Colonic Inertia with Pelvic floor dysfunction

• By Kate1
• Posted August 28, 2008 at 9:00 am

Hopenpeace- I don't have any answers to your specific questions, but I wanted to welcome you to the group. There are others here on this site who suffer with similar disorders, and hopefully someone will be able to offer more insight into your particular situation.

I wish you the best and hope that you find support and maybe a few answers here on this site.

Kate

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• By hopenpeace420
• Posted August 28, 2008 at 9:20 am

Hi Kate, thank you very much for the warm welcome. I too hope that I can find some answers and maybe someone who is going through the same thing I am. Thanks again, Lisa

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• By Dimcc
• Posted August 29, 2008 at 8:10 am

Hopenpeace

I feel your pain. I am 41 and have been diagnosed with the same two things as you and have been seen by many doctors (even a university out of state) with nothing working......until now.
There was a post earlier this month called "On going saga of constipation-everyone's favorite subject" . I posted my story over there. I came to the end of my rope and had already been to two colon surgeons and was scheduling my colon removal when a book changed my life. I have read many books but this is the only one that truly worked. It is called "Healing Digestive Illness Root Causes and Solutions" by Russell Mariani. It is a very very intense holistic approach that is not for everyone, but if you are desperate and willing to take herbal supplements and make dietary changes, it might work for you too. For 1 1/2 years I could not have a bm at all without the use of laxatives including enemas. For the last 6 months nothing but enemas gave me any relief at all and some days didn't even work either. I was miserable and the bloating was painful. Since mid-July I have had a bm daily with no distress, pain, or bloating (except for some hemorrhoid issues). I have my life back and continue to follow the program. It will take many weeks to months for a full recovery because I did not get like this overnight and will not repair the damage overnight either. It is not an easy program to follow but I figure it would be a lot worse having the surgery. I have consulted with the author and that keeps me on track. My son also has colonic inertia and he started the program too but not as strict. He is also doing better than on the Miralax he was taking. This program should regenerate my colon so that after time, it will function normally without the use of any medications and supplements.
I have already seen dramatic changes in addition to my colon functioning including clearing of my skin and much energy. The first couple of weeks were a bit rough because of the healing crisis. This is when your body purges toxins and you get very fatigued and I had lots of acne. Then everything turned around and I have lots of energy and super smooth healthy skin. The formulas are also so much more gentler on your system than dulcolax was. It doesn't make you run to the bathroom or give you bad cramping.
I just wanted to offer you an avenue you may not have tried before. It definitely is not for everyone because it takes commitment, but the side effects are better health for your whole body. Good health starts in the colon. God bless.

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• By EVA-2008
• Posted August 29, 2008 at 10:15 pm

Hi:

My daughter, Carolina, has pelvic floor dysfunction and she was in the retraining program in Mayo Clinic, Rochester, MN and it has helped her a lot. Maybe you can check with them or with a hospital near your town.

At Mayo she had a wonderful therapist Ellen and went through al lthe process with her hand by hand.

The program is with biofeedback.

Check that out first and the surgery should be the last option.

God bless you and may you find the solutions and be healed.

My daughter takes Miralax twice a day.

Sweet dreams everybody!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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• By NancyL
• Posted August 30, 2008 at 4:59 am

Dear Hopenpeace,
Welcome to the group. I don't have a bag but I have a friend that has had one for years (colon cancer) and a cousin (ovarian cancer). I can tell you honestly. There is no smell. None what so ever. My friend I knew for about 2 years before she even told me she had a bag. The most embaressing thing for her was it sometimes makes loud fart noises. Although I have never heard any. My cousin had more problems- specifically they had to do another after problems with the first one. And the first one never quite healed. And she was pulled aside at the airport because the security person felt she was hidding something under her shirt. It was very embarassing for her.
My GI doctor explained to me that I have about zero moltility in my colon. From what I read hear it seems to be the same thing as colonic inertia. She told me that I need to stick to a liquid diet. That I did not have the ability to pass solids. And I also had to avoid bananas, tea and a few other things. And to take Miralax as much as I needed and 2 senocot daily. That didn't work that well until I added fax seed oil capsules on the advice of a friend with similar issues.
When I did stick faithfully to the liquids I felt good and did just fine. Now I am having a real hard time staying away from food. It is like a cocaine addict that knows there is a huge pile of cocaine in the next room. My husband is really skinny and literally eats all day long.
He is really supportive and does not give me a hard time about not sitting at the table or wanting to go out to eat. I have been cheating (eating solids) and it has been weeks since I have been able to move my bowels at all. And I am feeling sick and have gained a bunch of weight and I know what the problem is and yet I still find myself eating! I think about a colonoscopy but I would rather find a way to just stop eating solids.
I am glad you are here. This is a really great group of understanding people and they have given me so much support.
Nancy

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• By hopenpeace420
• Posted August 30, 2008 at 6:08 am

I just wanted to say thank you to all who have replied. I have found out some new news from my doctor, he said that after having the laprascopic ileoreactal anastmosis (the bypass of my colon) and finding out that this still did not work for me except for causing constant pain in my upper abdomen and then getting the whole surgery reversed so that I could get rid of the pain. The reversal was done in May of this year. Anyway, I was told now that if the bypass didn't work then hooking me up to a stoma wouldn't work either. They have upped my dosage of the miralax to 6 full capfulls filled to the very top per day. I just don't know where to turn any more. I can't go out to eat, go shopping, or just go out period because when I have to go it comes on quick. The other thing I forgot to mention was the fact that I don't get a warning of any type of cramping when I have to go, I only get a bit of pressure in my rectum. I also feel so tired all the time and I was wondering if anyone else who suffers from this feels weak and tired 24/7. Also, I want to thank the person who wrote me about the book to read but I have to say I don't see how a book could possibly heal coloniv inertia and pelvic floor dysfunction. I appreciate your input as I do with all the responses that I have recieved so far. I have tried the pelvic retraining at home and was also giving a device that I would have to insert into my rectum to help the nerves and the muscles but it didn't work. The other thing I wanted to mention is the fact that I suffer from Fibromyalgia as well and sometimes I wonder if all this is caused by the Fibromyalgia because it seems that I have suffered with colonic inertia since having the Fibromyalgia. Once again, I feel like there is nothing left for me to do and I guess I will remain a hermit crab for the rest of my life. If there is any good doctors out there that may read up on some of these things I would greatly appreciate your input as to weather or not there is any other options for me at this point. The one thing I don't understand is why my doctor says that the stoma won't work. How can he know this from my first surgery of the bypass? I really wish I could go to the Mayo clinic but I live in NH., so that would be a bit far for me to go. Once again, thank you all and God Bless, Lisa

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• By jacy1
• Posted August 30, 2008 at 11:29 am

Lisa

I can echo all the comments made to you to try everything first before any surgery. My problem came on just about overnight. All of a sudden I could not have a BM. At first they said IBS. Okay tried the diets, excercise, belly massages, Zelnorm and Amatiza. Sort of muddled through for about two years. Then wham - major major pain, bloating and no bowel movmenta no matter what I did, yet the horrendous pressure in the rectum, because the stool was there and could not be expelled. Had all sorts of tests, went to doctor after doctor, got sicker and sicker. I honestly considered ending my life , it was that bad. Lost a lot of weight, because I just could not eat, went to the Mayo clinic, where they said I did have low normal motility, but had obstructed defecation due to a pelvic dysfunction, The Mayo said, surgery often had poor outcomes for this, but sometimes the only option, but to try eveything first. Did the biofeedback, physical therreapy, etc, but it did not work for me. Tried holistic methods, to no avail. I was living on three or so enemas per day and Golytely every three days to survive. Had no life, was also a hermit crab. Finally the colo- rectal surgeon said we need to try a fecal diversion. Since all the tests showed that stuff was moving through the colon, but hung up at the rectum, he did not want to remove the large intestine. He also told me there were no guarantees. I had a permanent colostomy in January. While wearing a bag is obviously not ideal, the surgery did work for me. I do take a tablespoon Milk of Magnesia everyday, to keep the stool soft enough. I can do everything except lifting and abdominal type excercises. Oh yea, I love swiomming and I can do that. Th bags ( or appliances as they are called) are wateproof and odorproof. I pobably spend 15 minutes a day taking care of the stoma and chaging or emtying the pouch. My life has improved I would say 80% and I have a life back.
jacey

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• By hopenpeace420
• Posted August 31, 2008 at 4:11 am

Thank you for your input Jacey, I'm glad to hear that things are working out for you. I wonder if anyone here has one other problem that I have with the colonic inertia and pelvic floor dysfunction. I am having a very hard time on getting my family to understand that I'm not well after more than 10 years of suffering from this. They see me and don't see anything wrong with me including my Fibromyalgia and I think it's hard for them to believe that I'm suffering all the time. It's so very rare that I have a good day and I can't plan things with my family because I have to go off the Miralax a day or 2 before I go out for any length of time to avoid an accident or not having a bathroom around quickly. This is just all so frustrating for me. Sometimes I just want to throw in the towel and give up. Once again, thank you all for telling me your stories and may God Bless each of you. Lisa

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• By NancyL
• Posted August 31, 2008 at 1:00 pm

Hi Lisa,
As for feeling tired/exhausted all the time. I do and I think it is very common here. I don't know if it is because of all the effort involved in trying to go to the bathroom and / or poor diet because I can't eat most things or just the physical exhaustion that accompanies feeling sick all the time. My friends and family were great before and after my operation because I really looked terrible. But now that I have gained the weight back (plus 20 pounds) I look so much better that they really don't understand. I can say honestly that I didn't understand before getting so sick how someone could look good and be really, really sick. I think back to my mom when she was dying of cancer (before the diagnosis). She looked well and I didn't pay enough attention to her complaints of not being able to eat. As it was the tumor growing in her stomach kept her from looking like she had lost much weight and she did look good to me. I don't think you can alter someone else's perception and the best you can do is just try to not let it affect you. We here know how sick you are and feel.
Good Luck Lisa!
Nancy

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• By hopenpeace420
• Posted August 31, 2008 at 1:18 pm

Hi Nancy, so sorry to hear about your mother, I lost my father last year and it's been terrible. As far as my weight goes, I have a problem losing weight and I believe it is due to my colonic inertia and pelvic floor dysfunction. My belly is the worse place of all my weight. Sometimes when I can't go at all I look to be 8 or 9 months pregnant and I wear all baby doll tops to cover it up, thankfully those are in style right now, LOL! So I guess it is normal to feel sick and tired all the time. I nap every day for about 3 hours and I have no problem falling asleep, the odd thing is that if I don't nap during the day, I won't sleep good that night. Anyway, thank you so much for your kind words and I wish you continued good luck. Lisa

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• By allenshe
• Posted September 1, 2008 at 9:15 am

Hi, I wanted you to know that 12 years ago, I was diagnosed with a motility disorder, which initially was thought to be restricted to the large intestine. There was a significant portion of the large bowel that was not working. I suffered with chronic constipation along with chronic pain for a long while. After much consultation, tests etc, I opted to have a colectomy (removal of the majority of the large bowel), hoping this would help solve the problem. I was assured at the time that the potential of having a bag was minimal and everything possible would be done to attach the sigmoid colon to the small bowel. This was done successfully. During the surgery, they also found a benign tumor on the gall bladder which most likely contributed to the chronic pain I was experiencing. Recovery from the surgery took about 8 weeks but it became apparent that the motility problem was not totally solved through this surgery. They found the motility issue encompassed the entire GI system. For many years I suffered with severe nausea, vomiting, diarrhea although the chronic pain was gone. I have been on domperidone, pantaloc and maxoran since then. Over the years I have gone from liquids, to mushy foods, to now eating just about anything I want. I must say though, I still have bouts of nausea regularly with some vomiting. As we all know, there is no rhyme nor reason as to why and when this will hit. With the large intestine gone, bowel movements are 5-7 times a day but are manageable. Depends on what I eat. I still look for the bathrooms wherever I go - I don't think that will ever change. I was fortunate that I did not require a colostomy or ileostomy. I had a friend who had to have an ileostomy and she managed with it. There is certainly a lot of support in the community for those who need to go this route.

Not sure if this helps or if you have considered this type of surgery but thought I would share this with you.

Best of luck and would be interested in hearing of your progress.

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• By hopenpeace420
• Posted September 2, 2008 at 4:45 am

Hi and thank you for your story. I was just wondering how the doctors can actually tell (besides doing a sitz marker study) how much or where in the intestines is effected by colonic inertia and what is the difference between motility disorder and colonic inertia? I'm not very smart with words so please excuse me for asking this. The first surgery I had done was connecting my small intestine to the rectum (bypassing my colon) to see if that would work but it failed and as I stated before I had this surgery reversed because it didn't work and it only caused me pain due to gas excaping into my colon. From what I understand the doctor tells me now that there is nothing more he can do for me so I'm assuming my colonic inertia involves my small intesine as well. Does anyone here know if there is anything more the doctor can do for me or do I have to spend the rest of my life like this. I'm so tired of being sick and tired. I take the Miralax now at 6 capfulls per day and go to the bathroom at least 10 times per day but if I take any less then this amount of Miralax I can't go at all because if my stool gets any form to it at all it will not pass, I guess this is due to my pelvic floor dysfuntion as well as the colonic inertia. I just want to live again! : ( Thank you all for your feedback., Lisa.... PS. please excuse my spelling.

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• By Kerri-ann
• Posted September 22, 2008 at 9:27 pm

Hi hopeand peace,

I was just diagnosed w/ PFD not colonic inertia because my colon was removed 6 yrs ago. I have small bowel dismotility, gastroparesis, chronic intestinal obstructions and some other GI stuff. I am sure you won't need a bag. I haven't yet and 5 ft of my colon is gone and reattached to rectum. I too am on the miralax 2x a day w/ 8 tbsps of milk of magnesia daily so understand where you're coming from. The staying at home and the sounds coming of you, all of that fun stuff. I totally relate to everything you said. I have no idea what to do about the pelvic floor dysfunction- I started doing pilates class on the reformer machine and believe it or not the breathing seems to be helping because it comes from the pelvic area or you breathe into the pelvic area and the piltes focuses on it. If you'd like to chat more send me a message.They told me to do biofeedback? Did you hear that too? Welcome to the group and if you have any insight on the PFD let me know.-Kerriann

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• By flhawe
• Posted September 23, 2008 at 6:28 pm

Hi, I had the same problem with colonic inertia and pelvic floor dysfunction. Massive amounts of laxatives were not working so I had the ileostomy. I am not recommending surgery but it was the only option for me. It did not stop my motiliy disorder with GP and small bowel spasms but was a blessing with the large bowel issues and pain. I had a continent internal resevoir procedure done call BCIR for Dr Barnett. No bag on the outside, they build one from your small bowel inside, just use a small plastic tube to empty it. You can go to BCIR.com and research it. There are three surgeons that do the procedure. I still suffer from small bowel/GP pain and nausea but no longer have the issues with colonic inertia. Just remember if you have a motility disorder having the ileostomy will not take away all your problems but will make life somewhat better. Hope all goes well with you.

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• By hopenpeace420
• Posted September 27, 2008 at 5:14 am

Hi, thank you for the information, I did check out the web site and I don't think there are any doctors in my area that does this procedure. There is one thing that I just don't understand comparing myself with other stories I have read about colonic inertia. I seem to be the oppisite as far as pain and weight goes. I don't have pain and I'm over weight. Ever since I have had the colonic inertia I don't ever suffer from any cramps at all. I can remember when my bowels were normal I would get cramps when I really had loose stools. Now with the high dose of marilax 12 capfulls per day my stools need to be very loose in order for me to go because of the pelvic floor dysfunction. The other thing I don't understand is how can my doctor tell what part of my intestines is affected with the colonic inertia? I had one surgery where the doctor bypassed my large intestine and hooked up my small intestine to my rectum or the very lower part of my colon, but this failed and only caused me pain in my upper right part of my abdomen due to gas escaping into my large intestine so I had it all reversed. If this surgery didn't work for me, does it mean that my small intestine is also affected by the colonic inertia and having a bag will not work for me. I have an appointment coming up on the 10th of october to discuss possibly getting a bag but I don't want to go through another surgery if it's not going to work. Thank you for you input on this and the best of luck to you. Lisa

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• By Catgal
• Posted November 14, 2008 at 11:49 pm

Hi there,
I am very happy to hear that you have benefitted from Russell's suggestions. I have been considering doing Russell's program, even have emailed him and spoken with him over the phone a few times. I started on the celtic seasalt water but it seems to irritate my bladder, which is already irritated probably from all the toxins in my body, as I have colonic inertia. Would love to talk to you more about his program. I'm very ill and have read through his book to the best of my ability but am not sure I'd be able to have the strength to do all the cooking. Would love to hear from you sometime regarding the program and how you're doing.
Thanks so much! :-)

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• By Catgal
• Posted November 14, 2008 at 11:51 pm

Oops - meant to address my post to Dimcc regarding working with Russell Mariani for colonic inertia.

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• By Dimcc
• Posted November 15, 2008 at 11:27 am

Hello Catgal,
It has been almost 4 months since I started the program. I have seen such dramatic improvement. I have not had to use an enema since and use to not be able to have a bowel movement at all without an enema and even they weren't very successful, not to mention the horrible abdominal pain. It is a big commitment to change your health and you have to want to do it. It is not a magic potion but a way to regenerate your colon and get it healthy. I will not say it is a "cure" because once you get healthy, you can definitely get back in your same situation with poor eating choices. I also think that colonic inertia may have a genetic component. I think I will always have to "manage" my colon to some degree but this is so much better than the alternatives.
My son also has colonic inertia too but without the pelvic floor issues. In August I started him on parts of the program. I could never convince him of following all of the diet. Even so, he is off all medications and going daily. I just asked him the other day would he of rather stuck with taking the Miralax and enemas or is he glad he started the program. He looked at me strange saying why would I ever want to take Miralax again? He is feeling 500% better too. It has been more gentle on his system and his visits to the b-room are quick, easy, and no longer painful.
I do want to say that the program IS NOT a one size fits all. You have to read your body and adjust to what helps you. I have problems with the salt because I am very sensitive to sodium. Even though I do much much better with the Celtic Sea Salt, I cannot take it as prescribed in the program. You must still drink the water even if you leave out the salt completely. I also have changed some of the other products that are listed in the book to other brands that are either less expensive or work better for me due to other sensitivities. I am also celiac.
Starting out on the diet is hard, but after a few days you will not mind it. Slowly you can increase your variety of foods. I have been back on a regular diet BUT healthy diet incorporating what I learned in the program. You can cook a large pot of brown rice and refrigerate it heating what you need as you want it. You can also heat up frozen steamed veggies instead of fresh in just minutes. The first week on the program it was amazing that I had almost no appetite but this quickly changed as I detoxified. You will also most likely experience a "healing crisis". This is where you feel worse before you feel better. All of the die-off of bacteria in your gut makes you feel yucky but then you will get incredible energy you haven't had in years. Please email me privately if you would like to discuss more.

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• By Catgal
• Posted November 18, 2008 at 3:33 pm

Dimcc,
Thanks so much for your reply. I'm so glad you and your son are doing so well! I will email you privately when I am up to it. Looking forward to talking more about your experience.
Take care.

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