Sibo/abdominal pain

[Ladyparts]

Hi everyone. I'm almost 5 years out from chemorad/brachytherapy for early stage cervical cancer and have been experiencing frequent bouts of bowel/lower abdo pain. I visited my gp, who did the stock standard stool tests and fecal occult blood test and all was negative. I asked her about SIBO and she told me it didn't exist. Unhelpful!

So, I did private testing and sure enough - positive for SIBO. This explains some of the symptoms, but I'm sure it's more complicated than that. The gastroenterologist I saw several years ago told me it's ibs after a clear colonoscopy. Also unhelpful! My oncology team did a bunch of scans when it first started and found no evidence of disease, however no clue how to help me.

Noone seems to understand that radiation messes a lot of things up and is the gift that keeps on giving.... even the people who administer it!!!!

I seem to be stuck in a weird cycle of flare ups. If I get constipated it can really kick things off. More recently, some nervous diarreoah (on the way to a check up) seemed to throw me into this same cycle. I feel as though my insides are inflamed/burning with the feeling of an upset stomach for weeks - this then develops into nerve pain affecting my whole abdomen, hips, glutes, legs. It's like the area becomes hypersensitive. At that point I can't tell if the pain is purely nerve related or there is inflammation as my stool can look quite normal despite this.

Can anyone relate? What have you done to manage this? My dr (different gp) has prescribed rifaxamin for the sibo, but I feel like this will be a recurring issue if we don't find the cause.

Thanks x

[Jimbo65]

Hi Ladyparts, I feel your frustration. Presumably you had no digestive, bowels, abdominal pain before diagnosis and treatment for your cancer. This you feel is a consequence of your treatment for cervical cancer. So firstly the joint pain. Get an xray done. I had a click right hip for year, no real issues. Post radiation had to have a hip replacement in my late 40s due to radiation deteriorating the bones. Again it's highly likely you have radiation damage to bowels and bladder which means there is no cure. You need tools and will power to manage and live with this condition. We're all different so what works for one might not work for the next. I have unexplained episodes of uncontrollable diarrhea. I've done a FOD map diet which helped a bit. I've done a breath test which revealed bad bacteria in the gut and given a course of specific antibiotics which had little or no effect. However both tests have shown that processed food is very bad for radiated bowels. Along with sugars, sweetners, supermarket puddings etc. It's trial and error finding out what you can and can't eat. And a lot of the time there is no rhythm or reason why you get a flare up. Exercise is very important especially if you suffer with constipation. And eating smaller amounts throughout the day rather than a set 3 meals a day is kinder to the digestive system. I know it's hard to think about exercises if you're in pain but even going for a short walk, doing some marching in the kitchen whilst waiting for the kettle to boil. Stretching using the work top like a ballet bar. If you do sets of 8-10 reps of these movements 3+ a day everyday. It will help the body. Once you get your head around management of the side effects of your treatment rather than looking for a cure you'll feel more in control. If you can find a late effects clinic near you I'd try and get an appointment with them. Hope these tips help and good luck xx

[Picauville]

Hi

I too get SIBO. There’s no pattern and flare-ups can occur for no apparent reason sometimes. I’ve managed 18months symptom free, but other times maybe 3 outbreaks within two months. When it happens I’m completely wiped out for 2 days (severe vomiting and diarrhoea).

I always have a supply of Rifaximin available, it was prescribed initially by my gastrointestinal consultant at the Royal Marsden, and I take it for 5 days usually (7 days if it’s slow to clear, but this is rare).

My diet is very low fat and very little sugar besides fresh fruit. I avoid any highly processed foods and with this manage to eat fairly ‘normally’, so still enjoy meals with friends.

I’ve been doing this for 12 years now, so don’t lose heart. It is possible to maintain a relatively normal lifestyle with this condition. Good luck.

[Gtuva]

I had years of frequent bouts of SIBO that immediately stopped after I quit taking Nexium, a PPI, for GERD. It was really dramatic and now I really don’t worry about accidents in public anymore. I consulted a radiation gastro doctor and he suggested famotidine for the GERD won’t result in the return of SIBO and he was right.

[Ohthistoo]

I have seen 4 gastroenterologists. I have found them cruel, weak, thick and gaslighting. I found Dr Davis' yoghurt cured my SIBO so would recommend his book and making some. A small portion daily. You could also try a low residue diet.