|
Re: Bowel Endo
From: Chris (anonymous@obgyn.net)
Wed Apr 7 17:47:52 2004
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
>>>
|
|
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)