Re: Bowel Endo
From: Mandy (anonymous@obgyn.net)
Thu Apr 8 08:52:41 2004
Hi. Thanks for the reply and for sharing your story.
--
Mandy
At Wed, 7 Apr 2004, Chris wrote:
>
>Hi Mandy, I'm sorry, I should've shared more of my story. I have been
>diagnosed and had the surgery. I too have been told that I have IBS and
>I am in complete denial that that's what I have, even though the bood
>does help me. I slowly developed all my stomach issues at the same time
>as the endometriosis was growing. I had all kinds of ulcer type pains,
>conststipation, diahrea and cramping. Finally, when I had my first
>surgery, after 17 years of suffering, my doctor found that I had
>endometriosis (stage IV) and adhesions on my intestines and other
>places. All my organs were stuck together, my uterus, colon,
>intestines, ovaries and fallopian tubes. Everything was so scarred
>together that the doctor had to cut me open because he couldn't even
>find my organs. After that surgery, I felt great! All bowel and endo
>issues were gone! I had felt so crappy for so long that I forgot how
>great it felt to just feel normal! Well, 1 1/2 years later, it all
>returned. Only this time it is worse. I went to a fertility specialist
>who performed a lap and found again that all my insides are stuck
>together by dense adhesions, this time including my appendix. He said
>it was too difficult for him to separate without cutting me open, so, he
>pretty much left mostly everything the way he found it! He was afraid he
>would puncture my bowel. I found out later that most doctors feel this
>way. I was so mad! He suggested in-vitro for me to get pregnant. I
>think it would be benificial if I could eat and go to the bathroom
>properly when I'm pregnant! I too have lost weight. I am 5'7" and now
>weigh 113 lbs., I've lost 15 lbs. so far. So now, I am on my way to
>Dr. Harry Reich. You've probably read about him here. Bowel
>endometriosis is his specialty and he can do it laparoscopically. He
>said that if the doctor who removed the endo the first time didn't
>remove all of it...it comes back with a vengence. Hopefully, this
>problem will go away again. And, from personal experience, I thought
>corn pops sounded like they would be safe too (it even says that you can
>have them in the book), but I found that I can't eat corn products
>either...it's a whole grain. The way I understand it is, the intestines
>are stuck by the adhesions. They need to be able to move in order to
>digest food. When you eat foods high in fibre and fat and whole grains,
>etc., those foods cause more movement of the intestines which are
>immobile which causes the cramping and indigestion, etc. You might find
>some useful information at
>http://www.pelvicpain.com/askdoctor_QA.html#endogen. This website talks
>about endometriosis and adhesions of the intestine (large and small
>intestines) and the symptoms. I still don't know if this will help you
>at all, but that's my story which I didn't post before. I'm sorry you
>are feeling so bad, I really sympathize with you. I have been
>feverishly searching on the same topic. I hope you find some answers
>soon! Chris
>
>At Tue, 6 Apr 2004, Mandy wrote:
>>
>>Hi. The thing is I do not have IBS symptoms. I have read the books for
>>IBS and this is something different. I eat corn pops w/no milk...I have
>>eaten them for the past 3 years...I am looking for someone to post who
>>has actually been diagnosed and had the surgery for the bowel problems.
>>My problems have gotten increasingly worse since December. I appreciate
>>your post, but I have tried tracking my foods and such and it's not the
>>issue. I have severe abdominal pains the second food touches my
>>stomach. Not minutes later, but right when I eat...almost as if
>>something is in a bind there. Then I immediately have to go to the
>>bathroom. I have heard all the IBS stories and done everthing according
>>to the books. But this is not the issue for me.
>>
>>Thanks,
>>
>>--
>>Mandy
>>
>>At Tue, 6 Apr 2004, Chris wrote:
>>>
>>>Hi Mandy, I have a lot of experience with bowel problems related to
>>>endo. First of all, you would do much better with a low residue diet.
>>>It's the fibre or whole grains in the cereal that's probably hurting
>>>you. I have found that the only cereal I can eat safely is rice
>>>cereal...Rice Krispies or Rice Chex, with skim lactaid milk. Give that
>>>a try and see if it helps. I try to eliminate, or eat as little as
>>>possible of fat, fibre, lactose, whole grains, raw fruits and veggies.
>>>For IBS people are told to increase their fibre, but that kills me. One
>>>website that helped me is http://www.helpforibs.com/diet/. I also got
>>>this book from the library - Eating for IBS Diet and Cookbook by Heather
>>>Van Vorous. The book isn't just for people with IBS...it's for people
>>>with all kinds of problems like Inflamatory Bowel disease, Chrons,
>>>Colitis, etc. It really helped me understand how to eat without getting
>>>sick all the time and why certain foods affect me the way they do. It's
>>>hard to live by, but I'm not sick all the time now. Which is a great
>>>relief. I never would've been able to figure it all out without this
>>>book. I can say that I totally understand what you are going
>>>through...your symptoms sound much the same as mine. Sometimes, the
>>>reaction is even delayed so long after you ate the offending food, you
>>>aren't really able to figure out which food did it to you!! Anyway, if
>>>you have any questions or want to talk, feel free to e-mail me
>>>personally. Chris
>>>
>>>P.S. I have posted this here in an earlier message from
>>>http://www.endozone.org/display.asp?page=endometriosis-coping-zone_0401_endometriosis-and-bowel-symptoms,
>>>but I will post it again because I think you would find it pretty
>>>interesting:
>>>
>>>Endometriosis and bowel symptoms
>>>
>>>by Ken Sinervo, MD of the Center for Endometriosis Care
>>>
>>>Many of the women seen at the Center for Endometriosis Care have been
>>>told they have Irritable Bowel Syndrome or a spastic colon. A few of
>>>them do. But many of them have endometriosis somewhere in their
>>>intestinal tracts.
>>>
>>>Endometriosis patients who present with bowel symptoms may experience a
>>>long delay in getting a diagnosis or have other medical conditions
>>>related to the bowel considered before their physicians consider the
>>>possibility of endometriosis.
>>>
>>>Bowel symptoms are extremely common in patients with endometriosis.
>>>While the exact percentage of endometriosis patients affected with bowel
>>>symptoms is difficult to pin down, information from the database Dr.
>>>Albee and I have compiled suggests that as many as 60% or more may have
>>>at least one symptom referable to their gastrointestinal tracts. Because
>>>of the nature of our practice we tend to have more patients with stage
>>>III and IV (moderate to severe) disease than may occur in the general
>>>population. Such patients may have more symptoms related to their
>>>bowels. Even so, the incidence is still very high.
>>>
>>>Based on the pre-operative questionnaires that all of our patients
>>>complete, intestinal cramping and painful bowel movements occur in
>>>approximately 25% of patients; constipation occurs in 35% of patients
>>>and diarrhoea occurs in more than 60% of patients. These numbers
>>>reflect the patients with severe or crippling symptoms only. When
>>>patients with mild or moderate symptoms are included, these symptoms
>>>become even more common.
>>>
>>>There is a constellation of bowel symptoms that can occur in
>>>endometriosis patients. These include:
>>>
>>>Painful bowel movements
>>>
>>>Constipation
>>>
>>>Diarrhoea
>>>
>>>Alternating constipation and diarrhoea
>>>
>>>Intestinal cramping
>>>
>>>Nausea and/or vomiting
>>>
>>>Abdominal pain
>>>
>>>Rectal pain
>>>
>>>Rectal bleeding
>>>
>>>Some patients will only have one of these symptoms, while others may
>>>have all of them. Often, these symptoms are more problematic during
>>>their periods or pre-menstrually. These women may seek medical help and
>>>undergo a series of GI tests, and when no clear answer is found, their
>>>frustration grows. However, a negative colonoscopy can actually be
>>>somewhat reassuring, because it indicates that endometriosis has not
>>>penetrated through the wall of the bowel.
>>>
>>>What causes bowel symptoms in endometriosis patients?
>>>
>>>In the great majority of patients, endometriosis is not found directly
>>>on the bowel. In general, fewer than 10-15% of patients actually have
>>>endometriosis directly on their bowel. When endo is found on the bowel,
>>>approximately 90% have superficial or localized disease. This disease
>>>can usually be effectively removed with simple laparoscopic excision,
>>>much as it would be removed from any other surface affected with
>>>endometriosis. The serosal or outer layer of the bowel can often be
>>>“peeled off” leaving the muscularis or muscular portion of the bowel
>>>undamaged.
>>>
>>>Occasionally, a portion of the muscularis must also be excised to ensure
>>>complete treatment of the endo. In these cases, the muscularis is
>>>oversewn laparoscopically. This just means one or more reinforcing
>>>sutures are placed to maintain the integrity of the bowel wall.
>>>
>>>One to two percent of our patients require more significant surgery for
>>>their bowel endometriosis. These patients may have large segments of
>>>bowel involved with deeper or multi-focal implants (several areas are
>>>affected along a portion of the bowel). A segmental bowel resection may
>>>be required to completely treat their disease. This means the diseased
>>>portion of the bowel is removed entirely, and the healthy ends are
>>>reconnected. These procedures are usually performed with the assistance
>>>of a general surgeon or colorectal surgeon, and virtually always
>>>laparoscopically.
>>>
>>>Even when endometriosis does not occur directly on the bowel, it can
>>>cause bowel symptoms. Inflammatory mediators can affect the bowel and
>>>contribute to them. Inflammatory mediators are released by tissues in
>>>response to inflammation or injury, and include prostaglandins, tumour
>>>necrosis factor (TNF), interleukins and cytokines. They create changes
>>>within the tissues and can cause new blood vessel growth, attract other
>>>things to the area such as white blood cells or contribute to scarring.
>>>Prostaglandins, which are released from the endometriosis implants and
>>>uterus during menses, can cause smooth muscle contractility. This not
>>>only affects the uterus, but can also cause increased contractility of
>>>the bowel. In these cases, diarrhoea and intestinal cramping can
>>>result. There are likely other mediators that are released that can
>>>also contribute to bowel symptoms.
>>>
>>>Occasionally, deep implants in adjacent structures such as the
>>>uterosacral ligaments or rectovaginal septum can also cause bowel
>>>symptoms. Painful bowel movements and occasionally rectal bleeding can
>>>result from endometriosis in these locations.
>>>
>>>The dreaded bowel prep
>>>
>>>In order to have these procedures at the time of surgery, most of our
>>>patients undergo a bowel prep. While this is not the most enjoyable way
>>>to spend the afternoon before surgery, it is worth enduring to get to
>>>the desired result of completely removing all the endometriosis. The
>>>prep is usually clear liquids and an agent to thoroughly clean out the
>>>bowel. If a prep were not performed, bowel surgery becomes extremely
>>>risky, because faecal matter could spill and put the patient at high
>>>risk for serious infection. If a prep is not done, and bowel surgery is
>>>needed, a second surgical procedure would be required at a later date.
>>>
>>>Editor’s Note: Please see the Coping Zone’s article about How to survive
>>>a bowel prep
>>>
>>>Other causes for bowel symptoms
>>>
>>>While endometriosis can cause or contribute to bowel symptoms, there are
>>>other important causes of bowel symptoms. Inflammatory Bowel Disease
>>>(IBD), or Crohn’s Disease and Ulcerative Colitis can be seen. As many
>>>as 8% of endometriosis patients with bowel symptoms may eventually be
>>>diagnosed with inflammatory bowel disease. IBD is usually characterized
>>>by abdominal pain, constipation, diarrhoea, or alternating bouts of
>>>constipation and diarrhoea as well as intestinal cramping. Patients
>>>with Crohn’s Disease may also have mouth ulcers, fatigue, anaemia and
>>>haemorrhoids. Rarely, patients can have abscesses or bowel obstruction.
>>>A colonoscopy is usually required to confirm the diagnosis. IBD is
>>>usually treated with medical therapy that aims to keep the disease in
>>>remission or to treat flare ups. Occasionally, surgery is required for
>>>complications such as bowel obstruction or abscesses.
>>>
>>>Women with symptoms similar to those of IBD but without any
>>>abnormalities on colonoscopy are often diagnosed with Irritable Bowel
>>>Syndrome (IBS). IBS is usually treated with dietary changes to avoid
>>>food triggers, and increasing dietary fibre. In some patients, stress
>>>can be a trigger. Avoiding stress or learning to deal more effectively
>>>with stress may help reduce the number of episodes. Exercise is
>>>beneficial for many patients. Medications are necessary for some
>>>patients. These may include anti-depressants, anti-spasmodics and other
>>>medications. In addition, medications that work better for patients
>>>with predominantly diarrhoea or constipation are also available and have
>>>been shown to be beneficial for some, but not all patients.
>>>
>>>Adhesions can also cause or contribute to bowel symptoms (as well as
>>>other symptoms associated with endometriosis). Often the bowel is stuck
>>>to other structures such as the ovaries, uterus or pelvic sidewall. This
>>>scarring can lead to pain during bowel movements or constipation or
>>>diarrhoea. Abdominal bloating is also associated with adhesive disease,
>>>and carefully treating the adhesions may help reduce many of these
>>>symptoms.
>>>
>>>What about the appendix?
>>>
>>>The appendix is another gastrointestinal organ that may contribute to
>>>bowel symptoms, or abdominal or pelvic pain. Some studies have
>>>demonstrated endometriosis in up to 20% of appendices. Although
>>>endometriosis may not be present, other conditions such as scarring or
>>>fibrosis may be found, as well as acute or chronic appendicitis, and
>>>even carcinoid tumours (a form of cancer) have been found in appendices
>>>that have been removed. We are more likely to recommend removal of the
>>>appendix if the patient has a history of right lower quadrant pain.
>>>However, if the appendix appears to have pathology at the time of
>>>surgery, it can usually be removed with minimal additional risk of
>>>complication and usually only adds a few minutes to the surgery. When
>>>required, appendectomy can almost always be performed laparoscopically.
>>>
>>>Will my symptoms improve?
>>>
>>>The incidence of bowel symptoms does improve significantly after
>>>excision surgery for endometriosis. Based on the post-operative
>>>follow-up questionnaires that our patients complete yearly, there is an
>>>80% reduction in most bowel symptoms. Of the more than 1000 patients in
>>>our database, only 3 to 7% continue to have more severe episodes of
>>>painful bowel movements, constipation or intestinal cramping. Diarrhoea,
>>>which was present in 63% of our endometriosis patients, is only
>>>significant in 13% following surgery.
>>>
>>>While most patients have improvement in their bowel symptoms following
>>>excision surgery for their endometriosis, some will have a persistence
>>>of these symptoms. This may be due to another underlying medical
>>>condition (IBD or IBS). In those patients in whom a work-up has not
>>>been performed, it may be indicated at this time. Blood tests that
>>>detect antibodies associated with IBD may be helpful. Often a
>>>colonoscopy or other studies are required.
>>>
>>>Many gynaecologists have little or no experience treating bowel
>>>endometriosis. They choose not to treat it. Sometimes they refer these
>>>patients to a general surgeon for later treatment. At the CEC, these
>>>procedures can almost always be performed laparoscopically. It is
>>>worthwhile to ask your doctor how he or she would deal with
>>>endometriosis if it were found on your bowel. If you are not satisfied
>>>with the answers, keep searching until you find the right person to work
>>>with.
>>>
>>>At Tue, 6 Apr 2004, Mandy wrote:
>>>>
>>>>Hi! I have a few questions for those of you who have had troubles with
>>>>your bowels and endo.
>>>>
>>>>I am going in to see my gyno again next week. But I am a little curious
>>>>if this sounds the same as what some others have faced. I had a lap
>>>>done last February, they lasered off endo, removed my appendix b/c of
>>>>adhesions, and removed a ligament that was pulling my uterus to the
>>>>right. My endo came back last August and I am taking cbcp's, which
>>>>don't seem to help. Now that you have some background info....here's
>>>>what's going on.
>>>>
>>>>Since December I have been having some horrible bowel troubles. My gyno
>>>>(w/out running any tests) said that I most likely have IBS. Well, I
>>>>went with it and cut out all the fatty foods, started drinking more
>>>>water, etc. Well, as I monitored all the food intake, I realized that
>>>>it's not IBS. A typical morning is: I eat dry cereal, no milk...a short
>>>>while later I have horrible abdominal pains, and have to run to the
>>>>bathroom. This progresses on during the day sometimes with meals,
>>>>sometimes not. Sometimes the attacks will be worse including horrible
>>>>hot flashes and nausea, to the point of almost passing out b/c of the
>>>>pain. The pain usually goes away within an hour. But for the rest of
>>>>the day I am exhausted. Does this sound like endo/adhesions on the
>>>>bowel? I would really like to hear some other people share their
>>>>endo/bowel stories.
>>>>
>>>>Thanks!
>>>>
>>>>--
>>>>Mandy
>>>>arowland@triad.rr.com
>>>>
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