My Stoma Reversal & Why It Failed

So the time has come, your surgeon has mentioned that they feel that your are ready for reversal surgery and put your plumbing back together. 

The thing is that most people after reversal surgery don’t stay in stoma groups, and whether it’s a good or bad experience you typically won’t get the advice you’re looking for or the answers to many questions that you may have going around in your head.

For me having my reversal in 2012 was a “must” for me. My mental health was at an all time low and at the time I was willing to sell my soul to the devil to get the much needed abdominal reconstruction and the reversal was an added bonus. It had been the topic of discussion for many years and I was finally well enough to get through that surgery at the time. 

My reversal

I had my reversal in January 2012; it was a MDT (Multi-Disciplinary Team) operation as it was carried out by plastics and the colorectal team. I woke up on intensive care again as I had been administered morphine for pain management and it stopped my breathing again, this was switched out for an epidural. I also had a NG tube as I had developed post op ileus and I spent 2 days on ITU and then moved down to HDU.

I had to walk with a zimmer frame as I couldn’t stand up straight due to the abdominal plasty and I spent 8 weeks in a rather fetching stomach brace. Once my bowels woke up I was moved down to the normal ward and I spent a total of two weeks in hospital. 

Having your bowels back together after two and a half years was a weird experience and I will admit the build up of wind once they started was painful. I also developed a post operation infection with the abdominal reconstruction and it opened up along my C-section scar. 

Life post reversal for me only lasted five months before I realised there was something quite not right. It took a change of hospital and another two years to work out what was causing my urgency and incontinence.  This isn’t to scare monger in any way, this is just what happened to me. 

What helped post reversal? 

Post reversal there are some things that you will need to follow. I will list those, alongside advice for helping with the bottom end until things get back to semi normal or semi formed. 

• A soft diet – they will advise to stick to low residue foods until the internal swelling goes down, soups, white bread and soft foods, this will also help to eliminate the risk of post op blockages.
• Buscopan – this will help with the cramps 
• Peppermint tea – this will help to ease the cramping & wind build up
• Sudocream – things will be a little loose shall we say and this will help to stop your bottom getting sore
• Infused toilet roll – you may be passing bowel movements more frequently & infused toilet roll or the moist toilet roll will help ease your bottom and reduce the risk of getting sore.

You may well be asking as to why I now have a permanent stoma, sadly for me due to the amount of bowel removed, I developed Bile acid malabsorption. 

This is part of the reason my reversal failed and part of the reason I now have my permanent ileostomy. I have noticed in the groups recently that BAM is being more frequently diagnosed and some are being diagnosed with it after stoma surgery. I find this slightly weird as BAM is incredibly difficult to diagnose and it involves a fair amount of testing to get that definitive diagnosis. 

So what is BAM?

BAM is short for bile acid malabsorption. For those of us who have had our ileum removed or have damage to the ileum, our stomach produces bile acids that help to break down what we eat, with an ileum this is typically absorbed back into the body and sent back to our liver to be produced again for our next meal. 

For those of us who have had a bowel resection, stoma formation or removal of our ileums. Our ileums effectively work as the braking system for our intestines; without this the bile acids aren’t reabsorbed into our blood streams and instead it comes out via the large bowel and into the toilet. 

BAM is typical in people who have ileal Crohn’s disease or have had their ileum removed. The ileum works as the brake system within our bowel, without this our bowels over produce bile acids, this can no longer be absorbed by the ileum and it has to come out. 

It can also be caused by radiation damage in those who have bowel cancer. My Nan is a prime example of this and lived for a fair few years before talking to me about her symptoms. My Nan has now been living an easier life and suffering less embarrassment now she has medication to manage these symptoms. 

It causes explosive diarrhea, excessive wind build up and burns on the way out – without medication this can be quite debilitating. With the correct medication this can be managed and most can lead a normal life. Sadly for me, 4 years on medication and it started to fail, add another Crohn’s flare. I just wanted my life back, this led me to have my second stoma placed. 

BAM Symptoms

BAM symptoms are more of a cause for causing anxiety with regards to bathroom habits

• Abdominal pain
• Abdominal cramping
• Bloating
• Weight Loss
• Dehydration
• Excessive wind
• Diarrhoea

For most of us this can cause embarrassment due to the noise and the smells associated with this. 

BAM Diagnosis

For many of us BAM can take a fair few years to get a clinical diagnosis. The reason for this is due to the nature of Crohn’s disease. The symptoms mirror a flare, if you are flaring then this can be left undiagnosed. A simple test called a SEHCAT scan can help diagnose this fairly swiftly. 

With the right combination of a low fat, intermittent low residue diets and medication can make BAM manageable and liveable.

Does BAM go away after stoma formation?

For me most of the debilitating symptoms have gone away, however due to where my stoma is placed I have high output, I still take loperamide and colostagel to help manage my output. We have tried to take me off of the medication completely but this normally lands me in hospital with severe dehydration, weight loss and acute kidney failure. The BAM has caused issues with my gallbladder and pancreas but at the moment that is being left where it is until the gallstones become too much to handle. 

My output is occasionally greasy and smelly, especially if I miss a day or two of my medication. 

I occasionally get gallbladder grumbles and pains but this is all managed with a healthy diet, healthy fats and a macros calculator, I still take my meds and for the best part the wind and cramps have eased off. 

As always 

Many thanks for reading 

Louise Xx

This blog post is intended to give advice to ostomates. The information given is based on Louise’s personal experience and should not be taken as clinical advice. Each ostomates needs are unique to them and their stoma care routine. Please consult with your Stoma Care Nurse before undertaking any changes to your stoma care routine or if you are experiencing any health issues.