International Adhesions Society

 

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Adhesions and Chronic Pelvic Pain (CPP)

CASE #1: ADHESIONS FROM APPENDECTOMY: NEW CITY, NEW DOCTOR, NEW DIET

Date: 97-09-22

I am a 28 year old suffering from adhesions. I am looking for any information that anyone can give me regarding adhesions. I am scheduled to go back to my doctor on Wednesday to discuss having a second surgery. I would like to try to avoid this as long as possible because I know the more surgery I have the more adhesions I am likely to get.

If you can enlighten me with any information I would be thrilled because I am having a hard time finding any info on adhesions!

Three days later, this lady provided me with some more information about her situation:

Date: 97-09-25 13:11:11 EDT

Three years ago I had an appendectomy, my last surgery for adhesions was from that surgery. The adhesions had wrapped around my small intestine causing a small bowel obstruction. The doctor that did the surgery did exploratory surgery because they weren't sure what was causing the obstruction. Now, I have adhesions on my colon from that surgery which was April 15, 1997.

I went to my doctor yesterday and he said he wants to wait as long as possible to do any more surgery. I took him copies of everything that I had found on the Internet, including your web page. He looked through it but didn't really seem to be interested in it!….I am now seeing a gastroenterologist. If there is any more information that you can give me I would really appreciate it.

I received this upbeat update six months later:

Date: 98-04-02

I have been seeing a doctor here in [NEW CITY] and he was very familiar with adhesions. He changed my medication and my diet and I am feeling a lot better! Let me know if you want to know more information on that.

Thanks!

With further enlightenment:

Date: 98-04-06 00:45:12 EDT

Dr. Wiseman: Hi! My doctor here has me on Paxil, 10 mg. [paroxetine - an antidepressant drug] I take 1 at bedtime. He said I could continue taking the Vicodin [Hydrocodone - narcotic analgesic plus acetaminophen - analgesic/antipyretic] as needed but that he wanted me to try to get off of it because it is constipating. I have not had to take it since I have been on the Paxil.

He also has me on a low residue diet, which has seemed to help the most. My doctors in [OLD CITY] had me on a high fiber diet and also had me taking a stool softener and 1 teaspoon of Per Diem at bedtime. The doctor here said that all the fiber was probably causing a lot of my pain because when it gets in the intestines it expands and when you have adhesions the intestines don't have anywhere to expand. It makes a lot of sense and I know that I definitely feel a lot better. My husband says that I am a totally different person. I know that I am able to get out a do more than I used to, or at least I feel like getting out a doing more.

Well, that is all that they have me doing different. It sure beats being on pain
medication and possibly having surgery, which I still my have to do down the line but I feel good for now. Thank you so much for all your help! It also helps to know that there are other people out there with the same problem and that I'm not the only one.

Thanks

CASE #2: "SPONTANEOUS" ADHESIONS

This makes interesting reading. The first part turns out to be quite typical.

Date: 98-02-25

I am a medical professional who has been diagnosed with intestinal adhesions. I have had one episode of obstruction so far and otherwise simply live with a feeling of "tightness" and discomfort under the ribcage. I have had NO previous surgery and so these suspected "adhesions" are spontaneous, possible due to stress, shallow breathing etc. Is there any information available on allopathic medical treatments, or alternative medical remedies for dealing with this problem in a non-invasive way? My surgeon of course want to do major surgery and I am not ready for that. Any help would be greatly appreciated.

A little over a month later I received this update:

Date: 98-04-02

Surgeon initially thought I had "adhesions" and wanted to do a major surgery with bowel resection etc. My symptoms came on secondary to stress which should be differentiated from any other people who have actual documented adhesions secondary to invasive surgery. In any case, "adhesions" or not, being that I am a therapist by trade I took matters into my own hands. I started doing major league stretching exercises to my abdomen and ribs. I
stretched on the floor, bent over backwards, and leaned sideways over chairs to stretch my ribs. Incessantly, in the shower, and every day. I also had a couple of chiropractic sessions.

It is now about 5 months later and I am 95% better. I may had had "adhesions" but if I did, it was secondary to muscle tightness due to stress and faulty shallow, breathing and they got better. In any case, I will not need any surgery and may never even had adhesions. Moral of the story, if you have THESE kind of spontaneous problems. i.e. not surgery related. then don't be talked into surgery so fast. I recommend stretching, yoga and breathing for starters. Maybe my experience will be useful to someone out there and save them a surgery. PS I went to 3 doctors. The surgeon said I had adhesions, one gastroenterologist said I was normal, and the other thought I may have had some kind of a hernia. welcome to modern medicine. Second moral of the story. the patient usually knows what's going on with his own body better than the doctors. Follow your gut (sorry, couldn't resist).

A sense of humor has obviously kept this lady going. Sometimes when there is no other explanation, adhesions are blamed. We will never know the answer, but the stretching exercises seemed to have helped greatly and to have averted major surgery. This was a nice ending.

CASE #3: 28 YEARS and STILL GOING!

Three emails in which a number of themes appear - loneliness, information, support. Here's a lady who has 'stuck' with her adhesions and is still fighting. She is an inspiration.

Date: 97-12-17

In 1970 I had a laparotomy done and about 5 days afterwards developed pain again. which I was told was the result of adhesions. I have suffered with this pain for 27 years; and finally found a doctor who would listen to me.

I had a laparoscopy done by him on August 1, 1997 with an adhesiolysis being done. I had adhesions the full length (7 inches) of the laparotomy incision which was complicated by a layer of fat 4 inches across. The surgeon used the Kleppinger scissors to free the adhesions from the omentum. For 10 days I felt like a new person!! But then I started developing pain again and now he won't even see me.

I don't really know what the purpose is regarding e-mailing this address; but since I know deep in my heart that I am definitely suffering again from adhesions, I decided to follow your suggestion in your article Synechion.

I wish someone had told me that a product such as [the ones being developed] could have spared me all the pain I'm experiencing. Unfortunately the patient is at the mercy of the surgeon.

 

Date: 98-01-13

I've been suffering chronic pain for going on 28 years now. I have been to the [Famous Hospital] five times during that time period. always feeling as though I had not been heard. On August 1,1997 I underwent a laparoscopy at which time my gynecological surgeon found that I did indeed have adhesions. adhesions from a laparotomy I had in February of 1970. The adhesions were the full 7" length of the incision and 2" each side of the incision. for a total of 4".

[I was told that] there are a lot of doctors out there who do not believe that adhesions can cause a person a lot of pain. I have also read on the Internet about this; and after almost 28 years of constant pain and my inability to get the help I needed, I have to believe this.

In searching the Internet, I came across personal sagas about other people not getting help for their chronic pain caused by adhesions. As I read through their cries for help, I too realized that many were wishing that there would be a support group for them to vent their frustrations with the medical community, to be validated by others with the same problem, and to hopefully get information that would give them the help they need to be freed from chronic pain caused by adhesions.

The Internet has helped me to understand postsurgical abdominal adhesions and how difficult it is to get help for people who have this medical problem. There is a great need out there for a product such as Sepragel for those patients who undergo a laparoscopy. The Internet says that there are millions of people who develop adhesions after surgery. There is also a great need for a support group of some kind. Good luck in your efforts to get some kind of support group set up! Thank you very much for the information that you e-mailed me. It was unexpected. but it was very helpful!

 

Date: 98-04-03

[There is an] emotional side of my saga in trying to find a doctor who would believe that I was suffering. and NOT all the doctors who DID NOT believe me and attributed my complaints of pain to be "all in my head," or caused by fibromyalgia, irritable bowel syndrome, allergies, and the list goes on and on. A lot of relationships have also been ruined simply because I was unable to be there because of the extreme pain that I have been experiencing. Adhesions DO CAUSE PAIN!! It has been a 28 year ordeal for me and it is still not over. My faith in doctors has been shattered. Sincerely

CASE #4: JAZZERCISE, DESPERATE but EDUCATED!

Again, some form of exercise has helped this desperate but educated and dignified correspondent.

Date: 98-02-10

I had extensive surgery in July of 1996 during which 'over 100' adhesions were removed. These adhesions were the apparent result of a c-section in l988 and a tubal ligation in 1994.

In 1996, I underwent a hysterectomy, which I was told would increase the chances that the bladder repairs they were making would be successful. At this time, my bowel was nicked. Subsequent repairs were made in this area as well. To-Date, I have noticed that I am in a downhill state. I am to the point where I suffer from chronic heartburn. I feel as though I am 'blown up like a balloon' all the time, which also seems to impede my ability to draw a deep breath. I feel as though I am pregnant for a huge baby--all day and all night. Neither my bowel nor my bladder function normally or well. I have had it!! Is
there any help, any hope. I tremble at the thought of more surgery. It seems that every time a member of the medical profession gets their hands on me, I come away with less and less.

Please let me know something. I need to make an appointment soon with someone, but whom?

 

Date: 98-04-03

Dear David, If you use this letter [please make some corrections]. I do not wish to appear uneducated as well as desperate. Desperate I can live with. A side note: In the past ten days, I have attended 6 Jazzercise classes and this appears to have helped with the water retention problem. Also, I do not feel so filled with gas. Regards

CASE#5: DOCTOR WILLING to TRY ADHESION BARRIERS BUT NEEDS MORE INFO

There are many doctors who accept the idea that adhesions can cause problems and are willing to try adhesion barriers. However,
they need more information, as this patient relates:

Date: 97-07-27

First of all thanks so much for the quick reply. I am a patient. I have been searching for a surgeon that is willing to use a barrier. I live in [REMOTE PLACE] and there is not ONE here that have used any type of barriers except Gore-Tex (which I do not wish to use.). Most say they are willing to try if they obtain the information; I really would like to have my surgery by someone that is very familiar with the procedure.

The details of my specific medical problem is pretty straight forward. I had a surgery in 1989 that resulted in abdominal adhesions, in 1990 I had another surgery to remove those adhesions. I was pain free for about 2 - 2 1/2 years, at that time my adhesions grew back. At this time it is affecting my intestines, they are "tacked" to the lower left abdominal wall and it is getting worse. I have been told that the only way to help this is surgery and at this point I am more than ready! My major hurdle now is that I want to do it right and take as many preventative measures that I can this time. I know that there are no guarantees, but the barriers sure do sound like a better option than nothing at all especially since this will be the third time.

...any information you can offer will be greatly appreciated. Thanks Again

CASE #6: RELIEF FROM LAPAROSCOPY including ADHESIOLYSIS

This email correspondent describes a typical case of multiple surgeries and her dreadful anticipation of how long the pain will last.

Date: 97-11-25

I am a 25 year old that has had a total of 5 different abdominal surgeries. I had a hernia repair, 3 laparoscopies, and 1 major uterus suspension. My last surgery was in March 1997. It is now November and I have been exercising for 3 months on a regular basis. During the past 3 weeks I have had increased abdominal pain. Different types of pain and in different areas. I have a continuous pain that stays on my right side. Could all this be due to scar tissue,? Would scar tissue just start to develop pain and continue with the pain nonstop? Please write me back if you think that you may have some answers. Sincerely

My reply was as follows:

Subj: Re: adhesions
Date: 97-11-25 08:29:34 EST
From: Synechion

Thank you for your email. Let me first emphasize that I am not a medical doctor and cannot give you specific medical advice. It is entirely possible that your pain is due to adhesions (scar tissue). However I must point out that there are many other causes of pain. I would strongly advise you to visit your doctor who will examine you and try to find the cause of your pain…..
Good luck, Sincerely, David Wiseman

Four months later, I received the following good news. Note that the uterus suspension seemed to have been too tight. This may have developed after surgery.

Date: 98-04-03

DW Since I have wrote you, I have had another laparoscopy. During the laparoscopy the Dr. found the my internal organs were covered with adhesions. I had my surgery in December last year. The Dr. said that the adhesions had pulled my lower intestines up under my ribs and that it was also smothering my right ovary. The pain that I was having on my right side was due to the uterus suspension with the round ligament. The round ligament
was pulled so tight that there was no giving therefore giving me such pain. Since the surgery I feel great. The Dr. went in and took out the right suture and left the left side still suspended. He clipped and burned away the adhesions and I feel very good.

I do have a history of endometriosis, but right now it is in remission.

Endometriosis is the reason I have had so many surgeries. I am now going off the medication that I have been on for two years. I have been taking Modicon 21 [oral contraceptive] so that I do not have any periods. So far I have been doing great. The reason why I am going to stop taking it is because my husband and I may try to get pregnant in July - Aug. It is scary though because I know the risks of endometriosis coming back, fortunately they are making surgeries easier nowadays. Thank you

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