Up and down

Hi Jaycee12  you're still in the early days so this all sounds completely normal. For quite a while post-treatment, the mornings were pretty much off limits for me going anywhere, that was my 'toilet time'. I didn't venture out places until the afternoon and if I was on a 'runny' day I would take Loperamide an hour or so before going out.  When starting back at work 3 months post-treatment, I would take an emergency bag in the car with wet wipes, toilet paper and a bag to go in at the side of the road if I had to (fortunately that never happened). There is also the option of wearing pads whilst going out just to give you a feeling of security in the event that you need to suddenly go and there are no toilets around.  I got my pads from the District Nurses, you can contact them via your GP surgery. I didn't find them particularly comfortable though although it's worth a try, I think the ones I was given may have been a bit too big. Diet has a large part to play I think. I have noticed that when I limit fruit, veg and caffeine I definitely need to go less. Different foods affect people differently. Try to introduce some variations to to diet, keep a note of what you eat/ drink  every day and see if this changes anything.  I know it's frustrating but it does improve with time. At first, I was going to the toilet up to 7 times a day, making me very sore, this didn't last. 

Well done with the dilators!  I haven't heard anything about the type offered by the NHS being unsuitable, for me they were fine. You could have a look around online and see if you can find anything you prefer. Do try and persist with them, using them regularly makes a real difference,  Bev. 

Thank you for your reply. I think a food diary might be the key. I only drink decaf tea and coffee now and plain water the rest of the time. I do limit fruit and stay away from citrus fruits but do eat various veg and salad. Bottom very raw at the moment so trying to put the flaminal in the fridge. I think it’s taking me longer than I expected and maybe just a bit ambitious with recovery. I have good days and think I am now okay and then seem to take two steps back! 

Hi Jaycee12  I am not a particularly patient person and just wanted everything back to 'normal' asap after my treatment.  We have been through some quite extreme treatment so it does take quite a while for the side effects to reduce. Bear with it, you'll get there.  Bev 

Hi Jaycee

I am so sorry to hear that you are going through this right now, especially as you probably expected to be much better after six weeks. I am two weeks behind you and have been experiencing the similar problems you are having with needing to go to the toilet multiple times. The more you go, the more it hurts and the soreness seems to become so raw.

If you can limit bowel movements it really is so much easier and the pain starts to subside.  I have found that if I do a bit of gentle jogging early in the morning, this really does help to get things moving. This is something that I would do normally. I am lucky to have the space downstairs to do this as I wouldn't have the courage to venture anywhere at the moment. You really don't need much room to do this though as the movement and gravity does tend to work quite quickly. If I go to the toilet before doing this, I will produce a small amount of stool but if I can hold on and do a bit of jogging, I am able to produce much more, therefore reducing the number of times I need to go. While I exercise I have been practising holding my bottom shut as tight as I can and then releasing, which seems to be giving me a bit more control now.  Also once I have finished exercising I tend to have a few hours before the next movement. It may be worth a try.

I have been keeping tabs on what I eat and there doesn't seem to be a pattern as yet. However, I am still taking painkillers and stool softeners, which do change things around. 

Well done for getting out and managing to feel more like your old self. It really is quite stressful worrying about needing the toilet and coping with accidents. As 1In1500 has said, I think being prepared is a really good thing. Do you have a radar key? I have one and it is quite reassuring knowing where the toilets are. There is an application that goes with it which shows the toilet locations. They have much more space as well as a sink in the cubicle so it feels more private. My local Asda has one and I have used it a couple of times.

Try not to let it get you down and focus on things you can do to make you feel better. Keep your mind occupied and be positive. Go out when you can and enjoys those periods of near normality. You have gone through the worst, so it should hopefully start to improve soon.

Serena x

Hi Serena thank you for those tips! I know that when I do my first bowel movement and start cleaning up and putting on my cream I suddenly start to want to go again. It’s so annoying isn’t it? I will try jogging on the spot very gently. I am also trying to do some simple yoga stretches to help relieve a external pile which becomes so sore after a bowel movement. I’ve tried numerous creams full of promise but just think my skin just won’t tolerate them at the moment. I might just try what Nicola uses and get some aqueous cream. If I can get rid of the soreness I am sure I would be so much better. I am still on morphine but a relatively low dosage and ibuprofen and paracetamol when I need to top up. I came off movacole  laxatives and trying a small glass of prune juice which may be the reason for the increased flatulence! I can remember when I was four weeks post treatment and not in a very happy place then as the skin was not happy! I was told my skins reaction was normal to what they expected but was taking a bit longer. I have a opticians appointment Wednesday but made sure that was in the middle of the day so hopefully that will be okay. Yes it’s wonderful to get out a bit and feel I have been in hibernation for too long. They told me to kind of isolate during treatment but understand some carry on working whilst they are in treatment so it’s so confusing.  This site is a valuable asset for information and ideas on how to cope through the journey of healing.

Jaycee,

You described my situation perfectly. My bowel issues seem to be in the morning. I can go several times, one after the other. The afternoon is a little better. I’ve been keeping track of what I eat but I haven’t noticed any pattern, other than salads, they are off limits for me right now. I’m taking a few months off work and hoping things will get better when it’s time to go back. Best of luck in your healing.

HI Jaycee

Good luck with the jogging and yoga and i do hope that you manage to relieve the soreness a little. I had a much better day yesterday and managed to get away with only going three times. Went all night without a BM and just one  this morning so far. The difference to the pain is very significant as the soreness level has really gone down today. I have been managing to have better control, and try not to panic whenI think I need to go as the feeling can pass if I don't stress too much. i am starting to think that it could be a bit physiological as it's pretty much the first thing I think about each day and the constant worry does take over a bit. I have been trying to keep distracted with work and have been arranging things to do with family and friends to look forward to and it seems to be helping. When the pain subsides a bit it really does make such a difference. I think it's a question of trying to work out how you can cope in your own way. Hopefully you will get a bit of relief soon Jaycee, and I am so sorry that you have a nasty pile to deal with on top of it all. if you can manage to reduce toilet frequency let's hope that things will settle down for you soon. Take care.

Serena x

Hi Serena thank you for your tips. I completely understand about the relaxing part when I go to the toilet and can feel myself tense up. I try and let things go and do some breathing slowly. One time I think I was breathing too deeply and my head spun round ha ha. I stopped the movicol and tried drinking prune juice but don’t think that was ideal so gone back to movicol. I am still on morphine which can easily make me constipated. Today I have been doing some light cleaning of windows and lampshades and walked to my local chemist which is about ten minutes away. Pottering around helps but have to watch I don’t overdo it. I am going to do some bowel pelvic floor exercise to help with things which says you should do up to ten times a day! My skin is fine externally but sore inside I think. The external pile is a result of surgery before my treatment and that is really a nuisance as it gets itchy and sore after bowel movements. Just pray that these become less pain in time. Julie x