Anal stenosis?

Hello BOOmz, great that you found this site as it’s a minefield for information from members who are starting, going through and finishing treatment. I am 22 months post treatment and diagnosed with anal stenosis and apparently a very short anal canal. I have radiation fibrosis in the anal canal which was an uncomfortable lump that caused discomfort when going to the toilet. I have been reading about the radiation fibrosis and found an article about massage on breast cancers patients and this condition and massage using tamanu oil. I also found research papers where they used this for anal cancer patients. This involves massaging the anal canal with your finger and the oil mixed with a carrier each day for about five minutes but I didn’t do that long maybe about two minutes in the evening when relaxed. I can only say for me it’s been a godsend and I saw my oncologist last week and she said it was definitely easier to examine me this time. I told her about the oils and she said she was going to make a not of this. I do pelvic floor exercises including the anus and find opening my bowels have massively improved and although I feel a stretch it doesn’t hurt. I continue to do this and see if it improves even more. We are not shy and let things get in the way of trying to get back to normal as much as possible and I do not experience the spasms hardly at all and the comfort level down there feels great. I can only speak for myself but feel empowered that I can do something to help myself and hope some members on here feel it’s worth trying.

Hi B00mz , 

Welcome & I’m so pleased you’ve found the forum helpful along your journey, it’s sometimes enough just to know you’re not alone isn’t it? 

I’m sorry you’re suffering this discomfort right now, I can really empathise with you. I think the majority of people that receive this treatment will have anal stenosis to some degree unfortunately! In my own case, although my treatment was a little shorter than the norm, my surgeon said my stenosis was quite bad. I relied on either Movicol or Laxido (stool softeners) daily for a little over 3 years post treatment but then was gradually able to stop taking them & apart from the odd bout of constipation which usually lasts a couple of days I find going to the loo fine now. 

Would it be possible for you to contact your treating team to get an earlier physical check up just to put your mind at rest? You could also ask for them to prescribe stool softeners for you as they will definitely help make things more comfortable in the bathroom, if they are prescribed just make sure you try & drink plenty of water too as this will help the softeners do their job. 

I hope this helps a little. 

Nicola

Hello B00mz

Welcome and I am so pleased you have found the site helpful.  I certainly did and it was so beneficial to have others to talk to who all had experience of this cancer, the treatment and side effects.  I have anal stenosis too, and daren't go with a Laxido stool softener every day as my nightmare is constipation, which can happen so easily.  Straining also brought back the piles I had during pregnancy so I have all the more reason to make everything easier for my bowels to open.  But I must admit, I don't get pain to the level you describe, which must be so debilitating. Jaycee has given some excellent tips on coping with stenosis and fibrosis, and it would certainly be worth mentioning your pain to the team treating you at your next appointment.

Please let us know how you get on.

Irene xx  

Hi B00mz,

Yeah,  I think it's a worry when you get pain that severe that far out. I still have some very mean-spirited bowel movements, but nothing at the level it was after treatment. Pretty sure I do have stenosis, and am also using massage (thank you, Jaycee) and I think it's helping some.

But you should definitely get in touch with your cancer team and see if they can help figure this out.

Suz

Thanks everyone for your posts. I wasn’t seeing much stenosis talk in the forum and felt alone. Yes I will speak to my medical team but the anxiety is real and hoping for as much info as possible. I have two questions for all of you. 1) when did the stenosis start becoming problematic or noticeable to you? How many months post treatment? For me it was 1 year after so wondering is that is normal? 2) have you experienced bright red blood after bowel mouvements and can this be caused by the stenosis? 

thank you

Hi B00mz ,

I can’t be very precise when I realised my stenosis became really noticeable but it definitely gradually got worse over the first 18 months post treatment, at each appointment when I had my DRE my surgeon mentioned that things were pretty tight back there! This has definitely improved since then though & it was commented on at my 4 year check-up that things had improved slightly. 

Regarding the bleeding I used to quite regularly get blood on the toilet paper after a difficult bowel movement, I would mention this at each appointment, my surgeon said as long as it wasn’t pronounced blood loss & it stopped straight away & it was bright red then it was probably just a split in the new skin as obviously following the radiotherapy the new skin is very fragile. This had happened less & less over time & happens very rarely now. I will add that it’s always worth getting any bleeding checked out by your Dr’s though. 

Nicola

I will get it checked out of course. Did anyone get bleeding form stenosis only that got progressively worse? I had no blessing until 14 months post treatment…. 

Hi BOOmz, for me just after treatment I was pretty sore passing bowel movements as you are raw internally. I don’t think the stenosis happened later as they were for me painfully tight for a good twelve months but the regularity lessened from five times a day to maybe two in the morning. If I didn’t keep the stools soft I would get the occasional spot of blood. Also sudden flare ups of soreness and swelling. As I said on my previous post I gently massage the area even slightly internally and my skin has massively improved. I started this after experiencing a hiccup of having really bad inflammation for what reason I do not know. I would always mention you have had some bleeding just so they have it in their records. My oncologist or nursing team have never come forward with any solutions for anal stenosis and they just think time will improve things.

Thanks Jaycee, I stopped using laxatives and softeners about 3 weeks post treatment and then just started again this week…. About 13 months later. No one ever spoke to me about anal stenosis, just vaginal and the dialators. So either the cancer is back and regional. Or more likely I think, the anal stenosis developed over time and now has become problematic (constipation, blood, etc…) I have a lot of discomfort and had pain once. l am absolutely going to try the massage and make it a priority. BTW I never said in my initial post, I was diagnosed just a few days shy of my 47th birthday (Oct 2021) my treatment was hard, morphine every two hours, passing in water, eye rolling in the back of my head pain and tubes and tubes of flamizine. But I healed quickly and got back to normal diet and life. Apart from a little less spicy foods, everything went back to normal. I think I am paying the price for it now. At least I hope it’s just stenosis….

I didn't even realize there was vaginal stenosis too until a long while after treatment, when my behind was starting to feel better and I could give the old girl any attention at all. I think my back passage was pretty tiny to start with, as I couldn't take the anoscope even before my diagnosis and had to get conked out for the exam. It's only worsened with time. I asked my gastro doc at my last appointment what could be done about it (no one has ever mentioned any kind of dilator.) She laughed and said the exams themselves will help, which I don't buy. For me it seems like as soon as my butt is healed from the last exam, it's time for another one and I tear open again. 

I do get occasional bleeding, and occasionally it's the bright red blood which is always more alarming. Thus far it's always stopped quickly. I hope it's just stenosis too, B00mz, and it probably is, but you won't get any surety until you get checked out.

Hugs

Suz