You haven't said why you had the initial surgery? 

If I were you then I would request the colonoscopy first so that you can find out what's causing the bleeding and the discomfort and then give yourself time to make the decision as to whether you want the reversal. It's major surgery, you shouldn't feel rushed into having it. 

With regard to researching reversal surgery on the internet, it is important that you compare like with like, otherwise you will scare yourself reading stories that aren't relevant to you. As you still have the majority of your rectum and colon then theoretically you should have a relatively easy reversal, but you need to find out whether you have an underlying medical condition which may affect it. 

With regard to the problems that you had with your initial surgery, remember that that was emergency surgery, the reversal will be planned surgery so so much easier

The Hartmann procedure was done in response to rupture in the colon due to diverticulitis. They removed approx 6" of colon. 

I realize that the internet is terrible. I have limited my research to medical data really, and there has been a significant increase of success in the area in recent years. I try not to put too much weight on the negative experience posts but still take note.

As for problems with the first surgery, some was due to my weight, which is still significant in spite of having lost a decent amount since then. The other issues are the problems I had with the epidural, and the most terrifying - coming to in the middle of the surgery. With the last two, I think I'm fairly justified in my fears. 

I am still interested in hearing from those that have undergone this procedure or know someone that has. I would like to get personal opinions and experiences whether your own or those you know of. Thanks for your responses!

I too came around during one of my surgeries, for ages I didn't tell anyone as I thought that no one would believe me. I've since spoken to an anaesthetist and understand more about how it can happen. For me it was because I was so ill at the time and apparently the anaesthetists can be wary about the dangers of the anaesthetic for someone with damaged lungs hence they tried to give me the minimum amount needed. When I went in to hospital for my final surgery, they properly knocked me out, I didn't have any problems, I slept all the way through. This is something you can talk to your anaesthetist about (I did), similarly you don't need to have an epidural if you don't want to.

i have spoken to quite a few people who have had reversals post diverticulitis and they tend to be the easiest reversals as they still have their rectum and the majority of their colon. Some people even say that they have better bowel movements post reversal than they've had for years. Obviously nothing is guaranteed with any surgery. Just be prepared for the colon to be grumpy for the first few weeks post reversal as it hates being handled, and try not to use an Imodium as you don't want to end up constipated, just give the colon time to settle down naturally.

There is a FB reversal group called Ileostomy/Colostomy Reversal Support. Please be aware that the majority of people who post there either have had the whole of their colon removed or rectum removed and are struggling for reasons which won't affect you. So don't be put off by their posts

Sarah, thank you so much for your responses. I am encouraged that you know folks who have done well with the reversal surgery. I am a big baby when it comes to health issues and everything pretty much terrifies me. I have a fair amount of pain in my lower abdomen, and am currently experiencing a bit of a flare in that pain. I want answers... or at least to rule out what could be causing it so I am trying to get my scope scheduled.

I am suspicious of the integrity of the remaining bowel. They tried to close the ruptured part of my colon (surgery #2) but the overstitch closure failed, and they ended up having to do the colostomy. About a month to six weeks after my ostomy surgery, I ended up passing a surgical staple... talk about shocking! Anyway, I've always felt like things weren't right.

Now with this increase in pain I am starting to get very concerned. Granted it could be something totally different, but the scope should tell us if the remaining colon is viable. If it is, and they think it looks great, I will strongly consider the surgery. Then again, if it is I will still be left without an answer for the pain I am experiencing.

So, right now, I am one very frightened and hurting gal.

I definitely think that it is worth having the colonoscopy first to see if there are any indications as to what is causing your symptoms, and then taking your time in making that decision whether to have the reversal. The reversal can be delayed for years with no problems.  There could be many reasons for your symptoms, many people for example suffer from adhesions which can restrict the bowel and cause pain. Diverticulitis normally only occurs in the sigmoid colon, once that is removed most people become problem free. You could be one of those unlucky people who suffers from diverticulitis throughout your colon. At this point we are just guessing, it could just be diet or stress related 

Please don't feel pressurised into making a decision, your surgeon can wait x

I am looking for feedback on people who have successfully had a reversed loop ilieostomy who had all of their large bowel removed and a portion of their rectum also removed. I have had bowed cancer three times over the last 25 years and the last surgery was ten months ago when the surgeon took the remainder of my large bowel and gave me Eli (my name for my stoma). At the time of surgery my surgeon indicated it could be reversed and has recently changed her position on the surgery and does not recommend that I have it. I have read so many "horror" stories on reversal and the very traumatic results of it. I would like to know if anyone has successfully undergone the surgery with positive effects.

To be honest Navey, that isn't an easy reversal. The colon is where the majority of water is removed from the stool and therefore the stool will be loose. The rectum is where stool is stored before pooing so with less of that you won't be able to store the stool for as long requiring more poos. It is do-able but you will need to take medication and supplements to slow everything down to try so that more water can be absorbed. You will still have multiple bowel movements each day. It may be 20 but with the right combination of medication and supplements it could be as few as 3. Sorry I don't want to sound negative, I just want you to appreciate that it won't be easy.

My personal opinion is that it depends on how you are getting on with having an ileostomy. If you don't have any problems with it then I would recommend keeping it, if you have a problematic stoma then maybe try the reversal.

Is there a reason why you haven't been given the option of a JPouch?

Hi Sarah:

Thanks for the explanation, I was not sure of the effect of not having my colon and a partial rectum. I take eight immodium daily and still cannot get a consistency in my poo. I have decided to adopt the philosophy it is what it is and stop worrying about its consistency of it.

My surgeon never mentioned a jpouch and does not recommend I have a reversal done as I was having a problem with burning of my skin around my stoma and she said how would you deal with that if it is where you can't see it or attend to it easily. I then resigned myself to the fact of not having a reversal.  I am coping well with my stoma but just get discouraged at times knowing this is a lifetime challenge.

You appear to be very knowledgeable on the subject, do you have a medical background? You also appear to be a night owl as your post was received at 2:56 a.m. Hope you got some sleep.

Thanks again for talking to me.

Hi Navey. I've had a reversal myself and was shocked by the lack of reliable unbiased information out there. It seems to be either stoma groups against reversals or reversal groups against stomas and nothing in between. My stoma never bothered me, I probably would have kept it apart from I needed abdominal wall reconstruction surgery and the best chance of that succeeding was to have the stoma reversed.

I did a lot of research before my reversal surgery and picked up bits of information here and there. I enjoy passing that knowledge on 😎 I have got some medical knowledge but definitely not medically trained.

As you are already taking 8 Imodium daily, you will probably need to continue taking that if you had a reversal. The supplement psyllium husk is great for helping with consistency, you take it in water before a meal, it helps thicken up loose stool, the stool would never be solid again though. Butt burn can be a problem as your surgeon said, it wouldn't be as bad as on your tummy as you would clean it away quicker, but if you are having a few poos a day then you would probably need a barrier cream. 

I'm in the UK, hence me posting at different times. It's 16.17 at the moment here

Hi Sarah:

How do you find the reversal? As you mentioned there are a lot of reversal stories out there that are rather horrific in what people have gone through after the reversal. I personally have only read of one great outcome with quick recovery of the bowel function and no incontence within a matter of a few weeks, makes me joyous to hear someone has returned to normal bowel habits.

I was taking benefibre before my meals, trialed that for the whole bottle, and found that it did not make one iota of difference in my output. Lately I have been introducing more fibre into my diet and believe it or not, high fibre breads as well, and am finding it is bulking up my output. I pretty well eat everything including salads (which does exit fairly quickly) but I don't really care because I love veggies and fruit and as my surgeon last said to me "enjoy yourself" have that glass of wine with dinner if you want it. AND I AM, mind you it's not a daily occurrence but it's nice to imbibe when I feel like it.

It's wonderful to be able to chat with someone who has experienced both the stoma and the reversal and I look forward to hearing more from you if you care to share.

 🇨🇦

Hi Navey

i'm always happy to share my experiences, but what you need to remember is that everyone is different depending on how much small intestine, colon and rectum that they have left and why they had their surgery. 

My ileostomy was due to hospital negligence so what's left of my bowel is healthy. I had my caecum, ileocaecal valve and sigmoid colon removed. I actually suffer from constipation which I didn't expect, theoretically based on what I had removed I should have loose stool. I think it's because the good bacteria in the bowel is migrating to where it shouldn't be because I had the ileocaecal valve removed and that is stopping the colon from working properly. That's my story in brief 

I was the same as you with my ileostomy that I found that the more fibre that I ate the thicker the output. I could eat everything too, the only think that I couldn't digest was cooked carrots, but my ileostomy would just spit those out without any problems. I don't use the psyllium husk myself as I eat loads of fibre naturally

Hi Navey

i'm always happy to share my experiences, but what you need to remember is that everyone is different depending on how much small intestine, colon and rectum that they have left and why they had their surgery. 

My ileostomy was due to hospital negligence so what's left of my bowel is healthy. I had my caecum, ileocaecal valve and sigmoid colon removed. I actually suffer from constipation which I didn't expect, theoretically based on what I had removed I should have loose stool. I think it's because the good bacteria in the bowel is migrating to where it shouldn't be because I had the ileocaecal valve removed and that is stopping the colon from working properly. That's my story in brief 

I was the same as you with my ileostomy that I found that the more fibre that I ate the thicker the output. I could eat everything too, the only think that I couldn't digest was cooked carrots, but my ileostomy would just spit those out without any problems. I don't use the psyllium husk myself as I eat loads of fibre naturally

Hi Sarah:

You are absolutely correct, no two people have the same set of circumstances that leads to their ostomy and that is why it is so difficult to find consistent information on reversals. 

After my second colorectal surgery I was told the same as you that I would probably have diarrhea and, the same as you, I ended up constipated and had to take laxatives in the morning and evening. My surgeon couldn't believe it but saw my list of Meds and that it was the same for years leading up to my third and final surgery which was the ilieostomy. You just never know how your body will react.