Wednesday, March 03, 2010

redundant colon


Today was not a good day for my tummy. I had some errands to take care of in the 'burbs and while doing so had another attack of the redundant colon. Luckily, my girlfriend lives close to where I was so I sped over to her house to take care of business. This isn't the first time this has happened and thankfully we're close enough friends that no words need to be exchanged as I go flying through her front door en route to the bathroom. She makes sure the magazines are stocked and even leaves a glass of ice water by the door for me.

I should clarify something about this redundant colon (also called "tortuous colon"). Yes it's a gross topic but it's not all about shitting. When I have an attack I get these incredibly sharp pains in my stomach, abdomen, or sometimes right under my ribs, it varies. Then my palms start sweating and I get really cold and nauseous and sometimes I throw up or dry heave until the pain subsides. The dry heaving is usually worse than throwing up because it lasts a lot longer and is exhausting. So why some of these issues are strictly bathroom related, about half of the time it's just intense pain and nausea and all I want to do is curl up into a ball, which is hard to do inside a tiny stall of a public bathroom.

My gastroentologist prescribed dicyclomine which seemed like a wonder drug for the first couple of months but it's not working so great anymore. Stress exacerbates the issue so I'm sure that's part of it. Ok I know there was a point to this post but now I can't remember what it was. The pain makes me forgetful so if I remember where I was going with this I'll come back to it.

*Update: In April 2011, I was diagnosed with Systemic Candidiasis (in my gut/colon). This has played a HUGE part in these digestive nightmares and for those of you suffering with similar issues PLEASE do some research, find a holistic doctor (if your medical doctor doesn't offer any help), and take control of getting your life back! For more information on what has helped me check out: Live Healthy (nocandidaallowed.blogspot.com). I no longer suffer like I used to and the biggest reason is due to a change in diet which has resulted in less inflammation in the gut. Had I known this YEARS ago, life would have been a whole lot different. But, it's never too late...there is hope and I am confident that at the very least, you will be able to alleviate the severity of your symptoms. Just don't give up.

328 comments:

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karen gerstenberger said...

It sounds awful - awfully painful, awfully nerve-wracking and awfully inconvenient. I am so glad that your friend lives near your errands. XOXO

KBL 2 ORD 2 SAN 2 LUV said...

What a difficult cross to bear. I cannot imagine how painful it must be. I can't even stand the monthly cramps I get. I'll be praying you'll find something to help be comfortable and pain free. In the meantime, stay away from Indian! LOL!

Anonymous said...

Have you ever been tested for celiac disease? Its an autoimmune disease that causes your body to attack itself (the intestines, specifically)in response to gluten (found in wheat, barley, and rye). Its fairly common, but extremely underdiagnosed.

Good luck!

Smileygirl said...

Was tested for celiac last summer along with a bunch of other food and environmental allergy/sensitivities. All came back negative. Had a colonoscopy in December and that finally diagnosed redundant or tortuous colon which also triggers IBS symptoms. Double fun!

Anonymous said...

Are you feeling better today?? I hope so.

Live For Today said...

I'm wondering if perhaps I might have this as well.

Clippy Mat said...

that's bad :-(
having had some episodes of gastrointestinal wotsit on occasion with sweating, nausea and almost getting caught short i feel for you. it's awful!
just wondering have you tried relaxation/mediation?

Smileygirl said...

Live for Today, if you see a gastro guy and tell them your symptoms they may approve you for a colonoscopy. That's the only way they can tell if you have it.

Clippy: I have tried meditation but my mind is ALL OVER THE PLACE and I get more frustrated, and therefore more stressed. It's no good for me.

Tracey Axnick said...

This sounds horrible. I'm so sorry... and I know all the stress you're dealing with is definitely compounding it. I hope it eases up soon...

Anonymous said...

I just had an incomplete colonoscopy which lead to a barium enima all in the same day... they concluded with a torturous colon. I've been searching for any type of information on this on the internet and it seems pretty vauge... I still have yet to go to the follow up with the GI specialist and see what needs to be done. Thank you for your site. It did help me, Its nice to know that some of this is not just all in my head!

Smileygirl said...

Anon, sorry to hear you have this too. There is not a lot of information out there because I think most people lump this into an IBS category and don't even have the colonoscopies to diagnose a colon condition, especially if people are under the age of 40 and don't have a history of colon cancer in the family. I'd be interested to see what your doctor prescribes for you to treat this. My symptoms are not usually consistent so the medication I was originally prescribed doesn't seem to help too much anymore. I had 2 good days (non blow up days) and then 3 BAD days last week. It is very rare to have more than 2 good days in a row. It is soooo frustrating as you know and I guess there's a reason it's called Tortuous Colon! Good luck to you and if you feel comfortable sharing more info, please do.

Take care.

Anonymous said...

Thank you! I am only 33 - you are right about the dr.s. I had 3 different ones say I had IBS with out even giving me any tests. Finally found an awesome primary Dr. that gave me some tests and thougt it was time I would see a Specialist... leads me to the tortuous colon and they also found adhesions (from c-section) and hemroids inside the colon as well...
I am much like you and hardly ever have more than 2 good days in a row...
right now I'm on my own with laxitives, stool softeners, and a high fiber diet until I go for follow up in 3 weeks... they don't seem help with the pain part...
I have your page saved as a favorite and will let you know what they have me do ... Thank you sooo much for helping me be a little more possitive on this! : ) Jenn

Smileygirl said...

Wow, Jenn, you are the only other person I've "met" who has this and are also young!

Do you avoid certain foods? I've been trying to stick to more of an IBS type diet (cuz I can't really find anything for a tortuous colon diet) but it's sooo hard. One thing I can say that helps is drinking a LOT of water and taking fiber supplements. I take Fiber gummies (they are really good too) and sometimes drink Citrucel powder but that tastes gross so I don't do that as much as I should.

I'm glad you finally got a good primary doctor and saw a specialist who will hopefully provide some relief from this. There is a light at the end of the tunnel!

hdub27 said...

trust me i feel your pain. I am 19 years old and I have diverticulitis and a redundant colon and ibs. I have severe abdominal pain and chronic constipation. I want to have surgery done to removed the extra part of my colon so I am able to use the bathroom without laxatives. The doctors tell me to take miralax but it does not work. I changed my diet and even lost 30lbs but i still have horrible pain that really interferes with my life every single day. I am a full time college student. I play softball and coach my sisters 10 and under softball team. I have no time for my stomach to bloat up and look like im 6 months pregnant. I feel like no one believes me. I just do not know what to do. I think i have taken every medicine known to man for this disorder. Ive had x-rays, colonoscopy, ct scans, blood tests, and a barium enemas and no one knows what the deal is :(

Smileygirl said...

hdub27, the stomach bloat is soooo uncomfortable and totally makes you (not just you but people with Reduntant Colon!) look pregnant. I'm sorry you're so young to be dealing with this. Have you read about the surgery and its risks/benefits? There really isn't a lot out there on this condition which makes researching it difficult. I'm sure you've probably tried everything under the sun as well when it comes to natural remedies but I will suggest a medicinal tea called Smooth Move for the constipation issues. You may need to take it several days in a row but some people seem to have success with this tea so if you can find it I would try it. I tend to have the reverse problem, but I still blow up like a basketball and then literally have to get to the bathroom in seconds otherwise...NOT GOOD. Keep me posted on your progress and if you decide to have the surgery.

Anonymous said...

I would like to exchange links with your site tlc-smileygirl.blogspot.com
Is this possible?

Anonymous said...

J'ai appris des choses interessantes grace a vous, et vous m'avez aide a resoudre un probleme, merci.

- Daniel

Anonymous said...

You've got to deal with the tortuous colon yourself, don't have surgery if possible. Eat very well, little dry food like chips, bread, eat soft slightly oily (olive), moist foods, and most importantly chew very well. Gandhi said drink your food and chew your drink. Exercise, walking is best, take psyllium for fiber, eat prunes, (not too many-maybe 4/day), take extra fluid, try triphala powder before bed. Don't eat cold food or have ice in drinks, cold slows the stomach and colon activity. Try heat on the abdomen, use an electric heating pad at bedtime. Yes, I have a tortuous colon as well. You'll have to work out the details yourself or have some help from friends. It's manageable, don't quit, never give up, you'll be fine. Lose wheat/gluten it also slows the colon down. Luck!

Anonymous said...

Learn reiki. I also have a redundant colon and don't have to go through anything like this because performing reiki over my intestines every day. Works like a charm. Best wishes.

Renny said...

My heart goes out to you, all these years thinking my body was just different. Having dealt with these same symptoms for years, from the IBS diagnosis to diverticulitis. Every treatment may but mostly may not help long term. The severe cramping, the bloating and the nausea are the worst. Having just had a very painful colonoscopy (which they had to finish with a pediatric scope) and several 8 to 10mm sessile polyps removed (awaiting pathological results), now the news of having Redundant colon has thrown me into a tailspin. Finding your blog has given some insight plus knowing someone has these issues is helpful. Thank you for your blog.

Anonymous said...

I am 23 and was diagnosed last year with a redundant and torturous colon and have all the IBS issues that come along with it too. My doctor was pretty horrible and not helpful at all though and never told me what it could be from. All he told me was to eat more fruits and veggies and drink more water, but I'm not even unhealthy and I do that already so I just don't get it! Is it common that it could be a food allergy? Have you found anything that helps?

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Anonymous said...

Thank you for this site. I am up crying in pain tonight again...I don't feel so alone. The pain was almost unbearable for most of the day today:( I feel so trapped sometimes because I can't go anywhere without worrying if there is a bathroom nearby. It is so humiliating. My life is taken over. At times I feel like I just wish I could die rather than be in pain this way. The birth of my daughter was and still is the best thing that has happened to me, but the problems from the C-section have changed my life so much. It's been 8yrs of this pain and I am so tired. I can't remember my last pain free day. I don't feel like a woman sometimes. Sex is painful and I look like I am pregnant. It's hard to explain how this has affected my marriage. I miss the intimacy with my husband. I miss feeling sexy and attractive. I fear he will cheat because of the lack of sex. Sometimes i do it in spite of the pain because I know as a man he needs intimacy. I just wish things could back the way they were...but still so grateful for my daughter. Thank you for sharing your story. I pray for us all.

Smileygirl said...

Anon, did the C-section cause your colon to twist? If you didn't have this before the C-section than it sure seems like something may have happened and it's too bad the doctors can't figure this out or fix it for you. I am so so sorry to read what you wrote. I completely understand how frustrating it is and how this can affect EVERY aspect of your life. I pray that your husband is compassionate and understanding with this situation because you don't want the added stress of worrying about his loyalty. I have been wanting to post a follow up to this for a while and think I will do so today because it definitely helps to feel the support of others as we suffer through this. You are not alone and sadly there is not a lot of info out there so it makes it hard for others to relate or understand what it's like to live this way.

Thinking of you and hope you'll be ok.

Maria said...

I have IBS and have been on 2 supplements (to help with hyperhidrosis, actually, not the IBS) and have noticed a drastic improvement in my IBS symptoms. I no longer cramp or have pain. They are called Kavinace and Travacor. I also take an additional 500mg of magnesium. I suggest looking into these items. They will help with your stress level as well, so that you can "get out of your head" and reduce the physical response to stress. I recommend buying them from pureformulas dot com.

Anonymous said...

I have a redundant colon also. The pain is often excrutiating. The worst part is that I used to love to travel, but now I am afraid to take long trips. Also, the lack of understanding. Impatient friends and family who think I am exaggerating when I don't want to go out for dinner, or try some meal they made. Thanks for sharing. I have not found many people who either have this or are willing to discuss it.

newcince said...

What a wonderful blog. I too recently just got diagnosed with redundant colon. My doctor also did not offer me any information about it other than to eat more fiber and that I would be fine. I wonder if anyone else has felt severe fatique because of this? I have the sharp pains from time to time, but mostly its a constant dull ache that moves from side to side. I have the most trouble when I am sitting down. There really isn't much information out here about it. I really really worry about the fatigue and brain fog. Thanks for having this great blog!

Suzette said...

I, too, have a redundant, twisted colon. I can relate to everyone's pain and all the issues that come with it. My gut swings from extremes of severe runs or severe impaction, so it's nearly impossible to figure out a way to eat for both extremes. On the bright side, I quit coffee, dairy, wheat, gluten, soy, etc. at my dietitian's suggestion and a lot of my daily gut pain and daily headaches disappeared. The ridiculous bloat and IBS extremes are still there. Also, for the times that I'm impacted, I find that having a couple of cups of hot squash soup ("Imagine" brand in the carton) for supper, plain, along with hot tea, seems to get things rolling again. Hope this can help someone...:-)

Anonymous said...

i just found out that i have redundant colon (after a first-time colonoscopy which i insisted on having without any sedation) -- i was told that people with this usually suffer from constipation. i don't, but i did all through childhood. i eat lots of fresh raw vegetable salads and vegetable stir-fry at home --- so this is probably why i never even knew i have a redundant colon!

Anonymous said...

Hello Ladies...I l say posted in Feb. I developed this condition after my colon was twisted during my C-section. I just wanna say thanks to all of you for sharing your stories...since the last post I have become a vegan. I have also found these herbal supplements from a company called New Body called CKLS. I went to see an irradologist who put me on a raw diet for 2 months along with these herbs and I feel so much better. But most of all I have a change in my attitude that has been helping me heal my mind, body and soul. I am taking care of ME so I can take care of my daughter. It helps to know that you are not alone...this blog is such a great thing. To all of us out there we on are on the way to being healed. Thank you ladies again for connecting!;)

Anonymous said...

Hi my name is Laura too. I know exactly how you feel, you described it perfectly. I have been suffering for years, but only recently was told I had redundant colon, doc. said try mirilax every day, that seemed to work for a few months, but now worse off than before, recently found cysts on my kidneys and I don't know what else, within the last couple years I had a hysterectomy & my gall bladder out, def. still don't feel right but don't know where to go from here. How are you doing? Any improvement for you?

Me said...

Hi new redundant colon sufferers:
I haven't checked here in a while and I apologize for the delay. I have to say, in addition to having this nasty colon, I was recently diagnosed with Candida and have gone through a MAJOR lifestyle/diet change (no dairy, gluten, sugar, alcohol and limited fruits) and let me tell you, what an improvement! I still have massive bloating when I eat anything but have not had an "episode" in almost 2 months. I'm still taking fiber along with lots of probiotics, digestive enzymes as well as caprylic acid tabs every day to kill the candida and that along with a mostly raw diet has done WONDERS for my colon. Had I known this even 5 years ago, my life would have been much different. Please google candida and see if you have any similar symptoms and if your doctor doesn't acknowledge this, please seek a naturopath or someone else who will. I no longer see my gastro dr or my gyno (which was for endometriosis, caused by candida). Many candida sufferers develop chronic yeast infections (down there) but mine have been specific to the gut (blessing and a curse) but that is why it gets passed over as IBS, Chrons, colitis, etc. Obviously redundant colon is a physical problem with the colon but the treatment for it could be triggering candida to grow out of control if you have that too. We don't have to suffer and live our lives scheduled around bathroom emergencies and if and when we can eat at a restaurant or a friend's house. There is help for us and you may need to start fresh with a nutritionist or naturopath who specializes in a holistic approach to healing. The meds for IBS or colon issues are only a bandaid and can often make things worse in the long run. Keep in touch and we'll help each other!

Anonymous said...

Does anyone pass out as part of this? I had an incomplete colonoscopy also. These symptoms are all familiar except the constipation, which I did have as a child. I faint away. Pretty scary. It started as a small child, and seems to be getting worse. Also embarrasing. If this was the cause all these years I am grateful to finally find out. Doctors told me it was anxiety. My mother also has what she calls "spells." I call mine "episodes." :)

sss said...

Just an update on a chronic condition I've had for almost a decade. On top of the whole redundant colon problem and having my gallbladder out 6 years ago, I was having these extreme swings of constipation and then diarrhea for weeks on end. In the past year, the runs got so bad that I became severely underweight. My concerned sister typed into google "diarrhea" and "gallbladder removal" and within 5 minutes found a blog about the drug "Questran". Every single person on the blog described everything I've been going through! So after ruling out things with an endoscopy and colonoscopy, my GI doctor ordered me 3 months of Questran. Some people experience problems with bile/diarrhea after getting their gallbladders out. This medication somehow does the job that a healthy gallbladder would have done. For the first time in over ten years, I feel completely normal again! My gut is now simply a non-issue! I will still eat a more bland diet, but at least I can now eat and function and actually leave the house and get out without worrying about a problem! All the best to you. Hope this helps...

fiddlechick said...

Hi. Googling "redundant colon" I stumbled up on your blog. I should tell you I have been diagnosed with a redundant colon through a colonoscopy - after 40+ years of suffering, testing, indifference by dr's, being accused of hypochondria, being told I'm "depressed" or (well I think most of the people on this blog can relate). Anyway, found a GI doctor (female) who cared enough to order a CT scan (which I've asked to get 20 years ago but too expensive for my hmo to warrant). So the CT scan confirmed the Dx, and also revealed an internal hernia - probably been there a while. (One of the only reliefs I get from pain is to lie on my right side and "clunk." When I would explain this to doctors they'd look at me like I'm crazy. But this all makes sense to me now.)

So now I'm faced with some major surgery. The surgeon I've been referred to says he doesn't know how extensive this will be, but I will have to be opened up and at the very least have him repair the hernia, and probably resect my transverse colon, and possibly remove part of the scarred colon or small intestine that's pooched thru the hole in my abdominal wall. So we're looking at a few months of debilitation.

Sorry for the rambling, but based on what I've read in this blog, I'm sure most can relate to my story. I know surgery is an extreme measure, but the surgeon warned me that, tho I've lived with this pain 40 years (I'm 58 now), eventually because of the redundant colon added with the hernia, I could end up with an emergency situation, say when I'm 70, and less able to tolerate such a major surgery.

Has anyone here heard of anyone else having surgery for redundant colon? If so, were they "cured" of the pain? (Thanks for letting me blog here!)

Me said...

Fiddlechick, do you know when you will be having this surgery? I'm wondering if there is one last ditch effort you could at least try before you go through something this major. Let me just throw this out there and you can decide what to do. Here is a link to the candida diet (http://www.thecandidadiet.com/) and if you cut out dairy, gluten, sugar, vinegar, alcohol, etc (all the foods to avoid are listed on this site) I wonder if some of your symptoms may subside. The other thing I would suggest (again, I'm just throwing this out there so please don't think I'm being too pushy) but maybe if you went to a naturopath for a second opinion just to see if there are other options before going through major debilitating surgery. I have looked into surgery for redundant colon and while there isn't a lot of info out there, the stuff that I did find made me very scared based on the risks. But then again, it comes down to quality of life. So would I rather spend 5 hours a day in the bathroom without surgery OR end up with a colostomy bag and never use the bathroom again? While that may seem extreme and it is, that was one of the possible risks that scared me the most. If there's any way you could try to cut out the foods mentioned above as well as all artificial and preservative filled foods for even 2 months, I'd be surprised if you didn't notice improvement. Please keep us posted and look into Candida as well (Even if you don't have it, the diet is not going to hurt.) Take care of yourself and know that you are not alone!

Me said...

Fiddleck, just thought of one last thing...It's obvious the hernia surgery is unavoidable and I guess if they're already in there the surgeon will decide what to do based on the severity of your colon. And I'm sure you wouldn't want to have to go through another surgery if they decided not to work on the colon at the same time they are fixing the hernia but I would still look into this situation with a naturopath if you have one in your area. If only to get a second opinion and/or to keep you as healthy as possible before you go in for major surgery. Ok just had to share that last thought!! I will be thinking of you so please keep us posted.

Becky R said...

I just was diagnosed with it - doesn't anyone recommend surgery? Does it helP? Going to try gluten free to see if it helps.

bipolarbecky said...

Going to try gluten free even though tested negative for celiac disease, ulcers -- redundant colon.

Janeyoctopus said...

Just diagnosed with tortuous colon, with sharp angles and loops. I had 4 colonoscopies in a year, and now 4 years later, they used a childs scope. At my two week check up I was given myralax. I think it worked one time, but Id eaten beans and a whole can of pear nectar. I mix the myrlax with peach mango juice. Dried fruits worked one time for each type I ate. I dont want to be ducolax dependant but it is the only thing that works. I am stuck at home, because if I should go to the bathroom it could take hours, I dont know how I will return to work after summer. The doctor didnt suggest surgery since he felt it could make things worse. I know of no other option. I sweat every morning for several hours while peristalis is trying to work. I think it gets to an angle on my left side and sits there. Diarrhea would be a blessing. Sometimes I think I am going to have to have the colon removed someday and that is scary. I sure wish the doctors cared enough to discuss solutions.

Anonymous said...

My daughter was recently diagnosed with redundant bowel syndrome. She has some of the same issues as you do. The doctors have put her on a high fiber diet but that is all they did. I was wondering if there are any secrets you have to help her with the pain..They really haven't given her any medications.

Me said...

The pain could be due to inflammation. I would recommend staying away from all inflammatory foods. Cut out dairy, wheat, gluten, refined sugars and any artificial/preservative filled foods. My life and digestive system has completely changed for the better by following a diet free of inflammatory foods.

I think the Candida diet will be helpful for anyone affected by digestive issues due to redundant colon (even if they don't have candida).

Here is a link with all sort of helpful information:

http://www.thecandidadiet.com/foodstoeat.htm

I am working on a site as well regarding diet and lifestyle changes and will share on here when it's live.

Good luck and keep us informed as to how you are all doing!

BBinMN said...

I have had IBS for a number of years, and usually do not have constipation as an issue - it's usually explosive diarrhea that attacks out of nowhere. A few years ago, I woke up in the middle of the night with severe chest pains, on the right side. My boyfriend took me to the ER and after 8 hours of tests, they ruled out gall bladder and a number of other issues, but found an ovarian cyst. I had a laparoscopy, and they discovered stage 3 endometriosis. After that surgery, I felt great for about 2 years, and started having the pain all over again last fall. They did surgery again and found 2 or 3 spots of endo, but not as bad as the first time. The last few months, I've been getting more and more abdominal pain, and now with bloating/swelling and some constipation. Thinking it was endo again, i went in to the Dr last week. Ultrasound was inconclusive, so he ordered a CT scan, which revealed the redundant colon. I too am only comfortable in very loose fitting clothes and feel like my belly is about the size of being 3-4 months pregnant. Luckily, my employer is ok with me working from home, but it's getting rather old. My dr prescribed vicodin for the pain and wants to do a follow-up in a month to see if another laparoscopy is in order, but after reading this blog, it's sounding like the colon is more of an issue than he lead me to believe.

Me said...

BB, look into a possible candida infection: http://www.womentowomen.com/digestionandgihealth/candida.aspx

It could be the cause of your endo and cysts as well. I had surgery for endo in 2008 and doctors never treated the cause, just the symptoms. Since I've completely changed my lifestyle (going on 6 months now) I am pain free and no more issues during my cycle. Please check into this!

campgirl64 said...

Have had issues w/stomach/colon most of my life. Now at 70, just had 3rd colonoscopy in 10 yrs and been dx w/torturous colon. I have stumbled upon a book EAT TO LIVE by Dr. Joel Fuhrman, which I am trying.

After 28 yrs of IBS, diarrhea, pain, etc., I went macrobiotic and became regular for first times in all those yrs. Then 12 yrs ago got giardia and these symptoms of pain, bloat, ABOVE my navel appeared and I've been trying for 12 yrs for help. Giardia is now neg. Been to Drs., naturapath, tried diets, very little relief. My gastro isn't much help after this colonoscopy, just said I have a long colon, scattered diverticulosis and IBS.

So is the colon so large (I'm 5'4", 130 lbs) that it make me so uncomfortable and bloated feeling???

The only reason I know I have a very torturous colon is that I got the medical report from the procedure and read it and am now learning from this blog there are others out there like me.

Thanks for your postings.

Me said...

Campgirl: 28 years of suffering is just not right! I'm so sorry you are dealing with this. I'll check out that book but I know the biggest thing that has helped me is giving up dairy, gluten, refined sugar (alcohol too) and several other anti inflammatory foods. It has been a life changing difference. I started a blog about what has worked since discovering my gut was filled with candida about 6 months ago: Live Healthy I hope you find some relief. Stay in touch and know that you are not alone in this.

Anonymous said...

Having had a incomplete colonoscopy "over 50" screening, I was sent for a barium enema, which showed that I have a redundant colon. "That's a lot of colon for such a tiny person", said the Doc. Ick. But I will say it was like a revelation...oh, THAT's why I've battled constipation on and off for years...oh, THAT's why I was in such pain that I had to go to emergency, only to tell me I had constipation. THAT's why I sometimes go, not super uncomfortably, for a week without a movement (when most people freak out if they miss a day). Actually, I've been fairly lucky with the gastro part of things...or maybe I'm just so used to the feeling of constipation, that I don't think about it. But my big problem has been migraines, and I wonder if there is any relation (toxins??). I have seen a few people mention the gluten-free route, which I tried because of my headaches. It has actually helped a ton, to the surprise of my doctors. Thanks for this post...while the info is still sketchy out there, I've learned a lot from others here.

Anonymous said...

I have never responded to a blog before but I feel compelled to after reading all these posts. I've had stomach issues/IBS pretty much my whole life. I'm 33 and had my first colonoscopy today and was diagnosed with a redundant tourtous colon...I'm going to check out the candida diet because I've noticed sugar (& I'm afraid dairy) affects me negatively with bloating/nasea etc...I go back & forth between constipation and since I had my gallbladder removed last august, explosive diarrhea...I go back for my follow up on 1/11 so we'll see what the doctor says about what he found today. He seemed surprised at how many "twists & turns" my colon had. He did 6 biopsies and I'm sore and weak :( I'm so over all this tummy shit ( no pun intended :) thanks for all the insight...this is a great forum. I can hardly find any info on the web.

cowgirl said...

I also was diagnosed with a severely redundant colon. I have been constipated for about 4 years. Doctor said it was probably caused from hysterectomy. They fix one thing and cause another??? Damnit! Anyway. I am small framed and bloat up and look pregnant. My blood tests are super good for no inflamation (C reactive). My grown children are starting to think it's in my head. I have to take strong stimulant laxatives just to go. I then end up going all day! It is ruining my life! Also, has anyone else out there not been able to totally cleanse for a colonoscopy. I had to fast 3 days with only clear fluids and prep and still didn't run clear. I thought I was going to die if I had to go another day of prep. They told me to take 18 (yes 18) doeses of Miralax on the third day!! I felt horrible and was going to cancel but the doc said he would go ahead with it. That is when he told me how loopy I was inside! Since then, I have had CT scans and an MRI and they come back that I am full (graphic) of fecal matter ( like 5 to ten #'s) When I go, I sometimes loose 5#'s, only to start accumulating again! It is so uncomfortable! I usually have to drink senna tea (really strong, 2 tea bags). I don't trust Drs. anymore. They screwed up my insides and now they don't have any answers! :( Sorry about the context of this post! I can't do this much longer. They have even prescribed me on going vicodin. Anyone knows that will only make it worst but sometimes have to take it bcause I am in such agony!
It basically has made me a different, not so happy person...

Anonymous said...

Reading this blog, all I can say is wow. I have suffered with severe abdominal pain for years. I have been treated like a drug seeker by GI guys (especially weird since I never got any drugs!)They diagnosed me with gastritis and IBS and acid reflux. They accused me not doing the prep for colonoscopy even though I did it perfectly. I have been constipated my entire life. I never did go to the ER even though I can sometimes be in such severe pain that I cannot stand up straight, I turn white as a sheet and sometimes feel that I will faint. FINALLY, I swiched to a doctor who actually sent me for a CT Scan while I was having an attack, and they diagnosed volvulous and sent me to the ER. The next day they did a barium enema and told me I have a reduntant colon. I am 52 years old and I never knew this. I knew I was constipated always, but I never feel uncomfortable from it. SO WEIRD, I know. When I do go, I sometimes pass stools that would make Ripley's Believe It or Not. (gross, I know.) The worst part of all of this is the volvulous, which I realize only recently is causing the severe pain I suffer 1-3 times per month for years now. I am incredibly healty otherwise: proper weight, healthy eater of organic fruits and vegetables, don't drink or smoke. This has been absolutely crazy! I can't believe that I'm sharing my story here, but reading these stories has really helped me not feel so crazy and alone. I'm seeing a new specialist tomorrow, and I feel so much more confident to report these problems. No one has ever helped me with this before, and I thought I just had to suffer in silence. Volvulous is life threatening! Who knew!

ladynj7 said...

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Thanks for your post... I can feel your pain and it is so inspiring to know that there is always hope in all our situations however difficult it may be.

Anonymous said...

Ladies,

Keywords in my response: redundant colon, multiple surgeries, rectocele, mesh complications, urethral diverticulitis, vulvar vestibulitis, and personal advocacy.

In the last 4 years I have had 3 major pelvic reconstructions. The first included a rectocele repair with a mesh graft, bladder sling, vaginal vault suspension, hysterectomy with left ovary removal.

Word of caution, please consider any and all surgeries with a great deal of research, your own personal advocacy and a good team of doctors who has at least one of them at the hub of the wheel of your "official" medical care. Own your body.

I was steered in 2008 by an ob/gyn I trusted to a randomly selected urogynecologist in a neighboring state because there wasn't one in our state who could - to his knowledge - do a rectocele repair.

Before having a rectocele, please find out if you have a redundant colon. The root cause for me of my issues has only recently in 2011 been realized and certainly the price has been paid with multiple operations.

The first urogynecologist surgeon imho botched my 2008 surgery big time. She was "renowned", but quick to cut. Traveling from out of state complicated matters, and fitting it into my work schedule even further. There were trips driving alone for hours with a catheter.

She used one of the mesh products that has been now been recalled on the rectocele, put the bladder sling in too tight, left more than half of the ostensibly removed ovary in, and then refused to believe there was still an issue. She said it was fibromyalgia.

Almost 2 years later, years of internal unsuccessful physical therapy, steroid shots in the vaginal nerves trapped in scar tissue - the ovarian remnant was removed, my intestines returned to their rightful place, and 5 organs "glued together" with adhesions taken apart. Still I did not know I had a redundant colon. Colonoscopies were unsucessful due to adhesions.

2 months ago, on Valentine's Day, I had surgery to REMOVE the mesh graft and release the bladder sling. The surgeon is one of the best in the world, and I travelled to yet another state.(The mesh was preserved for inclusion in a class action law suit.)

I'm still healing, there are multiple layers of stitches, but knowing what a redundant colon is, it is partially causative of the rectocele, plus childbirth, heavy lifting with military moves, and sexual abuse from a spouse with Asperberger's. Candidiasis, CFIDS/FMS, stress are factors.

Now, with the dust clearing from the original surgery and 2 subsequent clean-ups, we're back to root cause. Redundant colon affected the bladder and urethra from straining, and diverticulum in the urethra. Vestibular vulvitis and Bartolin's gland inflammation and vulvodynia. No sex x 3 1/2 years. Too painful.

Diet, exercise, candida eradication, stool softeners, Kefir, flax and Omega Oils, a handicap toilet, and taking care of ourselves - is so important. I put my family's needs above my own, my work first. To my detriment. Find balance. It took me 20 years to distill it all down.

Do I still get hot, cold, sweats, nausea, incredible pain - yes every day. Let no one tell you something "is a pain in the ass" until they have to deal with literally having their vagina cut and flapped opened multiple times to get to the tissue layer between the vagina and the rectum.

I have been fortunate with a compassionate gastroenterologist, colon surgeon, internist, women's physical therapy, and now a knowledgeable local urogynecologist who tested for vulvar vestibulitis. Persistence and knowledge are key.

Please do your homework, be open to knowing your own body, and touching base with others as in this blog who have felt alone in their struggles. I certainly did, and spent many moments crying in the closet and "gutting it up". There is hope, and how we deal with it, is our choice. Best wishes to the community.

msblondi said...

My God I read all of these comments and realise that I'm no a hypochondriac and that my condition is REAL!
I recently had a colonoscopy (after suffering from constipation and being diagnosed with IBS, for 22 years). I am SICK of being in pain and long to be able to empty my bowel without medicinal aid. I loved taking the Picoprep because it made me feel so light and healthy the following 3-4 days...then the buid up begins.
I have tried Duphalac, Bisalax, Coloxyl with and without Senna, Metamucil and Normacol (I can't even take the fibre increasing aids because I get so much pain from them), dried fruit, increased fluid and fresh fruit and veg, Innerhealth Plus (for IBS and Bowel Health)...I have done everything that has been asked of me, been tested for Celiacs Disease, Gluten and Lactose intolerance, helicobacter virus. Oh, I forgot to add that not only do I have severe bloating and pain from constipation (I go once a week with the aid of Bisalax which apparently is highly addictive), but I suffer from chronic reflux (sometimes so bad that I have to sleep with 4 pillows behind me.
Following my recent colonoscopy and gastroscopy, I was told I have a 'loopy' bowel. And I too find all the info on the net as vague (at best).
I'm going to speak to my specialist tomorrow and ask her about Candida, and some of the other methods that you guys have listed here (Smooth Move Tea, Questran, etc). I sit now with a hot cuppa and a hot water bottle on my tummy and I PRAY that I get some relief and a 'pill I can pop' to fix my ailments...I'll keep you posted if I have any joy.

juls said...

good morning. i began reading this and thought OMG she sounds exactly like me!! Im 36 and have had this since i was 17. Try explaining to your date why u cant eat out at a resturant. I too was dx'ed via a colonosocopy. which, was a very painful experience for me. I have a hard time holding down a job b/c of the unpredicitability of my flare ups. but your attacks are just like mine, the cold sweats, heaving and intense pain. MY dr prescribed some RX and it worked for like a week then my body adapted and it quit. I take a stimulant every saturday night and spend all day sunday in the bathroom. I wish there was MORE information and researc done on this topic and wish there was more conclusive treatment options.

Anonymous said...

I'm so glad I found this blog!!! I'm a 32 yr old, single female, who has suffered from pain since I was 26. I finally went to a specialist after my last episode and had a colonoscopy yesterday. I woke up during the procedure and screamed in pain when I felt them moving my stomach around so luckily they put me back under. Afterwards, they gave me a summary of their findings and it listed a torturous colon. I get my full results back when I meet with the dr. next Wednesday. While many of you have shared symptoms that I too have experienced, my own bouts of pain have come every few months for 1-2 weeks at a time. I would rate the pain at an 8/9. The pain is always on the lower right hand side of my stomach, and it is present at all times of the day. I usually get 3-4 hours of sleep a night when I am having an episode. I've tried a gluten free diet, experimented with cutting out coffee. At one point in time I even thought it was my birth control! Luckily, I figured out that was not the culprit. I read somewhere that pear juice could help. Anyone tried this???? Thanks again everyone for your willingness to share your experiences/tips. Having suffered alone for so long, I am so thankful to find this blog.

Anonymous said...

I discovered I had a redundant colon during a colonoscopy which explained to a degree why I ended up in the hospital at age 33 with a life threatening loop in my secum and had to have emergency surgery before my colon became gangrene! I was so shocked to learn that because of some physical oddity from birth my intestines are not attached to my abdominal back wall was they are in most people -- hence the secum free-floating and able to loop on itself. It has been over a year since that horrific trial and I am doing well, eating well, and healing through a mild yoga practice. Perhaps this sounds a little "woo-woo" but I went into emergency surgery immediately following a break up with someone who was verbally abusive and I think there was a correlation here - my guts were literally twisted and I was in a very bad place emotionally. Apparently, my case is quite rare and is more common to see vovulus of this sort in the elderly and in infants.

Sharon said...

Please find a good colo-rectal surgeon at a large University hospital. After decades of pain and mis-diagnosis I received the redunfant colon diagnosis. It has been 12 years since surgery and I am almost normal.

Jude Madala said...

Does anyone have redundant colon diagnosis due to stimulant laxative use?

Anonymous said...

Just wanted to give some clarification, as a doctor who has a mother with this condition.

1. Redundant colon means it is physically longer than a normal colon, and thus it loops over on itself trying to fit in the abdomen. You are born this way, and no medicine or diet will change the fact that it is long.

2. Studies have shown that redundant colon causes slow transit time, meaning your colon doesn't work efficiently and stool gets backed up, causing constipation and, as a consequence, pain. Often, it can get backed up to a point where there is no room left and then it all comes out at once, causing the explosive bathroom incidents people described above and cramping and pain.

3. Diet and medications help with the slow transit time. This is the part of the condition that you can try to improve. Laxatives and dietary modifications may help. It will not "cure" the fact that your colon is too long but it will alleviate the symptoms.

4. THIS ONE IS IMPORTANT. If you experience intense abdominal pain, nausea, vomiting that is out of proportion to your normal symptoms, you NEED TO GO TO THE EMERGENCY ROOM. Why? These symptoms can indicate that your bowel has twisted on itself, which means that it is strangulating and can die. You may need emergency surgery. If this is the case and you do not get the treatment, this can be FATAL. This is very rare, but everyone with the diagnosis of redundant colon should be aware of this possibility, so that they know to go to the emergency department if they have symptoms. Explain to the doctor that your colon is too long, and that you are at risk for VOLVULUS (which means the bowel twists on itself). They will understand that word, even if they are not familiar with redundant colon.

Hope that helps!

Anonymous said...

I was diagnosed with severe diverticular disease in 2000. My colon was of normal length then. I have had trouble with my colon since I was a small child...I was constipated much of my childhood. My mom thought Hostess was a major food group, so we ate very little fiber. My father also had colon problems...seems we inherited weak colon walls.

In 2002, I became pregnant with my third child and the pregnancy was terribly painful colon-wise. My previous two pregnancies were uneventful.

By 2005, I was having more frequent pain, but the constipation I had as child was replaced with bouts of bloody diarrhea.

By 2010, I was living in awful pain nearly daily so saw a colorectal specialist. My colon was too twisted for them to get the scope through, so no colonoscopy for me. They diagnosed my redundant tortuous colon via barium enema.

I had surgery to remove an extra 2 feet of sigmoid colon and an extra 18 inches of ascending colon.

Folks, I cannot tell you the difference it has made in my life. I was so very fearful of surgery that I would't even go see a surgeon. I remember my father telling me he would have done surgery much sooner if he would have realized it would give him his life back.

And that's how I feel...I have my life back again.

Good luck to all of you.

Anonymous said...

First IBS is basically saying," We do not know." but for our medical record so we can keep billing your insurance we need some diagnosis so let's just pick one! How do I know? When I worked in psy. and many times a dignosis was just given with the least stigma to some individuals why??? Because the insurance company wants one so we could continue getting paid! Things I've learned you need 10 parasite checks for 100% accuracy. All medical labs are not the same, so of the super good ones are not at teh medical provider your probaly seeing, see and Naturapathic doctors and they will send your blood to the best labs. So there are labs that are superior. The had a false positive test to H Pylori, the couple days later I saw infectious disease doc and it was negative and then tested again it was negative. You be infected and super sick but the antibodies are not showing, you have to get hell of lot sicker for them to see the antibioties that is if they are using the right labs. My Ent dr said you have Ecoli in the sinuses the infectious diesease dr mentions that ecoli in the sinus could be normal colonization. What? Yes infectious disease are usually super smart and they REALLY know their sciences and infectious diseases that is when dr are stumped if they are smart they refer you ! One of the simpliest, nicest :) natural cures for IBS Crohn's, SIBO and many other digestive disorders is simply reading Elaine Gottschall, the author of Breaking the Vicious Cycle, It works for tons of people after years of torment and suffering they read the book and the nightmare finally ends! It may not work for all but for many it has. Why did your doctor not tell you about it? Well they are so busy slaving at the hospital to see high number of patients because the hospital exectives are pressuring them that they are so stressed and overworked that they can hardly stay with you for more than 15 minutes let alone knowing anything alternative. Unless your dr is unsual and progressive or a country doctor.

Anonymous said...

I apologize for the typeos.

The other thing I want to write for women is never let a dr suggest anti-depressants when your NOT depressed but sick. Your complaints are valid, just because they are stuck in the 1950's do not let them take you back to the 1950's! Simply fire them and find some one that you respects and trusts you to cure you. The best treatment I receive is at my ND office, my acupunturist or my massage girl. Like I said ND WILL RUN the test you need! They want to cure you they are not getting a KICK back to give a cheaper medication or NOT refer you to the specialist you need to see! Many times medication is based on you insurance even if there is a medication that might cure you may not be mentioned, once your insurance is looked at that will determins sometimes what the doctor will suggest a lesser one! And get a fat bonus for saving the facility tons of money. Just know that SOME places run that way.

Anonymous said...

I cried while readng these comments. I am a sufferer too and feel do cheated of a normal life. I have days and days without "going" and find relief only from suppositories. Other things have worked before, but only briefly until my gut gets used to it. Doc has me on Colcrys (a med for gout) only in hopes of having the side effect if diarreah (ok, can't spell that). My most humiliating symptom though is flatulence. I didn't read anyone else saying this. Am I alone? Is this unrelated? I can't control it...its audible and foul. :( I avoid going places and enjoying activities because of it. Anyone else? What do you do??

Anonymous said...

I am 60 years of age and was diagnosed with IBS when I was 30 after a very stressful period in my life. It has been in the background off and on for years and after the birth of my 2 daughters I seemed to suffer more and more from constipation. I kept things under control with a couple of magnesium tablets every night which seemed to keep things moving. Over 12 months ago I started having quite bad pains in my left side, under my left ribs and as far down as my groin. My GP gave me Peppermint oil caps and Merbeverin tabs to see if they would help, but after months of discomfort and not much else happening with my GP I decided to seek out a colonic therapist and have my colon irrigated. This was almost 3 months ago and it was the worst thing I have every done! 3 days after my colonic I was in so much pain I could barely stand, the cramping was worse than giving birth and the visits to the loo were up to 20 times per day at least, I was sick weak and could not eat anything much at all for fear of what was coming next. My GP prescribed Buscopan and an appointment for a colonoscopy! The colonoscopy was hell, and the consultant said I had a very angulated colon and he could not get around the bends and could only see about 40cms in. He used a childs camera but even that was useless and he abandoned the procedure as he said he was at risk of perforating my bowel wall. All he could see was fine and tissue samples were negative, but the diagnosis was IBS caused by having a tortuous colon, and that was that you will have to live with it! So having read other posts on this website all I can say is never have colonic irrigation and only have a colonoscopy if your life truly depends on it! My GP said the shock of the colonic could have sent my colon into spasm which then twisted around itself causing these problems. I am still in pain, infact worse now than before I started the whole treatment thing, so the point of all this is to say think very carefully before you have anything pushed into a place that nature never intended anything to go into, but to only to come out of!!! Hope this helps someone. M England

Anonymous said...

I am 60 years of age and was diagnosed with IBS when I was 30 after a very stressful period in my life. It has been in the background off and on for years and after the birth of my 2 daughters I seemed to suffer more and more from constipation. I kept things under control with a couple of magnesium tablets every night which seemed to keep things moving. Over 12 months ago I started having quite bad pains in my left side, under my left ribs and as far down as my groin. My GP gave me Peppermint oil caps and Merbeverin tabs to see if they would help, but after months of discomfort and not much else happening with my GP I decided to seek out a colonic therapist and have my colon irrigated. This was almost 3 months ago and it was the worst thing I have every done! 3 days after my colonic I was in so much pain I could barely stand, the cramping was worse than giving birth and the visits to the loo were up to 20 times per day at least, I was sick weak and could not eat anything much at all for fear of what was coming next. My GP prescribed Buscopan and an appointment for a colonoscopy! The colonoscopy was hell, and the consultant said I had a very angulated colon and he could not get around the bends and could only see about 40cms in. He used a childs camera but even that was useless and he abandoned the procedure as he said he was at risk of perforating my bowel wall. All he could see was fine and tissue samples were negative, but the diagnosis was IBS caused by having a tortuous colon, and that was that you will have to live with it! So having read other posts on this website all I can say is never have colonic irrigation and only have a colonoscopy if your life truly depends on it! My GP said the shock of the colonic could have sent my colon into spasm which then twisted around itself causing these problems. I am still in pain, infact worse now than before I started the whole treatment thing, so the point of all this is to say think very carefully before you have anything pushed into a place that nature never intended anything to go into, but to only to come out of!!! Hope this helps someone. M England

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Hope. I was diagnosed with a redundant colon when I was about 20 ( over 30 years ago). I have made diet changes which helped but the most significant thing I have done was take a course in biofeedback. After biofeedback, I have not taken medication for years. I still have some of the symptoms others describe but only once in awhile. Biofeedback is worth trying; it changed my life.

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