Re: Bowel Endo
From: Mandy (anonymous@obgyn.net)
Tue Apr 6 19:11:47 2004
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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