Skip to main content

Hi all,

This is a new thread as a continuation to another thread about problematic, chronic bowel obstructions. I am at a point where I get obstructions every 1-2 weeks that land me in the hospital for 2-4 days. Before this, I have had increasingly chronic pain that I now understand was from adhesions.  I've tried every diet change imaginable, including living on fluids  for weeks at a time, but the moment I start eating even a low residue diet, the obstructions come back and I end up back in hospital. I've seen a surgeon and have a second opinion this week about how to move forward. My question is:

Has anyone had adhesion surgery, and what were your outcomes/reasons for having it? Was it laparoscopic or open?

(and I know surgery can lead to more adhesions, but I can't really live like this)

Thanks -19 years with this pouch so I guess things are finally catching up with it  

Replies sorted oldest to newest

I was diverted from my j-pouch to a perm ileo.  During that lapro surgery she spent 3 hours lysing adhesions.  6 months later when she removed my j-pouch, during an open operation, she spent another 5 hours working on my adhesions.  Before she did all of this work on them they caused me daily pain.  I  needed 4 10/325 hydrocodone daily and now I only need 1-2  7.5/325's daily.  Believe me there is a huge difference in how I feel.  I don't think mine have come back. I was diverted 3 years ago. There was also pain caused by my j-pouch but I could feel little knots in my abdomen that were adhesions.

They wouldn't operate on me before there was a medical need.  I would think having obstructions all the time qualifies you for the surgery, but I'm not a medical professional.

 

TE Marie

I have had adhesion surgery laproscopic I was mainly having blockages no pain from adhesions,the doctor felt this was worth a try to resolve my problem that was about eighteen months ago. Did not help me at all they now feel I have dysmotility of the small bowel my jpouch is ok it’s above the pouch that is the problem they have me taking gastro graffin when a blockage happens it works some time but have had to go to emergency for help and several days in hospital last time I emptied so quick that I became serverly dehydrated they were worried I was going to damage my kidneys so not much I can do just go with it when I happens eight times this year I do watch very carefully what I eat soups and light type food hope this helps

susan 

 

c

 

 

S

Hi I am so sorry to hear how things are for you. My situation was very similar to yours except that it happened when I had an ileostomy.  I had continual blockages, severe pain and just kept ending up in hospital. I had open surgery as an emergency as it ended in a total blockage which didn't clear after 4 days (was in pretty bad shape by then!!). Good news is that having the adhesions dealt with improved things for me enormously.  I guess all cases are different but I would advise getting it sorted and not waiting until it's an emergency as this can obviously affect the outcome. Hope this helps, good luck 😁

Hermione

I found this a few years ago and it seemed a little too crazy , but now when I went back to the website I see there are a lot of links to legitimate studies published in legitimate medical journals seeming to indicate it's pretty successful; and it seems fairly low risk (especially compared to surgery to remove adhesions; which probably just results in more adhesions later). What do you all think? I'm planning to give it a go, and actually have already tentatively scheduled it for first week of November. Here's the link to the website, which contains links to a lot of the research, and a lot of the published research is co-authored by what seems to be a normal legitimate gastroenterologist in St. Louis (Dr. Leonard Weinstock) who actually has an arrangement where the specialized "clear passage" physical therapist who does the treatment does it in his medical office and he has a lot of his patients with obstruction/blockage issues do it (it's 20 hours of treatment, 4 hours per day for 5 days; they call it "abdominal adhesion removal physical therapy") :

 
<form action="https://www.facebook.com/ajax/ufi/modify.php" class="commentable_item collapsed_comments" data-ft="{" id="u_1u_9" method="post">
 
 
</form>
L

I have had the adhesion breaking therapy done by my chiropractor here in Paris (about 8-10 yrs ago)...they worked on me twice a week for a period of a few months...my adhesions were rather tenacious and had pretty much adhesed a loop of my bowel to my abdominal wall. I was having major blockages about 3xs/yr or more.

Although I do believe that they initially helped me, in the end, they literally pushed in too far/hard and caused a hernia...I had emergency surgery to fix it. 

Granted I tend to be more fragile that way and assume that that sort of complication is rare but if you have a tendency to herniate, beware and warn them.

Sharon

skn69

They require all medical records including all surgical reports and dont accept everyone, depending on the medical review.   I never have had any hernias.  It seems a lot lower risk than any surgery, as far as I can tell. Even the surgeons who have been handling my bowel obstructions think so and have written me a referral letter for it. 

L
Last edited by lcolche

I also had similar treatments by a trained Chiropractor and also by a similarly trained Physical Therapist. While those treatments helped some I didn't get much relief.  I was going in weekly and the treatments were not as long and close together as what is described in the ".... clearpassage...." link above. I'd had 5 abdominal surgeries.  The surgeon took care of them in the additional 2 surgeries I had for a total of 7 surgeries. 

I say it is worth a try as that was what I was doing before the surgeries. (They wouldn't operate on me just because of the pain and occasional partial obstruction.) 

Good luck!  Please let us know how it goes.

TE Marie

I have had adhesions surgically removed once before but more adhesions must have formed after the surgery because I then resumed having even more frequent small bowel obstructions beginning a few years after the surgery which removed adhesions. And I had one of the “god” surgeons of all time be who surgically removed my adhesions, the late Dr. Victor Fazio of the Cleveland Clinic— so I feel like probably no surgeon could do better. 

L
Last edited by lcolche

This particular treatment methodology may be different than what some chiropractors do. At least the clear passage people say it is.  And it is done for 4 hours per day ( 2 hours in the morning and 2 hour in in the afternoon) over a period of 5 consecutive days , total 20 hours over 5 consecutive days.   For just a few people, whose adhesions are such that more than usual is needed to remove them all, then it may be repeated for an additional 20 hours over an additional 5 days.  I spoke on the phone to a woman who had several obstructions per year for many years, who told me she is now in her 10th year after this treatment without having had any more obstructions AT ALL  during the 10 years .... of course she may just be lucky .  But the research studies which are specifically only about the clear passage method (which may be different than the chiropractors do) do seem to have pretty strong statistics that make it look a lot more successful than surgery to remove adhesions.  These studies appear valid, peer reviewed in major mainstream medical journals, authored by respected mainstream medical doctors associated with major respected hospitals,   so  my hopes are high.  Of course, we all know nothing is guaranteed . But if it saves me from just one obstruction, if I have just one less than I would have had  , it seems like it’s worth it.  We shall see.....

L
Last edited by lcolche

By the way, some people confuse this with “visceral manipulation therapy”, which is what some physical therapists or chiropractors do.  That is not the same as clear passage adhesion removal physical therapy.  Due to insurance coverage reasons, I have been able to have it confirmed that the clear passage therapy is much different than that. Which is why and how I can have it covered at an in network benefits rate while there are no in network providers anywhere that do it. 

L
Last edited by lcolche

Sounds good to me!  This is what the Chiropractor was doing, Active Release Technique.  Similar, maybe, but it wasn't covered by my insurance like what you are going to do.  I don't know what the PT treatment was called but it was similar to ART and was covered by insurance.

https://www.activespineandspor...ease-techniques-art/

I know what you mean about surgeons.  I had my last surgeries, which included the adhesion lysing work, at the Mayo Clinic by Dr. Kelly Mathis.

TE Marie

I am going to assume there are similarities but clear passage may be a bit more intense and specialized, requiring more training etc.  I think it is the only one that has been validated as successful specifically for recurring small bowel obstructions   by major peer reviewed studies published in major mainstream medical journals, which is why and how insurance can be forced to cover it.  It appears there are less than 10 people in the world  currently certified to do it.  There seem to be no complaints or bad outcomes (ie outcomes where harm was done) as far as I can find (and I have searched hard and long), so from my point of view, the worst that can happen is it wont help, but there appears to be a good chance it will help. Certainly seems worth doing before resorting to surgery. Now that I know about it, I cant imagine getting surgery without trying this first.  Surgery is no fun and at least for me, highly likely to be a revolving door resulting in new adhesions a few years after the surgery that removed the current adhesions. It is like there is no other choice, so.... 

L
Last edited by lcolche

Hello, I was having small blockages every time I ate for nearly 2 years. They blamed it on adhesions & did not want to operate . ( Cleveland clinic ) after 2 years I was nearly fully blocked , could not eat , horrible pain , they scheduled me in for surgery . What they found was my intestine was twisted, looped , he untwisted it , removed a few small adhesions & closed it up . It's was in the old ostomy area.  I've been doing great , the other night  felt pain & moving in same area, now the same symptoms . I think the bowl twisted again , only small blockages, eating my meals slowly, chewing it completely.... not doing anything about it now , I'll wait till it progresses and I have to do something . So, it may be twisted . 

Peti

@PETI,  had they taken any x-rays, ct scans, barium swallows, or any other type of studies like that which didn't show the twisted bowels?  Because all the studies like that they have ever done of me, don't show anything like that - during the "bowel obstruction" incidences OR afterwards when everything is okay ; nothing like a twisted bowel ever shows.  And I did get surgery several years ago which revealed I'm full of adhesions. At the time, they removed them, but of course normally later after that surgery there will just be more new adhesions forming afterwards, especially for someone who is known to form a lot of adhesions easily.  So that's why it seems like mine are from adhesions. But just like adhesions don't usually show on those studies, maybe twisted bowels don't show either?--I'm curious? - and another thought I have is, WHY would the bowels get twisted?- isn't it possible they might get twisted because of adhesions?  I know adhesions cause some of the organs to stick to different parts of itself or to abdominal walls or to other organs, which may end up causing them to twist?

L
Last edited by lcolche

Yes, I had scans and barium swallows, just showed a blockage, but not from what. They assumed adhesives. My bowl had twisted and then attached to the side wall. I do not know why my bowl moves around but it does at times, I feel it, it’s uncomfortable, sometimes painful, and then I feel different & things are different from then on. Always trouble in my old ostomy  site. They did not think bowl was twisted, even though scans showed a blockage they cannot tell exactly why till they cut in. My bowls are in a different place now than they were 2 months ago. Recently shifted, so pain & small blockages are in different area. Maybe more room in there since removing entire colon .....? 

 

Peti

I have had 3 scar adhesion surgeries because of chronic blockage issues.  They have always helped for 2 - 3 years.  Would still have a blockage or 2 in those years but would just go to emergency room and get pain meds, iv fluids, and reglin and blockages would always pass.  And sometimes I just ride them out at home.  Chronic pain and lots of vomiting but eventually will pass.  I had my last surgery April of 2017, last year.  I had a blockage in August of this year and one a few weeks later.  I was afraid I just grew scar tissue faster, but I haven't had another one since.  I am very interest in the Physical Therapy method.  My daughter is an Occupational Therapist and has mentioned that she has heard about it.  I am going to start studying it more and will continue to follow this thread.  My last blockage triggered my pouchitus to come back but have managed it with Vsl#3 double dose a day in my shake in the morning.  I have had my pouch for 16 years.

 

GrannyJ64

And as I mentioned before, it is being completely covered by my insurance, on an in network benefits rate even though it is out of network, because there is nobody in network who does it, I was able ( with a lot of persistence and  an appeal ) to satisfy them that the clear passage method is unique and uniquely verified as effective by multiple published research going back several years and up to the present in mainstream medical journals, so they have to cover it as if it were in network!  I did have to travel , because the NY location was booked up for many months in advance and I didnt want to wait— I flew from NJ to Saint Louis, Missouri to get it done asap just in case it might prevent another blockage that could happen in the meanwhile. I think my insurance may reimburse me for the travel and hotel costs because the treatment asap is considered “medically necessary” and therefore the travel was “necessary” and so travel costs for it should be covered. 

L
Last edited by lcolche

Good luck...I am no longer a candidate. Since about 10yrs ago my muscle wall is too fragile and it 'breaks through' when they push too hard...I am stuck with surgery. 

Right now I need to go in for a scan because the pain has come back at the old colostomy site and at the gallbladder site...not sure if or when but they will have to go back in...not thrilled.

If you can do it through manual manipulation then please, do...it is worth it.

Sharon

skn69

One more quick question for those of you who have had adhesion surgery...Did you have anything show up on scans? I had a CT enterography done--which I believe is the most detailed small bowel scan they can do, and it didn't show anything. They won't operate basically because they don't know where it is. Did your show on scans? Maybe not the adhesions, but narrowing in the bwowel or twists/loops etc.?  Thanks

duck11

Nothing shows up on imaging and I've had about every kind except for an MRI on my abdomen.  My doctors have taken my word and/or felt adhesions in my abdomen.  The surgeon that removed them didn't realize how extensive they were and spent hours taking care of them during 2 surgeries.  She spent 3 hours during the laproscopic surgery to divert from using my j-pouch to an ileo.  She spent 5 hours on them 6 months later during the open surgery when she removed my j-pouch. That surgery was 8 hours which means she only spent 3 hours on the removal part.  

TE Marie

So, I had 20 hours of the clear passage therapy divided over 5 days (2 hours each morning and 2 hours each afternoon).  I do think it did something because right after the first day, I was able to burp freely and easily - after decades of having problems often feeling like I have to burp but not being able to do so easily if at all, especially when an obstruction was coming on.  Also, when the therapist would touch somewhere on one place on my abdomen where she said there was an adhesion, I would feel something in a total different part of my torso in the place where and just like I feel when an obstruction is coming - so it seems sure that is an adhesion she was touching and the adhesion spanned from one place in my torso to another place where I would feel it.  Other than that, it's hard to be sure but I think I feel a subtle difference in being able to move around more freely, feeling lighter, my abdomen area feeling softer.  I went into it very skeptical but do think it's legitimate.  But only time will tell if it was effective (i.e., if I go a long time without an obstruction).  Since my insurance is paying for it and at an in-network rate, I have asked to do another 20 hours "just to be sure", which I will do beginning after Thanksgiving.

 

L

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×