hi everyone

[petalpot]

can anyone help me please
my names janice and i live in the uk. i'm feeling really bad today , i was tossing and turning all night long with pain caused by the cauda equina syndrome that i have. the pain is really excrutiating and i couldn't get any relief from it . also i am really worried i'm due to go in for another operation for my ileostomy to be redone and made into an end ileostomy because it has retracted and gone flat against my stomach this has also given me a lot of pain like labour pains when you're having a baby, mainly because it was blocked for a couple of days then from early friday morning it has been emptying and emptying and emptying non stop it has just finished and at least i've got a bit of relief from that now.the other problem i've got is that i went for my pre op assessment yesterday , during a routine ecg they found some changes on it what is corresponding to ischemia which is not enough blood supply to my heart and it can cause an heart attack or sudden death . i'm not kidding it's one thing after another with me . they're going to have to sort that out before i have my op for my stoma. does any one out there suffer from ces like me who can help me with any advice or any one at all who can support me through this . i feel as though i'm on my own pleeeeeeeeeeeeeeeeeeease help luv to you fellow sufferers of any illness
janice sob sob!!!:confused:

[Tootsie]

Janice, there is a Cauda Equina Syndrom forum here at braintalk. You need to scroll down to the bottom of the page where there is a rectangular box that says "Forum Jump." Click on the tiny arrow and keep scrolling on the index until you get to where conditions are listed alphabetically. Remember that there are TWO indexes and you have entered the first one. Just keep scrolling down until you find Cauda Equina. Cheerio.

[joy]

Hi Janice. When are you dur for your next surgery? I know you must be dreading surgery and now to hear still more things you have to worry about. I hope you can put it out of your mind about the ischemia & heart attack. You have enough as it is and try and not borrow any more trouble than you already have.

I remember you posting on the peripheral neuropathy forum I think. I have that and slowly everything is dying off in me as well it seems. It's the same old feeling you described as if it's not one thing it's another. Well I just wanted to wish you well and I would love updates from you here if you don't mind giving them to us. This is a wonderful place to get and give support to others I have found so don't be a stranger.

I am looking forward to updates from you. And banish that all alone feeling please. It might not be as nice as an in person visit with someone but I have found visiting by computer is not all bad.

[Buttons2]

Hope you will soon have some relief from all the pain. We are here anytime you need to vent! Hang in there,better days ahead I'm sure.

Buttons

[bluesky63]

I can certainly sympathize with the "never-ending" feeling. You might think that having one problem would be enough, but it is always amazing how things can come in cascades. I'm so sorry you're having such problems and are in such pain. I hope you've been able to find the CES forum, and that you find relief. :-)

[JAVISI]

Janice,
I am having a lot of bowel problems. It seems that they have decided to quit working. I am facing having an illeostomy. I have been hospitalized more times thanjm I can count because of my bowels here lately. I can relate to the pains feeling like labor pains. I keep putting off the illeosttomy, I am scared because for me their will be no revision as they want to take my entire colon out!

I sure hope that you can come back. I want you to kinow thaqt you are not alone! This thread is so full of caring, understanding and wonderful people that have big hearts.

Hope to hear from you soon, remember that you are not alone!
Dreamin Big and Reaching for the Stars, Javi;)

[petalpot]

hi everyone, thanks to all of your replies they really gave me a lift.Some 'good' news at last ,the ecg i had was only showing very slight ischemia , so the surgeon and anaesthetist have discussed things and are happy to go ahead with redoing my ileostomy , to be quite honest i can't wait to have it done at least i won't have those horrible pains. javisi please don't be scared of having an ileostomy done, they are great once you get used to them. i,ve lost over 10.5 kilo's in 3 months since i had mine done.you can eat and lose weight at the same time. i've actually lost over 38 kilo's now since april this year.it can only benefit my health. i'm still not sleeping too well though i've been going round like a zombie for the last few days , but i'm not worrying about that blooming ecg any more thank god! anyway all an update up to now 10th nov 16.40 hours i'm not too bad with the pain at the moment i've not long since had some morphine , i'm on emergency standby waiting for my operation for if there are any cancellations until my operation date . i've got my husband starting to redecorate the house so it's all done ready for christmas (it will be soooooo nice to be able to eat my christmas dinner for once yum yum)a very good pain free day to all of you lots of love janice X X X X

[joy]

Hi Janice

Well here is hoping that you get that surgery as soon as possible and then you get to feeling better. You be sure and let us know how it goes. I know you have to be excited about your husband's remodeling for you. That is going to be nice. We need that done at our place as well but will be putting it off until after the holidays most likely. We move sorta slow and if we started it now we would just have a big mess likely, lol.

We will keep you in our thoughts and prayers and also we have you Javi in them as well.

((((((big hugs)))))

[Buttons2]

Good luck with the surgery,and I'm hoping you're not in the area of flooding over your way! Yikes!

Take care,Buttons

[JAVISI]

Janice,
Thank you for the support about the illeostomy. It seems closer everyday. I have tried everything to get my bowels to move and yet nothing seems to help. Not even the enemas. My family is so against it but being in the hospital every 2 weeks is not an option either. I am glad you gave me some upsides to having an illeostomy!:) I could stand to lose some weight!;)

I just got out of the hospital 3 days ago from a bowel , not really obstruction but paralisis of my colon. Now I hav blood poisoning in my left arm due to an arterial stick when I had some respiratory distress. My lungs and diaphram are worling at only 60% and my heart is stiff so my bowel issues scare me but not as bad as my other problems:(

I wish you all the best with your surgery. Please keep us updated if I do not respond that usually means I am sick but I still keep all of my cyber friends in my thoughts!

Could you tell me a little bit about what it is like where you live? I never cared about geography in highschool but I am interested now. I love hearing about what it is like in other countries!

Dream Big and Reach for the Stars, Javi:D

[houghchrst]

Hi Janice, I hope you get your surgery soon and that your pain is well managed until then. http://bestsmileys.com/flowers/2.gif

[petalpot]

hi everyone Janice here , i don't feel too bad today i've actually been out and about to see one of my daughters and her 4 children .they make me feel really blessed to have them, they make me smile and laugh at the things they get up to.i managed to get up there on my mobility scooter .javisi, in repy to you please don't let your family influence you if you want to have the ileostomy done it isn't them who's going through the pain , although in a way they may feel as though they are they aren't going through the physical pain. believe me i did think really long and hard about having the surgery what i had done in july this year (it was for an ileostomy, an in dwelling permanent supra pubic catheter,a very large vaginal prolapse , a rectal prolapse ,and a bladder lift,)i felt total c**p after i had that done but if it wasn't for the ileostomy retracting i wouldn't need any more surgery. this was all caused by the below standard after care i received after the operation i had in nov 2005 for a prolapsed disc . if the docs had really listened to me and gave me an emergency op straight away like they said they would if i had any of the symptoms i described to them i wouldn't have ended up like i am now. thanks a million doctors. but heres hoping i get a million pounds (two million dollars) compensation i have put in for. To describe where i live javisi . it's relatively small where i live with a few shops and public houses , theres a railway just across from where i live(handy) and quite a bit of countryside where there's quite a few pathways where people can walk and take their dogs for a walk and horses for a ride. about a mile down the road is an 11th century castle and in the next village called conisbrough theres a 9th century church . sheffield is about 9 miles away from us and doncaster is about 7 miles both these places are great for shopping and for people to have a great night out . i used to do that before i became ill, It seems so long ago now.i live in a three bedroomed semi detached house with a very large garden , i have four children (3 daughters and a son) ages 28, 26,25, & 24 years and 10 grandchildren , my husband who i've been married to for 6 and a half years is 14 years younger than me. my youngest daughter has just had treatment for the early stages of cervical cancer, which they have caught in time thank god , i had it when i was 34and had a total hysterectomy and got through it , i have had three breast lumps removed which were benign tumours 12 years ago, i had my gall bladder removed 4 years ago and then all this happened .i said to my husband i was going to leave my body to medical science but there isn't much left of it, he replied the only thing that works properly is my mouth the cheeky so and so,.anyway all i've rabbited on for long enough i always do when i've had some morphine . But JAVISI don't forget think about what YOU want it is a lot better than suffering with not being able to empty your bowels love and it's not that unsightly, they have some good stoma bags available now .Lots and Lots of Love and painless days ahead to you all love janice

[JAVISI]

Janice,
I am so thankful for your support. I know that my parents want what is best for me. I promised my dad that I would drink mineral oil and prune juice faithfully. He does not realize that I have been taking more potent drugs than prune juice and mineral oil but I am doing it. My dad made the comment that he would not want to eat for fear of another hospitalization. Once my bowel is full I do los my appetite, my stomach hurts terribly and I get nauseated. I often wonder if he does not realize that I have no control over this!

I am now trying to get over a painful bout of lymphagitis. It is taking its toll. It sems that is it is not one thing it's another. I have 3 children ages, 23,22 and 20, and 2 beautiful granchildren that give me faithand the desire to move on. I also have another on the way! My daughter has a son and the ultrsound showed that she will be having a girl in March. I can't wait.

I got divorced 2 years ago, it was long and drawn out, and a rough time for me and my children. The upside is that I am marrying my old highschool sweetheart in February. I love him so much and he loves me sickness and all. I have never been loved and treated with respect the way I am now, I am enjoying it! So you got yourself a younger guy, good for you!

I live on a farm we do not have any farm animals, we do have many cats and 2 dogs. We also have an alphalpha feild where we plan to raise a few head of cattle. We are far from town and away from any houses. It is so peaceful. The closest town is small with a grocery store and gas station. The next biggest town is where we do most of our shopping and take care of my medical needs. Sometimes I have to go and hour and a half away when I am really sick. But the peacefulness is worth it. Since harvest is over you can see for miles, nothing but flat land here.

When I think about the full spectrum of life, It is not so bad it could be much worse. We are now entering into winter so we are preparing for that. Here we have all of the 4 seasons, winter, spring, summer and fall, I love that!

Now that I have written a book I better go!
(((hugs to all))) Dreaming Big and Reaching for the Stars, Javi;)

[petalpot]

hi javi , it's sounds really good where you are , oh for a bit of peace and quiet. it must be really hard for you to have the medical system over there in america, at least here in the uk we have the nhs , and because we are on benefits now that i am ill we don't have to pay for my medical needs and my medicine it's a good job really as i have to have 25 different items on my prescription. i take 42 tablets a day. if i did get to walk i'd rattle!! we are in the winter season too over here although it's relatively mild weather.all the leaves have fallen off the trees too , i am trying to learn my grandchildren the different seasons and the difference between them.I bet you're really excited about the new grand daughter coming ,i've got five granddaughters aged 6years 4yrs ,2yrs 18 months and 13 weeks and five grandsons aged 11yrs, 10yrs 6yrs 4yrs and 2 yrs and i love them all. it does make a nice change though that i don't have one due this next year coming .i'm sorry that you feel so ill at the moment javi i hope you feel better soon. and it's wonderful that you're marrying your childhood sweetheart . it's taken me some time to find the right one for me' i was married for 20years the 1st time , he was the one i had all my children to. but i had 15 years of domestic violence with him it got to the stage where he tried to strangle me in front of the kids so i left . then i thought i met someone when i married a guy 10 years younger than me , what a mistake that was!! he kept on saying he was still in love with his ex girlfriend when he was drunk .then one thing led to another one night then he broke my arm cos he was drunk and got mad because i'd been out with my eldest daughter and my friends so i kicked him into touch. then guess what!! yes i only went and got married a few months later after my divorce on the rebound, only for him to beat me up on our wedding night and he tried to stab himself but i thought i'm not giving in i'm going to carry on with this marriage cos i was fed up of people talking about me . but that was the worst mistake i ever made , because i found out that he had psychotic paranoid schizophrenia and multiple personality disorder. i found out that he'd been imprisoned for stabbing his ex in the face with a pair of scissors . when i found that out there was no way he was getting any where near my kids or myself . the best thing was when he was ok he was a very intelligent man ,it just goes to show appearances can be deceptive . tell you what javi i 'm thinking about writing a book about my experiences, mind you i could write a series of books about my experiences .i hope yoou find true happiness with your new partner he sounds really wonderful . and i hope you get better real soon , i'm sending out my healing thoughts over to you . goodnight and god bless talk to you soon janice x x

[petalpot]

javii forgot to ask you what is your real name and where abouts do you live in america i know you've put down in the hearland but it would be nice to know where you live the place i live is called denaby main in doncaster south yorkshire england in the united kingdom. i also send out my healing thoughts to all of you who has replied to me in this emotional support and hope you all find health and inner peace good night everyone janice x x x

[Tootsie]

What is a "radioenthusiast?" You listen to the radio? Cheerio.

[Buttons2]

Petalpot,now I'm curious how you came by that name? You seem to have a great sense of humor! I enjoy reading your posts. I could never keep track of that many grandchildren! That's nice that you have good medical care,and free no less. We are not that fortunate here in the US.

Your description of where you live makes me think of the books I've read by someone named Binchey?? I may have the name wrong since I read so much. Her son also writes novels now....maybe someone else will chime in with the right name? She always writes about rural English towns & the cottages there,I can feel like I'm walking on those paths & smelling the sea......

I happen to live in what we refer to as the Northwest,in Washington state. the Pacific ocean isn't too far from here. We are having snow right now but that's not all that common. You can google LaConner,WA to get an idea of where I live.

I hope you can hang on until the surgery! And hopefully your experience will help Javi. You two have alot in common,but I'll let her tell you what that means!

HUGS from across the way,Buttons

[Buttons2]

Bragging: here's a good link (I hope) to the scenery I get to see whenever I want:

www.nwculture.com/NWC/SmallTowns/LaConner

If the link works,just click on scenic views.

The mountain with snow is called Mt. Baker,we also have Mt. Rainer,Mt. Adams & Mt. St. Helen's which blew it's top right off about 26 yrs ago!