Bad flareup :(

[RoseTyler]

Hiya everyone;

Yesterday I had the worst flareup I've ever had :(. I had friends round for the weekend and I took about 6 Loperamide so I could eat 'normally'. I have done this before and it usually works to prevent the diarrhoea and urgency. Well, it did that, but it seems that I had a partial bowel obstruction as throughout the day Sunday, I felt increasingly bloated and then at night, looked like I was 8 months pregnant! My belly was so painful and distended all night. Monday morning, I was no better. My tummy hurt so much and I was actually sick :o. (I hadn't puked since chemo!)

I still hadn't done a poo (sorry if tmi; damn PRD) ;o , and I even felt kind of feverish and wonky. I went back to bed and then had to go to loo a bit later where I had a few small poos, but nothing like I would expect.

It was all very alarming! I had read several stories on here of people who have had bowel obstructions and I seemed to have all the classic symptoms. WTF?! I usually have the opposite problem, but if my bowel has narrowed, or there are adhesions from the radiotherapy damage, I suppose this can happen; especially as I have to live on Loperamide in order to eat. :/ Perhaps this time, it just worked too well. I just don't want that to happen ever again!

My GP is clueless and I haven't had a chance to connect with a Late Effects Clinic yet. It is a bit complicated for me as I live in Canada for the Summers and back in the UK in Winters so I'm not in one place all the time.

Any tips to prevent the bowel obstructions whilst at the same time keeping the diarrhoea under control? It's all so damn complicated!

Thanks for being here everyone :).

[Sarah_PRDA Partner]

Hi RoseTyler ,

I just wanted to pop on and say hello. I hope things have improved and you are feeling better.

It's really important to seek medical attention if you suspect a bowel obstruction, as this is a medical emergency. I have listed the symptoms below for reference:

- Sudden and strong pains in the stomach area

- Bloating

- Feeling or being sick

- Inability to poo or pass wind

- Cramping tummy pain or discomfort that comes and goes in waves (colic)

- Heartburn (acid reflux)

- Noisy gurgling from the abdomen

The 'Practical Management of the Gastrointestinal Symptoms of Pelvic Radiation Disease' guide states that dietary fibre manipulation (a reduction in dietary fibre intake) may help. Understanding the cause of your chronic diarrhoea is also important as this may make things harder to manage through diet.

Absolutely mention this episode to the late effects team if you can contact clinic, as they may be able to offer you advice.

[Perido]

I think that some of my flare ups (abdo pain with alternating constipation and diarrhoea) are associated with stress. Even nice stress (excitement) seems to end in a flare up for me: I was fine for several months earlier this year then took a 2 day break in May (to travel and stay with relations) only to then get a flare up which is (I hope) only just beginning to settle. Overdoing things also seems to bring on a flare up - I get anxious to step outside my 'safe' routine.

[accidentalcarnivore]

hi Rose. I’m so sorry for your troubles. I have the same issues. If I use loperamide to control the diarrhea so I have some freedom to socialize or go somewhere I know I have a 50-50 chance of obstructing as a result. I rarely use it because of that. An obstruction can steal 4-5 days of pain and inability to do anything. It’s a nasty catch 22. I manage by timing my meals and fasting for travel or excursions. I also only go places where I know there will be a bathroom. I avoid fire or keep fire daily amounts to less than 5 grams. I have discovered that a carnivore diet prevents obstructions but not diarrhea. Lately I’ve had luck with adding in one slice of sour dough bread a day or 2 bites of cooked carrots or 4 crackers. This little bit of fiber helps with the diarrhea. I also can’t use binders as they cause obstructions as well. Hope this helps

[RoseTyler in reply to accidentalcarnivore]

Thank you. That is sort of how it's become for me. However, I am Vegan so there is no chance of a carnivore diet for me ;). I do generally fast when I'm out at work or traveling, but I clearly ate far too much and took too much Loperamide last weekend. I am only now starting to feel somewhat 'normal' (whatever 'normal' is these days of PRD ), but if that ever happens again, I must go to A&E :(.

I am trying to get my GP to refer me to a Gastroenterologist as I've no Late Effect clinic near me yet. My GP is so clueless about PRD (and cancer in general it seems!), that I hope she can find a Gastroenterologist who is at least AWARE of PRD! It's so frustrating :/.

[technobabe]

hi rose, apologies for late reply. My experience is that the bloating etc can be caused by foods that ferment like lentils or beans combined with taking Imodium which freezes the gut. This causes a buildup of gas. Small meals, low fibre, daily enemas, fasting, Imodium is what makes my life bearable! Hope this helps.