Hi everyone..I am a 33 year old mother of a 2.5 year old son and a ten month old daughter. I quit smoking in July of 04. The minute I quit smoking, my colon stopped working. I assumed it would get better after I adjusted to being smoke free, but became pregnant with my son just ten days after I quit. I made it through the pregnancy on enemas and assumed things would get better after he was born. They didn't. When he was ten months old, I realized this simply was not going to clear on it's own, so I got down to business. I started getting colonics, stopped eating gluten, sugar, red meat, coffee, alcohol. I started taking fiber supplements and cleanse caps & for the first time things started moving. I was really encouraged. And then I became pregnant with my daughter. I conceived her the day I started the new diet. When I ate gluten, my colon would become so paralyzed that a colonic would be totally unproductive. For an hour, water would go in and nothing would come out. I managed to stay gluten free and maintain a really good diet high in fiber and vegetable shakes throughout the pregnancy. But still, my bowels never moved without laxatives. I did colonics for the first six months of the pregnancy. When she was four months old, I stopped nursing and began parasite cleansing. After two months, I began passing pinworms. Once I saw them in cold hard reality, I realized that I couldn't remember a time that I didn't have symptoms of them. I am still trying to get rid of them. The entire family has been treated several times. The last two times I took everyone's medication (three doses each time) and they still come pouring out. I am actually symptomless at this point, so it's especially freaky. I have never seen them in my children's diapers even after they have been treated, so I am at a loss.

I consume 30-60 grams of fiber a day, drink plenty of water, take coconut oil and olive oil regularly. I live mostly on vegetable smoothies (Vitamix) which I fortify with 4 tablespoons of flax seeds. I ate a raw food diet for two weeks and I might as well have eaten pizza with a double helping of cheese topped with concrete. I saw Dr. Sgambati in Denver, had a colonoscopy and did the sitz mark study. It said....drum roll please....I am constipated. The colonoscopy revealed nothing out of the ordinary and the sitz mark study, I had to call the office twice to get the actual results. There were ten markers (of 26) left in my colon after seven days. Results were abnormal, diagnosis: Colonic Inertia. I am largely unimpressed with her office, so before having my colon removed, I am considering going to the Mayo clinic in Arizona to have their tests done.

Today was my true breaking point with this issue..and this is what I wrote:
The truth of this journey

I have reached the place where I can no longer emotionally withstand
this experience any longer. My last two options that exist are: 1. to
fly to Florida and see a Chinese master and hope he can prescribe
laxatives strong enough to unstop an elephant and something to kill the
worms that I assume live in my body and might maybe be causing something
here. and 2. Check into the mayo clinic in Scottsdale in October and
receive testing that confirms that I cannot take a crap and then end the
week with a surgery that sends me home without this colon.

I cannot leave the house anymore. I now take 8-10 herbal laxatives at
night along with 20 grams of fiber and still have to do 3-4 consecutive
enemas in the morning. I do 3-4 more in the afternoon and evening and
still go to sleep in pain. I have total relief maybe once every two
weeks. I am terrified to eat. But I cannot handle the demands of two
little children on tomatoes and cucumbers. But whenever I eat something
different I feel terrible. And, no I am not constipated because I feel
guilty. I am constipated when I feel happy, inspired, when I meditate,
when I wear blue, when I don't wear blue. I have listened to meditation
CD's while having unsuccessful enemas. I have no patience to deal with
my children when I have consumed enormous amounts of laxatives and still
have try to carve out what precious time I have to do an enema.

I have tried to be so patient. So strong. So sure this would get better.
But it isn't. If it's going to take five more years, I don't have the
emotional capacity to withstand those years. I don't have the emotional
capacity to get through this day doing another enema and having no real
relief. I fully understand the mind body connection. I have spent
thousands on psychics, healers, I have healed past lives, I have gone to
levels deeper than some people who are helping me heal. And this only
gets worse. I now just sit in the bathroom and sob. I feel better than I
ever have in every other aspect of my life.
I don't get it. And now I give up.

I have enough cleanse caps to get through the next two nights. We have 300.00 to get
through the next week and a half. And nothing in savings. I literally
have no idea what to do now. I am riddled with pinworms I cannot get rid
of. I have taken my entire family's doses of the medication - twice. I
have taken a total of eight pills. I have no symptoms, but when i take
the meds, tens of thousands of them leave my body. How can I rid myself
of any parasite with a colon that does not move - even while i spend
hours a day - literally - and hundreds of dollars to try to make it
happen. I have been doing an herbal parasite cleanser for five months now, and while
I do pass things that make you go more than hmmmmmmmmmmmmm....I still get no relief. Unless i consume
50 grams of fiber, take ten laxative cleanse caps, and then do five consecutive enemas the next day.
(I take one enema, release some water, take another, release some water)..It's beyond insane.

I am breaking down in every way because of this.

I can't believe it. I really believed that with diet and work on the emotional level
I could get through this. But I have reached my point where I can't emotionally withstand
it. My colon hydrotherapist even acts like I am crazy. I am constipated because I am
stressed out about it. Or because of bad traffic. Fight or flight! I tell her, "Yeah. If
traffic is going to cause me to be constipated, then I am in trouble. Unfortunately, this
life contains traffic." She had the nerve once to tell me that I was "impatient". Niiiice.
I assure you, I could be meditating inside the belly of Buddha and no **** will leave this
body.

Most of you seem to have the opposite problem. Are there any constipation sufferers here who have not gone totally bonkers and can still speak in complete sentences?

My heart goes out to everyone living with severe digestive issues..this is a wild journey with so little support. This is a great site..I am glad I found it as a colectomy is looking like a very likely possibility in my future.

Dear Heavenly,
You have been through so much and persevered with strength like so many who come to this site for support and advice. Whatever you decide as your next step, you will have amazing support from everyone here. Jan Dollar may also have some expert advice for you - she is our resident angel on all things medical/digestive.
Not to suggest that your doctor is wrong in any way, but you may want to consider a second (or third) medical opinion just in case an idea may come up that could help you.
I am sure you have tried just about everything but...just in case have you tried Citricidal (its a highly intense dose of grapefruit seed extract) that is known for its anti-bacterial and anti-parasitical properties. The liquid works best apparently (but drink it in some grapefruit juice because it is absolutely disgusting otherwise).
I'm sorry to not have much else to offer - someone else here may have some advice for you. Hope you find some relief soon somehow - even if you have the j-pouch surgeries, you'll find the success rate is very high for most people who have suffered terrible digestive problems such as yourself. You will get through this and we're all here to help support you so rant, rave or whatever you need to do.
Best wishes for restoring your health and please keep us posted.
Nicole

You might visit Healing Well's Ostomy discussion board at www.healingwell.com There are several people there who had surgery for CI. If you are opting for surgery and your surgeon's plan includes leaving any part of the colon, I would question that decision. A lot of CI sufferers have been given partial colectomys which leaves them still suffering with sluggish bowels. I don't know why the standard treatment for CI is not a total colectomy.

Yes, living with chronic UC or with CI is not a good way to live. Also for both groups, life post surgery is not the same but in my case life post UC is far better even though it's more challenging.

I wish you well in your journey.

Sue

Heavenly - wow. Thanks for the education on a condition I never even knew about. And my heart and prayers go out to you and your family. What you are going through is stressful on everyone, I'm sure.

I think you are still on the right track, but have some tough decisions to make. It sounds like you have tried so many things to overcome your condition. Many of us did the same thing with ulcerative colitis. And like us, you are being faced a Quality Of Life (QOL) decision.

For some, the decision was forced upon us because our bodies gave out - and we were left with surgery as our only option. Others have lived for years on medications that have their own negative side effects. But all have reached a point, one way or another, where we have to ask what it is we can do to continue to truly live life.

Again, the answer differs. Some of us have had a colectomy and j-pouch construction - improving our QOL significantly. Others have opted (for one reason or another) for a permanent ostomy. But in both cases, the vast majority of people feel like they have their lives back.

If you are feeling like you are at the breaking point and just want to live again, I would advise discussing your options with a qualified surgeon - like at Mayo. In your shoes - losing your savings, spending hours medicating, spending more hours thinking about and obsessing, feeling like you can only do things half-way with your kids - I would be switching gears I think.

Whatever you decide to do, we will certainly encourage you any way we can in order to help you get your life back.

Steve

Well, you'll know when you've had enough. You might want to PM Janna. She was on lots of laxatives before she finally had her colon removed. She had a one-step procedure and she was the poster child for the j-pouch. She's recently had to have some repair work done but I know she absolutely does not regret having the surgery.

If you do a search here on Mayo Clinic or Arizona I think you'll come up with people who've had their surgery there. You might want to contact them as well.

I don't know how you've made it this long without performing surgery on yourself. It seems like it's time for that baby to go, doesn't it? Good luck with your decision making and let us know how things are progressing (or NOT progressing in your case.... )

kathy

Oh my gosh!! You have done so much more to preserve your colon than I would ever entertain. You must have a load of grit and determination! Plus, I cannot imagine dealing with colonic hydrotherapists who think they know a thing or two about real medical conditions! Life's too short for those sorts of conversations....

However, I digress. While the pinworm infection is distressing to you, it is not dangerous. As long as you are not having symptoms, it is not a huge deal. But, you are undoubtedly reinfecting yourself. Hopefully, after taking the treatment, you are washing all linens in hot water every few days, along with underwear and pajamas daily for a few weeks. You may even want to have your carpets steam cleaned (although this generally is not required). http://www.emedicinehealth.com/pinworms/article_em.htm

But, again, the pinworms are the lesser issue. Colonic inertia can be a serious disorder and it cannot be cured with colonics, fiber, laxatives, or voodoo, unless the cause is dietary (although in mild cases such treatments can provide some semblance of functionality). Before I make any drastic suggestions, one thing comes to mind that you did not note as something you have tried. Since your problems began with smoking cessation, I would think that there was a dependence on smoking for bowel transit. Have you tried using the nicotine patch or gum to help stimulate the bowel? It's a long shot, because there probably is too much damage, but I think it is worth trying before you consider surgery. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

Surgical recommendations are total colectomy with ileorectal anastomosis (if there is no rectal inertia), according the guidelines. However, these had not been updated since 2001. http://www.guideline.gov/summary/summary.aspx?doc_id=3061
There are some studies showing good results with subtotal colectomies when the inertia is shown to be confined to a segment of the colon with normal motility in the rest of the colon. This requires very careful evaluation.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&d...12&dopt=AbstractPlus

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=...anel.Pubmed_RVDocSum

Electrical pacing of the colon is a novel concept with some small studies showing some success, but it is not currently available outside of research and there are no commercial products currently suitable for this use.

I am not sure I provided any help for you, but if you decide to go forward with surgery, please consider us for support and information.

Jan

Hi Heavenly, I am so sorry to hear what you are going through. I had UC for over 20 years and as a last resort to keep my colon, I tried prednisone. I started with a high dose intravenously and from that moment on, my colon stopped working. I had to take alot of laxatives and wasn't eating very much. It's pretty rare to have that happen with prednisone, so my GI sent me for tests to rule out motility problems.

One of the tests was a sitz marker test, I had to swallow a pill with radioactive markers and then wait 6 days and take an xray so they could see how many markers were left and where they were. I wasn't able to take any laxatives, so I didn't go to the bathroom for 6 days. When I went for the xray, the technician was so worried because everything was just backed up. My doctor's answer was to go home and take extra laxatives. I ended up passing out in the bathroom that night. The first and only time I have ever passed out, and it was a scary feeling. About 2 weeks later, I scheduled surgery.

I know my situation is different from yours becuase I had UC for most of my life. But, I just want to let you know that if you decide to go for surgery, your life will be much better than it is now. I know what it feels like to live on laxatives and how it makes your body feel. It's a terrible way to live.

I was so tired and beat all the time, because all the nutrients that you are trying to put into your body just come out with the laxatives.

If I can help in anyway, please let me know. I know your situation is different, but this is a great place for help and support.

Good Luck,

janna

Heavenly,
My heart goes out to you. I don't have much more to say than that has already been said. I also think a visit to an MD with expertise in CI is warranted. I also want to second Jan's suggestion of nicotine patches. I've done some reading in the UC research literature, and one of the risk factors for UC, believe it or not, is quitting smoking. Of course, you shouldn't start smoking again, but the nicotine patch is not too expensive and might be worth a try. Do get a second or third opinion from a medical expert in the field. I hope this cite has helped or will help you make some decisions that will improve your health and quality of life.