CCSVI Surgery & MS Constipation question

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CCSVI Surgery & MS Constipation question

Postby Boopieup » Fri Oct 09, 2009 9:03 pm

So, I have MS as we all know. I have had constipation on and off for 4 years. Recently, I can go for 7 days and lately 10 days without going. The only thing that helps is taking a Senna, which I don't like or recommend. It's not comfortable and you can imagine why. My constipation is not a blockage or based on what I eat. I can eat prunes, fiber and bran and fruit while eating no dairy and it makes no difference. What people don't get (nurses included) is that it is not adding fiber to my diet that is the problem. The problem is that my small intestine doesn't move or work well. Once things eventually get to the colon, it's pretty much all downhill.

My question is this.

Have any of you had constipation like this and have gotten relief from it after the surgery? In other words did the surgery fix it?.

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Postby Loobie » Sat Oct 10, 2009 8:13 am

Hey boopie. I have the exact same kind of constipation. It's slow motility and it doesn't matter if I eat straw, sawdust and water, it's hard for me. Now I don't go 7 days before Senna gets involved because I eat a ton and I'd explode! The constipation actually gets worse in the short term due to the morphine and percocet. However, my bowel motility seems to have improved since the surgery. I also started eating Activia everyday but am not sure if that's helped at all because, like I said, nothing helps ever diet wise. I tried the magnesium citrate that everyone talks about helping with bowels and all it did was make my intestines groan and growl and I just farted alot :lol: .

Let me put it this way. For about the last 3 or 4 years, my bowel routine is to eat my breakfast, drive to work, pee, insert a glycerine supppository, and have them work about 20% of the time. And that was just to get a handful of "rocks" out. I even had to delve into the fun, fun world of digital manipulation to get things going. For real, I did not take a shit on my own (you know, just a natural sit down and shit) for well over 3 years. Well I've been doing that since the surgery about 2-3 times a week. All this while my core strength is just going away so it's not like I can all of the sudden push harder.

So something is happening. I'm just not one to go on record and say "yep, it was the surgery that did it" since I'm progressive and if this is going to improve me noticeably it's going to take some time. I want it to help my bladder, that is what rules my life, but this new 'poop by yourself' thing has been a godsend. It was so bad that I was always driking way too much water, which made me even more of a slave to my bladder. But I think my megadosing water was just like Tovaxin and Avonex for me. It didn't do shit. I'm shitting better drinking about 1/2 the water I used to drink when I couldn't, so this is my $0.02 on the subject.
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Postby Loobie » Sat Oct 10, 2009 8:17 am

Before I accidentaly hit Submit I wanted to say good luck. I know you're really struggling with whether to do this or not. It's not an easy decision and what happens to some is not going to happen to us all. If it were, we'd all be in high cotton because we could know what to expect. But you already know that this is all you get what you get based on your case. So I feel it's helped me, but it's not like I'm back to normal.
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Postby gibbledygook » Sat Oct 10, 2009 8:54 am

I haven't noticed much in terms of bowel motility changes but bladder, walking and night spasms are much improved.
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Thanks Loobie

Postby Boopieup » Sat Oct 10, 2009 9:08 am

That was enlightening and I so appreciate your direct honesty and not holding anything back.

I too have done the whole magnesium citrate route, which didn't do anything except give me annoying gas. I've settled with drinking 1/2 gallon of water a day. I have no activity level except trying to get out of bed to go to the refrigerator 10 feet away 1 or 2 times per day. My food intake is 2 small meals per day, which is mostly fiber. If I had some kind of rigorous activity, I'd be dropping weight like crazy. One time a couple of weeks ago I ate a 3/4 loaf of extra sourdough bread and "went" 4 times in one week. I listened to an MS book that suggested eating sourdough bread. The other day I ate 1/2 loaf and nothing.

The Home Health nurses get educated about how MS can affect people differently every time they come out to my house. They all ask about going up the backside to find the impaction. They always marvel at me when I say No because it's not there and it's not that kind of constipation. From what I gather, they are not taught about this kind of constipation and MS in school.

So thanks again Loobie. I really appreciate the info.
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Postby LR1234 » Sat Oct 10, 2009 9:26 am

Fibre can actually cause constipation if it is eaten without getting enough fluids

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Postby mrhodes40 » Sat Oct 10, 2009 9:51 am

From what I gather, they are not taught about this kind of constipation and MS in school


absolutely true. Doctors don't understand it either. If I had a buck for every time they told me to take metamucil and drink plenty of fluids......

$$$$$!!!! :twisted:

I have at times had a routine the always worked...for a while. I had a tried and true routine before surgery that worked but it does not work as well now. I had a lot of complications and lots of percocet, which WILL cause constipation it has to because opioids stall the bowel muscles, so I feel out of pace with my self there.

My MS neuro told me once that in MS patients milk of magnesia does not work like it does in normal people because the problem is no motility, the bowels are not moving so they need stimulation to move (ie senna) not just softer stuff to move. That having been said the longer it is in there the harder it gets.

But I know from a bowel surgeon that some people he has seen have gotten so hooked on senna and their bowels so resistant to it that they can take a whole bottle in a tea before their bowels move!!

Holy c&@p batman!
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Senna resistence?

Postby Boopieup » Sat Oct 10, 2009 10:45 am

I couldn't imagine having a resistance to Senna. All I need is 1 of those things when things get real bad and an hour later watch out. That stuff tears me up.

The thing with me is when I get constipated for days on end, it doesn't get hard. It's actually soft serve (for lack of a better term) and there is just a lot of it. I remember a few years ago I could "go" 10 times in one day. That's when I was still working, walking, and driving. I don't know if having my gallbladder removed 9 years ago has anything to do with anything.

My concern also is after surgery pain med constipation. Is the pain that bad and where exactly?
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Postby Loobie » Sat Oct 10, 2009 10:45 am

Yeah Marie I'm always worried about overdoing cathartic laxatives. That's why no matter what I won't use Senna more than once a week and sometimes lately it has been longer since it's improved. Dulcolax also works for me, but talk about uncomfortable. So I keep shoving the glycerin and trying real hard to do it with no help.

Do you think once a week on Senna will cause 'addiction'?
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Postby catfreak » Sat Oct 10, 2009 12:09 pm

OK, my 2 cents on constipation. This is a subject that stays on my mind 24/7. Like everyone else it does matter what I eat. I love muscadine grapes. If you don't know what they are well you are missing out. Most folks would have diarreeh after eating very many of them and I could eat them everyday. We had a 5 gallon bucket given to us and I ate til my belly ached and then.... nothing! My husband used the rest to start a batch of homeade wine to give as Christmas gifts. So I had to eat all I could as fast as I could.

Anyway, I take probiotic capsules twice a day since I get tired of yogurt and activia. Then I try generic dulcolax for a few days. I have tried senna teas, many kinds, magnesium in all forms and it is still just little "M & M's".

I envy those who have thier morning constitutional. Mine is about once a week. :cry: :oops: :cry: :oops:

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Postby mrhodes40 » Sat Oct 10, 2009 12:44 pm

Let me make sure I am offering honest information here:

I mentioned
But I know from a bowel surgeon that some people he has seen have gotten so hooked on senna and their bowels so resistant to it that they can take a whole bottle in a tea before their bowels move
because the doctor told me this when we were both at a lecture together. The lecture was on bowel function and we discussed research such as the research below.....

There are many strongly held beliefs about constipation that are not evidence based. The purpose of this review is to address these beliefs concerning various aspects of constipation. There is no evidence to support the theory that diseases may arise via "autointoxication," whereby poisonous substances from stools within the colon are absorbed. Dolichocolon, defined as an elongated colon, should not be seen as a cause of constipation. The role of sex hormones altering gut function during the menstrual cycle appears to be minimal. During pregnancy they may play a role in slowing gut transit. Hypothyroidism can cause constipation, but among patients presenting with constipation, hypothyroidism is rare. A diet poor in fiber should not be assumed to be the cause of chronic constipation. Some patients may be helped by a fiber-rich diet but many patients with more severe constipation get worse symptoms when increasing dietary fiber intake. There is no evidence that constipation can successfully be treated by increasing fluid intake unless there is evidence of dehydration. In the elderly constipation may correlate with decreased physical activity, but many cofactors are likely to play a role. Intervention programs to increase physical activity as part of a broad rehabilitation program may help. It is unlikely that stimulant laxatives at recommended doses are harmful to the colon. A proportion of patients with chronic constipation is dependent of laxatives to achieve satisfactory bowel function, but this is not the result of prior laxative intake. Tolerance to stimulant laxatives is uncommon. There is no indication for the occurrence of "rebound constipation" after stopping laxative intake. While laxatives may be misused, there is no potential for addiction.

from http://www.nature.com/ajg/journal/v100/ ... 0534a.html

The OLD point of view was that everyone would get addicted to the stuff and dependent so doctors would actively discourage people using the stuff, but the NEW point of view is that that does not actually happen and so to let folks do the thing that works for them--stimulation if that is what they need--is supposed to be fine. As I said, the GE doc was not in agreement with that point of view.

Really I would say talk to your doctor but let's be real here--we've all done that and we all get the stupid Drink water and metamucil line.

Has anyone tried the Miralax stuff? It works differently. I tried it after my hysterectomy it was still prescription at the time, and it made voluminous soft stool that for me was SUDDENLY in need of a trip to the rest room....that then felt like a really normal movement. It was not explosive like diarrhea and when it was over it was just over, done. But the suddenly worried me because I don't rush very well, so I have not tried it again.

has anyone else?

I am not sure it would be great for you Boopie, I do not know if it has any kind of stimulant angle to it at all or if it is just a volume thing. Have you tried that stuff?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby LR1234 » Sat Oct 10, 2009 3:27 pm

Prunes and/or prune juice good for constipation
If you think it will help I'll try it!!!
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Constipation

Postby Boopieup » Sat Oct 10, 2009 5:28 pm

I got a prescription for a liquid laxative that had to be picked up at the pharmacy. I think it is Miralax. I have not tried it because I'm afraid to. I can't rush to the toilet. I'm just really afraid to try it for fear of a severe runny cleaning out reaction. My M.D. doesn't really understand my type of constipation. He says to eat beans and brown rice. I do and that doesn't work.

Smooth Move tea with Senna doesn't work. Taking one pill does. If I am constipated for 7 days or more, I'll take a Senna pill and that always works but is so miserable. I'm going to try the ducolax. We'll see what happens with that.

Prune juice does not work for me. It just makes me bloated. I've tried eating prunes...nothing. Hot chocolate in the morning...nothing.

What about green tea? What kind should I try? Andrew thinks I should try some. Forget coffee. It just makes me pee like crazy. I've gotten better in the pee area or the pee incontinency area except for PMS time then everything goes to hell..

Activia does not work either nor does any other yogurt. I've had to stop all dairy anyway because it makes my legs hurt more from the fat content. This has been proved to me by doing my own trials. Chicken wings anf thighs especially with the skin on do the same thing. I miss the wings terrubly. Too much mayonaise in one day also does the same thing. I got a lot worse when I drank lowfat milk too. I can't say no to 1 or 2 tablespoons of cheese per week. That seems to be ok.

So today I'm on day 3 of constipation. Since I don't eat that much, it's not too unbearable.

Do any of you have to lay down and rest after "going"? I do. It's like I am completely exhausted after that on the seldom occasion that I do go. The last time I didn't rest on the bed after going I fell in the bathroom hard. That's a whole nother story.
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Breaking news (maybe not) in the boopieup-constpation world.

Postby Boopieup » Fri Oct 30, 2009 8:20 am

This week I "went" Monday and Thursday--soft serve. Coincidence? Maybe. However, I ate bean dip made with rosarita refried non-fat beans, velveeta cheese, and tapatio hot sauce. 1 1/2 cups every day since Monday. Next time we're going to switch the velveeta with tostidos cheese. This is Andrew's proprietary recipe that I give you permission to use. We call it Andrew's Famous Bean Dip.

Hey, whatever works--or whatever might have worked. No senna though.

So that's my poop report. :D
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Postby mrhodes40 » Fri Oct 30, 2009 9:07 am

:lol: I am a nurse myself and I can absolutely say that "they" do not understand what it is like to have something so basic be so whacked out that you actually have a need to make plans and arrangements and special recipes... :x

I hope you get a schedule and routine that works. I am slowly getting back to my old normal5 months after surgery.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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