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TLem

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Reply with quote  #1 
My Husband was diagnosed this summer with CVS after 14 years of illness. recently, he has had a lot of problems in the morning during a bowel movement of feeling sick and having to get in the shower to try and feel better, most times a full episode does not occur. Anyone having this problem? ALSO - is there information to give our Family Dr. to educate him on CVS? My husband was diagnosed by a surgeon at our hospital after 4 visits in a month to ER and they finally scoped him to see what was happening from his throat to stomach and the Surgeon was the one who said he though he had CVS. (Dr. McCalla Ottawa, KS)
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Tim LeMoine
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BathBoy

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Reply with quote  #2 
Hiya

I started this thread a couple of months back -

http://cvsa.websitetoolbox.com/post/Crohns-amp-CVS.-Toilet-Triggers-6007833

Have a read. One of my main triggers is feeling sick during a bowel movement which then leads to a full blown attack. Like your husband, I am able to abort many episodes in the bath but the odd one sneak through

I am doing alot better these days by taking Amitriptyline and coq-10 and my bowel movements have been, shall I say, abit more pleasant thankfully! It has been somewhat amazing the effect these 2 meds have had on the amount of "bad poos" (i call them lol) I have.....only 1 in the last 3 weeks whereas it was atleast everyday a couple of months back and like that for 15 years.

I have only been taking them for a couple of months but I have noticed a big difference and I dont think its a co-incidence. I will add aswell, I take "movicol" stool softener everynight to help stop me being constipated as i find that constipation makes things worse.

Hope ive helped and any questions please ask. We cant mention doses on the forum but if you are wondering what I am taking etc just send me a pm...it sounds like your husband could suffer similarly to me so we can maybe share some tips

Here is the link to the information on the main page here about. coq-10 and amitriptyline - http://www.cvsaonline.org/pdfs/Co-Q10%20&%20Amitriptyline%20Article.pdf
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TLem

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Reply with quote  #3 
thank you very much for responding, that is helpful, now I have to email this info to our Dr. in hopes he will become educated on this syndrome and maybe we will get some relief. I hope you continue to feel better.
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Tim LeMoine
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herold

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Reply with quote  #4 
google CVS and print the wikipediea 4page explaining CVS.
Quote:
Originally Posted by TLem
My Husband was diagnosed this summer with CVS after 14 years of illness. recently, he has had a lot of problems in the morning during a bowel movement of feeling sick and having to get in the shower to try and feel better, most times a full episode does not occur. Anyone having this problem? ALSO - is there information to give our Family Dr. to educate him on CVS? My husband was diagnosed by a surgeon at our hospital after 4 visits in a month to ER and they finally scoped him to see what was happening from his throat to stomach and the Surgeon was the one who said he though he had CVS. (Dr. McCalla Ottawa, KS)

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herold green
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herold

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Reply with quote  #5 
i to have sufferd from CVS for 17yrs and i have the same problem with bowl movements and miss work alot cuz of the morning nausea after i poop. i guess we just have to cope with the situation as best we can. know its coming and be prepared with a hot shower and meds.
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herold green
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BathBoy

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Reply with quote  #6 
Hi herold, another bad poo'er lol

Have you tried taking Amitriptyline and COQ-10? Its done absolute wonders with my "bad poos" 

As I said, I started taking it a few months ago on a low dose. Sorry we are not allowed to tell our doses on here but PM me if you are interested. The impact was almost immediate and not expecting anything at all I was absolutely amazed to have a few weeks symptom free! This hadnt happened for years!!! After a couple of months I noticed my symptoms to creep back in unfortunately. After reading other peoples stories I saw that they also "levelled" out with their dose after a couple of months and had to increase it, maybe twice to find the correct dose for them.

I did this with the advice of my doctor and again I am back to normal bowel movements

I cant tell you what a difference this has made to the quality of my life! I am no longer afraid of everything I eat incase it brings on those awful spasms and nausea during a bowel movement that lead to an attack. 

Speak to your doctor about it if you have never tried it. Like I said, its been like a miracle for me!




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ginny

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Reply with quote  #7 
Hi Bath Boy, it is not unusual for the need to increase your medication.  There is information on this on the CVSA web page and should be searchable on the message board- but you are correct that there will be no doses.

CoQ10 helps many and some do better with LCarnitine added. If you have prescription plan for medication the LCarnitine can be obtained by prescription thus costing you the copay plus providing you with pharmaceutical quality.   Dr. Boles told me that he finds adding Vitamin B, after the CoQ10 has been established, can often make the biggest difference.

I am glad to hear that you are doing so much better, I hope this continues for you.

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ginny CVSA Moderator
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rednursercr

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Reply with quote  #8 
I just wanted to say thanks for sharing to everyone especially in this thread ...my husband has been suffering severely for the past 2 years..his symptoms became so severe they aggravated a pre-existing heart condition and he ended up with a pacemaker. HE IS 42. He too suffers the most in the morning during and after a bowel movement. I cannot tell you how many doctors just looked at us like we were crazy people when we described the problem. Anyway I suggested he try the hot shower and taking his meds at the same time as several of you described and he has been able to greatly reduce his symptoms. Please keep sharing and thank you again
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BathBoy

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Reply with quote  #9 

Hiya rednursercr

Sorry, I have only just seen your post. I have had a massive breakthrough with my bad bowel movements. Have a read of this thread, it explains it all - 

http://cvsa.websitetoolbox.com/post/A-Possible-Breakthrough-For-Me-(Impaction)-6263246 (for some reason it isnt linking to my thread, it is not far on the first page anyway)

I will send you a PM in the hope you get an email because it sounds like your husband suffers exactly the same trigger as me with the bowel movement. This trigger for me hs been linked to a massive impaction of my colon. Now I am breaking it all down I am feeling fantastic........I dont even have to abort attacks anymore, the just dont occur in the first place


Best of luck, hope this finds you sooner rather than later!

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Bethgifford

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Reply with quote  #10 
Has anyone's doctors recommended Align daily and Miralax in a glass of water each morning.  Apparently the Align can take 3 to 6 months to really work and I am just starting on my second month and still have horrible "poo" issues but I am trying to stick with it and see if it kicks in.  I would like to know if anyone else has been told to try this.  My doctor at the Mayo where I was diagnosed recommended this.


Thanks for your help.  Beth
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BathBoy

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Posts: 65
Reply with quote  #11 
Hiya again lol

I have never heard of them but a quick google and I can see why your doctor has recommended it. Have you ever had a stomach xray? Read my thread about being impacted if you also have poo issues. I have had these issues for years and I finally have an answer or atleast a possible answer for them! Mornings are so much more pleasant since taking amitriptyline but I also believe the impaction was atleast one of the triggers for my CVS.

Any questions please ask away
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betsiam

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Reply with quote  #12 
Hi everyone.  i would just like to share a bit of my experience.  my terrible bm started when i was 19.  it took me about 6 months to put everything together.  that whenever i had to poop i would feel very nauseated and vomit.  i had 72 er visits in a year and a half.  severe dehydration, torn esophagus, i weighed about 95 lbs and i am 5'6" , it was terrible.  this went on for years.  i would spend hours in a hot bath for just any sort of relief.  this went on for years.  i was finally diagnosed with cvs after about 10 yrs.  but what was so hard was the disbelief from all the docs when trying to explain my symptoms.  i am 40 now and in the last five or 6 yrs have greatly improved with meds.  i take neurontin twice a day.  thorazine for the vomiting.  i get up early to go to the bathroom.  always have to take a bath, than go back to sleep for a couple of hrs.  i had a hysterectomy about 5 yrs ago and it helped me soooo much.  my bm were always worse around my periods.  i have to be very careful about what meds i take.  antibiotics almost always set me off.  but i very seldom lose whole days like i used to.  this site is so helpful and i love knowing im not the only person in the world that lives with this.
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betsy
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demoncleaner

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Reply with quote  #13 
@bethgifford

hi beth, I noticed the mention of probiotics, I have used quite a bit over the years, and am a firm believer in the theory of probiotics. there is a lot of hype that has been generated over the last half dozen years about them and the current commercial trend is not necessarily a good one. It warrents doing some research, like anything else, to get to the bottom of the probiotic picture.

the absolute best way to recolonize your gut with probiotics is to make your own yogurt with specific bacterial cultures. this is the best way to actually get LIVE bacteria into your gut. many probiotic supplements are packaged in such a way that the bacteria are already dead or will not pass thru the stomach, as well as containing "flavor of the month" bacteria that has not been shown to be effective or safe. the best approach, is the natural approach and yogurt has long been the traditional method of this, as these are the exact same bacterias that make yogurt possible.

the best bacteria to use for making yogurt for the purposes of probiotics, would be good ole' acidophilus, which has been used in yogurt production for decades. L. acidophilus has been shown to be probably the best neighbor bacteria for the gut.  Lactobacillus bulgaricus and S. thermophiles are also preferred yogurt making strains when talking probiotics. all of these strains produce slightly different yogurt properties, from tang, to creamieness, so manufacturers usully use a blend of bacterias in commercial yogurt. these strains are all readily available for mailorder from various cheesemaking supply sites. making homemade yogurt is very simple. L. acidophilus is safe and makes a very nice yogurt. it is hard to find commercial yogurt with only this one bacteria, but they do make them. most are blends of other strains you don't necessarily want, never mind the sugar. another great benefit to making yogurt is that you can allow it to ferment much longer than commercial yogurt is allowed to, thereby consuming all of the lactose in the milk, making a very nice yogurt for those of us that are lactose intolerant, like myself.

not all the "probiotic" bacterias make good supplements, and bifidus in particular, has been shown to overcolonize and cause imbalance, thus making it a poor choice for those of us with gut issues. unfortunately, this is one of the flavor of the month strains that has been put into a ton of yogurts and probiotic supplements over the last decade. Bifantis (Align)is a bifidus product, (Bifidobacterium infantis)and while there appears to be some compelling information showing it to be effective in IBS treatment, further digging shows that the study was sponsored by the company selling the product. and further digging shows more compelling evidence against the use of bifidus in those of us with compromised guts, so that is one strain in particular, probably THE strain, that I would be most concerned about using as a supplement. I would just recommend doing a half days reading on the subject before using it regularly if already suffering from gut issues. its at best some info for, some against, so at this point I avoid that strain in particular, if for no other reason that the information I read against it was more compelling to me than the pro info at this point and I would rather err on the side of caution, since other proven strains are available.

any probiotic program will indeed take a few months to kick in, and is really only half the story. not only should one be feeding on beneficial bacterias, but you should also be doing a sugar restricted diet at the same time to starve out the bad bacteria that causes imbalance to begin with. that is, if you really want to get the full effects of using probiotics, that is the most sensible way to go about it. if your are overcolonized by bad bacteria, which is what happens, you will have a very hard time "pushing" out the bad with the good, as the bad already own the block, so to speak. you can look at diets like the SCD diet or primal diets to learn more about the role of sugar and bad bacteria colonization of the lower and sometimes upper intestines. just taking a supplement and hoping to eventually colonize with benificials in balance, kind of goes against the logic of using these bacterias to begin with. that is what the supplement companys want to you believe so you keep buying their pills.  

grumpy poo's have long been a trigger for me. have had the most success using carb restricted diets mixed with probiotic yogurts, apple cider vinegar treatment to neutralize system ph,. if you want an end to painful gas, bloating, cramps, ibs symptoms, etc, embark on one of these diets for 3 or 4 months. you will more than likely suffer a dieoff period where you will feel worse for a week or so and then things get better by the day. I have been able to achieve as much as a 2 year remission from CVS with these diets. last year, I developed crippling IBS type stuff that I had never encountered before. I used the SCD diet and it completely ended the bowel issues for me within a couple months.

these diets are challenging however, from energy level, to cost, to convieniance, they represent a major shift in your entire life.

just my 2 pennies on probiotics. total believer, but don't believe the hype either, there is a lot of bogus marketing speak out there right now about them, as they represent a hot segment of the supplement industry, so lots of $$$ to be made selling snake oil. grow your own, it could not be easier and its far cheaper than taking pills that may/may not even be viable bacteria by the time you buy it. if you notice, at health food stores, the probiotics are in the fridge for a reason.

good luck all
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melyssatwin

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Reply with quote  #14 
one thing that i would like to add about cvs is that when vomiting alot of people lose alot of pottassium and if that is low that could make you feel like vomiting and your muscles mostly my legs get really sore also ask your doctor about taking pottassium after vomiting i know i get pottassium at the hospital while i am there oh and dextrose but the dextrose is only when i am in the hospital to keep my sugar levels up and with the l-carnatine it can make you tired witch can stress you out as well and likes to pull at the pockets 
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i will never let cvs take over who i am
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betsiam

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Reply with quote  #15 
I got sick at 19 after a very severe kidney infection. Took almost 10 years for a diagnosis. I am 45 now. My cvs has always been associated with my bowel movements. It’s pretty debilitating. I keep my bm’s soft and moving but regardless cvs has a firm hold in my life. I just hate it and get so frustrated
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betsy
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