Chronic radiation effects

[Bathroomhunter]

Struggling with bowel incontinence, stool frequency, and inability to get even small stool out. Have a bowel stimulator and have only had minimal improvement. Also, have had multiple surgeries for prolapsing pelvic and rectal organs since 2018. Had vaginal cancer treated with radiation and chemo in 2011 and have suffered with chronic radiation effects since 2016. Has anyone else experienced similar issues, if so, any suggestions or places to go for help?

[DarceyD]

I can only empathise if it helps😀. I am 20 years post cervical cancer treatment and have all these symptoms. They get better with FODMAP diet and have recently started ‘Symprove’ probiotic, which has helped. However at £70 a month I can’t take it permanently. Ever few years I have a go at getting help. Usual pattern at doctors is - cancer checks - celiac check - blood tests. When all come back clear (as I expect) ‘IBS’, Also been told not to eat if I want to go anywhere. I have been referred to dietition a couple of times who generally say to not cut out foods and take imodium. The latest being that its ‘just stress’ as ‘PRD only lasts a couple of years or months’. So for me I have accepted its down to me and no caffeine/sweeteners/gluten/lactose/alcohol/onions/sulphites/cauliflower/apples and take the brilliant out-and-about-pack everywhere to mitigates for me. Also smaller meals more often. I miss long walks in the country but I can at least get around the supermarket😀.

[Bathroomhunter in reply to DarceyD]

DarcyD

Thank you for sharing and your comments. I plan to focus on the diet.

Thanks

Bathroomhunter

[Hidden in reply to DarceyD]

Hi Darcy,

Probiotics are a must for me. The gut gets trashed from radiation treatments and this can lead to bacteria imbalance (SIBO) which can cause bloating, cramps, diarrhea, etc.

May I ask who told you that PRD only lasts a couple of years or months? Thanks. I hope that things continue to improve for you,

[Dustyangel]

Hi , I can totally relate to what you are saying, regarding bowel issues. I take Laxido twice a day to help with bowel movements not because I am constipated it is because I really struggle getting bowel movements out, it's hard to explain its like the function of the bowels has lost its function. I get up 2 .5 hours earlier in the morning so I can go to the toilet before I leave for work most days I have a moment somewhere in that time somedays I don't and that upsets the routine that normally works! Bloating nausea etc. Sometimes I can go 2 or 3 times in the morning aswell but I'm happy just to get it out!

[Skellige Community Pioneer]

Hi there So sorry you too have these issues. I have similar problems at times - I had endometrial cancer and was treated with radiotherapy after a hysterectomy. I’ve been told I now have IBS-C (‘C’ for constipation) which gives me what I call gastric attacks - bloating, severe gut pain, nausea etc. These can last a few days. It feels like my gut is less elastic than before treatment.

I also found the FODMAP diet helpful, but I was introduced to it via the hospital and gastroenterologist, and only after breath tests. Have you had those? It helped to have a fructose intolerance identified.

I now avoid onions, garlic, white flour, certain nuts, processed meats and only have small amounts of a few fruits and vegetables. There is an app called the Monash University FODMAP diet which is very helpful, as identifying high FODMAPs can be tricky (cashew nuts and pistachios bad, walnuts and peanuts ok).

I do still have the attacks, but less often and now I recognise the symptoms I can head them off a bit. The upside is I have found foods I like and can enjoy, and I can get out more. I know how depressing and overwhelming it can all get, and sometimes you just need to know you are not alone, and it is not too late to find some relief. Quality of life is worth pursuing (I won’t say fighting for - fighting can be exhausting), so please keep trying.

[DarceyD in reply to Skellige]

Thank you - How did you get the breath tests? I have been on FODMAP but dietition says only help available is if I start eating everything again for 6 weeks. Then do the process of FODMaP again. Really I don’t have the strength to tolerate 6 weeks😀 plus would be terrible to keep working through it.

[Skellige Community Pioneer]

Well, I got mine through the hospital, as I kept complaining about the gastric problems I was having and they passed me on to gastroenterology. In the UK you can also get them at private clinics (at a price!). After that they could at least tell me that fructose is a particular problem for me, but not lactose, which meant I could open up my diet more.The FODMAP process was quite complicated - a full month of no FODMAP at all - which was quite restrictive, then one type introduced at a time, symptoms noted for a week, then a week back on no FODMAP. It took three months to complete. One of the factors with the diet is that you need to watch how things build up - I can have a tablespoon of peas, but if I also add a helping of 50g of sweet corn it goes over the limit.

So - it’s not perfect, but I found it did help me to get more control over things. My treatment was in 2012, and it has taken me at least 8 or those ten years to get to this stage. It was worth struggling over, for me, anyway.

Weirdly I also find any kind of pressure on my stomach for any length of time can trigger an attack - even leaning forward at a desk, or bending to weed the garden. I can’t wear any restrictive clothes round my waist. I tend to live in soft top jeans, dungarees (overalls to you I guess!) and loose dresses, and I garden either kneeling up or standing. This has never been explained, but avoiding that also helps me.

Good luck with the dietician - I hope they can be helpful and encouraging through the process if you decide you want to try again.

[Vailgirl in reply to Skellige]

Hi All. I can empathize w all of you. Im 16 years out. It took me 7 years to figure out my diet. Basically i agree w all others have said- no gluten ( or very little) and Fodmap, no coffe or chocolate. I can do wine in moderation and tea. However i watch fiber. This was a game changer for me. 2-2.5 grams of fiber is all i can eat. If i get to 3, i will have terrible gas and cramping and incontinence. More then that and ill have constant leakage and i may end up w severe blockage followed by vomiting and 4 days of constant loose stools and not being able to eat anything. I usually have to go to ER to get fluids. Ive gotten better but sometimes make a mistake as many gluten free items are highEating is nit as much fun or as healthy. If im planning to go hiking or out, i try to give myself two hiurs and some movement before leaving the house and will only eat a slice of sourdough bread. Oh and of course i travel w backup supplies

[Skellige Community Pioneer]

Just to add I can see your past experiences have been really severe, and traumatic - far worse than anything I’ve had to go through. I hope my reply didn’t come across as simplistic (FODMAP & waistbands!).

[Bathroomhunter in reply to Skellige]

Skellige,Thanks for you comments, every suggestion is appreciated and holds weight to me. You live and we’re treated in UK and I was in US so, your treatment may have been superior to mine, saving surrounding tissues from the effects of radiation. I was 48 when I was diagnosed and treated, I am sure age makes a difference when delivering radiation. Well I just take it one day at a time. However, I am at the point of getting a colostomy, just to try to gain back some of my quality of life.

[Skellige Community Pioneer in reply to Bathroomhunter]

Quite a few people on this site have gone for that option and been much happier as a result. Best wishes for a good outcome whatever you decide.

[Chuifan]

Hi, Read all your posts. Your sharings are all very useful. I had radiotherapy a month ago n since then I have been suffering from anal fissure- and piles-like symptoms. Anyone having similar problems?

Chui

[Dustyangel in reply to Chuifan]

Hi Chuifan, sorry to hear that you are going through this. I did have what you are explaining before radiotherapy ended and when it did end, and to this day have similar but I would like to say not as bad which is a blessing. It is so painful! I spoke to my radiotherapy nurse and she gave me some suppositories and a cream to apply but I couldn't even insert them it was like my bottom had closed shut and I couldn't pass a bowel movements so back to nurse who put me on the laxido every 2 hours to get emptied before the next day's radiotherapy. Too much info comming here but I actually had my partner apply an ice cube also a 'tip' from the nurse to soothe the piles the relief was brilliant but short lived. I also got something to try that men use after they have had radiotherapy for prostrate can't remember what it was called now but it was a foam like thing that you insert inside the bottom from a pump type container. I couldn't use it though as my bottom was still so painful. I spent many a night crying cause it hurt so much. I was getting brachytherapy aswell and I couldn't honestly wait to be put to sleep and filled with morphine to be at least pain-free for a few days, but also they gave me medication to stop bowel movements and a cathetar as I was on my back and couldn't move for 24hrs, so then back home the worse it got cause then I was constipated. So more laxido and yes it was painful to go but it had to happen, fast forward until now I'm on 2 laxido daily. I find germaloids suppositories and the cream are quite effective on particularly bad days. I would recommend that you speak to your consultant or radiotherapy nurse about how things are effecting you sometimes they do think out of the box and can give great advice advice even if its a bit of trial and error. All the best wishes in your recovery x

[Chuifan in reply to Dustyangel]

Hi Dustyangel,

Thank you very much for your reply. I will ask my doctor if I can get anything similar to what you suggested.

Hope we can all enjoy a happy spring n summer!

Best wishes,

Chui