Obstructive defecaction. Really struggling with life.

Hi Susan thank you for replying.Yes it was the colorectal consultant who said nothing can be done surgery wise. I had the camera up the bowel and they seen something and thought it be a prolapse/even said next time I see you it be for surgery.I had a xray done on the bowel which showed I don't empty properly, also a small rectocele and bowel descent. I was told my stool will always get trapped and I will just have to cope with that. I told them I can't cope no more, I never go out. I can't go back to work because of this. I would actually jump at the chance of having a stoma bag the way things are going. Don't think they would offer me one.

Thank you for your help I have found Annie post.

I am just having a very hard time coping, crying all the time I can't even hide how I feel anymore from my family because I am so emotional about it all being told to just get used to it by the colorectal surgeon. I think I do need to see a different surgeon or demand they run other tests, even the same as I already had done as my problem's have got worse over time since.

Ruby I’m sure your very emotional and that’s to be expected. I can’t imagine trying to hide ur feelings. Stress is a huge deal when it comes to these issues, holding your emotions inside will make things worse. Your life is important, don’t take no for an answer from the doctors, demand better care. You can always vent here. Take care and keep up the fight 

Thank you for your words you are right! This is my life and I feel the doctors are the ones not doing enough to help me.

Hope everything will get better for yourself too. I am sure I be back here to vent the next coming weeks.

I tried suppositories and work great but don't want to make my matters worse if they not willing to do anything surgery wise.

What kind of surgery would you say is available. Thank you

Hi, Thank you for asking. How are you? I am at the doctor's next week and seeing the physiotherapist. I am feeling better in myself, trying to stay positive that my life won't always be this way.

I happy to hear that you have appointments next week, it always helps to have something to look forward to. 

I’m hanging in there, I’m counting the days until surgery, 17 days to go. I know that the days ahead are going to be hard but like you said it won’t always be. Trying to stay positive!

Good luck next week hopefully you will get some answers.

What surgery are you having? 17 days will fly, keep yourself busy if you haven't been.

I never get answer's just more confused professional's lol. Hopfully that change.

I’m having a resection and gallbladder removal. I’m trying to stay busy but it’s hard to do most anything due to my pain and being medicated most days. That’s why I spend so much time here. 

You can read my story if you want at

https://patient.info/forums/discuss/waiting-for-surgery-my-story-618392 ;

 

Try this one sorry, it was the ; 

https://patient.info/forums/discuss/waiting-for-surgery-my-story-618392

 

It's nice your supporting people during your pain, I tend to feel sorry for myself instead

Hi Ruby Ive just seen this but had to reply i think the consultant really needs to be doing more for you! There will be surgery options but maybe they should be looking at other options first. The specialist nurse i was referred to for my biofeedback took care of me in regards to trying to sort out things symptom wise. I was put on medication for bladder incontinence and started on rectal irrigation as i struggle with constipation and i too struggle to empty my bowels. 

I felt initially when i was diagnosed that i was given no information about my actual diagnosis and things in regards to surgery and other treatments just seemed so confusing. I now understand that despite being 27 years old in a same sex relationship with multiple chronic health problems and no desire to ever have a child as i it just wouldn't be possible. They only want to do surgery like this when you have had kids and are past the age of having more as surgery has a shelf life. So get talking to your nurse and ask about all the options available for you to try to help. Biofeedback can really work you just have to give it time and practice! My pelvic floor was not moving at all it was just gone and now after 9 months of treatment i can do 6 second holds and i dont need the machine anymore. Things don't happen quick but they do happen just stick with it and ask questions....all the questions! Sending hugs your way Xx

Hi thanks for your reply.

My treatment hasn't been the best tbh. Like you I don't feel like I was giving much information about my diagnosis and confused. So confused I can't even explain what I apparently have wrong with my bowel.

What kind of rectal irrigation did they put you on?

I have biofeedback with physiotherapist not all the time she seems to talk more than anything (waste my time).

My pelvic floor lifts and I can hold too. Thats amazing how you went from not having a lift to now holding as long as you can. I been told I get the machine to help me with my pelvic floors (never got it). Had alot of empty promises.

I'm done with having children, now I know damage done I don't want to make it worse. As for my rectocele they don't feel its bad enough for surgery also I don't have bladder incontinence

I totally know what you mean i couldn't realy tell you what is going on with my bowel and why it has happened either they dnt like to explain things very well do they!

I have been started with the Qufora irrisedo mini for the rectal irrigation. In regards to the machine for pelvic floor exercises i was provided with one to use was this not the case for you? I was told there was no need to buy one. 

What would you say is wrong with you?

I never had a machine to help me with pelvic floors I been offered one then never giving one. I got told to buy a femmeze instead, to help with bowel movements and rectocele it really didn't help lets abit of air out my bowel if anything. Maybe I didn't use it properly.

I never had qufora irrisedo might be worth a try for me too.

Pester them until you get given a machine! They worked wonders for my pelvic floor! Definitely worth asking about the irrigation I'm sure it can't hurt. I have a rectocele, a rectal prolapse and stage 4 intussusseption. I also have both bladder and bowel incontinence as well aschronix conconstipation why I have all this at only 27yrs old no kids i have no idea maybe I'm just lucky. I am not given much info from docs and they like to keep it that way! They are as vague as possible. 😑

Just looked what this is and I must be a genius or resourceful since I created my own device that's similar. I purchased a baby nose asperator(not sure it's called this). It's what we used for baby to clear nose out before they learn how to blow. I fill the bulbous part full of water and insert it in my anus maybe do it two full amounts. I lay down and allow the water to stay in me for 5 min. When I try BM it helps me go. It's probably healthier than a enema and I am able to take it places if need it. Try if u want. 

Definitely a genius they look pretty much the same and probably a fraction of the cost. =)

Yup and u could reinsert a few bulbs full of warm water if need. I keep in a closed sippy cup for bringing along places. Fits in my bag. Even public toilets u can discretely use. I have. 

I think I need to because my physiotherapist keeps forgetting things shes promised only thing she remembers is to write a letter to get rid of me.

Thats quite alot to cope with, how do you manage?

My problems existed before having my daughter but got worse afterwards.

I have one of those sitting in the draw lol. I have to try it out.

Also try suppositories sometimes, they are really good.

Do you think you would request someone new if the physotherapist isnt being up to standard? It is an option if she doesn't pull her finger out as it shouldn't be her priority to get rid of you she needs to actually deal with what you have going on and do her bloody job! It would be interesting to see what she is including in the letters to your doctors about the treatment she is providing you. It might be worth requesting a copy of them.

Sorry to hear your problems have been going in for a while, i can imagine having a child has made things a lot worse. I have a lot of health problems and these are just a few so I'm kind of used to it. I just can't work and i don't really leave the house very often. Xx

You have more health problems than your bowel issues too? Is this down to your bowel problems?

I'm exactly same. Don't work because of my health, don't leave house. I suffered mentally for the last 2years because of it.

I never get to see the letters so would be interesting to see what they say. All she does is talk in the appointments and I am finding I am just repeating everything, every appointment I cry (thats what happens when I have to talk about my bowels).

She sounds so terrible is this through the nhs? If so you should make a complaint to pals they are really helpful and would be able to get you some better help quickly. It is stressful enough going through all these issues without having a useless physio!

Yeah I have chronic migraines and cluster headaches, trigeminal neuralgia, chronic muscle and joint pain and muscular deconditioning( kind of like fibro but caused by my chronic pain) I do struggle with mental health issues too( ocd, anxiety, depression, dermotillamania) but since my health has been so bad my mental health has actually been better its like i dont have capacity for more stuff.

Im sorry to hear your mental health has been bad the past two years i understand how difficult things can be. If you ever want someone to talk to feel free to PM me. i know how isolating this can be Xx

 I agree that this therapist is not what you need. Talk is fine but she supposed to be doing physical therapy. Mine inserted her finger up my you know what and gave me breathing and relaxing techniques. I only went once and I now have to continue for the next four visits to help even more. So far I'm breathing and trying to  relax but I still take an enema every day to get myself relief. Again I know that's not the best thing but that's the only way I can leave the house. It's just a water bottle enema with hot water. Feel so good to get myself clear of what's in there. Get another physical therapist. 

Its probably because you got so many other things going on you focus on that. Such a list of diagnosis you have too.

Not sure who PALS is? She really annoyed me last time I seen her. She is well aware she is the only person who is dealing with me atm and she talking about discharging me, even though my pelvic floor strength is not good, strangely worse. I used to think she was the only person trying to help me now I realise shes doing a terrible job.

Is very isolating, I always preferred my own company lol. Think its just hard as I struggle being around people as my confidence is non existent

Is that biofeedback yout having? I not had it for over a year now. Do they tell you your relaxing?

One thing mentioned to me was I haven't got a good release but do relax.

Also I'm considering enemas for long term if nothing else can be done. I been offered them in my appointment with physiotherapist.

  Yes it is biofeedback but I only had one session so far. The doctor said I'm very tight in there and when he said relax there was no such thing. I have pencil thin PMs and pushing does not help. Now I'm trying to breathe and relax my stomach muscles and not hold my breath when I go. Help somewhat but I still have to do a daily enema once I'm done trying.  I do get so mad on my own but not enough. I don't care if enemas are addictive it gives me relief and I can then go to my day. Again I only use water bottle enemas.   If you cannot do a day in your life then go for the enema. Also work on relaxing and trying to go naturally. Get a different physical therapist. 

Do you have a bend in your colon or is it normal?

The way they described relaxing to me was breathe in and then out.

My bowel just feels stiff like doesn't move.

I do need a different physiotherapist she also never give me biofeedback I actually been to a different person for that. She also is going to lie to the surgeon and say I had it. Kind of getting the feeling she wants to stay clear of my bowel ever since she found out I have mucus, like she is going to catch some bowel disease from me.

I like to use suppositories to finish off my BM (just like a enema)

Think I go for enema because I'm fed up now.

PALS are the patient advice and liason service there for when you need advice on your treatment have a complaint etc. Wait though i just thought where are you based?

I too prefer my own company but i think when you lack confdence it's more of something you just learn to enjoy because the alternative is just awful. Speaking to actual people no ta! haha

Have you tried any of the fibres that help with bowel movements like Psyllium husk & Konjac Fibre? Ypu consume both of these with 1 -2 glasses of water and the fibre retains the water to then add the moisture and bulk to your stool. Definately helped me a lot before my prolapse got worse and still does really to some extent as still take the konjac fibre.

Xx

I do not know about a bend. The doctor never did any tests and just said its defication disorder and I need to learn how to relax my anal canal. I did have colonoscopy after my hemmoroidectemy by my surgeon and my colon was good. I do want my specialist to take a look to be sure nothing is wrong internally. What would tell me if there is a blockage, tumor and any other physical problem? Sigmoidoscopy? That's what I came up with. What did your doctor do to diagnose you?

Never tried those. I did fiber pills and stool softner, but it just made me have to try to go more often, not what I want. My stool is soft but maybe I will try bulking it up life you suggested. Isn't this crap that the patience have to help each other figure out how we can live a normal life? I am shocked how many of us are suffering so. Thanks for you help....we need each other. Perhaps get a book written with all the suggestions. Haha

A transit study could tell you if they was a blockage. But you would have to stop using the enemas for a long time leading up to this. Mine came back 0 markers left so I was normal I need one again because I was using suppositories none stop leading to this day and even on the day. With the suppositories I could feel the stool being ripped from my stomach.

Also a xray on your bowel think its called a proctogram.

Did you have your colonoscopy awake? I seen mine could see the mucus inside my bowel horrible.

Just reading up about obstructive defecation. One thing that made me think was how everytime I wipe I need to poo again. Do you get this too? Its like bowel massage(kind of lol)

Seems biofeedback is the only treatment available. But what I want to know is what of that fails.

We do need to stick together and help each other out as there seems to be so little support elsewhere for something that does actually have a significant impact on your life. Xx

I was not awake for colonoscopy. I don't want to go through the tests to see if I have slow or fast transit time. Just want to be sure don't have anything physically wrong that can be corrected by surgery or a growth or something. If an X-ray would show this I want it. The only thing I know of for defecation disorder is biofeedback therapy. I don't know what else they can do otherwise. Just hoping it will help me. The wipe thing doesn't stimulate me to poo more. Haha. Just have to always seem to have more to go. 

You are so right. Boy does it take over our daily lives. A bodily function that should just be natural and not a pain in the.....

Growths are more likely to be seen by colonoscopy as they look at your bowel.think even go all way to stomach not sure was 2011 when I last had one.

The xray show exactly what happens when you poo thats how I got told I have obstructive defecation.

I find I always got to go don't no how I have so much.

 Once they determine you have the defecation problem there's nothing to do except biofeedback. I just want to rule out any other health issues that might be going on in there before I spent so much time on biofeedback. You're right I have no idea why I have so much poop in there. Seems like three or four toilet loads and it was never like that before. In the past I woke up with one load and I was done I'm not sure where all this is coming from. At least I have good digestion track to have it all come down and be ready to go. If I could just get it all out and I have to sit on the toilet six times a day. It's a never ending problem and I don't want to live like this forever as do you. Hope you had a great Thanksgiving I am in the states and it's a big holiday. Take care

Hi Nancy sorry for really late reply I been really bad lately.

We don't celebrate thanksgiving in UK hope you had a lovely day.

Have you not been diagnosed with anything else (IBS)

Do you find with the enemas it empty you completely.

I think we need more answers I feel completely on my own. Got a feeling I be discharged soon without any improvement

I'm really anti social, even hide from people when I am out so I don't have to talk lol.

I'm also unable to work because of this, don't know if this is the case for you?

I'm getting worried because my partner putting pressure on to get a job too

I use the enema once I’ve gone on my own but can’t empty rest. It does work pretty good. It sometimes takes two tries but I am then able to do my day. I feel incomplete at first(so much has come out though) but once I walk around the pressure eases and I am ok. Not perfect but I manage. The doctor said that if it’s the only way to do my day then it’s ok to do for now. Try it. Just be careful inserting the tip of enema. I use vasiline to help it slide better. Again it’s a hot water bag I use and fill with warm water. I do half the bag to start. Hold in for 2 to 5 min before going. Good luck. Wow long message. 😳

I'm going to try it because I am unable to work because of it. Actually spent all day yesterday empyting.

I'm the same so much comes out and I still need to empty. It changes throughout day from formed stool to watery dots of poo!

I suppose enemas can't be that bad aslong as we don't strain to get it out.

Oh it comes out at first with no effort. Then I relax and breathe deep to get more out. Use some of my biofeedback breathing technique. Relax. Relax. Yeah easier said then done. If the first empty after enema still feels like more. Do more enema and go again. Then take a walk and try to see if feeling to go subsides at all. Hope it helps. 

I'm sure it will thank you. Let me know if you have any improvements with. I been trying coffee and colon cleanse. Just makes me poo all day so far