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I am so happy to know i am not the only one with these problems! I spend days in agony and tears and everyone tells me its in my head that im not really bloated among everything else. Ive been to several gastros and if i am told to try one more pill im going to go crazy! Im only 24 this started about 4 years ago for me....and with time has gotten so much worse...i look back at when i first had trouble and would give anything for it to be just small constipation and bloating compared to having to drink multiple mag citrates n laxatives to have any relief...if any...currenlt im on day 4 of a backup...couldnt even go to work im in so much agony...in 4 days ive taken 5 mag citrates 16 laxatives and an enema....still backed up...and the nurse at my drs told me to "add in more miralax to my day"...which has never worked to start with... I have an appt this evening its my follow up after my colonoscopy in which he had advised my intestines are twisted and my colon just isnt doing its job...he wants to try one more Rx drug...my answer is going to be a big hell no! This effects myevery day life what i wear..what i can do...being intimate with my boyfriend...always being tired...not eating for days just to not feel so miserable...i cant take it any longer! Im only 24 i want to live my life and start a family and not base everything on my stomach problems! HELP!
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I have been dealing with "undiagnosed" digestive issues since I was about 25. I have spent a majority of my 20's and now the beginning of my 30's suffering and living a life controlled by chronic constipation and all that comes with it (for up to 2 weeks or longer), nausea, noticeable and uncomfortable bloating (look pregnant/clothes not fitting), painful gas pains and stomach cramping, chest pains and girggling/trapped air in chest (unable to burp), weight gain, and increased stress levels. It has ruined events and vacations, my attendance at work, my self-esteem, and even how much sleep I get at night. I have collected more doctor bills over the years then I have answers. After 8 doctors and 14 procedures/tests/xrays, diet changes, physical therapy and trials of medications I have been told I "could have"...*SIBO*IBS-C*Tortuous Colon*Colonic inertia. I was diagnosed only with weak peristaltic function of the esophagus and a small/normal size anterior rectocele. At one point one Colon Rectal Surgeon summed it up as: I believe that we have established that your colon motility is markedly abnormal based on the results of your Sitz marker study. Evaluation of your small bowel motility was the 24 hr Sitz marker image – yours shows all the markers in you colon by that time, as would be expected with normal small bowel motility. The evaluation that you have had was appropriate and thorough to rule out pelvic floor/neurologic abnormalities that can be the primary source of abnormal colonic transit, such as short segment Hirschsprung’s disease, a large rectocele, or pelvic dyssynergia. Although you have a small rectocele, I agree that this is not the source of your problem. The other tests results (positive rectal anal inhibitory reflex, adequate balloon expulsion test, normal defecography) have essentially ruled out these other causes of constipation. 

I was being told that total colectomy surgery was my answer by various doctors but some wanted to give me a temporary colostomy bag to test motility before doing the surgery. This made me weary as I was always under the impression that surgery was to fix things not diagnose things. Another colon surgeon told me that was not necessary based on my test results (I soon learned later that he was correct). I was stressed on the edge of deciding if I should move forward with surgery why doctors kept giving me mixed messages but with no exact answer of a diagnosis. At one point one doctor even told me there was NO surgery for my condition and that I just have to live with it. I was hitting dead end after dead end with doctors. I kept asking my Mom to send me a sign on what I should do. Pull some strings in heaven for me.

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I have since seen him and have had a full 48 hour slow transit study, an EKG, more blood work and a full day long colonic manometry. Based on my medical records and their findings I have answers. My right side of my large intestine is slow and backing up into my small intestine which shows the pacemaker cells on that side are not working. My colon is VERY long, loopy and tortuous. There is still some contraction going on in my colon when given a meal and when given iv medication so I was put on a one month trial of Resolor but my body did not react positively to it.

I have since had a  laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th. I was suppose to be in the hospital for 1 week and ended up there for 3 weeks. I formed an ileus.. the most pain I have ever felt in my entire life. I was on decompression tubes.. one in my nose/throat to my stomach and the other inserted in my rectum through the small intestine until my body could do things on it's own. I was on morphine drip and it still was not enough for the pain. It has been aweful. Now I am home and no more narcotics.. just tylenol which to me does nothing but I understand that the narcotics are not good on the stomach.

I am going more frequently (which is great from never going and all or feeling like your being ripped apart when you go)but because I am still on the liquid diet the bm's are also liquid. I also formed a blood clot in my liver so now I am giving myself Lovenox shots in the stomac every morning. I go to a doctor on March 9th to start coumadin pills. Because of this I had to stop my birth control.

 I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only a week into things. The doctor sortof started me over after the ileus cleared so I am still on liquid/soft food. Now its a matter of trying to deal with the aches and pains and these cramps whenever my bowls decide to move. Did anyone else experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do and that if it's making noses and moving that is a good sign. It might be a good sign but its painful and keeps me up at night.  I also getting a shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen. Anyone experience this? Doctors say its my body healing.

 

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It tales time. I also did not want to hear this.  I had surgery in Oct of 2010.  Ups and downs.  Lost alot of wt. Pain  seemed like it would not end. Was in the hospital cause 3 mo ago I was so happy was not going to bms 9 times a day.  Well, that is so bad when your large colon is gone. They blockege was  fixed without surgery.  The pain was like before I had my surgery.  I am again on a new med..  It takes time. I never will say I am tired of going to the bathroom again.  My heart goes out to you .  You are so young to go thru all this. Give it time. Just have fish , chicken , mashed potatoes, carrots. I also am on a protein shake I a make with yougart blueeberries orwhat fruit I have almond milk so you do not get gas. Please feel free to ask anything. The best to you.  Yes, there is light ahead.

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I have lost well over 20lbs since my surgery. I am only about 10lbs away from my high school weight which I never thought would ever happen again. Can't complain about that part of the recovery ha ha. They did remove 10ft of large intestine and a normal one is 5ft. They say 1ft is approx 1 lb so maybe that is where most of the weight lost came from. That is however I spent a lot of days/nights throwing up in the hospital and being on iv nutrition and even with it being 1 month since my surgery I am still on a liquid/soft food diet and don't have much of an appetite. It is nice to not be gaining weight like I was before surgery or looking pregnant from bloat because it took me 2-3 weeks to go to the bathroom. I am trying hard to count my blessings and be patient as I heal.

I think I am going to reduce my dairy and sugar intake as much as I can to avoid any cramping and upset stomach for now. I noticed last night the cramping was not as bad as it was the night before. But I hardly ate much yesterday. But what I did eat I made sure was not dairy based so maybe that is what helped. I am going to try to increase my water and try to take some more walks outside of my townhome. Yesterday I increased my walking and hope that helped.

Thank you for your kind words and advice. These cramps at night are terrible. I can deal with the acheyness, I can deal with the shots for my blood thinning but these cramps feel like someone is squeezing my insides and its only a matter of time before a baby comes out ha haha (I am not pregnant but imagine this is similiar to contractions)
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Hello
I have had colonic enertia for many years. I did not find this out until this month! For years people thought I was
exaggerating the condition. It was found out very early that the markers barely moved when I did the test. At that
time no one knew about colonic enertia. The doctor had me jump on a trampoline to make the markers move.
They barely moved. He told me to take dynamite. Finally years later, I was diagnosed with IBS. I cried because
I was finally diagnosed. Yet, I wasn't. Colonic enertia is what I have been suffering with. I recently started Linzess.
It helps slightly. I need to have the surgery. I never had surgery before. I have to admit , it frightens me. I saw
a medical center in Charleston, S C. I decided I would call them. Do you or anyone have any suggestions for
me. I am glad you are so much better now. I wish you good health from now on!
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I know. I was told I needed to change my diet so many times it wasn't funny. It got to the point that when I finally found a gastro to take me serious he was like you would have eventually perforated your bowel and died. I started crying out of relief that finally someone took me serious. Constipation is a big freakin deal. If there is anything I can ever do to help please let me know!!! My username may be different than before cause I can't remember it's been so long since I've been on here bit just send me and email!!!!
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After years of constipation, tests, every OTC option and several Rx options, I have finally met two doctors who agree that surgery is the best solution for my colonic inertia. At 23 years old, I have two more weeks with my large intestine to try out any last minute solutions. My uncle, an internist, is putting the breaks on my treatment. He wants me to discontinue my anti-anxiety/anti-depressant meds (which I have been on for only 1.5 years, no change in BMs) and try another kind of probiotic: Align and a new kind of medicine for chronic constipation: Linzess. Has anyone with colonic inertia had experience with this kind of medication?

I am more afraid to have the surgery now after reading these posts. I My surgeon assured me that my reproductive system will be safe because my rectum will remain intact (no ostomy for me, pheww). He also said that my stomach and small intestine appear to function normally now. I understand that this could change. I also know that I will have to be more careful about my diet, although I'm not noticing any general trends as far as food groups- Root vegetables are good for normal digestion, other starches like rice are too constipating and whole grains and vegetables are too much fiber, or good fiber?

I'm a vegetarian. I eat alot of whole grains, pasta, fruits, vegetables and legumes now. How do you think I will have to adapt?

Any other last minute words of wisdom? Please?

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Wow...exact same story with me...until post surgery I developed a fistula and ended up with 3 drainage tubes and eventually a feeding tube for 8 weeks until thankfully it healed. It has been 4 years since my surgery and I would do it again. Life was so miserable before. I do have occasional constipation...wondering if probiotic would help. Has anyone added this after surgery? I did have loose stools after surgery but only lasted a couple months.
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I had the surgery a year ago and it was the best decision I ever made. Everything went very well. And now I have 3 - 4 normal bowel movements a day. Sheer heaven! I didn't have to have an ostomy either so that was good. The pain after surgery was pretty high, but bearable and oh so worth it! I also was scared to death before the surgery, but now that it is over, I would do it again in a hear beat. Good luck to you! I am sure everything will go very well.Just make sure you have a good colorectal surgeon!

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There is a pill called Levsin. It helps with the spazms you are getting as I have them at times. it has been 2yrs since my colon was removed. It is not cheap but well worth. My dr says it is a old med. My ins does not pay for it. Use it when you can not handle the problem. It is not a narcotic . Ask your dr. good luck.
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I have taken probiotics since having the surgery 1 year ago and have not had any problems with constipation. Maybe they do help.
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I know where you are coming from. It is a blessing to finally have a BM without thinking and having a lot of pain from not passing it. Life is no longer a pain in the butt. Had mine removed in 2009. Mary
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I am going to be going though this procedure in about 6 weeks. I read your article and tears filled my eyes. It's exactly what I have been going through for years but now they have a name for what I have. My question is how are things now? How long did it take for you to start to feel normal and do you still feel it was worth going through?
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I had a total colonectomy 2 weeks ago due to colonic inertia.  I was hospitalized for 5 days and have been home for a week.  I've read the postings that break my heart.  I'm here to tell you that I didn't have any complications from the surgery and I'm getting stronger each and every day.

i suffered with severe constipation for 35 years.  This surgery has been a God send for me.  Each person is different.  You may read posts from people who had complications from the surgery.  That doesn't mean that you will have complications.  My one regret is that I couldn't get a Doctor to listen to me.  I found a G.I. Doctor who did listen and ordered tests that confirmed that my problem was VERY real.

If your Doctor won't take you seriouskeep go to another Doctor.  Keep going until you find a doctor who will run tests to confirm that you were right all along.

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Hi, I have colonic inertia like everyone on here. I am scheduled for a total colectomy. What should I expect afterwards, I am a vegetarian. Thanks!
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