ANAL FISSURE AFTER RADIOTHERAPY

Sarah

The procedure is being done under GA and if they can they are going to try and band two large piles at the same time that I have had since radiotherapy nineteen months ago.  The consultant knows how apprehensive I am that the skin will split and said any treatment will be conservative.  That's why I am hoping he is the one who will be carrying it out!

I will remember all your comments about a colostomy Sarah.  I don't have excessive pain but I am always extremely tender and cannot forget to take Laxido every day as my stools have to be pencil-thin.  Constipation is my worst nighmare!  But I lose half of every day because the whole morning 'process' takes so long, and because I have taken Laxido can't risk being out and about as I have real urgency when I do go.  I am hopeful the stretching will help, but the consultant did warn me that because there is scar tissue it will contract again unless I continue.  The mind boggles.  Ah well!

Irene xx

That’s a big impact on your life Irene, losing so much time on your morning routine. Anything that can help with that will be a real benefit I’m sure, But like you, I’d be very apprehensive about the surgery-with just cause, given your fears of skin splitting.

I’ve  never once needed to take Laxido since I had my colostomy, although it was prescribed after I had my gallbladder out last month. Told them not to bother giving me it but it was still in the bag of meds when I was discharged! Never needed Loperamide either for the other way, although I’ve had some spectacular explosions over time! You have no control with a stoma, so if it’s going to come it just does. But I can eat and drink anything I want to-no restrictions. 

There are no nerve endings there, so it’s never given me any pain either. I found I adapted very quickly to it, and the fact it can’t ever be reversed isn’t an issue for me as I’m so used to it.I can understand why some might be fearful of having a stoma formed, but since it was lifesaving for me, I’m glad it was possible!

Sarah xx

Oh Beth,

How awful to still be in this much pain after all this time! This is one of my worst fears. 

A colostomy would be WAY better than this. 

I'm livid that no one has had time to look at your scan since SEPTEMBER. Grrrrrrrrr. 

Hope you get way more information and possibilities for relieving your constant, unacceptable pain after today's procedure.

Hugs

Suz

Hello Nicola, thanks for getting in touch. On the day they told me I had anal cancer I said I didn't want chemo/radio, but I wanted surgery the answer was  "oh no, that's much too expensive" so that's been the attitude ever since - my pain has never really been considered by the hospital, but my GP has bent over backwards to try and find a solution to my pain, but unsuccessfully so far. The new oncologist just wanted the same as the previous one - another colonoscopy, but under GA, just "to be sure there was nothing sinister" going on. Never mind all the extra pain & suffering it would cause, I feel it was just to cover their own backs.

The actual procedure was fine, all the staff were wonderful, quite unlike the oncology team. Yesterday was ok so I did bits & pieces I had to do, but today has been so pain filled because the anaesthetic has worn off it's been very difficult. I said all along I didn't want the procedure because I was in so much pain already, but was pushed into it, but now it's done I can hopefully try and jog along as I was before and manage the pain as best as I can. They did say there appeared to be nothing untoward and took a biopsy, the result of which will be known in two weeks or so. 

So that's the situation atm, no suggestions as to why I'm in all this pain so long after the treatment has finished & no offers of any help with the pain, so I rather feel the whole exercise was a waste of time & money. B

Thanks Suz so much. Have a look at my reply to Nicola to see the current situation - no further forward at all. B x

I’m so sorry you’re not getting any answers & your treating team seem so uninterested! Has anyone ever mentioned Pelvic Radiation Disease to you? This is the link to the Pelvic Radiation Disease Association website, have a read & see if any of the symptoms fit, https://www.prda.org.uk/what-is-pelvic-radiation-disease-prd/, I know this doesn’t help with relieving your pain but it might give you some insight as to if this could be the cause of your issues. 

Nicola 

Hi Nicola, yes I've looked at the PRD site - very interesting. I did mention it to one of the surgeons,but they don't seem to be aware of it! I think some of the problem might be that if it's acknowledged by the NHS it's likely to pave the way  for claims being made & that's the last thing they want. 

B

Hi Beth, I’m 28 months post treatment and still can remember how painful my fissure was. I was around 5 months post treatment I passed a rather larger stool than normal and I can fully empathise if you have one. I visited my GP as I was in constant pain and after examining me he said I had a fissure. He prescribed a gel that has to be made up by your pharmacy which contains nitroglycerin which for some people helps heal fissures in six weeks. I couldn’t use it as it gave me incredible migraines so much so I had to go back on morphine as over the counter medication didn’t do anything. I started taking physillium husk to ensure my stools were alway soft. The only cream I ended up using was Vaseline and lots of soaks in the sitz bath. It did eventually heal. When everything was good down there I started using a few drops of tamanu oil with a carrier oil and massage everyday to help the skin with elasticity. That was a vast improvement and passing stools became painless. The tamanu oil is famed for its scar healing abilities and I still once or twice a week use this to keep skin supple down there. I hope you find something to help with your pain and sometimes it needs a good listening ear from your oncologist and some sensible investigation on Google for skin tips which I did and would relay this to my team.

Hello Beth, 

Im sorry to have missed this post but I’ve had a break from being online as wasn’t feeling my best but better now so thought I’d pop in with my 2p worth! Ha ha. 

Same as you I have terrible stenosis. I’ve had some tears since the treatment finished (nearly two and a half years ago now). My colonoscopies are now done with a child’s scope. So always ask for that if there’s a next time! Diltiazem hydrochloride is the cream they gave me for any anal fissures / tears that have occurred which I found helped brilliantly. 

However one kind radiologist organised some Instillagel for me. She literally changed my life! Instillagel is a pre filled syringe of anaesthetic gel. Dont be alarmed, it is not a needle syringe just a plastic tube with plunger for getting the anaesthetic gel up in the right place! I find the best way to use the Instillagel is to take a little bit and rub it around the opening if you’re especially sensitive, give that a few seconds to work before putting the syringe part inside (it’s small so don’t panic) then you can just whoosh a little bit up inside and bingo, pain free bowel movement or pain free if you’re just having some pain up there! It isn’t a long term anaesthetic so you’ll need to use as and when but it has been indispensable to the quality of my pain control. It gives you immediate relief. 

I also mentioned in a previous post about stenosis which I had in the rear passage but also vaginally  I bought some great silicone dilators that were much softer and more pliable human the NHS ones  I used these initially for the vaginal stenosis which helped so much. Months on we realised the stenosis in my back passage was getting worse and worse, stools like pencil thin. Every bowel movement was agony! After a check up with my onco we realised that the scar tissue was continuing to build up. Usually there is an option to have this stretched under anaesthetic but my skin was so delicate we decided it just wasn’t feasible. So with my onco’s approval I used the silicon dilators with the Instillagel (starting with the very smallest one which is basically only finger sized) and working up and lo and behold I have managed to ease things up enough that whilst my stools are narrow it’s is SO MUCH BETTER! Plus I could do it at home in a relaxed environment no embarassing prodding and poking (I think we’ve all had enough of that ha ha) and at my own pace, under no pressure. I no longer need the Instillagel and just use a bit of lubricant  although I note in the  lovely Jaycee12  post she mentions Tamanu oil and it’s wound healing and collagen producing properties so I’ll definitely be getting some of that!  Now you may not be ready to do this until things have healed a bit more but it’s a tip to bear in mind when you are ready  

I too lose days of the week to the joyless task of bowel shenanigans! I’m either constipated and have to take something which then in turn means a day or two of staying near the bathroom, or frankly just camping in there! I do wear the pull up Tena pants. God I hate them but when the alternative is a stoma which I know is my only other option, I’m just not there yet. I remember the first time I pulled a pair on, I just sat and cried. I suppose I was crying for the old me before all this. I’m 53 not 103 I felt! But good lord they’ve been a godsend! When I’m constipated it’s fine, I’m safe to roam free but hence I’m not have absolutely no tonal control at the back however near a loo I am (which reminds me I need to request the special card you can get which means you can get priority to use any loos!). Anyhoo, back to the pull up pants malarkey… they ease my worry about being “caught out” and that’s key to helping my mental health with this. It’s bad enough the constant worry we all have about what if the cancer returns… what we need to do is get the right doctors and team around us to help make us have a better quality of life. It won’t be the same life admittedly but we can make it better.  It’s what this forum is incredible for. All of us sharing knowledge and tips. I couldn’t have got through this without these amazing people! 

I hope you’re feeling better and that all of this info is not too overwhelming but that you can pick and choose what can help you. 

Beat wishes 

PPR x 

ps meant to say when I had my last colonoscopy they snipped off two polyps, all absolutely fine and no side effects afterwards! 

Hi Jaycee12  just wanted to ask which Tamanu oil you could recommend? Thank you! X