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 was getting more doctor bills and no answers.
After 8 doctors and 14 procedures/tests/xrays, diet changes, physical therapy and trials of medications I have been told I "could have"...
*Small/normal sized anterior rectocele
I was diagnosed only with *Weak peristaltic function of the esophagus.
One Colon Rectal Surgeon gave me his opinion summed 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. Looking for feedback from others suffering with motility disorders I found this site. I kept asking my Mom to send me a sign on what I should do. Pull some strings in heaven for me.
Then I found http://www.***********/groups/agmd-gi-motility/ and got a response from a member who told me about a doctor that could give me the answers I needed and specializes in cases like mine. I listened to what she told me and sent my story to Dr. Camilleri at the Mayo Clinic in MN. He got me in and I have since seen him and have had a full 48 hour slow transit study, an EKG, more blood work and a colonic manometry to top the 14 other tests/procedures/xrays etc I have had.. 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. Because of that I will be scheduling my laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic and Dr. Camilleri has referred me now to Dr. Cima who is the colon surgeon he feels is best for my condition.I am a good candidate for a successful surgery because my pelvic floor and rectum muscles are still working and are strong. I am happy to know that everything has been checked out before moving forward with surgery so I avoid as many complications as possible. I also learned that IBS and SIBO symptoms I am having are due to the issues with the colon and are not a seperate issue as I have been told by other doctors. So if you are being told you have these be sure you do and it's not a side effect of something more major! Like a dieing colon!
My question is who else has had a laparoscopic colectomy with ileorectal anastomosis surgery whose case was very similiar to mine? Was wanting some feedback. I know everyone is different but I am still looking to talk to others who have had this exact surgery and it was due to the same issues I am having and not another condition. I am curious the success rate as well as what to expect from people who have already lived it. I see the colon surgeon on Dec 18th and want to present him with questions before I schedule my surgery.
Ng, I'm not sure how many individuals have had that exact surgery for the same condition you have, but if you get few answers to your question but want to know what it would be like living with a large intestine, you may want to talk to Morecambe. He had his large intestine removed for another reason, however, he can probably give you some darned good advice about what it's like and any accomodations you may have to make.
It sounds like you've done your 'homework' on getting to the bottom of the problem - congratulations.
It's all about not giving up.. when one door closed I looked for another one to open.. I knew something was wrong and I was not crazy or "just have IBS"... so glad I never did give up cause it's crazy to know how much worse I could get if this doesn't get taken care of. Not to mention the rectocele being a sign that the condition is starting to effect other parts of my body.
Thank you for the recommendation. I am open to hear what everyone has to say about this surgery. I just know that certain people with other conditions could heal up or have different complications then I would. But I am always open to hear what everyone has to say.
Did we not exchange postings before (2/4 years??). Anyway, doesn't matter. As CalGal kindly observes, indeed I underwent a total colectomy in 2004 but for torrential diverticular bleeding. The surgery was not laparoscopic - but full "open abdomen/surgeon's hands inside the torso". Probably the only difference between laparoscopic surgery and "full open abdomen" is the lesser trauma to the torso. Having said that, it is possible that your surgeon might prefer - in your case - the more "panoramic vision" with the full open surgery. That's for you to discuss with him/her.
Anyway, in response to another Medhelp patients posting I summarised my own experiences on:-
Yes I do believe we talked a while back when one doctor told me there was no surgery for my condition and I was researching various surgeries people had to prove them wrong. Now my new doctor at Mayo Clinic wants me to have a specific surgery which is the laparoscopic colectomy with ileorectal anastomosis surgery. He already said he wants it done laparoscopicly. I have read 3 - 5 days in the hospital for it. But I am sure I will learn more when I have my consultation as the surgeon will need to fill out my FMLA forms for my medical leave too.
Did you end up having the ileus you mention?.
It is really great to hear you were back to playing tennis in 3 months and you had the full blown open operation and not the laproscopic one!!
You mention that you need to visit the toilet for a #2 maybe 6-8 times during the day and 2-4 times during the night. Is this a OMG urgent feeling or is this more of a normal urgency?
Hello again - yes I did experience an ileus for perhaps 2-3 days. But I think that the doctors can offer you some drugs/medicine to reduce the feeling. Maybe the chance of an ileus is less if the procedure is carried out laparoscopically because this might involve less "handling" of the intestine tubes etc - anyway your surgeon will know. I think that an ileus can also arise when a patient undergoes a hysterectomy because the intestines are also manipulated during this surgery.
Regarding the visits to the toilet for #2 - it was not a question of "OMG I've only got 5 seconds to get to the toilet before I have an accident" but more like "when you've got to go then you've got to go". I would say that you would want to go to the toilet quickly (+/- ~ 2 minutes) rather than thinking "oh I'll finish making the sandwiches and go in 15 mins etc". If you are in a private house/restaurant etc then you will be fine. If you are planning a long car journey then it may be advisable to stop perhaps every hour for a toilet visit even if you do not feel the urge to go immediately. Over time the frequence of #2 visits will lessen. Today I perhaps visit the toilet for #2 2-3 times per day and 0-1 times at night.
Please don't hesitate to come back if I can give you any further information.
This is actually great to hear and great advice as I I have a 7 hour car ride home from Mayo Clinic after they release me from the hospital. I will have to let my husband know that we will have to stop frequently at the truck/rest stops as we see them to assure no "accidents". It will be alot longer then 7 hours but what can you do. I am also happy to hear that it lessens as time goes on... but right now anything is better then not going for 2 weeks!!!
Hi guys! I'm glad to see that you've connected. But..............I have to say the conversation - from sitting on the sidelines - has got me smiling a bit. I hope I'm not out-of-line or anything, but it's interesting about the 'grass is greener' concept. With my digestive issue - at one point - I would have given ANYTHING to go once every two weeks! But I can kind of understand a bit of both sides of the 'coin.' Ng, I'm so glad you followed-through and found an answer. Morecambe, you're a darling for helping others to change 'too much' into 'here's how to turn everything into I'm okay.'
Yah I go once every 2 weeks when I take Miralax.. other wise it would be a lot longer then that and hardly anything at all (no to mention the pain to pass it). The Miralax helps make it easier to go. The Dr. did tell me that getting this taken care of now is gonna help that I dont have worse problems down the road. The small anterior rectocele could get worse if my issues do not get taken care of now not to mention with my large intestine backing up into my small intestine it is putting strain and issues on other organs etc. I am just glad I am finally getting answers and that there really is a surgery out there for me. I was actually told by one doctor that there was no surgery for me!! Good thing I trusted my gut feeling (no pun intended ha ha) and didn't listen to some of these doctors. Its unbelievable to me that some of them are still practicing. I was even told by one surgeon that I needed to have 3 surgeries. It has been crazy.
I want to thank CalGal also who answered post from me recently as I am new on here looking for help after many drs tests etc sounds like story of everyone's life. ng1031 glad u got some good answers. I have motility probs that are thought to be connected with larger neuro issue but RuQ pain worse. Think you mentioned miralax. seems all drs think it is best thing ever but does not work for me. one dr finally told me about prescription Lactlose. Have you tried it? maybe as you wait for surgery it's worth considering. Think generic is Kristolose. Mix packet in liquid-- not bad-- up to twice day what I was told. Apparently causes bad cramps etc for some but just helps me. At times now can go wks without taking it at all. critical for me to go regularly whatever that is because once had severe impaction put me in icu so I have to track carefully. I had been going but not every day. Theory apparently is that colon expanded allowing some to by pass. the rest is tmi but suspect was lucky not to rupture. was given Rx for something else at one point that just made me naus. never heard of anyone else who had sitz or defograph-- got to really need answers for that!!!! as far as car ride suggest Depends altho never had yr surgery they've helped at times.
I thought I had tried all there was to try also inc Am. (just made me naus) and I know miralax is great for others but does nothing for me. Sounds like you are in great hands and will pray for fast recovery. Just wanted to throw out the Lactulose idea in case it could help others. I too admire your refusal to give up especially while getting so much conflicting info. when you went to Mayo were you referred directly to that dr before you got there or did you have to see others at Mayo first? Did the dr look at your case with fresh set of eyes or did dr take clues from what you already had done? no question I have motil issues but gastros don't seem to think could cause so much pain. Treated for SOD and that didn't work. CalGal kindly said send records to Indiana for their thoughts on SOD Reading yr post I start wondering about motility again. I don't know what to think exact prob is except that it's not in mind. Can you tell me about 48 hr test? The defograph showed "dramatic" issue with sigmoid colon but I wasn't aware of tests that could look at function higher up as you seem to have had at Mayo. Sorry to ramble but am most interested in yr story. God bless.
Well I had already tried to get into Mayo Clinic and they took me off their GI waitlist saying they couldnt do anything for me and that since the list was so long they had to take other cases. I was devastated. I always thought you went to Mayo if you had no other choice and had no where else to turn and that is where I was at. I had already see 8 doctors, had over 14 tests and procedures, had tried medications, diets, physical therapy you name it and had surgeons fighting over how they should cut me open. It was alot of crying and sleepless nights not knowing what else I could do. I found that AGMD GI Motility Disorders board and posted my story. Someone on there told me to go to Mayo and see Dr. Camilleri and I told them how I was denied. She told me "no contact the doctor himself". I sent him an email telling him my story, told him all I had went through and how I didnt know what to do anymore. HE got me in. HE personally put me on HIS waitlist. Had he not done that I would still be crying myself to sleep at night. I thank my lucky stars every day that he read my story and reviewed my medical records and got me in to see him.
Sorry if u get 2 posts. Good for you for being so determined. Did 48 hour test really clinch diagnosis of how intestines weren't working? Have never had that althoug seems went 4 days in row for sitz X-rays. After being told I have had all tests a dr will come up with one
More but that's new one. Any idea where I could read about it? This may be a real puzzle piece and thanks for sharing. When is yr surg?
Its very similiar to the empty stomache study. I had that one as well a while back. They feed you scrambled eggs that have a radioactive chemical of sorts in them. Then over a course of hours they take pictures/xrays to see where the eggs are in your systeme. For the 48 hour one they also had me swallow capsule as well. With this they were able to see in the time period how long it took for me to digest the eggs and where they were at in comparison to a person with normal transit. Mine of course was very abnormal. My doctor showed me examples of a normal transit xray photo and an abnormal one and mine was actually worse then the abnormal one. It showed that everything passes through my stomach but gets backed up when it gets to my colon.. showing slow transit etc.
The colonic manometry test was really what I wanted to have done because that was the test that shows if you have contractions left in your colon and if it is dead or if it still is moving things along. That was a major test that I am glad I had before deciding to go with surgery.
Have had egg tests for stomach. Was capsule same as camera pill? Was discouraged from having that test done. Had anal manometry but take it colononic looks higher. were Mayo tests outpatient or in and how many days did it all take? you are telling me things i never heard about motil tests and I am profoundly grateful.
I had a laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th for slow transit constipation. 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. Before the tubes I was vomiting bile. 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. Did anyone else form an ileus? The surgeon told me that it happens to 10% of people and that the type I had was very rare. He also scared me when he said there was no guarantee it would not come back later on.
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. They believe it could have contributed to why I got the blood clot during surgery.
I am going more frequently (which is great from never going at 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. From hearing other people's stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. 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 noises and moving that is a good sign that they are still working. 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 because my body is healing. It just makes me nervous as I really am scared of the ileus returning. They told me as long as I am not vomiting again, passing gas/bm and do not have a fever that I am ok.
Just curious if anyone else experienced anything similiar?
Just wanted to update everyone incase they experience the same thing. The reason I was experiencing so much cramping was actually NOT normal and was a sign of a very serious blockage.
On February 26, 2013 I was rushed to my local ER because of course I could not go back to Mayo in MN. After weeks of cramping my bowel movements started to slow down drastically. Each time I was concerned I would contact my surgeon at Mayo who would refer me to his nurse who would call me and tell me this was normal. Before I knew it I had not gone in 3 days and was feeling worse so I contacted my motility specialist at Mayo who instructed me to go to my local ER. I am glad that I did. The ileus blockage at the anastomosis came back with a vengenous. The doctors told me that the first blockage I got may have been due to the flopped over section of the small intestine blocking my rectum however the twist did not "form". The twist was the way my small bowl was when the surgeons connected it to my rectum. When they cleared the blockage the twist was still there and opened up but it formed a crease where it was flopped over. So now my body was trying to heal the crease and in the process was closing up that area of the connection. It was to the point they could not open me up with a decompression tube like last time because it was pretty much healed shut with only 2 cm if that to spare. Another surgery was the only way to fix it. The surgeon at my local hospital went in to do laproscopic but ended up having to do "open" surgery to be able to see and fix things correctly. He removed the healed up/closed shut anastomosis connection. He then created a new one that flows with my body and has a larger diameter. The small bowel no longer twists as it connects to the rectum. It not flows with the curvature correctly to allow bowel to flow the way it is suppose to.
I have been suffering with the same sxs for the past 6-8 years I was in my late 30s when it began. I am sorry, but I am going to ramble here for a minute or so. When the sxs (symptoms, I am sorry I am a nurse and use these abbreviations and forget non-medical people do not know them as I do not know all the txt abbreviations. LOL) I attributed it to eating the wrong foods and figured that I had intolerance to them, I do have a gluten sensitivity which began after delivering my daughter at the age of 30 and was treated by a dermatologist for adult onset (suddenly) acne. That lasted for a couple of years and a couple hundred dollars. The remedies did not help. I finally got set up with a ENT surgeon colleague that did allergy testing on me and I had sensitivities and allergies to everything. I went gluten free in 2011 this helped with the rash, but the GI sxs continued. My PCP kept telling me it was allergies, he put me on anti-depressants, allergy medication, and medications for GERD. I continued to have the debilitating pain, bloating, constipation, weight gain of 20 lbs in less than a year nausea and vomiting. I went to the DR every 6 months, I continued to complain of the sxs and he told me I was constipated increase my fiber, water, exercise, etc. I have completed triathalons and am very active I do not live a sedentary life. I was labeled a drug seeker by my colleagues in the ER, when I worked in the OR I almost lost my job due to the illness. I was told it was stress and depression, anxiety. I am a health care professional and I was not depressed unless not having a diagnosis contributed to this. I saw a GI doc more than one in the same practice (3 actually) one said I had IBS with constipation, another said I had slow transit constipation and the last one that is new told me I had and she knew for sure I was dealing with chronic constipation with IBS. I was admitted to the hospital many times due to the pain, inability to eat, n/v. I went to a nutritionist they told me I was starving myself and that I needed to consume more calories. The last time I saw my old PCP I heard his nurse out in the hall saying she is here for drugs again. After my appt, I went to the checkout and told them thank you for the service I will not be back. I found a new PCP one that I had seen on a consult by the general surgeon that could not figure out what was going on and wanted to help me as I was miserable. He sent me to Rochester NY Dr Ullah a GI specialist, he told me after all the testing and trips 2 hours away each way, I had chronic constipation and I would be on a laxative regime everyday for the rest of my life. He changed me too senna 2 times a day to help. I was as of 10/2013 taking Miralax 4 times a day, Colace daily, senna two times a day, pericolace daily , fleets as needed, dulcolax as needed and mag citrate as needed. Somedays I would defecate and then some days even a week at a time I would not go. I was being harassed by my supervisor at work for my absenteeism, I was disbelieved by the nurses that I worked along side, I was labeled a drug seeker, and it has been very hard emotionally and I try to keep the positive. I saw Dr Camilleri in January 2014 after the general surgeon that has done several diagnostic laparoscopies on me without a diagnosis, I have had 4 colonoscopies, 2 endoscopies, capsule endoscopy, small bowel follow through several times, sitz marker test that was normal they gave me the capsules and had me come back 5 days later continuing my laxatives of course it was normal. I glow from all the CT scans and X-rays. My very close and dearest friend is an anesthesiologist that has watched me suffer with this and she researched and found Camilleri at the Mayo Clinic in MN, I had surgery in August which was negative and the surgeon called Camilleri and spoke with him, he accepted my case and it took until January to get everything in order. I had the nuclear motility study, ano-rectal manaometry, EKG and colonic manometry. The colonic manometry was the most intense pain lying still for 5 hours that I have endured and will never have done again. My gastrocolic reflex is non-existent, but with the IV neo I did have some contractions. It was hopeful by Dr Camilleri and Deb that I would also be a good candidate for Reselor I received the Reselor on 2/7, I began taking the medication I had a very hard time with the cramping (almost contraction like) it caused and the inability to defecate, I had to continue using laxatives. I spoke with Deb yesterday and unfortunately I failed the trial in less than a month and am now looking at the same surgery. I am scared, nervous that it will not help, etc. I wish you the best of luck and hope all goes well. Please update as to the outcome as I am going back to the laxative routine until I can absolutely not stand it any longer. I am sorry that I rambled on but, it has been a very frustrating journey and I wanted you to know you were not alone. I also am very grateful for the support system that I have including my close friends and family. And for the Drs that believed that there was something wrong and not giving up on me. Dr. R. Gulati, general surgeon in little town Elmira, NY, Dr. J. Detar anesthesiologist and last but absolutely not least Dr. D. Reddy without this excellent team of health care professionals from a little town I would not of had a diagnosis and know that there is a solution.
Thank you so much for sharing your story... It's been quit a while but after searching the web I cam across your post! I'm suffering from the exact same symptoms and have been for most of my life. I have been totally dependent on enemas and laxatives for over 20 years. Im 39 years old now. I recently was diagnosed with Colon Interia... WHAT EVER THE HELL THAT IS! I was told that a colonectomy was the answer... IM SCARED TO DEATH! Confused! I don't want to be running to the bathroom 10 times a day or having leakage at night! WTH???? But I don't know how much longer I can live like this either! Im in constant pain! My life revolves around my bowel movements and when I can schedule 1-2 hours to lay on the bathroom floor doing and enema! Laxatives and enemas are slowly woking less and less! I have to take massive amounts to get any movement! Im miserable! I hope your still get this message since its been a while but I would love to hear how your doing now....
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