Progressive Bowel Issues Post Cervical Cancer Rad/Internal Rad 9 Years Ago

[359Years]

Hi

Wow reading some of the posts on here I realise I am not alone.

I'm 35 years old and had Stage 2 Cervical Cancer with Lymph node involvement 9 years ago. I had Chemo/Radiation and Internal Radiation plus removal of ovaries. Forced menopause since then (on HRT).

Ever since treatment had finished I had loose bowels and issues with the need to go to the toilet (I'm talking at least 5 bowel movements a day and I lose count of toilet breaks for peeing!).

This last few months it's getting progressively worse; i'm finding it hard to control when I need to go (to the point I was on a plane about to land and had to run to the toilet - to the absolute horror of the crew; absolutely horrifying for me)

I'm getting no where with my doctors, they won't help me and/or just don't understand or care. I mean - I'm 35 years old, I think they just think I'm making it up.

Stupid me is sitting here getting teary eyed realising that i'm not the only one going through this.

I hope I can find the support I see some of you have received from experts.

xx

[Maggysav]

Hi I was 37 when I had radiation treatment for cervical cancer I’m now 68. I too suffer from chronic bowel issues which has progressively got worse affecting my life on a daily basis. I don’t know if you are in the UK but I managed to find a doctor that specialised in radiation damage - Dr Andreyev at the Royal Marsden. My advice is to see a specialist who can carry out tests to see if you have malabsorption problems caused by your treatment. It was found that I had developed Bile Acid Malabsorption and I was put on medication that certainly helps although not a cure. I still have flare ups and urgency but it’s easier to manage with medication and Imodium. I hope you can get the help you need,

[Patience in reply to Maggysav]

Hi Maggysav,I read about Dr Andreyev and did some research.

I found through the PRD Association Dr Caroline Henson at Wythenshawe Hospital. She is one of a very few specialists in the UK. We live in Cheshire so very easy to get to. As my worst symptom was bleeding I had three treatments of Purastat which is fairly new but it stopped the bleeding. I still have the discharge which is pretty bad. I either put up with it or have major operation which in my case is pretty risky. They haven't found a conclusive answer to the problem which was caused by radiotherapy in 2008. The question is how do you reverse cell damage? However, without it I wouldn't have survived and I'm incredibly grateful for that.

Maybe in the future stem cell treatment might work.

All the best.

[DarceyD]

Hi no you aren’t on your own. I had similar treatment 21 years ago now. Initially I had acute symptoms but they did subside after a few years. In the last 5 years it slowely returned. To a point where going to the supermarkeyt was a challenge. I had to plan things around not eating in the mornings. That was advice from GP. I have now gone on continuous loperamide (imodium). That has really helped and I can now live a relatively normal life. I’m not too happy with just treating symptoms like this but there is no alternative. I’m not skinny so to quote one gp ‘I must be doing OK’. GPs won’t refer as they say we know it is ‘just’ radiation damage. I have finally learnt to accept this combination of imodium and water tablets. Its not perfect but I am able to drive 30 mins to take dog to get groomed today and sit waiting in a coffee shop - a real treat and achievement honestly!!😀🐶

[DarceyD]

Also remove lactose/gluten from your diet. I have found that really helps me. Good luck x

[Perido]

I'm just over 5 years post treatment (RH + chemo-radiotherapy) for stage 2 node negative cervical cancer.

My issues sound similar to yours. I have bowel and bladder frequency/incontinence and always wear an incontinence liner. Tbh I'm not so bothered about the bladder frequency because initially I had total urinary retention (nerve damage during my RH) and had to self catheterise for a long time; I was over the moon when my bladder function eventually returned. However what with everything, plus I have lymphoedema, I'm not confident to go too far from home and haven't gone away on holiday since my diagnosis. It's good to talk here for support and know we're not alone xx

[Jimbo65]

I can't imagine how all this makes you feel. It's a real effort to manage bowels and bladder. I have found that the louder you cry the better the service from GP. You need a pelvic floor physio, a dietitian and determination that this will not rule your life. Have you used the dilators given to you after your treatment? It's very important that you do. This helps to keep reminding bowels and bladder where they are supposed to be. HRT is very important for your body not just hormones but for your bones and ongoing health. Get your GP to refer you to a urologist to address the bladder issues and gastroenterology for bowels. Check out Jo's Trust for more help and information. Check out tena pants and other makes of incontinence pants, them + a pad help me get out and about. That and imodium. Hopefully you've got an "I CANT WAIT" card and disabled loo key. If not Google it. All these things give you confidence. Go girl. 👍

[Picauville]

HiI too had chemo, rad and brachy about 11 years ago now. Like Maggysav I was lucky enough to see Dr Andreyev who diagnosed bile acid malabsorption and prescribed medication that I will be on for ever now - but it works! It’s not perfect, there are side effects and flare ups occasionally but I function pretty normally now.

I forget that I have adjusted my diet pretty drastically to cut down on fats of any sort, and sugars (which feed the bacteria when I have a SIBO flare-up). I’ve got so used to it now, and so have my family, that it’s almost automatic.

Since my treatment Dr Andreyev has moved on, who knows he may be in your area! Anyway I’m sure you could get in touch and either he, or someone in this organization might be able to find you a sympathetic gastroenterologist! Good luck and best wishes.

[Mariecapp]

Welcome to the group. Yes, we all have different issues after our treatment for cancer and I know that I am experiencing mine almost 6 yrs post cancer treatment. My bowels are constantly a problem. I have terrible malabsorbtion issues. I'm afraid to eat anything because of the after effects. I have abdominal pain, bloating, gas and then I need to have a bathroom close by. I take IBGard, it helps some and I take immodium which helps a lot. I get so frustrated with PRD. It's never ending.

[accidentalcarnivore]

welcome to our group. You will find support and caring here. I had stage 2b CC 2007. BAM is biggest problem for me. I am unable to successfully control it. I try colysteramine but i have a 50/50 chance of obstructing when i use it. same for immodium, and narcotics. So i have yet to find a good solution that is reliable. i still do travel and 50% of the time i am sick at some point with an obstruction and after effects which sometimes progress to SIBO. it is difficult to deal with disappointments and cancelled plans but it is also joyful when the plans and trips work out! consider joining our monthly Wednesday Chat group. I really enjoy it and have been in on them since the start, but we regularly get newbies.

[Mariecapp]

Welcome to the group. Sorry to read that you are experiencing so many problems. Radiation to the pelvic area affects so much. It will be 6 yrs in December since I had Radiation and Chemotherapy for my cancer. I have malabsorbtion issues, bowel issues, bowel incontinence issues now. I'm afraid to eat anything that I'm not familiar with because it affects my digestion terribly. I used the toilet at least 10 times if I don't watch what I eat. None of my Dr's have helped me. One of them laughs at me. It has been trial and error without their help. Sometimes I feel like the cancer didn't kill me but the aftereffects just might. Best to you with your terrible predicament

[Chargidevine]

ask for a sehcat scan to see if you have bile acid malabsorption

A also had a ct scan which showed I also had lower bowel damage from the radiotherapy

Low fat diet helps too

Please nag for a sehcat scan They don’t offer it willingly