please help

cloudhowe

Hi Guys

I too, have steroid induced myopathy, so walking is laboured and a bit painful. I know the befefits of walking and bowel function and would endorse Caren' s advice if you can do it.

Barbe, my hospital experience was so bad I am making a formal complaint against the consultand - he ran from the cubicle when I rounded on him.

It was his surgery who

1) sent me for a 45 minute barium enema - ugg!!!

2) dx diverticular discease and Inflamatory Bowel Syndrome, and that surgery would be the best option when I was well enough - I had just finished rads and was still getting Herceptrin.

3) arranged 2 follow up appointments with a doc, which HE subsequently cancelled. 

He is an arrogant pig (all 4 of us in the ward has the same feeling!)

I was given 2 ememas, which caused pain and urgency but did nothing to ease the mass. Also Movicol drinks. I told them that given my experience, one of them would be as much use as an ashtray on a moterbike! - On the Friday, when I told im that the Golden Jubillee could not do the scope (and I was scheduled for banding) because o the external and internal trauma (I has tearing) and that it was recommended that this be done under general.

I got my appointment, went to day surgery and they were not prepared for a general, thank god I took the letter with me. I had taken a bad reaction to the Moviprep and they kept me in all day on iv buscopan.  Anyway, Mr H arranged for the barium enema (looking, as it turned out for cancer).

Anyway, since Taxotere, I have had terrible bowel problems (mostly diahorrea, ofter watery) them slam dunk, everything just stops!

When I want to A&E on Thur, I had NO bowel sound and had been bringing up bile for days.

On Fri, he said (iin his indeciperal thinck accent and almost to himself) "Ve get yo up next veek for camera" Fine, me thinks, I cannot go on like this!!!

On Saturday, he sid "I sink it might be diet ...." I exploded. He didn't even haave my copious notes, couldn't remember anything about my case , I told him that the Nutricionist said my diet was "Magnificent" and that mine and my sisters knowledge of nutricion was almost as good as her's!!. He fled, one of the nurses came back a few minutes later. I told her I was not standing for that, that I had those feelble little Movicals at home (a bloody suitcase ful), she asked if there was anythibng they could do so I said "Get me Sennacot"

So yet I did leave totally backed up and vomiting.

I took about half a bottle of lactulose and had the most painful BM of my life. The Nurse/Pracitioner called me on Tue and I let rip. SHe apolgogised sincerely and suggested that I speak to my GP, she agreed that I had grounds for complaint.

I will get this investigated but by a bowel professional, not a general surgeon, which is what he was.

Feeling so much more comfortable now (but wearing a nappy, just in case) I have been ill since the beginning of July.

Calling my doc tomorrow. I feel too tired to keep fighting, onthe Work Capability Sham, mistakes in my Council Tax, the health probs cancer treatment has gifted me .. not getting proper medical care from this swine.

Everybody knows me to be a strong woman, but I just feel - no more ...

Sorry, and thanks for letting me rant.None of he family want to hear the details, but so many of you suffer from similar. We speak almost baby talk about bowel functions - have you had a poo??

When folk ask me what the worst thing about my cancer - the constant vomiting, bleeding rad burns, pain - I always say - the effect it had on my bowels. ANd it is as bad now as it was then.

Barbe, I think I might have your problem. Taxotere can freeze the nerves of the intestines (I saved an artical by MacMillan) I just hoped that they would recover.

Thanks girls for letting me rant, and putting this down chronology!!

Nets xxxxx

barbe1958

Caren, if you truly know me, then you MUST know my sense of humour! No apology required, as you can read 'into' my post as much or as little as you want!

Nets, sweetie! I've had Lactulose NOT work!! I hate the stuff - so thick and sweet. I lie in bed or on the bathmat, listening to bowel sounds so I know I'm alive at least, but no movement. I am getting pretty tired of all this. I let a bit out each day, but I used to be the perfect bowel mover. If I ate 3 times a day, I voided 3 times a day!

I remember when my Dad had lung cancer. He said he would die of constipation before he'd die of cancer! At the time I found that funny, now I find it possible!!

lwarstler

For everyone struggling with constipation, don't know if anyone else hear has ever tried it, but when my mom had chemotherapy 7 years ago they gave her a prescription for Miralax. They have it over the counter now and since I have been struggling with being backed up for awhile, thanks to all my pain meds and muscle relaxers, I tried it and it seems to be working. I have also been eating 2 Activia a day to help so I'm not sure which is helping the most, but they seem to finally be getting me on track. Took about a week to get me regular but for the first time in over 2 years I finally am again. Just thought I'd share cause I had never heard of it before.

Lee Ann 

barbe1958

Lee Ann, would ANY yoghurt do? They are all made of the bio-thingies so shouldn't they all do the same thing? I can't find Miralax up here, but did find Restoralax. It's a white powder you mix in a drink. Does that sound familiar?

lwarstler

I know Activia has a type of live probiotics not found in all yogurts that are meant to specifically help with digestion and bowels. You can read about the difference at http://www.livestrong.com/article/254695-benefits-of-activia-yogurt/ . I eat regular yogurt all the time and it wasn't sufficient, but I'm sure it helps some. The Miralax is a white powder you stir in drinks, but I don't know if it is the same as Restoralax. You could compare the active ingredient, in Miralax it is 17g of Polyethylene glycol 3350. 

thegoodfight

Barbe,

I suspect we might have a cultural difference when it comes to humor.   I got a few PM's that thanked me for addressing your tone, so I am not alone in my reaction.   That being said, we are all sisters just trying to live our lives handling this beast as best we can.  I do hope you find some relief soon.

Caren

cloudhowe

Thanks girls

Again, all the suggestions are so very welcome, as is the reassurance that I am not the only person going through this embaressing and pretty lonely ordeal!

i used to take activia every day, especially when I started chemo, but everything just made me feel sick so i bought them and they went into the composter!

Need to stock up, so will buy some - they do a lovely fig one, a prune one and rhubarb - all of which will help additionally.

Actually had a wee bit of chicken and mushroom pie this pm, so feeling much more human!!

Thanks again, will try all your suggestions.

Nettie xxxxxx

barbe1958

Caren, I honestly thought you were kidding!! At what point did I chastise you?????? I only suggested that your regime would be appreciated on an exercise thread where there is more interest!!! I know all the ladies on this thread and if they don't have the balls to tell me I chastised you, then I'm sorry sweetie, it's all in you head. Now you're pissing me off. Please don't look for a hidden agenda when there was only a good suggestion. I wasn't kicking you off the thread, but only asking that you consider what thread you are posting such activities on as most of us on this thread have other serious health issues!!!

lwarstler

Nettie, so glad you were able to each something today and are feeling a little better, I didn't know they did a prune or fig one, I'll have to try them...that would be good to add. (hugs) and hope you just keep getting better.

barbe1958

Nets, I am putting dates in my oatmeal as per the hospital dietician to help move things along. Slowly, oh so slowly......

Glad to know you feel like a new woman!!!

tarry

I felt quite suicidal for a while. When I feel my life is now taken over by others, I can get like that. Try to find parts of your life you still can control and work on what they need. At least that's helped me.

Cancer is very scary, but you will have more strength than you realize.

thegoodfight

Barbe,

I don't want to have an  ongoing debate and please do not call me sweetie.  I agree that my exercise regime might be more helpful on the execise thread, but I don't believe for a minute that you know everyone on this thread and all about every one of them.  There are also many people who read and do not comment.   I just wanted to let you know that I am familiar with the thread and have been reading it for quite sometime and I was offended that you suggested that I treaded into some unchartered waters.  You cannot speak for everyone on this thread so stop trying.  And by the way, you have really pissed me off.  You do not have to take any advice that doesn't suit you or your needs on any of these threads, but you do not have the right to put others down.  You call it humor, I call it shameful,   BTW if you are looking for some humor I guess I could say that because you are backed up, you are full of it!!!!  Try to be nicer, it will reward you in the end. ( no pun intended )   If I helped anyone, that is awesome and I will continue to express "my opinion" on any thread I choose to.   Stop being a bully, it is not attractive.

Caren

barbe1958

Oh dear! You say you have lurked on this thread but not posted. Now how the hell was I to know you knew us all so well??? Tell me how Cathi is doing with her mets?

I, too, can express "my opinion" on any thread I choose to (a DIRECT quote from you!) so why does that make ME the bully????

Calling you sweetie was a nice thing. Now I'll just call you rude and juvenile!

thegoodfight

Apparently you get some kicks from all this.  I never said I lurked and didn't post, you must read more carefully.  I also think it is interesting that we joined BCO at exactly the same time almost three years ago and I have made 487 posts and you have made 13,659.  You have a lot to say, so I am going to stop this back and forth, you will find other opportunities to make yourself known .  And with all that said, I still wish you well.

Caren

barbe1958

I CONTRIBUTE to the threads and have many game threads that I play as well. I don't just LURK or just READ and then jump in when I disagree with someone. I also don't break the tacit 'code' of discussing health issues to slam someone.

To say I am "full of it" (due to constipation) has shown your true colours. You have lost all my respect.

thegoodfight

Where's your famous sense of  humor???????????????????

cloudhowe

Caren

The comment implying that Barbe (who we consider a dear friend) is full of jobbie is hugely offensive to all of us who value her wisdom, honesstly and wit.

This is the only thread I visit (from Scotland) so I don't scan all the sites, but the lassies with whom I keep in touch through various media and whom I consider friends have been invaluable to me at a time of crises and onging problems.

Please do not abuse them.

Nets

thegoodfight

Cloudhowe,

Please go back and read all the exchanges between Barbe and I and see where it went after I offered some suggestions to help those who suffered with constipation.  I think she overreacted simply because my advice, which was a legitimate suggestion, didn't fit her limitations.  I was speaking in generalities and certainly not targeting anyone who could not easily physically move.  As I said to Barbe I got a few PM's thanking me for addressing her first reply to me.  Everyone does not see everyone in the same way, that's for sure.  What we do have in common is BC and I wish and pray for everyone's health.

Caren

cloudhowe

I feel that you have  overreacted to a very innocent and casual observation Caren.

In fact, the posts subsequently made by you have supported that.

What you implied about Barbe was insulting, and quite unworthy of anyone going through the hell that cancer showers on one.

And the long term, incurable, aftereffects.

I have seen the comment about 'cultural differences'. If you ave cultural differences with the only neighbours with whom you sare a common border, I shudder to think about what difference you would find elsewhere.

I reiterate, your comments appros Barbe were unworthy.

I suggest an apolology would be appropriate.

Nettie

thegoodfight

Nettie,

I have to say that I have no idea what all this tit for tat badgering is about at this point.  I do see that there are about a half dozen on this thread who are apparently very, very close.  Good for you all, that's great.  But this is a public thread and anyone at any time can make a post and should not be told that they are clueless because they don't intimately know the "regulars".  I actually am sorry I tried to help.

As far as cancer and it's trials and tribulations, why do you think I am here, I have cancer.  I am only sorry that the point of my post got lost in all this gibberish.   BTW, the reason I do the amount of exercise I do is to counteract the se's from my meds.  It is helping and yes, I too have some permanant damage from my chemo and radiation.  This really is a level playing field, no one is special, sadly we ALL have cancer to deal with.

I am serious when I say that I am happy that you are such a close knit group.  I do feel you shut others out whether you mean to or not, but I am happy you have found such deep loyal support in one another. 

Fortunately I also have tons of support, so I am not alone.  I will end again saying I wish everyone health and may they be pain free.  We are all in the battle of our lives and none of us should  be getting stressed over what has become nonsense.  Wishing you all well.

Caren

Moderators

Hey All, 

New start, please! Can we all agree to move forward, and either drop it altogether, or discuss this issue with us, the moderators, behind the scenes, if necesarry. Unfortunately, this is taking over the thread. Unfortunately, humor and 'sarcasm' can be taken wrong- both verbally and esp. in written text, and with people who don't know one another well. We encourage you to be respectful, kind and considerate as we move forward. 

Many thanks,

Your Moderators 

Anonymous

Goodnight, sweet thread. It's been a remarkable four years. I will miss you. If anyone needs to vent or discuss private issues, I suggest sending a group FB message where we can talk. BTW, if you use Firefox, the Better Facebook addon will let you clean out all the annoying crap. I love you dear friends!

cloudhowe

I would like it to be known that I objected to a comment made against Barbe which I found immensly offensive - a very thinly veiled insult.

Will this comment get through, moderators?

Nets

cloudhowe

Hi girls

How is the weather today.

Overcast over here

Nets

barbe1958

lwarster, I just checked and yes! Restoralax had exactly that drug in it and was expensive. I compared it to a cheap Walmart brand I forgot I had and it was exactly the same thing!!!

Cloudy and overcast over here, too, Nets!

lvtwoqlt

Rainy this morning but the sun did come out. 

NancyD

Barbe, my dad used Miralax for many years...and was quite amused that that active ingredient is actually the same chemical that is in car anti freeze! (Well, almost the same).



I haven't had a problem with my bowels recently, but the first few days after my first TAC dose were miserable. I thought the same thing as your dad...if cancer didn't kill me, constipation sure looked like it would do the job. I commiserate with you all.

barbe1958

Nancy, I wonder if that means it'll work better in the winter!

cloudhowe

Unbelievably, my dears , we seems to have a wee glip

A week of an Indian summer! Seems an anomaly and we are gettig a front from the Med.

No summer to speak of, I was so cold in hosp that they thought I had a temp, but Mother Nature has a very strange sense of humour.

Normal service is kinda resumed, to an extent. Still am making a formal complaint - the first in my life, about the consutant.

We are going to The Isle of Cubmbra (Millport) tomorrow, a nice wee trip and short ferry crossing to a wee bit of God's Own Country. Very beautiful and almost prehisoric - they actually have a huge rock which looks like a crocodile. Actually, all the rocks arougn the shoreline looks like someting from Jusassic park.

Google it! - Millport, Scotland+images.

Be good, be safe, and take good care.

Nets xxxx

lassie11

I looked - it is gorgeous! One more reason to make Scotland my next adventure.