Suead

[Susiead]

Suead

Hi guys,i’m new to this site so please bear with me. In 2016 I was diagnosed with anal cancer . I went on to have radical chemo and radiotherapy after which I suffered a lot with backpain, Feeling sick, bowel problem and general tiredness. If there’s anybody out there with similar symptoms would appreciate any help .thanking you in anticipation.

[Blue_Hawaii]

Good morning Susiead, sorry you are going through all those systems .

I'm suffering with back pain ,I was diagnosed with arthritis in the back and right hip caused by radiation treatment

I have B12 injection, the lack of that vitamin that leaves you very tired

As for bowel the small intestine is damage

I wish you well, sending you a big hug 🤗

[Susiead in reply to Blue_Hawaii]

Thank you so much for your help I will definitely look into those b12 injections .Sending you a hug back

[jude-the-obscure Community Pioneer]

Hello Susiead

Sorry to hear that you are feeling so poorly

what kind of bowel problems do you have? Pelvic radiotherapy can cause constipation and/or diarrhoea. Does the sick feeling relate to the bowel problems in any way?

Have you talked to your GP or the follow up team? Best place to start as they know your history..

Read the posts on this site and you may find some of them useful.

We are all different and you need individual advice from your own GP or consultant. Macmillan helpline can be be really useful too.

Get plenty of rest and be kind to yourself!

very best wishes

Jude

[Susiead in reply to jude-the-obscure]

Hi Jude thank you so much for getting back to me.l have so many side effects from the radiotherapy ranging from constipation to diarrhoea, water infections, and backpain.It very hard to know where to go as my GP doesn’t know what to do with me ,I don’t think they really understand the problem Thanks again Suead💕

[jude-the-obscure Community Pioneer in reply to Susiead]

Yes, the picture sounds familiar. I had uterine cancer in 2010 with a hysterectomy followed by radiotherapy and chemo in 2011. I have suffered urinary infections until I found Waterfall D Mannose - a non soluble sugar that stops EColi ( gut bacteia) lodging in the bladder wall - this has helped a lot. Available from a Yorkshire firm on line. I take 2 1G tablets at night. My GP said they will do no harm but is not convinced about them doing good! They are quite expensive... I take great care about hygiene especially after an upset tummy!

However you need professional help and could ask for a referral to a gastro enterologist who specialises in late effects of pelvic radiation. Sarah would be able to tell you of such people in your area.

I had a happy Sunday morning and a good lunch this week - then out of the blue - violent diarrhoea late afternoon and evening. Took 5 loperamide : 2 initially then 1 after each attack of the trots to stop my gallop. Dioralyte drinks put back all the fluid and salts I had lost. Feeling more myself today but exhausted yesterday.

My GP and pharmacist have been wonderfully supportive and I have seen 2 gastro- enterologists. The second one was more on the ball than the first and did some useful tests to rule out damage to my small intestine! He has a special interest in PRD

It is really important to get a proper assessment and to use medically prescribed medication. This gives you the confidence to manage your symptoms properly. You will be the best judge of what works for you and develop the expertise you need.

I am an ex nurse and it took me ages to sort out how to deal with my problems. Loperamide can send you into reverse and constipation is equally distressing..

Diet is worth considering - I avoid onion family and certain nuts. Had walnuts and sultanas on Sunday afternoon - just a handful or 2. Don't usually cause a problem, but who knows? I still have set backs and just have to accept that I must take each day as it comes. I do try to have my 5 portions of fruit and veg a day and drink plenty of water.

I have milled linseed (flax seed) on my cereal. Started off with 1 teaspoon and added a little at a time till I got to a tablespoon each morning. This helps to keep the stools formed and regular without irritating the gut.

Lock down felt like a blessing as I did not feel obliged to go out a lot or visit family and friends. How ridiculous is that?

The tiredness may be related the battle you have to stay on top of your symptoms and the anxiety of it all. We absorb B12, usually, from our diets. Blue Hawaii may have and absorption problem specific to her. Back to my main advice - get professional help soon. We are all different but the symptoms you have need to be properly addressed and sorted out. I just shared the above with you to illustrate that there are ways of managing things. You do not have to suffer alone!

The PRDA community will always be there for you - and be able to empathise with you.

Love and best wishes

Jude 😊

[Stilllooking]

Hi su

[Stilllooking]

Hi susiead I only joined 3 weeks ago. All the stories about how people are still suffering years later it’s horrific. Yes I had cancer of the womb It’s not easy go to your doctor Get something to settle your stomach Ed omniprazole and maybe fybogel for your bowel. I wish you the very best of luck 💖

[Susiead in reply to Stilllooking]

Hi stilllooking thank you so much for your reply. It is very depressing That this can go on Indefinitely But hopefully we can all get some good tips from each other to make our lives more bearable.I do hope you find some help sending you a hug. Suead

[Happyretired]

Hi Susiead. I had the same diagnosis and treatment as you back in 2004. Initially I was relatively fine and was able to work through treatment etc. About 4/5 year post treatment I started having abdominal cramps and bowel problems. Bouts of diarrhoea but never constipation. Unfortunately my biggest problem is intermittent faces incontinence. Like other members of the group I found diet played a major part so I tend to have quite a carb diet and I am careful with fruit and veg

( tho I do try to have my 5 a day). For me Loperamide syrup works well as I can better adjust the dose as often 1 mg is all I require. I have recently tried flax seed with disastrous consequences but I may try a reduced amount again.

I have realised since joining this group that I am very lucky compared with some others so when I feel down I remind myself of this.

Be kind to yourself and remember we are all here to help each other.

[Sarah_PRDA Partner]

Hi Susiead, thank you for posting on the community.

I see from your post that your GP is finding it difficult to know how best to help you. We have a resources section on our website which includes clinical guidance and information, for medical professionals, which you may find helpful to share with your clinical team.

prda.org.uk/wp-content/uplo...

If you are still having difficulty accessing the appropriate care, we have a database of UK based PRD specialist which you may be eligible to be referred to. If you would like to pursue this option please send me a private message and let me know your specific symptoms, your original cancer type and where you live. The reason we ask for this is that some clinics have specific referral criteria.

Kind regards

Sarah (PRDA Office Manager)

[Mariecapp]

Hello. Sorry about your diagnosis. I had anal cancer and it has affected my bladder, bowels and digestion. Pelvis radiation is terrible and it has long term after effects.

[Contra21 in reply to Mariecapp]

Hi there. May i ask what symptoms you had. Ive had rectal itching so severe over last 5 years, nothing helps. Amd had a colonoscopy in 2018 all clear. But i can't help but feel why the itching won't stop, on amd off constipation, anal fissure. Thanks in advance.x

[Mariecapp]

Hello and welcome. I too was diagnosed with stage 2 anal cancer in 2016. I had the same treatment as you. Here i am 4 yrs later with bowel issues, bladder issues and digestion issues. I still have fecal incontinence and sometimes i pass gas when I'm around others which embarrasses me.. Sometimes I still bleed so bad rectally, but I guess that will never go away. I see my hematologist every 6 mos because I now have a pre-cancerous protein in by blood so it has to be monitored because it can progress in to leukemia. I see a urogynocologist for my bladder issues. I watch my diet and get regular exercise. Some days are better than others but I'm not going to let it stop me from doing what I like.

[Blindfaith]

Hi Susie. Stage T3, N2, M0 anal cancer survivor here too - and I feel your frustration. I’m sorry to say that our experience is common, there can be a delay but symptoms of radiation effect can be hard to live with. I think the missing link is aftercare, understand how we feel, helping us adjust. I was referred to a gastro consultant who, although nice, blamed everything on constipation. T’isnt so. I’ve tried dietary changes, Imodium, codeine, self enema type stuff, the list goes on. Some days are (pardon the pun), crap. I can’t do much at all until my pain meds work and my codeine kicks in, the only thing that helps a bit. Oh, and the Instillagel, the substance from hell! I used to hate it because of the agony when it hit the radiation burns..And now I Yelp when it hits my raw skinless bumhole after a bad morning in and out the loo. Somehow we cope. My back hurts loads, hips too - yoga helps me, big exercise ball, watching my posture when sitting. Try and do some form of exercise, whatever you can manage, don’t let your back become stiff. Epsom salts baths are good. If it continues maybe something like Gabapentin may help, I take Pregabalin, they’re similar. There are loads of us, all thinking we are alone but we are not. You’re not xx