Colonic Inertia-Pelvic Floor dysfunction and wanting to get pregnant-Please Help

Hello,

I am a 27 year old female and I have colonic inertia and pelvic floor dysfunction.  I have had problems having a bowel movement my whole life. My constipation has gotten worse each year as I have gotten older. For many years I could not find a doctor to believe I could not go to the bathroom. They acted like I was crazy when I would say I would typically go three months without having a bowel movement. I would go so long that I could not hardly get up, I could not eat because nothing else would fit into my body, and finally I would either throw it all up or my bowel would just burst out. When I was 22 I finally found a doctor that was willing to listen and try to help me. After being under his treatment for two years and trying every medicine out there, he sent me out of state for some test since there was no place in Arkansas that could do them. I went to Mississippi to have a defogram and an anorectal manometry test done. At this point I was diagnosed with colonic inertia and pelvic floor. After this they only thing my doctors would tell me is that I need surgery and they want to take out part of my large intestine.  They said it may help or may not and I could end up wearing a colostomy bag for the rest of my life. I have decided not to have the surgery just yet because I am not ready to take the chance of wearing the bag. My new concern is my husband and I would like to have a child. Originally we decided to adopt and we have been trying for almost two years now but no luck yet. We still want to adopt, but we would like to have one of our own as well. I have tried to talk to many doctors but they all tell me to talk to someone else. I have seen several gastro doctors who say talk to an obgyn, and several obgyns who tell me to talk to a gastro doctor. Today I seen another obgyn, but he was a high risk pregnancy doctor. He said he did not know much about colonic inertia so he could not tell me what my options were. I would like to know if anyone out there has my same condition and has gotten pregnant and what they did to make it through their pregnancy? I know you cannot take laxatives, so what do women do in this case. I have heard something like being on a liquid diet-by having a feeding tube in place for 9 months and not eating any solid food. Has anyone out there had this done and what are the risk? What is a way to remove the waste while pregnant? Any advice would be wonderful. I feel like giving up because no doctor can help me (or at least the ones in Arkansas). We do not have many specialists here that know anything about colonic inertia, so I don’t know what to do. I know everything is going to have a risk, but I would like to know what the different options are. Please help.

I have tried it many times at high dosages, but no bowel movement. I stay back up so much that suppositories, enimas, or even trying to manually disimpact does not work because it too far up. I have tried every drug out there that now my doctors have run out of things for me to try. When I went to the doctor to ask about getting pregnant he said that my body would shut down if I did. The only way I can even have a small BM is by taking at least 10-12 laxitives at once. I don't do this often b/c I work and don't always have time to on the weekend. When I take them they make me so sick b/c off how many I have to take. I vomit until there is nothing left, and then finally around 10 hours later I have a BM. The rest of the day I feel so sick and can't do anything. Taking this many also make my body hurt and I get sharp pains in my stomach. I have not had a BM in 2 months now b/c my job has me on the road right now. I just don't know what to do anymore. Eventually I know I will have to have surgery, but my husband really does not want me to right now and nor do I.

Hiya

all i can say is if you are in constant pain then surgery is a Godsend..there is absolutely no more to say!! i dont frequent this site much now as i am free from my hell of colonic inertia...if you were that bad then you would not care about having a bag - i had several months to get my head around having a bag but it is better than a life of hell with no bowel movement - how can you go 2 months without a bowel movement!!! the pain must be unbearable.  i was on 30 lax a day.  No one has the right to tell you whether to or not to have surgery - its your body - is the best way forward. 

 

I feel for you...I also am terrified to have surgery for my condition, but I am coming to the end of my rope. My life revolves around having bm's. But, I never let myself go without taking laxatives or else I end up like you, no bm for weeks and this can be very dangerous and can cause an obstruction. You are fine, until one day, you are not fine. What happened to the 2 people that you know that have had the surgery? I am going to do biofeedback for 5 sessions for the pelvic floor dysfunction, but if this does not work, then I am going to get the bcir surgery, which is an internal pouch....my colonic inertia is controlled with the daily use of mega doses of miralax. My outlet problem is my main complaint because it will not allow me to push down to defecate. I have to spend hours on the toilet and usually only manage to get a teaspoon or two of poop out. I LIVE in the bathroom because no consistency of poop will come out. It is not a fun way to live.

I also get very ill if I take too many stimulant laxatives.

Well i wish you all the luck in the world - get as many tests as possible  but it seems you have had all the GI tests... yes i know people with pelvic floor disfunction have difficulties anyway even affter the colectomy... i do hope you get some relief and then get on with your life and have children...you have lots of time being only 27....but get your bowel sorted as you cant spend hours in the loo when you have a cryin baby!! 

I have researched colonic inertia until my head exploded and there really is no option but surgery - the bowel just isnt working and nothing will change that - i spent 10 years trying to work out what was wrong with me and no one knew till a few years ago...it is a odd condition...

It is scary but even if you end up with an ileostomy (becasue of pelvic floor disfunction) then it is not the end of hte world and you can get on with your life.   I do hope you find a really good surgeon who specialises in colonic inertia if you havent done so already....All the best xx

Sorry to hear what you are going through. I have the same problem. The only thing my doctors will tell me is to have surgery, but I am not ready for that. Especailly since they are not that sure if it will help me. Can you have any bowel movement at all on your own? If you want to have children I would go ahead and go see a high risk OBGYN and talk to them now. I wish I would have when I was twenty. I am 27 now, and they told me since I cannot have a BM at all I should not get pregnant because it would cuase my body to shut down and kill me or the baby. So don't wait. See what your options are now. I wish I could offer you more advice, but I am still trying to find something that works for me without having to have surgery.

 

Hello veronydale

I just found your story by searching for "colonic*pregnant" on Google.

The reason I searched for these words is because I have colonic inertia and really want to get pregnant and have a baby.

Your story is almost 100% like what I'm going to tell about my conditions and feelings.

It's like you were me!!! It's like you were expressing my misery I've been going through.

What a pity life we both have!!!

I cannot have a bm on my own. I have to use 17 laxatives and 10-12 hours later, I will have a bm but it's still not easy because I will have sharp pain for at least an hour before the poop comes out and while I am waiting that moment I have to press and massage so so hard on my belly to stimulate the movement of the colon otherwise I will feel the only pain but no poop comes out at all.

My colonic comes from "Detox", using coffee enema for 2-3 years, once a week.
For the first period of time doing detox, it worked great.
After that, coffee that was released into my colon wouldn't come out.

I had colonoscopy and Dr said that my colon was too long and swollen, it was extened from the normal size caused by the coffee enema I used for a long time.

I'm 30. I've been on this condition since I was 23-24.
After I was born and until I was 23, my bm was great. I just had rope jump not more that 30 mins, I would go to the toilet as fast as I could. Now even though I have rope jump more than 30 mins, I will hardly fart at all.

Now I'm married and my friends at my ages have their own babies.
I really want to have one but thinking about my body I'm so scared and worried.
It makes me so stressful.

The Dr suggests I should try and not to have surgery at this age because as you said it may or may not help.

I still live my life with this miserable feeling and find no way out at all.

How are you now? I really really want to catch up with your conditions.
Have you undergone the operation yet?
Have you successfully had a baby on your own?


Please let me know.
With care and deep understanding.
Jary

Hi I am a 34yr old colonic inertia sufferer for the past 5 yrs. They are currently checking for pelvic floor dysfunction. I have recently had a baby about 14mths ago while dealing with all of this. My obgyn told me to take colace once a day and I was allowed to take miralax a cap full 2 times a day. I couldn't take the prenatal vitamins cause it made the constipation way worst. A flintstone chewable has enough vitamins that you will need for the pregnancy. When things got rough I would drink a cup of hot senna tea sweetened with honey. That would eventually allow me to go. I did all of this throughout my 2nd and 3rd trimester, to be on the safe side I could only take colace my first trimester. I was still horribly constipated but I was able to go more than normal. My obgyn thinks its because your hormone changes so much during pregnancy that it worked in my favor. Anyway I had my baby 3 weeks early and she weighed 7lbs 4ozs so imagine if she stayed in longer. I am currently still in pain so I am thinking about scheduling surgery. My obgyn also told me that it would be ok to have a baby without my large intestine I would just have to keep to a strict diet during the pregnancy and take extra vitamins. I hope this info helps some and good luck

hello 2snowbell and welcome :)

i'm so sorry for all you had to go through. CI is a terrible condition and impossible to live with. i had the surgery for CI. i suffered with it for 16 yrs till i had surgery. i'm very glad i had the surgery and even though things are not perfect, i still will never ever go back to the way things were before surgery, even if given all the fortune in the whole world. i can so understand your fear. i felt the very same way when first told i need a colectomy - my body was shacking all over all day. it is a major surgery. but if your conditione has gotten to a level that it affects your life to the point it controles it, it requires a more drastic action like surgery.

have your dr performed all the necessary tests? you havn't mentioned any tests besides colonoscopy. before deciding on a colectomy for CI you must go through all the necessary tests (besides colonoscopy), which are: defecography, anal manometry, barium enema and most important a colonic transit time test.

also, before surgery it is important to make sure you don't have motility problems in your upper GI tract, like the stomach and small intestine, so it's necessary to have a gastric emptying test and i don't know the name for motility testing of the small bowel, whether it's small bowel follow through or something else, but just ask your dr to check motility of your small bowel as well as the large and stomach.

in any case, if your colon is not functioning and it's something that's not going to change or improve, then there's no point whatsoever to keep it. all it does now is being a storage place for stools that can't come out.

i highly recommend you google "total colectomy part 3", then 4, 5 etc. you'll find dozens of women who had the surgery for CI and it will help you learn a lot about the surgery, it's outcome, prepare you to possible complications etc.

i'd also be happy to help you with any questions you have before and after surgery, so feel free to ask away :)

Hi Veronydale, Anangell, Jary and 2Snowbell

Reading all your stories, so reminds me of my own, pre Total colectomy! There are many success stories post colectomy, however, I would like to share some of my experiences, as I believe one needs to make an informed decision to have the surgery and therefore you need to know the negative experiences too.

I too had colonic inertia for years and had the Total Colectomy at the age of 32. I had always suffered from constipation, which worsened every year and especially after the birth of my children. My 2nd born was a healthy 4 kg baby girl who was born after a normal delivery. After my constipation deteriorated to the extend that after taking bowel prep to empty my colon, I ended up with a severe rectal prolapse. Not long after the surgery I started with constipation again. Within a year I had a bowel obstruction and needed an emergency laparotomy. By 4 months post laparotomy I had had another 3 obstructions. I flew back to my specialist, who only then diagnosed rectal dysfunction and inserted a neurotransmitter (sacral nerve stimulator). This didn't help at all and I was forced to eat a fluid diet, laxatives daily and enemas daily. Despite this I continued to get bowel obstructions regularly. After a few years of this, I was told my only hope was an ileostomy which I wasn't emotionally ready for. I searched for another specialist who diagnosed pelvic floor dysfunction. He prescribed biofeedback for 1 year which I vigorously did and eventually had to give up work for a year so I could spend up to 5 hours a day doing pelvic floor exercises, relaxation exercises, psychotherapy, biofeedback etc. Despite this I had an average of 2 -3 hospital admissions per annum. I returned to my specialist a year later to be told that I had brilliant pelvic floor muscles (so all the hard work had paid off to have a tight vagina and rectum) but alas, I still couldn't pass a stool unaided. By this time (7 years after colectomy), I was still on a fluid diet, doing bowel washouts up to 3 times per day and living in constant pain which affected every part of my life.

I went to yet another specialist (all in a different country as there are no specialists in our country) who also said my only hope was an ileostomy. I eventually succumbed and had the loop ileostomy and removal of sacral nerve stimulator in 2012 .

Despite having a few kinks now and then (which I believe can be resolved), this was the best decision of my life. I fought it for so many years, and now wish I could take back the 7 years of suffering and have the ileostomy earlier. My quality of life has improved so much. I can eat almost anything (except the usual seeds, nuts, popcorn, skins of fruit etc.) never have to worry about bowel washouts, enemas, laxatives etc and am never in pain (except with the kinks).

To answer your question about fluid diets and ways to pass stools in pregnancy: I survived 7 years on a fluid diet and was otherwise so healthy during this time. I never got a cold, flu etc. I liquidized all my own home cooked food, had very nutritious soups, meal replacement shakes etc. One doesn't need tube feeding to survive on a liquid diet. From a nutritional point, I didn't miss out on anything, I only missed chewing and eating pizzas, cakes etc!! I survived on enemas and bowel washouts too. I believe pregnancy shouldn't change any of this. I would advise, however, that you opt for a caesarian section, as years later, they realised that the biggest contributing factor to my pelvic floor dysfunction and worsening of my symptoms was the delivery of my second baby. Due to her enormous size, her shoulders got stuck (shoulder dystocia) and it was in this process that my nerve and muscles were damaged, even though I didn't tear.

The total colectomy made my situation worse but only because I wasn't correctly diagnosed before hand. I wonder whether I would have required the same surgery if they realised at that stage that my rectal dysfunction was the problem all along?. Perhaps my colon wouldn't have been so slow if my rectum worked properly. I think the back up started at the rectum and the colon was then forced to slow down as a result??? Either way I would have needed surgery, as I think you do. I probably would have ended up with an ileostomy anyway regardless of whether I was initially correctly diagnosed or not.

You all certainly sound like surgery would be your answer as living with colonic inertia is no fun to put it mildly. Just make an informed decision and realise that a total colectomy may not work 100% and that you may have to have an ileostomy, especially if you have pelvic floor dysfunction.

Having said this you may have read my other post about just being discharged from hospital with a bowel obstruction. My small bowel has kinked 3 times this year, but I am booked for surgery next week to correct this. Despite this, my quality of life is a million times better than pre ileostomy.

Lastly, A positive mindset and exercise are vital and one needs to come to terms with all the options before jumping into any decisions. I play tennis 3 times per week, dance 3 times per week and lead a healthy and productive live. Exercise is great for the mind, body and soul. Pre colectomy there were times I just couldn't dance or play tennis due to the pain but now since my ileostomy I have far more energy to do the things I love.

I put it off having an ileostomy for 7 years because my mind wasn't ready to accept the bag, now I wish I had done it from the beginning........

Good luck to all of you

Lollylouise