't want to cause a blockage, if that is even possible? I'm just really sad because, like I said, I didn't have any problems with my bowels before. I really didn't, and I just can't believe this is where I am now. It just feels unfair. I would like to talk to people who had the direct connection with the small bowel to the anus. But I think I just need to be sad for some time and kind of mourn this loss…for me, it's a big loss. I understand there were spores on my last large bowel. I understand that the surgery saved my life, but my quality of life now sucks. I'm sorry I can't be more positive about this, but I don't see any kind of solution here. I don't like this. All the stories of the negative reconnections are horrible. The idea that I might have to go through two years of hell before getting to some kind of normal level of bowel movement is bad for me. If I need antibiotics, I think it's just gonna be liquid. I've had to take antibiotics since the surgery, and it just makes the output so bad. I don't know if I can do it. I don't have a lot of support system. I remember in college I did have an accident, pee not poop, where I didn't make it to the toilet in time, and because I have cerebral palsy, I slipped. I was near the toilet; I just didn't make it. There was a metal box in the bathroom holding sanitary napkins for those people who use them, and my head hit the corner, and I had to get staples in my head because my head opened up a big gash. I keep thinking about that situation now, and what if something like that happens if I don't have control? It's a lot of extra things I have to think about that I don't like thinking about. It's just very overwhelming for me right now. I also feel like I'm not eating so much, and I'm sticking to low fiber, and what's coming out is a lot more than what is going in. Maybe I eat too much peanut butter sometimes, but still, sometimes I don't eat that much, and it's still like it never ends. It's like this never-ending streaming liquid 💩. And I'm not used to that. I was going once a day before, maybe twice, with no real issues. I want to say that I was given Clindamycin for an ingrown toenail. It's an antibiotic, and maybe my health wasn't good beforehand, but that pushed it over the edge. I didn't understand that it could cause so much gut problems and the C. diff. I do my research, but I just didn't want that antibiotic, and I do believe it caused everything in my health to tip over, and that's why I lost my bowel. So I recommend people stay away from that one antibiotic; that's my recommendation for whatever it's worth. If it was that hard on my large bowel, I can't imagine what it would do to the small one. I'm lucky I still have my small one.

I am not quite sure what you are saying regarding low fiber? I guess you are referring to low fiber foods? After 3+ years (ileostomy) I have recently started (2 days ago) a powder fiber in my morning smoothie - it has in fact resulted in a more solid output. A surgeon had originally recommended this to me a couple of years ago. I think I took it at first but then, as I tend to do, I drop “dealer add-ons” also known as prescriptions and non-prescription stuff.
I always thought fiber was strictly for those who were constipated, as in a laxative, and this did not compute (in my brain). Why would I take a laxative (Metamucil or psyllium fiber) if I already had liquid output - aren't laxatives to loosen shizzz? Reading about many on here with ileostomies who take fiber, I decided to try it and WOW V-I-O-L-A (French word for “there you go”) already the fiber has started to solidify my output.
I do see you have been through so much and you are obviously a very strong person. I can and do understand your current attitude - but please, let time, fact-finding, and ostomate comments help you ease your unrest and move forward through the current angst you are going through. In due time, I believe, decisions will become easier and less daunting for you.….jb

I am reposting this comment as I want to be sure you get this message as it doesn't appear to have been posted. I am now 7 days into taking 2 teaspoons of psyllium fiber in my morning smoothie. I cannot even begin to tell you how much it has changed everything. Let me reiterate I have a loop ileostomy - 3-1/2 years now (also referred to as temporary because reversal is possible). My output has always been liquid. I recently became seriously dehydrated, which everyone warns about. After 7 days on fiber, I can tell you the output has turned to the consistency of oatmeal, as my surgeon suggested it should be. I am starting to believe there is a great amount of confusion regarding the importance of fiber, especially for ileostomates. Two teaspoons of fiber a day! That simple change has totally changed everything for me. jb

Message
Dec 22, 2023 6:56 pm
Reply to JVM261
I am not quite sure what you are saying regarding low fiber? I guess you are referring to low fiber foods? After 3+ years (ileostomy), I have recently started (2 days ago) a powdered fiber in my morning smoothie. It has, in fact, resulted in a more solid output. A surgeon had originally recommended this to me a couple of years ago. I think I took it at first, but then, as I tend to do, I dropped “dealer add-ons,” also known as prescriptions and non-prescription stuff. I always thought fiber was strictly for those who were constipated, as in a laxative, and this did not compute (in my brain). Why would I take a laxative (Metamucil or psyllium fiber) if I already had liquid output? Aren't laxatives to loosen shizzz? Reading about many on here with ileostomies who take fiber, I decided to try it and WOW V-I-O-L-A (French word for “there you go”), already the fiber has started to solidify my output. I do see you have been through so much, and you are obviously a very strong person. I can and do understand your current attitude, but please, let time, fact-finding, and ostomate comments help you ease your unrest and move forward through the current angst you are going through. In due time, I believe, decisions will become easier and less daunting for you.….jb

Hi JB

Yes, there can be much confusion regarding that word "fibre." I too took psyllium husk powder, and it certainly gums up the works. Cheap too.

I had an ileostomy reversal 5 years ago and am a lucky success story. After surgery, I was going 12-15 times per day, then things "settled down" after about 3 months. Now I go 5-6 times per day, sometimes more depending on how much I eat. I won't eat anything if I'm going somewhere for any length of time.

 

 

  

Sorry, just breathe that I'm answering you now. I didn't see everything you wrote until today. I think somebody asked what I meant by the fiber. I'm trying to eat low-fiber foods because that's what I was told is best. I have been doing peanut butter, and it does thicken it some. It's certainly thicker than when I have black tea, which I rarely have, which makes everything really watery. But even the peanut butter doesn't seem to thicken it up much, and I eat too much sometimes, and it doesn't help a lot. I haven't taken the husk powder, but I will look into it. I'm trying to get used to this, but it's a lot to cope with because I never considered myself having any bowel problems before this, except for the lower left abdominal pain. Even with the bacterial infection, I didn't really get diarrhea. I just feel a lot of shame I'm going through. What could I have done better? What if the doctors did this? What if the doctors did that? I'm not coping very well, and on top of that, the fear of the reversal is a lot to take in. I think I'm making my friends angry at me because I am struggling, and they don't want to hear it. I'm also wanting to reach out more to people on here, but I am a mess, and I don't want to make a bad first impression. I'm trying to get better, but I'm really struggling. I'm in counseling, but it's not helping much. The counselor said she thinks I have to go through with the reversal because if not, then I'm never going to know. It's better to know than not to know what will happen, but I can't imagine waking up in the poop or going 20 times a day or the burning. Even if it's just three months, it's a lot, and it's overwhelming. I'm still trying to take things day by day. The thickness doesn't bother me as much as the amount of output. It's like I'm not eating much and barely eating anything, and I'm averaging 10 to 12 times a day emptying the bag. It just feels demoralizing every time. I will say that I do the black tea because I noticed that it cleans out the bag really well, but it makes things thinner, so it's a double-edged sword. I'm still trying to come to grips with everything, and I really appreciate everybody here.

Can I ask you, like, what is your typical day eating? Can you take me through a breakfast, lunch, and dinner on an average day?

After reading your concerns, I feel as though I completely understand your need to find answers, having been through very similar trauma/experiences myself. This site and the important information shared here can and will help you along, but it takes time for you to mentally adjust to your current situation. You must make your own decision in the end, and no one else can do that for you, so you need to feel confident in what you will learn for yourself.

I still lean toward advising you to seriously consider the following 2 points.

1. Do not be in a hurry to fix things - it is too early. Take a deep breath and first get well - both physically and mentally regarding this life-changing experience you are going through. This will happen, although you may not think so right now. Your rush to make important decisions may be more harmful than helpful.

2. Research the need for fiber/fiber or your stoma may continue to “wash out” things that might be needed to get you healthy. Thickened output (for me) has reduced the number of times I needed to empty. I am still unsure why you avoid fiber. I definitely didn't realize the importance of this, forgetting the advice of my surgeon early on. Coffee and tea are diuretics and can cause dehydration - an issue I have recently experienced and was frequently discussed on this site, and I did not heed its importance. jb

I am new to this site and can relate to each and every one of you. I went into septic shock in April 2023. I just want to share a few tricks I have learned since dealing with the bags. I am 90 lbs. right now; my normal weight was 110. I am a petite lady of a “young 82” years of age. I decided not to do the reversal; I know where the poo is going with a bag. I have the 2-piece Hollister bag. Since I am so tiny, any amount of poo weighs me down. I decided to figure out how to irrigate my bag. I use Summer's Eve douche filled with water! Rinse it out from the bottom and don't let it get to the stoma part. I then take a wet wipe and clean the top well. I also take my used bags and soak them in warm soapy water with a capful of bleach. Soak overnight, hang to dry, and they are as good as new. I keep those by my toilet, and when the bag is a mess from too much liquid output, I toss and grab a clean bag. I have been through the leaks and air, and it has slowed down lately from learning what works for me. Benefiber, as well as cheese, will help thicken the output. I clean and rinse the Summer's Eve bottles and keep them by “my station” by the toilet. Glad I joined this site, and now my goal is to gain my weight back!

Hello. I just had my ileostomy reversal and I am still recovering in the hospital. I am 45 years old. I am happy to read that there are people with successful ileostomy reversals. Did anything else help you? For example, any supplements, Imodium tablets, or anything else?

Julie, did I miss the memo on no chocolate without a colon? A chocolate peanut butter shake is one of my favorite high-calorie snacks... I'm not talking a protein shake either. I'm talking the one with the most calories out of all the shakes on the menu. I was really craving garlic the other week, just garlic... I got something that was heavy on the garlic. I came home from my reversal surgery on the "get her to eat anything diet" (aversion to food after 14 years of getting sick when I tried to eat). The fresh veggies I do miss... I remember when I was younger and my mom made me eat vegetables, and I swore if I had kids I would never ever make them eat vegetables. Ha ha ha. My kids have a running joke over me trying to get them to eat carrots over the weekend and how I tried to work it into everything. My 13 y/o is convinced the baby carrots are chemically made carrots and not good like the ones that come out of the ground... he wouldn't believe me that all carrots grow in the dirt. I'm told this is normal for his age... but... I think he's going to have a carrot growing project added to his chore list this spring.