All this year I've been seeing a specialist because my spinal nerves have deteriorated to the extent that my bowel is hardly working anymore. I have jumped through loads of hoops, and finally been cleared for edgecutting electrical implant not for pain relief, but to avoid having a colostomy. Not very many have been done, My GP has never even heard of this procedure, but then, I went and got another prolapse, quite a serious one, and must have this dealt with before I can move any further forward with implant. So in the next week or the week after, I am going into hospital for a open abdominal resection of the lower part of my bowel. He is going to cut a bit off, sew the ends together, sew me up, and hope for the best. I hope I dont leak, because if I were to, and that is the one fear, then he would have to do some kind of colostomy or ileostomy, and thats what I'm trying to avoid! I'll be about a week away, and 6 weeks convalescing Funny but this time last year I was away also. There cant be much more to go wrong can there?
Keep smiling.

Hey, Marijo. I usually go to the chronic pain forum, but thought I would pop in here since a large part of my problems are in my spine. I am so sorry to hear about the hardtime you are having. I am almost without words to give you because I do not know how I would handle all of that myself. So far, my bowels are fine...but the bladder is beginning to show problems that I will have to talk to my doc about. For me (and it looks like you too), it is just a matter of time of fighting battle after battle. My single largest battle for the last several years has been in trying to find help for the severe pain that I endure. Everything else has fallen by the wayside. Think my bladder cannot wait any longer.

I so hope that your operation goes well, and a little sunshine peaks through.

sally

I feel for you, you have been threw so much. I am going to pray thay it don't end with a colcostomy. My dad had one and it's no fun. You will get be alright. Gentle hug's are being sent your way.
Hugs'
Fancylady

Billie, and Sally.
Fancylady I know you have been through more than most people should have to bear, in one year!!, and yet you have always had such nice words to say to me, and if that is a piccy of your face, then it is a very sweet and kind face also. You feel like a friend. Well I think we go back a little way in any case, in cyber time!!
Sally, they are all tied in together! My bladder is also about to be fired up. But Hey Did you know this, and it should make you smile. The ORGASMATRON was invented by an American spinal doctor, who was placing an implant in one of his patients. Suddenly she started ooing and aahing, because he had placed it rather near , or even directly on her pudendal nerve, that supplied her you know what!!, giving her a you know what!!! Well he immediately stopped being a spinal doc, and started being a sex therapist, charging loads of dollars for this revelatory implant. So all this year, when I was having all of these tests, electrical etc, I was absolutely TERRIFIED that I would embarrass myself by getting out of control, in a way that I have not done for quite some time due to spinal injury, if you know what I mean. Then when I noticed that they had allocated a female consultant to administer these particular electrical tests, I was absolutely convinced that there was a conspiracy afoot. Well as it turned out, I was perfectly well behaved through all the tests, got all the results right, proving that I need the operation which is a real drag. I'm just worried what I might say when I come out of the anaesthetic. I can be rather rude. Also I must admit, I am rather scared about this one, because I saw my mother after this type of surgery, and she was quite ill.
Fingers crossed folks. Thank you for your lovely thoughts.
#M.x

Marijo,

This is just awful that you have to have another surgery...I am having some problems too..I just went for an ultrasound last week and get the results tomorrow..I am having terrible pain all the time though......I will keep you in my thoughts and prayers as always...Keep us posted..

Very interesting post and I feel for all of you!

I have problems with the L5/S1 and about 6 months ago I started feeling pain or pressure with the bladder and the rectum. My PM thought it was SI Joint Dysfunction and sent me to a gal who specializes in the lumbar and weak pelvic floor issues. She had me to various exercises one of them being Kegels. About 3 weeks into this I started having severe pain. She told me that something was seriously wrong and to get myself to my ob/gyn. Now mind you, I had NONE of these symptoms until PT. So, I think what happened in laymen's terms is that while doing the lumbar exercises, I was actually pushing everything down and out!

The ob/gyn told me I had a cystocle and a rectocele. So, then I was sent to Urogynecology Associates here in town. I went through TONS of tests only for them to determine, yes, I have a rectocele but NOT a cystocele.

Then, when I met with the Director (head doctor) he went over my 4 page report and told me that is is pretty common for someone my age and in women who have had children and a hysterectomy which I have had.

BUT...he believes that the pain is truly coming from the L5/S1 (facet degeneration). Of course this all ties in one way or another because the nerves tell the muscles how to work, so I obvioiusly have some nerve damage. But his advice was to get a facet injection FIRST and then to come back and go see a specialist they use to address the weak pelvic floor. He says cystoceles and rectoceles should not hurt. But I beg to differ LOL! So, I have set up an appt. with my PM for a facet injection in November.

He also told me that to go into PT now "would send me over the top"...meaning way too painful to do while having neuropathic pain going on.

Anyway, my biggest problem or issue is not with my bladder but rather the constipation. I am doing EVERYTHING I can do to keep that under control and to keep the bowels moving. They will not do surgery because the rectocele is a Grade 1. But, boy, this is painful when things don't go right...you know what I mean.

That is very funny!!! But guess what!!! I can't get those sensations anymore. Except, once I had a Myelogram, and the needle touched a nerve in my back that set of a quick sensation. I think the frisky young technitions, or docs, or whatever they were did it on purpose! Well, being as dead-pan as I am, and not wanting to give my secrets away, I managed to keep it to myself. LOL

I was in hospital eight days. I had a nice room, and everyone was very kind to me. My husband was away in Denmark, which was where he wanted to be, because he has a pethological fear of illness and hospitals. He really did not have the slightest idea what I was having done either, although he does know now.
The surgeon told me that he was doing the operation to repair the prolapse, which was essential, and had to be done abdominally. because ot my age. (youthful) LOL. He also said I had spinal stenosis, and failed spinal nerves at the lower end, which really was the first time anybody has said that definitively to me, although I knew it for a long time.
I expected just a few inches to be cut off. When I woke up The surgeon came to see me and I asked him how much and he held his hands wide apart indicating around four to five feet. I got a bit of a shock. He said I had a very long gut that was doing nothing. He didnt even know if this was going to solve the problem, but this was the initial step. He had also done an anterior vaginal wall repair, for a rectocele, and repaired the rectal prolapse. When he cut the big length off, he then had to rearrange the rest of it, which he did so, and then sewed the whole lot into a man made net, which is fastened into my abdomen for ever. As yet I dont know if this will restrict me or not. I have been told that it will take me a long time to recover from this one. Also that there is quite a high failure rate. Well at the moment I am virtually incontinent. At least I would be if I were more than a short distance from a bathroom at any time. I am going between 30, and 40 times daily, which I dont think is quite right, so I may call the hospital tomorrow for advice, as they said I could. I am also very sore. It kind of puts you off eating when you know that one small meal is going to take 40 trips to the loo to elimin ate. Sorry to be so explicit. I never before thought I would have a problem keepiong weight on!!!. The other prob I have is that I still have no peristalsis, and no feeling in my gut, or very little. When the nurse came to take my clips out, she was very surprised that I couldnt feel a thing, but for some time now, an area of my abdomen, inside and out has been completely numb.
When my eldest daughter came to see me after the op, she had to go into the bathroom for a little weep. She was quite overcome.
My younger daughter was scheduled to look after me when I came out of hospital, but she's not very domesticated, plus which she got a bug which consisted of projectile vomiting the day I came home, plus her boyfriend came to stay. I couldnt let her near me, as I could not afford to catch an infection. In the breadbin, there was half a loaf of bread, which had been there since before I went into hospital, with a fine crop of penicillin and mushrooms growing on it, and in the fridge there was half a bottle of milk, and a cucumber which was growing a beard, and some stale cheese. Oh yes there was half a dozen tea bags as well. My house, which is big enough, having a basement kitchen, four groundfloor rooms, four bedrooms, and my attic bedsit only has, out of all those rooms, three functioning ones. Daughters bedroom, my bedsit, and the kitchen. The rest is a cold draughty building site. Its been like that for a year, as we have practically rebuilt the wretched place. When I came out of hospital last year it was all starting, and I had nowhere to go. I had a kind of mental breakdown, because of it, so I made myself, or rather my children did, a bedsit, up under the eaves, and it is a really nice place to rest, and boy oh boy was I glad I had it. Otherwise I would have just booked into a hotel or something. Anyway daughter is back on her feet again, and I havent starved to death, so I'm just taking it day by day. I'm completely insomniac, so I save up all my pills for nighttime, and take as many as possible at night in the hope that it will knock me out. On top of all that, and even though I was passed for spinal cord stimulation ages ago, the Doctor is iffing about it now, and has lined me up for a spinal injection instead early December. I feel as though I am going back instead of forward.
Better go to bed now.
M.x

Billie,

Wow! This was a big surgery...You seem to be handling things well. You have been through so much ...I will keep you in my thoughts and prayers.

Billie, I don't know what your "underlying" problem is, but there are two other boards you might find helpful. One is the gastroparesis board. Not here, but I think they have their own support group. I think the gastroparesis people have what you have, but it starts from above. Some have experience with the medtronic stim device. Another board is the cauda equina board. Because that is certainly what you've got now.

I, too, had cauda equina, but it was caught quickly enough for most of the problems to resolve. As soon as I had the laminectomy and fusion, the bottom half of my body started working better.


But I don't understand what you have: do you have degenrative spine disease which was allowed to persist so long it devastated you? Or do you have a widespread peripheral neuropathy with autonomic neuropathy that totally denervated your organs?

Usually, I post on the periheral neuropathy board, and some folk there have autonomic involvement.