Ongoing issues

[Dasch123]

Hi allI am 1 year out of treatment for stage 3C1 cervical cancer. I had radiotherapy, chemotherapy and brachytherapy. I have since had a colonoscopy, bowel biopsies, a SeHCAT scan and EPI test because of terrible bowel issues. I have seen a letter to my GP saying my SeHCAT and EPI test were clear but I physically see the gastroenterologist on 24th to officially get the results. I am just wondering what is next? Is that it? My colonoscopy showed permanent bowel damage so is that just it ? I take Imodium and Mebeverine with every meal and that generally holds off watery diarrhoea but the urgency, frequency pain, discomfort and mucousy stools remain. The gastroenterologist said I can go up to 8 Loperamide (Imodium) a day but that seems such a lot ! I also have very bad hip pain.

[Quercus16]

Oh my goodness you have gone through a truly difficult time. I’m so very sorry and I pray the path will get easier for you. I was luckier in as much as I just had radiotherapy but it was daily fir almost 5 weeks. In the early days this resulted in bladder and bowel issues. 18 months they are not as severe and I am not having a proper poo occasionally, thst was so exciting! Only those who know who have gone through this will understand. The bladder needs immediate attention or accidents still happen but again not as bad as they were. Please do get your pelvic pain looked at as I developed insufficiency fractures 12 months after radiotherapy. I still have three pelvic fractures despite 7 weeks lying in bed. My oncologist is amazing and trying to find treatment for them. Apparently pelvic radiotherapy can weaken the pelvic bones. I hope you don’t have this as you have been through so much already. I’m here to chat if you need or would like to. Xx

[Dasch123 in reply to Quercus16]

Thank you so much for responding. I am going to ask for my hip pain to be investigated, it is becoming quite debilitating now and having an impact on daily life. I went to a wedding reception last night and was itching to dance! , but couldn't. I see the gastroenterologist on Tuesday 🤞

[Triumph-Girl]

so sorry to hear your situation.

I had chemorads and brachytherapy back in 2020. Touch wood my issues aren’t as bad as yours. I went on to oat milk as apparently dairy causes mucus, I suffer from very hard stools like marbles then suddenly swing the other way. I got a lot of advice from a physiotherapist of all people, she gave me a lot of advice about diet, my oncologist referred me so I guess it’s a regular problem after rads. I do hope you feel better soon.

[Dasch123 in reply to Triumph-Girl]

Thank you...yes I think bowel issues are quite common unfortunately. I don't think it was explained prior to treatment beginning, quite how bad this can be ! My diarrhoea started the first week of radiotherapy, they initially said I must have picked up a bug but it just didn't subside 🤦🏻‍♀️chemo has also damaged my hearing too and I've recently been fitted with hearing aids. Cancer is a gift that keeps on giving !

[Renee1964]

Hi , cervical c. B3 here, 75 daily rad.IMR, chemo and brachy. 10 years later. It was bad at the beginning but controllable , and then a few years back it started , colonsc, gastroscop, endless scans , diets etc. Lived on loperamide still do. So , after all that it is radiation damage , pantinapoies , loperamide 6 to 8 , severe diet restrictions no fruit or vegetables just potatoes,rice,pasta and chicken plus 10 bottles of medical hierprotein shakes. I have a severe loss of weight and in 2 weeks they are putting in a feeding tube. But all in all toilet is still my best friend!Pain hip is normally from stress fractures , rads burn your bones and just getting out of bed can cause a fracyure. It hapoened ! 3 so far. To deal with the pain , medication , painkiller , a paracetamol AND a hot water bottle right where the pain isc. Life saver.

Best of wishes !

[Dasch123 in reply to Renee1964]

Oh my goodness you have been through it😔thank you for responding. I have a GP appointment this morning about my hip pain🤞I am under a gastroenterologist who is now thinking my issue is Coeliac disease however I have had an intolerance to gluten for over 10 years way before cancer...my diarrhoea is not because of gluten 🤦🏻‍♀️he wants to do a gastroscopy but I really don't want it done😔I have already had a colonoscopy and that has shown bowel damage but in his opinion it doesn't look bad enough to warrant the issue I am having 😬. I am so sorry that you are experiencing such awful symptoms 10 years on. There really needs to be more awareness of all this. Sending you the bestest of wishes x

[Renee1964]

Hello again , my gastro found that the colon and intestines were fried , with thick scarring , so what comes in goes out immediatly, answer from him ; restricted diet , loperamide and if things got really bad a cholostomy bag which 3 years later still saying no to. The fibrous scarring doesn't permit food to digest in a normal way . Way to see it properly colonscopy with contrast awake !The gastroscopy helps see esophagus movements, sores and diaphragma which is good to clear up issues of swallowing etc.And get them to do a scan or mri on your hip , fractures hurt like hell even if they are just stress fractures.

Best of luck with your drs today !!

XXX Renee 😘

[Dasch123]

I've just come out of the doctors...he said wait for my next cancer scan(CT scan) on 7th Sept to see if that shows anything and if I'm still in pain he'll do an MRI after and he prescribed pain killers 🤦🏻‍♀️I feel like I'm hitting my head up agains a brick wall post treatment tbh😔just left to get on with it. I asked for another coeliac blood test as I have reintroduced gluten in the last couple of weeks and feel rubbish. I can't cope with having to feel like that up until the gastroscopy, so tempted to have this blood test done and if it's higher than the test done a few months ago then just go completely gluten free and cancel the gastroscopy x

[Mariecapp]

So sorry that you are experiencing so many problems. I started taking 2 prebiotics and 1 digestive enzyme supplement. I think that it is helping but I don't want to say that too much because then I have PRD problems. I am not taking Immodium as much either. I know that I will probably never be able to eat a regular meal anymore. Sometimes I still have bowel problems but not as bad. We all suffer from the terrible aftereffects of pelvic radiation! Best to you. God bless

[Dasch123 in reply to Mariecapp]

Hi Mariecapp. Thank you for your message.....it's weird you saying that about eating....I have been thinking this morning 'I think I am always going to have an issue with eating now' since my last gastroenterologist appointment o have been eating gluten because he wants to take biopsies to check for coeliac too now(I've had an issue with gluten for years so avoid it most of the time)and I feel terrible. I am honestly thinking of cancelling the procedure and just doing gluten free strictly. I just don't want to add to my symptoms by eating it up to the test I've been through enough😔

[Vin06]

I had cervical cancer back in 2019 had chemotherapy and radiation treatment I now have radiation colitis because of it I'm now limited to bland foods I have to be near a toilet when out I wear pull ups for adults just in case I don't make to the toilet life is not good but one thing is I don't have cancer anymore

[Dasch123 in reply to Vin06]

We have to keep that in mind don't we...the alternative is cancer so even though I have post treatment issues, I'd still rather take that than have cancer because I know without the treatment I wouldn't be here now. Best of wishes to you x

[Corey19]

I had the same treatment 2 and a half years ago and apart from the hip pain have the same problems. I'm now on a low to no fibre diet which helps a bit and have loperimide on prescription. Sulfricate enemas helped slightly but it didn't last and I've been told time may help. Now my life revolves round having toilets nearby although I can be fine for ages, I don't trust my bowel now, still a good life, cancer free, just a bit more planning for everything and on bad days when it makes me feel rubbish I hole up at home with a good book.

[Dasch123]

You have described my life spot on😂👍I always make sure I find the toilet first if I go out and on the days that are bad I curl up with a book or do some art and craft👍being cancer free atm is worth everything. I have a full body CT scan in a few weeks🤞and they are going to look closely at my hip to see the reason for my pain x

[Quercus16 in reply to Dasch123]

It may be insufficiency fractures, I have three and haematoma. They are caused from pelvic RT weakening the bones. I’ve had them for 8 months now and no sign of healing. Does anyone else share this problem? C

[Quercus16]

I am 22 months post treatment and only now am I having solid bowel movements. The joy when I had my first one was off the scale. So please don’t give up hope. I still avoid curry’s or spicy food much too concerned incase those watery motions return. There is hope. I’m thinking the body just needs time to heal. Both my bladder and bowel were badly affected but both are thankfully now stabilising. Don’t give up xxx

[Romian]

I had a first pelvic radiation in 1997 and then a second one in the same area 4 yrs ago for anal cancer stage 1. I had chronic diarrhoea and fecal incontinence for all these years, but it got worse since the last radiation. I did a lot of research on nutrition and put myself on low residue diet. It really helps, but not for having to go to the toilet between 1 and 3 hours after a meal. So I don’t eat if I have to go out. Sometimes I haven’t eaten for 24 hrs. Forced intermittent diet. I live in France and there are no public toilets most of the time or they are dirty. Now I’m looking into resistant starches foods. Major thing. Check it out. I have also Lynch syndrome. The sixth cancer I got very recently is skin cancer carcinoma due to the sun or the syndrome, I don’t know. Best to all suffering from PRD, but check the low residue diet.