Bladder sphincter inflamed by radiation
Posted , 3 users are following.
My bladder sphincter is inflamed with the radiation. I have been using Ibuprofen eight hourly to reduce the inflammation for over 24 hours. Yesterday morning when I awoke after sleeping deaply about 3am and this morning about 5am I had very great difficulty starting at all. Other times if I am prompt I get started more easily with a poor flow. I don't know what the options are. I have read of others who have had treatment suspended because of side effects. That is my worst nightmare. Anyone experienced this problem. My rectum is producing excess mucus, otherwise the treatment seems to be going well. I have had 8 treatments of the planned 37. I am very alarmed and do not know what options if any there are. Are there any exercises that might help?
1 like, 43 replies
Dudley71081 georgeGG
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Well done my friend ! Brave you ! Already at session 9. Way to go ! Don't even think of quitting. Repeat : Don't even think of quitting.
Side-effects vary from individual to individual, but one simply has to soldier on regardless of the ( individually unique ) side-effects hand, one has been dealt.
In some ways Forums can be misleading. Personally, I've always been rather sceptical of those who profess to having no to few problems. What you have described is not really that much different in terms of onset and intensity to what I experienced, although my problems were in different areas. ( All quite proximate though, of course ).
Anyway, HYDRATION and WALKING ... Yes, hydration and walking ... will greatly help you to live with your present and any future discomforts. Also, PELVIC FLOOR EXERCISES are highly effective. And then there's DIET. Smaller meals but more frequently, With the emphasis on protein. Cancer cells can't re-grow after they've been nuked ( that's why it's the treatment of choice ). But healthy cells can and you need the protein for that regeneration.
Finally and not least, a POSITIVE MENTAL ATTITUDE.
Hopefully, your Onco/Rad suite will have a Nurse trouble-shooter you can talk to both openly and honestly, ( She will have heard it all before anyway ), and you can unburden yourself and receive support and encouragement.
Obviously what you are currently going through is an assault on the system and as I say, scant regard should be paid to the ' superhero' posts. The male ego is probably responsible for a lot of vicarious third-party suffering. ( Anyway, mustn't let myself get started on that ).
George, Dear Boy, you are going to be fine. I have asked The Highest Authority on your behalf and I received a firm assurance, that you are going to come through your treatments O.K. Believe in that.
Yes, it's no picnic. But, try to not over-analyse every symptom. The body does in time, adjust remarkably well, especially if the psychology of the situation has been effectively addressed. I.E. not losing sight of the very realisable gains, over and above the truly dire alternatives.
Very best wishes,
Your friend,
Dudley
Dudley71081
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Just take one day at a time. You'll get there.
georgeGG Dudley71081
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It is very good to hear from you again, thank you. I see you have quite written me off as a super hero. I should have thought HT was enough evidence but now it is certified by Dudley. WOW! fame at last. I won't need to keep trying. Ah! that's a relief.
Yes. no surrender. The trick is to manage the unexpected. The trouble is we are all first timers (no repeats allowed) and the observers as you say have seen it all before but each of us is a totally unknown entity - different sensitivities. different characters. Not a receipt for plain sailing. It seems then the '14 days' is part of the professional obstacle course we all have to negotiate before our pains need be taken seriously. I have been given nothing, but advised to try the occasional Ibuprofen. My wife is expert in the use of it and tells me it takes hours to work. Not much good if you are hopping around with your legs crossed. So I have been taking 400mg three tomes a day, the maximum dose. 200mg did nothing.
Yes water, lots of water inside, 2lr daily and with Winter upon us we will get lots of water outside as we walk. Diet yes, very important to have a better diet than formerly. I am fighting a rear guard defense against moving quickly to a hugely bad diet to be kind to Rectum. There are a few proven really good foods like cooked tomatoes and cucumbers twice weekly good, every day much better. Lots of ones that may be little better than marketing hype. Placebo effect comes at a high price. For radiotherapy egg, fish and chicken are back in. It seems that. egg is a daily necessity for cell repair. I got an app for my iPhone a while back to help train me in my Pelvic Floor Exercises. I reached level 9, the top level, last weekend. How about that? No exercise to get the sphincter open and I had not thought of the fond hug from the outraged Prostate. Ah well! If it gets worse I shall have to take a season ticket for the 3am session at A&E.
And a POSITIVE MENTAL ATTITUDE, puts me in mind of "Only when we Laugh" hospital TV Comedy Series. "I'm sure I am, l'm H A P P Y" sung in a minor key.
The management of the side effects is totally subservient to the achievement of the primary goal to which the whole exercise devoted, a cure. To cave in and accept the inevitable is to guarantee a degree of trouble that is very likely avoidable and in addition the loss of good quality life for himself, wife and family.
George
Dudley71081 georgeGG
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Not sure I was suggesting you fitted into the Superhero mould George. I know I don't. You may have misinterpreted me there ? But no matter, it's only semantics anyway. More importantly, just concentrate on transcending the whole exercise and each day reaching, a beautiful place in your mind.
georgeGG Dudley71081
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The langage difficulty was my making. Your note was perfectly clear. I like a bit of tongue in cheek. George
peter06554 georgeGG
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This is some thing you need to discuss with the team. my problems started after the treatment with bleeding and blood clots which blovked the the bladder. effs ediferently but afer 8 id be asking questirds
peter
georgeGG peter06554
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Thank you. Yes I was expecting some help before today's treatment. The nurse was not in the department. This happens perhaps two days a week. I find it a disturbing shortcoming in care. The patient is as vital to both safety and outcome as the staff. Guidence needs to be given before the treatment following the patient firat conceiving a concern.
As it happened, the treatment seemed to feal more benign. Was there a change? Was it just fancy? I prefer to know before the event.
Please also see my reply to Dudley, I will post it shortly.
George
Dudley71081 georgeGG
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As a man of Faith yourself, I know you will recognize why it was so. ' If a man love me, he will be loved of my Father and we will come to him and make our abode with him'.
Now that's what I call a standard of care !
georgeGG Dudley71081
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peter06554 georgeGG
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Im considerably further down the line from you but im impressed by your detrmination. One of the less positive situations is to project beyound the end of treatment. My diganoses in 2010 was Gleeson scale 9 and stage 4. I was given 12 months to live. In 2013 I was again given 12 months to live which is roughly about now.
The side effects of the radiation destroyed the lymth glads and created lyphomeda in both legs. Ive been on Abriterone for 18 months. its around £800 a week.The last three CT scans indicated the cancer has shrunk back and No new growths. However the steriods which go with the treatment creates Diabetes 2 and high blood presure. There is always a price to pay. retention of urine causes bladder stones and dispite all the issues probably ten years ago i would have been dead by now.
i agree the most important aspect is a positive attitude and a desire to stay alive.
georgeGG peter06554
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George
georgeGG
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Thank you all for your help and support. George
georgeGG
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I take a walk most days and some vigorous exercise daily. I drink about 2lr water daily. Almost 5 weeks of therapy to go.
Any ideas ?
georgeGG
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Well, necessity is the mother of invention. By 6am I was thoroughly brassed off, weary of pain. Then I noticed that when I gave up relaxing, yes it stopped. But when I relaxed again there was a brief moment of reduced pain. Plus tightening both stopped the flow and diminished the pain. It seems that preparing for a leek I do 10 firm pelvic floor clenches and then relax. Yes, reduced pain. As it builds up do 3 or 4 clenches and relax. Yup! not perfect but a whole heap better.
Any one found that to help?
Now, what dio I do about getting some sleep?
How do you mean "greedy"? OK, I suppose so. one step forward is plenty for one night.
Dudley71081 georgeGG
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Of course, I cannot know what your expectations of going through EBRT actually were; but if there is any consolation for you at all in knowing that what you are experiencing is pretty much par for the course, then I can confirm that it IS ... although conscious of your present discomforts, I take no pleasure in doing so. With more honesty and less bravura most of us would write much the same things. Our individual experiences differ only in the manner of one or more particular symptom's impact and degrees of discomfort thereby.
I'm not sure that doing pelvic floor exercises just before you try to void is a good idea. It is probable that at present you are not emptying your bladder effectively and to exert extra pressure on a full bladder would seem contraindicated. You might want to run your idea past the Med Staff ?
As they have previously commented, I would also be advocating relaxation as the more effective technique. Hot salt baths and water bottles helped me a lot. Also, perhaps 5mg of Diazepam could be trialled for a few days ?
Best wishes for getting on top of this.
Regards
Dudley
georgeGG Dudley71081
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My enthusiasm yesterday for pelvic floor exercises crashed today. I have found nothing to ease out the contents of my enraged bladder nor anything to subdue the pain that echos in the sloes of my feet. Thank you once again for being straight with me. The underplay of difficulties by the medics make me so angry and distrustful of them. They seem to play us like a fly fisherman plays with his fish, moving us on only when they think we are sufficiently ripe for it. What we need and what I get from the forum is the constant building up of realistic expectations and fortitude. I need to know I am like many, many others. Yes it hurts something cruel. Yes you will get little sleep. But we get through the treatment to the desired benefits. It is the false expectations that make it hurt and add uncertainty into the bargain.
Thank you again Dudley for your true friendship.
George.
Dudley71081 georgeGG
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Yes, the Medical Staff have seen it all and in general terms know precisely what we are in for. But in fairness to them and for example, in my case I would definitely have run more than a mile if I had known in advance what side-effects I was about to experience. I nearly did anyway just at the thought of possible ( read probable ) incontinence and impotence. As it was, I had already been pussy-footing about with worsening symptoms and PSA results for about eight years. And now, my five year survival chances are between 25% and 65%. Untreated, I would have been gone inside 12 months from about May this year.
I am not saying that trying to adopt a philosophical approach is easy, but it helps. And without medical assistance where would we be ? Living is hard. Dying is harder. Dying of untreated Prostate Cancer is harder still.
It's all relative and it helps to keep a perspective. Statistically today somewhere, a number of people will leave home and never return, being the victims of road accidents. Some will be children. We, are in our 70's.
Enough said I guess. Let's just tough it out and take pride in doing so. And give thanks to God, for all mercies received along the way; such as pain free interludes, a sunlit frosty morning, a nice cuppa, a good book, a faithful hound and ... all the wonderful things the World has to offer us, daily.
You really are doing pretty well so far George, it is understandably, just a little bit difficult to appreciate it at the moment. You will get through it all and the symptoms will abate post therapy. And you will live a longer and better quality life than otherwise.
georgeGG Dudley71081
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The only comparable pain I have had was a few years ago when having root canal treatment and the annisthetic did/could not deaden the nerve. Once we discovered that the dentist had to finish. It was like ... like ... my upset bladder only the blader goes on longer, much longer and I give repeat performances half hourly, hourly and if I am very favoured two hourly. Each one is a smash hit. Such, Dudley, is stardom. But why am I telling you this. You have been there yourself. I bet you you are glad you are through it and with no encore allowed.
georgeGG Dudley71081
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Dudley71081 georgeGG
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Now, try and get some sleep !
georgeGG Dudley71081
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Dudley71081 georgeGG
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georgeGG Dudley71081
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Dudley71081 georgeGG
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Irrespective of that, your body will the entire time continue to try and heal itself from the effects of the EBRT and once you've finished, you will subsequently experience incremantal improvements, weekly, if not daily. Any lasting local debility will be the result of collateral damage. I sustained some, but I'm not complaining ( nor suggesting vicariously that you are ).
What I was alluding to in mentioning sub -plots is that I have been diagnosed with an urethral tumour ( that was not there at all in March and which may be a metastasis but could be, radiation induced ), which is scheduled for resection on 3/12.
georgeGG Dudley71081
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Thank you for that full expansion. Today has been better, rather similar to two days ago. The Ibuprofen and paracetamol have kept the pain within my groan threshold except once this evening.
I am very sorry to learn of the urethral tumour. That is a sore blow for you. Of course the risk could have been avoided by letting PCa have its way, and you have said that was not at all am option you wanted. I understand you to have indicated that you are already of the credit side of that risk choice. Still, it does mean more unpleasantness for you.
George
I seem to have the beginnings of proctitis - mucus; loosish poo; feeling the need to pass poo when really all that was coming has come; poo feeling hot in the anus. If so I will open a new discussion for that. I would be very grateful for yuor tuition and advice in that too.
georgeGG
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Dudley71081 georgeGG
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Oh yes, Proctitis. I had it acutely for about 2months. Absolutely no fun at all. Try: warm/ hot salt baths, a wrapped hot water bottle on the lower abdomen. Proctosedyl ointment and suppositories. A Harris Dilator if you can get hold of one. Coat the tip + 1/2inch in Proctosedyl ointment. Add a v. small amount of 1% hydrocortisone cream. Apply for 30 seconds ( I.e. Insert it fully, you know where ).
Finally, swallow pride. ( haha ... Just kidding ! ).
Clean up self with cotton wool pads 1dry, 1moist.
Whatever else you do/don't do, don't allow yourself to become *constipated.
Use Gastrostop ( loperamide ) to limit number of motions, with *caution.
Avoid any iced drink and /or ice cream.
It does abate gradually ( over about 3 months in my case ). Still not back to normal yet, but ( hopefully ) getting there.
good luck.
Regards
dudley
Dudley71081
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georgeGG Dudley71081
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Thank you for all that information. I am glad there are good things in the locker if I need them. It would be great if this doesn't develop further. I did have the worst of the mucus when I was using the mini-enema jell. I use water now. It gives no side effects. Now two days for rectum to settle down. Anyway, wishful thinking is not much use in this business. Reality and education are the things. I just have to deal with whatever comes up. (and some things don't do they?)
Swallow pride! that went with the biopsy. Talk about getting shafted! ! ! ! I have no hangups about placing jells, creams, strange instruments just where they are needed.
Thanks again and wishing you a good outcome from your new O Oh!
George
georgeGG Dudley71081
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Dudley71081 georgeGG
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Rather than use an enema, either get your appointments moved until after your normal evacuation routine, or get up earlier and/or go for a walk to ensure you have at least ' been'. But for heaven's sake George I think you could safely can the enemas. To me, they sound like they're doing you far more harm than good. Certainly, the Rad Staff at my hospital said only consider an enema if you are not evacuating daily before atrending EBRT.
georgeGG Dudley71081
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In general I have found that my skin and me as a whole are sensitive to many things othes find benign. I am not surprised I have bad reactions. I just seek to manage them as best I can. I am in the habit over decades of paying close attention to my reactions.
Thank you very much for your kind attention and thoghutfulness. I am most grateful and appreciative. I thank our Lord who brought us together. Ultimately the outcome is his.
George
Dudley71081 georgeGG
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georgeGG Dudley71081
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the waterworks became too agonising and sleep in very short supply. I had a chat with my GP over the phone. When I described my symptoms she said It was very likely an infection. Dudley, you just don't want to hear this. The GP checked my hospital record for the results of the two samples I had given. No record. Nothing daunted she asked for a specimen and left a prescription for anti-biotics and a bladder relaxent for me at reception. So I started the new pills that evening, Thursday. There was still a lot of acute pain and lost sleep to come. Here I am on Sunday and I have relaxed. The more normal burning sensation has replaced the sharp OTP pain. I think at last I may discover what are side effects from the radiation alone.
Dudley71081 georgeGG
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I am very sorry indeed to hear about the currently acute nature of your side-effects. I was hoping on your behalf that someone as sensitive, caring and supportive as you are, would have an easier passage through EBRT.
Well obviously that wasn't to be. Under the present circumstances, trying to stay positive might seem difficult but the symptoms will abate once you have struggled through and currently you can take some comfort from knowing that, if this is the effect the radiation is having on healthy cells they are not aiming at ... then it has got to be killing the cancerous ones they are.
Don't give up.
Best wishes,
dudley
georgeGG Dudley71081
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Yes, many thanks. I have nowhere else to go. The antibiotics are working gradually. The daily cycle is eccentric so I judge progress by the worst and the best. The best requires self control to relax throughout until checking that my bladder is empty. The worst still has me groaning and moaning but with less intensity than a few days ago. Perhaps it does not sound much like progress but I belive it is. Perhaps the best indicator is that I relaxed for several hours today. I had not realised how tense I was until I relaxed. That is not a voluntary matter but the back ground physiology. In between p'ings I am comfortable. At best the interval is 3 1/2 hours. Shortest is 15 min - 10pm to 3am. That is in the part of the cycle when the pain is worst.
So I just have to soldier on through it. Just 15 treatments to go.
Dudley71081 georgeGG
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Relaxation does sound like the key to a greater degree of comfort for you. That being complimentary to : walking, adequate hydration, salt baths, the occasional hot water bottle, retiring early and not least, avoidance of both caffeine and cold beverages. Dealing with Prostate Cancer and its treatments is almost a full-time job, isn't it ?
Nonetheless It is good to know that you are determined to soldier on ( with the rest of us ! ). I and countless others on this site support and encourage you.
georgeGG Dudley71081
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Yes looking after PCa is a full time job. In overtime one can learn how to live with a catether.
Tonight I shall sleep. Only 14 treatments to go.
Dudley71081 georgeGG
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Thought I'd mention that I am having my urethral tumour removed tomorrow and so, will not be visiting the site for a day or three.
georgeGG Dudley71081
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I hope all goes well. I will look forward to you joining in again in a few days.
George