Fatigue - bowel issues

[Ladyparts]

Hi everyone,

I'm interested to hear how your bowel issues impact your energy. Some days I am so fatigued I start the day in tears wondering how I will work.

I am just over 1.5 years out of treatment and my bowel seems to have gotten worse - I think its radiation colitis as everything is very small and often 'shaggy' with the occasional leakage of a small amount of clear mucus when I'm sitting at the breakfast table! Its like SURPRISE!! Oh joy.

Sometimes I wonder how much toxic rubbish is still in there when I am 'evacuating' so little from the digestive camp. I have noticed it has taken on more of a yellow hue recently too.

Sorry for TMI, but figure you will all be fine with my poo talk!!

[Ladyparts]

Forgot to say I am seeing a gastro tomorrow!

[Beau63]

I can relate to your problems I too get fatigue when I have a flare up. I have radiation enteritis so my colon and small bowel have scar tissue and narrowing I get fatigue with bloating, cramps and nausea from food getting ‘stuck’, my bowel habits have been up and down over the years but I’m still suffering from the radiation to my pelvis 20 years on. I’m on a low residue diet which has caused SIBO due to the lack of fibre fruit & veg I can eat my diet is white bread etc my flare ups are considerably better but I now am trying to fight the bacterial overgrowth with those symptoms it’s fatigue cramps bloating diarrhoea or constipation. Continued battle but at least I’m alive from having cancer treatment but there’s a price to pay !

[Ladyparts in reply to Beau63]

Thank you for ypur reply. I'm sorry you can relate! But also wanted to say congrats on reaching the 20 year mark. Always reassuring to hear, despite the challenges.

Can I ask is there anything you've found helpful other than the low residue diet? I just saw the gastroenterologist and didnt find it overly useful

[Beau63 in reply to Ladyparts]

No there’s nothing sorry other than keeping off high fats and avoiding meat my diet is so restricted. It’s weird my blockages are in the pelvis area but my pain is above my belly button but the gastroenterologist just says pain can present itself anywhere. They don’t have the answers I’m afraid . I can’t believe there isn’t any medication we can take to help. They just prescribe a nutritional drink and say there’s people worse off some are on liquid diets. Can’t believe we all have to suffer like this.

[Ladyparts in reply to Beau63]

I know, I am discovering this It seems that where I live everything is so uncoordinated - you pretty much finish treatment and the only follow up is with the gynae oncologist, which is basically a smear. As far as pain etc goes, I've been told to just take painkillers and see a physio. The gp has no clue and cant advise. Very frustrating

[Mariecapp]

Yes, some days I feel the same way and I'm 4.5 yrs cancer free. My gastro Dr told me it's from radiation damage and gave me suppositories that have little effect. I REALLY have to watch my diet. Hoping and praying that your Dr will help you🙏

[RoseTyler]

How frustrating! I feel the same way though. Poo problems vary and for me it's just gotten progressively worse (i.e. more frequent) over the last nearly 3 years. I finished treatment in Feb. 2009 but the PRD really kicked off in Sept. 2018 (though I had very occasional flareup before then if I had caffiene or too much high fat junk food ).Nowadays though, it is nearly every day and it's so damn frustrating! I am hesitant to go to Hospital due to Covid despite having my jab, it still makes me nervous. :/

I also get the same thing where your poo looks different when your symptoms get worse. New shit all the time!

I hope you find some relief. I'm sadly not surprised that the Gastroenterologist was useless for you :(. Damn PRD.

[accidentalcarnivore]

CC 2007, now struggling with BAM. My diet is protein only. Manage BAM with loperamide. Help a bit. Use lots of vitamin supplements . Not at all sure how healthy my nutrition is. I research & read continuously. I’ve been my own best advocate. Sorry you are suffering too.

[HarleyQuinn82 Community Pioneer]

Sorry your experiencing these issues. Definitely worth asking gastro about bile acid diarrhoea it’s quite common after pelvic radiation 🙁 let us know how you get on xx

[CrochetDancer]

Hi Ladyparts,

I have just read your post and I am sorry you are having a rough time.

I have radiation enteritis and I was in hospital last weekend with another bowel obstruction. I am struggling to get over this latest episode and I am throughly I fed up and the fatigue is awful. From what I have read fatigue is part and parcel with radiation enteritis and colitis.

I can’t say how to handle it because I am not handling it very well. I get a lot of pain from trapped wind. However, I just wanted to say your not alone and even if myself or someone else can’t offer much in the way of help, it is nice to know there is always someone to chat to.

Love and good vibes,

Lisa x

[Perido]

I also suffer a lot of fatigue ever since my cervical cancer treatment in 2017.

I have bowel incontinence and frequency, occasional bleeding associated with bowel motions (recent colonoscopy - OK) plus bowel urgency. If I can't deal promptly with my bowel urgency it gets quite explosive lol.

I also have lymphoedema which is my most debilitating side effect from my cancer treatment. I get fatigue from both my bowel issues and my lymphoedema.

As well as radiotherapy I had a radical hysterectomy which caused a lot of nerve damage to my bladder which has left me with partial urinary retention; I am constant alert for my bowel incontinence as it increases my risk for UTIs because I need to self catheterise. It all gets very tiring.

Apologies if I've gone off topic a bit. It's the fatigue thing - I'm not always sure what's causing it.

I'm sorry you're having such a tough time. I'm lucky that I'm old enough to retire. I've worked full time all my life and I can empathise with how difficult it can be with challenging health issues. Do you have an understanding manager you could discuss your difficulties with?; maybe there are adjustments that could be made to help e.g. flexible working times etc. Is there an Occupational Health Dept. in your work organisation who could support you?

x

[Jimbo65 in reply to Perido]

I am so sorry to hear of your issues I thought there was better information for life after CC now. I was diagnosed with CC in 2005 and here I am all these years later suffering from PRD. I have gone through lymphedema, have bowel and balder incontinence and I'm still trying to find a balance and way of living through the cure of cancer. I found gentle exercise and pilates keeps my lymphedema under control and I was given a great booklet about self massage for it from my Macmillan Nurse. I take one imodium am and one pm every day and this seems to keep things okay. If I'm going out though I always take extra and have change of clothes with me as have experience the horror of losing it while out and about! I can't believe with all the medical advances that long term radiation is still affecting life so horribly for so many. BTW Jo's Trust is a good place for information too. I think we just all need to keep talking and keep our voices heard by health professionals so that more help can be made available and more research can be done. P.S does anyone know if there are any trials regarding long term radiation damage?