Chronic Intestinal Adhesions - can they be prevented??

[ShakinThingzUp]

In 2002, my doctors cut the bands of intestinal adhesions which had twisted my bowels and kidney and adhered them together.

The pains, which began as a cramping type pain in the pelvic area and grew worse and worse until I could not eat without feeling like chains were being pulled through me............... those pains as they began in 2002 have started again.  Right now its just the intermittent cramping pains in my pelvic area.  But, I recognize the symptoms.

I've read online a little about chronic intestinal adhesions - where there was no record of previous surgeries (I'd had none when my adhesions were discovered in 2002).  The websites say the cause of congenital adhesions is unknown.  However, I can't find much on them....... Can I prevent them?  Can I do something to keep these from continuing to grow after lapriscopy to sever them???  I don't want to go through this every 5-6 years!!

Can anyone offer more information on the subject?

Thank you
Amy

[jennnelson]

i have had several abdominal surgeries and adhesion removal as well...I agree with you about the doctors think you're making the whole thing up as well...but a year or two ago I did a 23andme DNA test and found through uploading my raw DNA to a Promethease report (which gives you kind of a report of what you are more likely to have conditions/diseases etc)  - I found on one of my markers (a more rare one - was related to collagen issues) - and when looking into it further it can cause issues with adhesion's etc so it does seem that genetics plays a role in this...there were a few different conditions that I saw that made one more likely to have issues with adhessions..."knobloch syndrome" was one of them and El Danos was another but interesting stuff...wish all the doctors were interested in DNA...it would benefit so many patients. Some are more accepting of it than others but it definitely the way of the future.  The "ONE Size fits all" attitude doesn't help the situation.  The unfortunate thing I have also discovered that collagen is a "base membrane" affecting most of your body systems - brain, heart, eyes, blood vessels,kidneys, nervous system, digestive tract, muscles, teeth, bones, etc.  I think eventually they'll discover that many MS, Lupus, type disorders affecting multiple body systems may be linked to something like a collagen dysfunction.  you can check it our at www.23andme.com or snpedia.com or (org)  interesting stuff - best of luck...18 surgeries and counting...at age 49

[romesmom]

why a low residue diet?  I've had issues for 20 years and my blocked tubes caused me to get laparoscopy 15 years ago...  I do indeed have those Fitzu adhesions.  I don't even think he did anything about it.  It just keeps getting worse.  vodka helps..and ambien is only way to get to sleep.  I am worse when my weight goes up even a few pounds.  I can't live without my psyllium husk powder....so wondering if that is because it helps remove the residue?  why low residue? it helps me to behave better if I understand why.
thanks much. romesmom

[ShakinThingzUp]

Thanks again for your help.

I have done a lot of research on doctors in my area and found an ob/gyn who also specializes in urology and reconstructive surgeries of the abdomen/pelvic region.  I think I may have found a good doc, and I'm going to make an appt with her and take it from there so far as my gut.  I'm hoping she will help me decide how to deal with my fibroid and coincide any surgery with treatment of my adhesions.  I'm also hoping she's up on the latest practices on surgeries to aid in any "stalling" of my adhesions growing back, and what I can do to take care of myself when all this is over.

As for my neuro issues...  I made an appt. with my family doctor (who sent me to the neuro), and I'm going to explain that I am not getting the treatment I want and need a new doctor and go from there.... asking her (family doc) how to proceed.  At one point, I was sent to a physiologist.  I don't mind if he manages my treatment from here, because he 1-Returns calls, 2-Makes appointments as soon as possible and 3-Genuinely seems to want to help me however he can.  He's also very interested in finding out whats wron and making referrals as necessary.  So, I may take that route.  But, I would really like to know what is causing this pain.  My gut, as hard as it is to deal with the pain - at least I know WHAT it is....... based on past experiences.  My neuro-type problems (and/or fibro) remain a mystery and that's the hardest part to bear.... the not knowing.

Thanks again for all your help.  Each time I read your posts on here I come away feeling like I've talked to someone who "gets it."

God Bless!
Amy

[CalGal]

If the pain isn't being caused by a bulging disk in the spine, then it's necessary to look along the 'run' of the nerve to see if compression is happening somewhere along the line that could cause the miserable nerve problems. There are a lot of people who have sciatic pain and it could be that it's not being caused at the spine but along it's length. A sciatic nerve can be 'worked' within the canal between the femural head and the ischial tuberosity of the hip, between the muscles of the hamstrings at it's bifurcation, under the back of the knee, and down the leg (front and back) at the different branches, for example. It's not a one-track deal.

Anywhere the connective tissue restricts the motion of the nerve or entraps it, that point can signal 'HELP ME."

Same thing with nerves that come out of the lumbar area. People can have pain that starts at the front 'point' of the him (the ASIS) and it can continue down the whole side of the leg to the knee. Many docs try to attack it at the spine which may or may not work. But those structures can also be 'attacked' along the side of the leg in many cases.

The tight connective tissue is not adhesions, per se, but they are constricting nerves, and those nerves can be very 'vocal' about it.

In my opinion, yes, you should be tracking those leg pains separately from the gut issues. It's worth the try.

[Nikki333]

So sorry to hear of your troubles.  I too have adhesions and surgery for them since 1996.  I also had endo.  Sometimes life can be a big pain.  Ha, Ha!  Life is better since surgical menopause.  But the adhesions just keep on giving.  I agree with everything Jaybay has said.  Live as comfortably as possible then have another surgery, repeat.  

[ShakinThingzUp]

Since my last post, I've found the International Adhesion Society page and some other resources and read up some more...

One thing I'm not clear on (and don't know if I'll ever get a straight answer from a doctor either judging by their actions so far) is this....

I have a lot of health issues that are not in my gut.  Nerve pain being the most prominent.  An EMG test on my left leg convinced doctors I wasn't making it up, even though all they see on my lumbar MRI's is a "minor bulging disk" at L4 - the EMG shows some damage....  The neuro surgeon suggested there could be damage to my sciatic nerve in the hip and referred me to the neurologist (who isn't returning calls).  So, what I'm wondering is this.... Could I have adhesions in my leg causing this pain too??  Or should I be tackling those issues completely separate from my adhesions?

I have shock-type nerve pain in both legs and one arm which come and go and in addition constant pain which is different (more like fibromyalgia).  But, its the electric shock pain that is so strong that is scaring me.

And, since its such a mystery to doctors, I'm wondering if its related to adhesions also, since I've seen hints here and there in articles that adhesions are in other places besides our guts.   ???  

God Bless!
Amy

[Mande121712]

Since my adhesion issues I have had similar issues and ended up diagnosed with meralgia paraestica they don't know if it was from the last shave down or the new growth and unfortunately after injections in spine and leg that electric taser buring feeling never stops it may be dull some days but others I cant even walk I wish someone whould do more reasearch to finding a helpful resource for people like us now im to the point I cant eat without feeling like im in labor then having to run to restroom and my food is passing straight threw completely undigested yet drs cant find a answer and even with proof tell me it's impossible for food to pass that way amd its like uuummm ok it ***** you cant even dare eat in public or even have a social life

[CalGal]

You may think I'm nuts, but if you're dealing with adhesions, please check out visceral manipulation. It works, and I'm speaking from experience. It may not be able to handle all adhesions (all locations) but it does an incredible job on the ones that can be 'reached.' You need a skilled (very) practitioner, but you'll be shocked by the results. Try the iahp.com website and check for people in your area.

[Jaybay]

Yes, I've dealt with adhesions for over 10 years.  They're the gift that keeps on giving, huh?  The first round started from an infected gallbladder.  Next was endometriosis and appendicitis.  Next was endomentriosis.  Then hysterectomy.  Adhesions from that adventure cost me a couple feet of large intestine.  Since then, it's been surgery pretty much every year for obstructions.  

The most frustrating thing about adhesions (for me anyway) is tht they don't show up on tests.  You can barf your brains out in front of a doctor and he'll insist there is nothing wrong with you.  It must be all in your head, so you get referred to a shrink.

In answer to your question, no, there is nothing that will prevent adhesion formation.  My surgeon won't use seprafilm any longer because he found it actually made his patients worse.  

All you can do is treat the symptoms and put off surgery for as long as possible.  I have a great pain doc who prescribes pain and nausea meds.  A low residue diet is essential - if you think you're ever going to eat normally again, don't.  You'll just be continually disappointed.  Get used to making smoothies and buy a juicer.  Gotta keep up good nutrition any way you can, and liquids stay down a whole lot better.  If you can find one, a pain psychologist can also be helpful in teaching you ways to cope with the pain when no medication will help.  You'll be surprised at how much pain a body can take and still function.  Not that I'm happy about having that knowledge at all.

Wish I could offer you more hope, but right now there just isn't any treatment out there to prevent adhesions and once you've got them surgery is the only way to untwist them if your bowels get obstructed.  Some people just grow more scar tissue than others, and we've been elected.  Lucky us, huh?  :-)

[sadie1246]

I don't think there are that good of doctors anywhere anymore.  One says one thing another says another.  you may have irritable bowel symptoms.  i just had a mrcp and an mri today and it was murder.  I had to drink this **** on an emty stomach which made me wretch and then they stuck an iv in my arm for more mris.  in the meatime my stomach is still killing me.  a pain going down my throat and chest when i swallow.  it feels raw and hurts like hell when i swallow.  oh well, tomorrow i have off from doctors maybe i can relax without pain for once.  good luck to you

[ShakinThingzUp]

Thank you both for your comments.

CalGal - I will check out the site to see what I can find... because the doctors here are clueless!!!

Sadie - I am so sorry that you are going through this too...  I was in the ER on Thursday because the pain & other symptoms had become too much to bear.  They did exrays and an ultrasound --- they found a fibroid on my uterus & decided that was causing all my pain and sent me home.

I agree that it was causing some pain & likely made everything worse.

But its certainly not the cause of my not desiring to eat suddenly.  Everything makes me sick.  Everything tastes funny & I'm nauseas all the time.  The "gas" pain and diarrhea is not caused by a fibroid....

Right now, I'm going 3 days with no bowel movements and then it "cuts loose" and diarrhea abounds for a full day while I'm emptied of what my body can push through.  

I'm dizzy, overcome with nausea and generally feel bad all over.  My blood work came back ok, so I guess its not entering my blood stream.  But, I feel like its happening again.  If so, I wont be able to eat soon I'm sure.

So...... I'm going to spend some time tonight trying to find a doctor who is more knowledgable in this.  I'm on the Outer Banks of NC where doctors are hard to find....... if anyone knows of a good GI doctor in the Norfolk area please let me know.

Thanks & God Bless!
Amy

[CalGal]

Shakin, there are some 'films' that can be used during surgery to help retard adhesion formation, but they unfortunately don't help everyone and may not be able to be used in every case - but if you have to have further procedures you may want to talk to your doc about their use.

You may also want to consider looking into visceral manipulation. In many cases it can help quite a bit in releasing some of the restrictions caused by the adhesions, depending on where the specific adhesions are. It's very worth a try, but you need to find someone who is specifically trained in the visceral techniques. You could check at iahp.com to see if there is someone - well trained - in your area. It's a technique that came out of Europe and is slowly becoming 'more used' in the U.S.

[sadie1246]

what do you know someone has the same as me.  the pain sometimes is terrible in 2002, i had surgery untieing my intestines which were wrapped around everything, i am that way again it affects all of my insides.  i now have a gastric ulcer which gave me pancreatitis.  sometimes, i don't want to eat even when i am starved because i know what will happen when i do.  stress does it also it cramps them worse.  i am damned if i do and damned if i don't.  good luck if you find out something let me know would you.