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maria wrote:
i almost cried reading your post. i am 27 and everything you said word for word has been my life the past three years. T he damage happened wnen i delivered my son. Since then i could not have bowel movements. No one believed me. If it werent for my son I problaby would have killed myself. I could not imagine going through this and being pregnant too. You are a stronger woman than me. I dont know where you are or who you are but I know your pain. Thank you. I am not alone. I will be having a total colectomy march 28.
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-Maria
Hi, I have also been diagnosed with colonic inertia and am being told I need a total colectomy. I don't think the weight gain issue is due to colonic inertia, I have lost weight in the process. Maybe it is a thyroid issue. I have read folks who say they gain weight after the surgery and reading articles, it seems that glucose absorption is increased, at least in studies of rats, as the intestines have a hard time absorbing water and salt without the large intestine. I am confused as I am also extremely fatigued and not sure if these are related or not, they told me my thyroid was ok.
I would say try to talk to a colon hydrotherapist. Use other natural health and wellness before going to a surgeon. Just check online and type colon hydrotherapy and your city and state. These are not surgeons. Again talk to a colon hydrotherapist first. Also read the book by Dr. Norman Walker about your Colon Health. Very helpful on colonics.
Iti has been up and down. On Levsin for the spazms Have been pretty ill from the penncil for a front tooth thatneeds arootcanal. Between anaprox and penncil. Ifeel like I just had surgery again. blooted pains in abdomin nausated. Before this small meals the best no red met . Chickan ,fish, white bread rice. Veg juice string beans and cooked carrots seem ok.It took me so long to realize my life ischanged with out a colon. Yes, at least I am alive. I take 2 Levsin pills that myins.do not pay forbutit isworth it at times notto have stomach cramps. It is a whole different world. take care.
I had a subtotal colectomy (removal of entire colon except for 1 foot) in April 2012 for colonic inertia. I wanted to post a hopeful message for those who are suffering with this horrible condition. I went through all of the agonizing tests (the worst part) and finally was able to have the surgery in April. It was a complete success. They were able to reconnect everything so I do not have a bag. I spent 8 days in the hospital and had some minor complications but nothing horrible. The surgery is major so it wasn't pleasant, but it was completely worth it. I can eat anything I want. I have 2 bm's per day on average. Sorry if tmi but I just want to reassure those out there who are suffering that there is hope and this surgery is often times very successful. Prayers with you all.
I had a total colectomy 26 years ago when i was 18 years old. I suffered 2 years with chronic ulucerative colitis. After a 21 day stay in the hospital, being pumped with steroids and azulfadine, my doctor advised me that frequent hospital stays is in my future. I had another option of a pull through procedure (now known by me as total colectomy) that I might be able to have. To get away from the pain, I jumped on it. It was the best decision of my life. So what is life like after 26 years? I've been married to my wife for 24 years, have 3 kids (23,21 and 8) and 2 grandkids. I've been at the same job for 23 years. I have a normal life! Okay, it wasn't always that easy. My doctor likened recovery to starting all over again as a baby in what I eat and how I have bowel movements. I was wearing depends for a couple months, eating allot of scrambled eggs. After a few months I was getting my social life back together, but found it tough to leave the house for long periods of time and I avoided going places that I knew were scarce on bathrooms (like the beach) I was afraid I was going to have "an accident". I was also going to the bathroom every hour. I found this to be more of a psychological issue. I started kegel exercises again, strengthening the rectum muscles. That was the ticket. Once those muscles got stronger I was able to control when I had bowel movements. I still do kegels to this day because I am getting older and old things get weaker over time. haha.
Advice to offer: be patient, surround yourself with positive influences, build a strong mental will to heal, work toward goals (goin to the beach) and do your kegels!
Regrets: The only after effect I am unhappy with is my weight. My doctor said it would be harder to gain weight. That was a lie.
I haven't seen my doctor in 24 years, but am going to call him next week to Thank him again for changing my life.
Patient #121
I have really enjoyed reading everyones stories... I have the same issues you guys have going on.. I am 22 and I have had chronic constipation for many years. Two years ago I started seeing a doctor after my urologist told me my bowels were completely blocked up in the xray he took for my kidney stones... My first GI doctor did so many test and told me that my colon didnt work. then he told me that after a week of laxitives i would be cured... Well I wasn't cured.. I took a mixture of laxitives for the past two years.. they have tried a combination of everything!!! I go to the bathroom once maybe two times a month... I finally decided to see another doctor because my prior gi told me it was all in my head pretty much... After seeing a doctor at the university of MD they did every test there is to diagnois CI.. and they told me that is what i had.. I went through bio feed back for pelvic floor dysfunction but never helped... last year we talked with a surgeon about removing my colon but at the time (21) didn't seem like it was a good idea... I feel like this surgery isnt a gurantee and could make matters worse.. I also don't want a bag, my grandfather had colon cancer and I don't want to go through what he did.. I am just afraid that STILL trying to find a combination of medicne that will work for me and relieve my pain will just make matters worse... I feel like using the medicines on a daily basis for years will just make me worse and then who knows if surgery will help.. I was just hoping to get some feeback from some that will help meknow what I should talk to my doctor about when I see him again next week...
Thanks!
Starting at about age 17 (2002), my oldest daughter started complaining about sever constipation. We started seeing GI docs. No one really had any answers. We continued looking. She got married when she was 19 and the problem continued progressively getting worse and worse. Finally her GI doctor started doing testing, she did the marker test, she had a defeceogram, and a test that don't even know the name (it was a probe that shocked inside her anus). I think they were checking to see if her rectum and anus were functioning properly. Well - she was diagnosed with colonic inertia. But we were still reluctant to have a total colectomy. It just sounded too radical on a seemingly otherwise perfectly healthy 22 year old girl. We tried every alternative medicine (snake oil) we could think of. They actually spent about $3000.00 with a chiropractor who promised he could make her well. But nothing worked and her life was miserable. Her husband was wonderful and supportive and it was decided that surgery was best. Her surgeon performed a total colectomy and it was a nasty recovery..... 10 days in the hospital, then home to my house so her husband could go back to work. About 5-6 days home after the hospital, we made an emergency run back to the hospital. They tested for blockages and gave her a big dose of pain meds. She bled internally for awhile which created anemia and had to have a blood transfusion about 1 year after her surgery. The good news is she is now doing fantastic. She's had 2 little girls, living a healthy and normal life.
Well my second daughter started showing symptoms at 17 (2007) ------- pretty much post the same story. She had the surgery on October 18th 2012 and turned 22 while in the hospital. 10 days at the hospital, and is still in the recovery stages. I asked the GI doc if it's genetic, and he just laughed at me, but what are the chances that two of my daughters would have the exact same major problem? The surgeon, said he only sees about 1-2 cases of colonic inertia/year. So I don't really think they have much information to base what causes the problem on. I think they are guessing just like we are!!! We have a lot of autoimmune problems in our family, so I'm wondering if it may be an autoimmune issue. My poor daughter that had the surgery this month was doing really well until last night and started having sever pain. She is walking a lot and trying to relieve gas pain. Who knows, we may end up back at the ER today. We are hopeful that she'll get better and live a normal life too....... but don't go into this thinking it's a quick fix. This surgery is a B!&@# and recovery is long and hard.
Mariaconfused wrote:
maria wrote:
i almost cried reading your post. i am 27 and everything you said word for word has been my life the past three years. T he damage happened wnen i delivered my son. Since then i could not have bowel movements. No one believed me. If it werent for my son I problaby would have killed myself. I could not imagine going through this and being pregnant too. You are a stronger woman than me. I dont know where you are or who you are but I know your pain. Thank you. I am not alone. I will be having a total colectomy march 28.
***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use
-Maria
Hi, I have also been diagnosed with colonic inertia and am being told I need a total colectomy. I don't think the weight gain issue is due to colonic inertia, I have lost weight in the process. Maybe it is a thyroid issue. I have read folks who say they gain weight after the surgery and reading articles, it seems that glucose absorption is increased, at least in studies of rats, as the intestines have a hard time absorbing water and salt without the large intestine. I am confused as I am also extremely fatigued and not sure if these are related or not, they told me my thyroid was ok.
I would say try to talk to a colon hydrotherapist. Use other natural health and wellness before going to a surgeon. Just check online and type colon hydrotherapy and your city and state. These are not surgeons. Again talk to a colon hydrotherapist first. Also read the book by Dr. Norman Walker about your Colon Health. Very helpful on colonics.
We tried hydrotherapy, nutritionalists, Every health juice from every MLM company there is. Chiropractors, essential oils, acupuncture, a Native American medicine man... (we are white - haha). You name it....... we tried to solve the problem naturally. But with NO HELP. I would guess we spent well over $10K trying to solve naturally. (There is a special place in Hell for people who promise they can heal you and you get zero results). We were so desparate to help our daughter, whe'd have done anything to get her well. She ended up with a total colectomy and althoughit was a rough surgery and recovery...... She is doing well and living a normal life.
I would just like to say thank you to those who have posted on here as I don't feel so alone with my condition anymore. I am 21 and have suffered with severe constipation since I was about 2 weeks old. When I was a baby I used to scream when I tried to go to the toilet and I was given lactulose, senna etc. from a very young age until I was a teenager just to try and get a bm. I used to get a bm around once every 6 - 9 weeks and just saw this as normal and I used to get kidney infections a lot. When I was about 18 I went to University and things with my constipation got worse. I found myself in severe pain and was hospitalized numerous times. I missed a lot of University and eventually had to leave so I could be home with my family. Since then I would go to the doctors numerous times complaining of my severe pain and nausea just to be told that I needed to eat healthier, exercise more and take laxatives. Laxatives did not do anything, I tried eating better, drinking more water and exercising but nothing seemed to make me have a bm. My weight fluctuated ridiculously. I put about two stone on in 10 days and then lost it in about the same amount of time. Every time I went to the doctors I just felt like I was an id**t and that no one believed me. I was told that perhaps going to the toilet once every 6 - 9 weeks was my usual bm and basically told to deal with it. I had to insist and push to be referred to a specialist until my GP finally gave in and referred me to a gastroenterologist. I have been seeing him for 2 - 3 years now (not very often though as he is very hard to get hold of) and have had various tests. I had the test where you have a swallow a radioactive pill and then have to have an X Ray every day to see the transit of your colon and it did not move so I had to go back the next week to have more X Rays. This test showed that I had chronic slow transit. I saw my specialist in May 2011 and he introduced me to a new medication called Prucalopride. It is a special drug only for women who suffer with constipation. My Professor told me that it had worked on a good percentage of women who had tried it so we had high hopes for the medication. Unfortunately, I did not react to the medication as we had hoped and it just gave me terrible stomach cramps and sickness. My specialist also had the idea that my problem was a learnt behavior, and that with the combination of medication and biofeedback it could be resolved. He thought that because I had suffered with constipation from such a young age that I had associated going to the toilet with pain and had stopped myself from going and therefore needed to be taught how to go to the toilet again. I did not believe that this was the case, however could see where he was coming from and tried this for about a year. My biofeedback nurse came to the conclusion that my technique was right and that the problem was that my stool was never actually making it to my back passage, this made sense as whenever my back passage was examined it was always empty, and she wrote to my doctor advising that I have a full colonoscopy. My GP then wrote to my specialist who decided that this would not be necessary. I had not seen my specialist since March 2011 (up until last week) and had begun to give up hope and accept that I would have to just live with this. I am constantly bloated, get cold sweats, feel nauseous and am often physically sick after meals. The abdominal pain I get is often hard to cope with and I have lost a job and had to leave University because of it. I am only 21 and just want to lead a normal life like my friends and be able to do the career I want to. I have had to push and make a real nu-sense of myself to get anywhere with this illness. Back in September I was one of my specialists team members who told me about a study she was doing at the University hospital. It was a study of how a drug called Moviprep reacted in different people. Moviprep is a liquid formula which is normally given to people before an operation to clear their system out. When I was hospitalized one time I was given around 4 liters of Moviprep and this actually got my bowels moving. In the study I had to drink 1 liter of Moviprep and then have an MRI scan every hour to see how it moved in my body. I had the results of this MRI scan last week and it showed that the problem is in fact my colon. Moviprep usually works in people in around 1.5hours but I didn't have any bm for over 8 hours. An abnormal colon can hold around 900ml of fluid, however the test showed that mine would hold 1500ml. My colon basically was not contracting. Now that my specialist has seen these results he has referred me to a surgeon to talk about having my colon removed. In the meantime I am having to take 2mg of prucalopride and I alternatively take a drug called Mestinon. These two medications are making me very sick. I have a constant dull pain in my stomach which often turns into horrible cramping pain and I am heaving a lot and feeling very nauseous. I also give myself a sort of colonic irrigation at home to try and clear me out but this isn't working either. I have been off work all week and I am really worried I am going to lose another job. I am hoping that if I persevere with this medication then I will have some results but otherwise it looks as though surgery is the only option. I am so glad that there is a light at the end of the tunnel and I have a plan of action from the hospital, however I am very nervous about this surgery if I do have to have it. I would like to talk to people going through the same sort of problems as me or anyone who has had the surgery? If anyone would like to contact me I would love to talk to someone who is in, or has been in, a similar position to myself.
Hello All - I had my subtotal colectomy with ileosigmoid anastamosis in 2004 when I was 26. I suffered from severe constipation for over 6 years and actually went 5 weeks without a bowel movement at one point. That period of living my life based on when and if I had a bowel movement, when to take my laxatives or even worse large enemas was exhausting. I was so incredibly sick and didn't really appreciate how awful I felt until after I had the surgery (it took a while, but wow what a positive difference). I decided to have the surgery due to the constant pain, bloating, anxiety, etc, but I also was told that I could not go through a pregnancy in the state that I was in at that time. My husband and I weren't ready for kids yet, but I didn't want to wait too long to have the surgery, because we knew that we wanted a family. So after many tests - sitz test, small bowel pressure testing, gastric emtying study, etc, I was deemed a good surgical candidate. I will admit the surgery isn't the easiest of things, but it is by far one of the best decisions I have made for myself. I honestly forget about my life during that period most of the time. It almost feels like a bad dream right now. Very occasionally I will get a trigger that reminds me (a colleague asked me about my colectomy today, because she is considering having one for crohns). So, I decided to pop on the internet today to see if there was anything new about colonic inertia out there. I found this site and decided to write, because even though I had some complications after my surgery (anemia requiring iron infusions, etc), I currently live a completely normal life. Almost 9 years out, I have about 2 bowel movements a day (I still have some bouts of diarrhea, but I would rather that than constipation!). I feel great, am very healthy, and am the proud mommy of an 18 month old little boy! My pregnancy was uneventful from a bowel stand point, and I consider that a victory. So for any of you out there that are wondering what life might be like a few years down the road, I am living proof that you can be healthy, have normal bowel movements and almost forget about the hell of colonic inertia. : ) On those rare occasions that I think about it, I realize how sick and miserable I was and am so thankful for the life that I have now. It really was worth it.
I wish you all the best and hope that you feel well.
Hi CharlieAnn - I just posted to this thread. You may find it helpful. To add to it - I too, like you, had some amount of constipation since I was small - my mother would have to give me stool softeners as a toddler, and I took fiber supplements in my teens that were prescribed by my pediatrician. I don't think I was ever as severe as you as a child, but I certainly was in the position you are in currently before I had my colectomy. I very suddenly just stopped having bowel movements around 19/20 yrs old. You can see that I had many of the tests that you describe. My sitz marker test showed that I had a bowel transit time of over 145 hours. I took a number of medications that did not help me at all - cisapride (similar to the one you didn't react well to), miralax (similar to the moviprep), misoprostol (terrible) as well as every laxative, stool softener, bowel prep you can think of without any improvement. I also took a medication that is currently not on the market in the US anymore (can't recall the name) that didn't work either. It really go to the point that I had to give myself large enemas every few days in order to have any relief, but those enemas were so painful. It took me a while but I finally had enough and went through with the surgery....best decision ever. I wish you luck....feel free to contact me with questions.