What if I can no longer have a BM or urinate?

[tummydepressed]

Hi all. I used to post on here a few months back. You were all very helpful and welcoming - I thank you very much for that.

I haven't been on for a while for a number of reasons. One of them, to be honest, is that even when I have had time to post on here and discuss our conditions, I have chosen not to. My pelvic floor is dragging my life down so much and taking up so much of my time, that I didn't want to give it any more space.

Now, however, I have to. Things are getting pretty bad and I could do with some advice. What I can give back, I will!

To summarise, I have an extremely high pelvic floor. This has been shown through Biofeedback and on a proctogram. My doctors believe I have subconsciously drawn my pelvic floor up over the years, but I feel there is a good chance I have nerve damage.

Main symptoms are that I cannot defecate properly, I struggle to urinate and also have a lot of pain in the pelvic floor areas. All my life it has taken me at least thirty minutes to have a BM and even then the evacuation would be incomplete.

Now things are getting worse. My typical routine is this:

- Get up early (6.30am) to eat in plenty of time and generate some peristalsis. I will have a BM before work that will take 40 minutes and that brings on lots of pain
- Arrive at work not feeling fully evacuated and with pain in rectum/pelvic floor area. Sit at my desk for 2-3 hours until things subside.
- Go home at lunchtime for another BM that will take 30 minutes. Intense pain afterwards
- Return home at 6pm after work, have another BM. Typically quicker, less painful and doesn't always result in the passing of stool.
- Before going to bed, have another BM taking 20-30 minutes. Can be quite heavy and leave me in pain.
- BM's are always messy
- Never form a solid stool - it is almost like a paste
- Sometimes I suppress the urges, but this seems to constipate me
- Frequent urination throughout the day, but never feel completely empty.

It seems that my pelvic floor is getting tighter and tighter. Certainly the pain has increased. Therefore it gets even harder to evacuate, requiring more attempts?

My concern is that my pelvic floor will become so tight that I cannot have a BM at all or pass urine. I would just like to ask what happens in this case....... Would I require a stoma (bag) for instance, to make sure wasted was extracted from me. I was hoping some of you may have known given your collective cast experience.

Big Thanks in advance! J

PS I am a 38 year old man who sits in chairs for long stretches of time.

[calluna]

Hello J

I would like to reassure you - you will not need to have a stoma. That is definitely not going to happen. There are many many ways of managing this particular problem - think about people on stroke wards, for instance, or paraplegics, where there is no muscle control at all - in fact the muscles may be in continual spasm.

I would urge you to go back to your doctor and ask for more help. Biofeedback in particular can make a big difference, and there are lots of other factors which can influence this, ie diet, massage, exercise.

You might also find hypnotherapy useful - specifically, clinical hypnotherapy. I am in the UK and could make recommendations for therapists here.

[tummydepressed]

Thanks Calluna - you are so kind.

So do you think the hypnotherapy would work, because it would relax me into lowering my pelvic floor? That would suggest I don't have PNE but that this is somehow psychological. To be honest, I wouldn't rule anything out, I just know that the problems and pain are very rail.

I should have pointed out that I have tried several forms of medication... Movicol just made me stool even paste like, psylium bulks my stool up and makes it hard to pass... I am currently trying Aloe Vera, which is early days so wont comment yet........

I think I obviously have something in association with my pelvic floor problem.... My stool is a mess and get so much stomach pain, particular in the solar plexus region; I thought because I push to hard. But I think I have something like GERD, IBS OR IBD/IBS!

I also cannot stop urinating, so maybe IC.

How did you survive Calluna? Its all I can do to hold down a job at the moment.... Sorry this is so self indulgent.

J

[calluna]

Not to worry, J - you are not being self indulgent, you are just trying to find a way through, as are we all.

I think that hypnotherapy might help because it can be very effective in helping with relaxation, and muscle tension is a major part of your issues, from what you say. However - because a psychological technique helps relieve pain, this does not mean that the problem is psychological in the first place, please don't be concerned about that.

For instance, in my case, PN was caused by damage to the nerve during surgery. But with chronic pain there is always a psychological element - and personally I've had a lot of help from both CBT (cognitive behavioural therapy) and also from using a relaxation CD made for me by an ex-colleague - I used to be in private practice as an analytical hypnotherapist - I did also do some clinical work.

I really would urge you to go back to your doctor, though. You've had some biofeedback assessment - can they not offer you some ongoing support?

[HerMajesty]

I have always had excess urinary residual, but I was never given an option except for self catheterization...that was unacceptable to me because my whole issue with the excess residual is that it led to frequent bladder infections, and I believe self cath would increase not decrease risk of infection.
Then I went to get Tarlov cyst surgery, and I guess being totally unable to urinate and / or excess residual is very common postop for that surgery, so Dr. Feigenbaum routinely prescribes Flomax. I think it is generally given to men who have trouble urinating due to prostate issues, but apparently it does work for women who have neuro trouble with emptying their bladder as well. I couldn't take it, it made me sick - but that is very rare. I looked up my side effects and they were experienced by only about 5% of people in clinical trials. Dr. Feigenbaum was surprised because he had never had a patient before that did not tolerate it well.
But anyway, the point of this reply is to say that while I don't have experience with the bowel issue, you might want to ask your GP or see a urologist about trying Flomax. It is the only short term solution to urinary retention i have heard of aside from self cath. Of course long term the solutions are such things as biofeedback and pelvic floor PT to relax those muscles, but in the meantime it would be nice to be able to urinate properly.

[nyt]

Has anyone suggested trigger point injections into the pelvic floor? Doesn't necessarily have to be botox to start with. Epsom salt baths can help relax muscles due to the warmth of the water and the magnesium content in the Epsom salts. Certainly a good plevic floor PT evaluation and suggestions on self internal massage might help. "Healing Pelvic Pain" and "Headache in the Pelvis" are both good reference books for pelvic floor stretching exercises and self massage. Has any dr. recommended a muscle relaxer of any kind? I am so sorry that you BM's are so painful. You might want to try a relaxation tape while you sit on the toilet to see if that can help distract you. However, the good news is at least you are able to go every day! Keep us posted on what the dr.'s have to say and your progress. A big hug sent your way.

[Violet M]

Hi J,

I think you are onto something -- if PT isn't helping then you have to ask what is causing those muscles to stay in constant spasm which leads to the chicken and egg question that has so often been asked on this forum. Which came first the muscles in spasm impinging on the nerve or the nerve being damaged or irritated by other structures such as tight ligaments, etc. and the nerve pain causes the muscles go into spasm?

If it's PNE you are dealing with I think it's unlikely that you would need to have a colostomy. I know there are people who have had to give themselves enemas in order to evacuate -- others have tried colonics which cleans you out higher up. But if PNE is the problem these are all just treating the symptoms, just as biofeedback and myofascial release are -- they aren't fixing the real problem. So, maybe it would be worth it to have an evaluation by a PNE specialist just to find out if it's PNE you might be dealing with.

I used to suffer from chronic feeling of not being empty -- bowel and bladder. PNE surgery and regular use of magnesium citrate have improved quality of bowel and urinary symptoms immensely. I'm not saying that's the answer for you but it's something to consider.

Best,

Violet

[tummydepressed]

I have just seen all of your very kind replies.

I don't have time to reply properly now, as I need to sleep! But I just wanted to say thanks to all of you.

I will come back on tomorrow or Tuesday!

Thanks again, J

[tummydepressed]

Hello all. Again, thanks for all your feedback.

Unfortunately, over the last week things have got worse. The amount of time I am spending try to get empty is ridiculous. It has got to the point where I get off the toilet, walk around for a bit and then try again.

The fact that I can sometimes pass more stool when I sit back down, after a matter of a couple minutes, really bothers me. How can I ever get, or know if I am, empty!

To be honest it feels like I have lost all feeling in my rectum apart from pain. It always feels like I need to go, but lately very raw as well, like it has a cut. I don't believe it has, because the pain is 'inside'; you all know what I mean - inside the tissue area, not the actual rectum itself.

You have all made some really interesting suggestions, and I am prepared to try anything. I am going to contact my bio-feedback nurse, she was trying to find me help closer to home, but I think she believes I am a bit of a difficult case that might not be easy for anyone to solve.

Do you mind if I ask some more questions, some of which is based on things you have said..?

- If I continue to keep trying force my bowel movements, can I tear or damage something? Sometimes it feels like I am going to burst and I have gone dizzy. Should I have not prolapsed by now?
- Is there a medication, maybe the magnesium citrate, that just makes stool softer but doesn't encourage bowel movements? The stuff I have tried, Movicol, Aloe Vera etc. just makes me want to go even more, perhaps because I have another complication. I think this is a problem because it requires more exertion by the pelvic floor. It also makes me feel sick!
- Hypnotherapy sounds interesting! Would I have to go private for this?
- Does anybody else get pain that shifts about... mine is currently just to the right of my rectum, in the tissue area, but has been all around that area.
- Is there a decent pain killer I can take that wont constipate me! Do many of you take pain management medication?
- Do many of you have pain elsewhere? After every bowel movement my sternum feels inflated and very tender.
- Does anybody else just have predominantly bowel related problems? Also with food..... do you feel like bloated and like a BM after every meal?

Phew, that is a rather a lot, but any suggestions would be most welcome. Sorry to use this as an advice line.

The thing that really gets me is that every morning I start afresh and feel hopeful. I don't have pain first thing, just that gentle sense that I need to have a BM - the one that everyone gets.

All the time I delay it, I have no pain. That is why I like weekends, no rush to go before work.

But the minute I go, the pain flares up...... in my pelvic floor and stomach. Passing stool causes the pain throughout my digestive system! It is just ironic because in most illnesses, a BM would give relief!

Thanks again all.
J

[Violet M]

J, have they ruled out other causes of bowel disease such as colitis, parasites, candida overgrowth? Could be you have more than one thing going on. Just brainstorming here. My understanding is that straining is not helpful to the pudendal nerve and other pelvic floor nerves and muscles. Topical pain meds would be less likely to cause constipation but I don't know if they would reach the areas you need relieved.

Violet