Why Isn't There Adhesions Topic

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gemmy
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/16/2008 8:04 PM (GMT -7)   
This is one of the most ignored problems due to surgeons not believing that this actually causes pain. I have been in and out of the hospital 4 times since Nov 1st . 2007 with all the tests done., ct scans(6) , all the x-rays that can be done, nothing shows why I have the intense pain that I have to place me in the hospital and be on pain meds iv for 3 days and then I feel fine again, except this is happening every other month and my ins won't pay. $20,000.00 for 72 hrs is a horrible strain by its self.  Thursday June 19th I will go to Vegas for the pill cam. I am pretty scared since I have a twisted colon that it might get stuck. I have 3 GI Dr.s 1 locally, 1 at the Mayo Clinic in Scottsdale and 1 in Vegas. Has anyone else had this pill cam done?
 

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 6/16/2008 8:53 PM (GMT -7)   
adhesions seems to be my problem and the pill cam can't see them. no tests can except opening you up. keep asking questions--I have a lot of experience with this. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/16/2008 8:54 PM (GMT -7)   
Hi there gemmy,

We need an adhesions topic, so thanks for starting one. Unfortunately I don't have any insights to share with you, but I hope that somebody more experienced will be along soon to share experiences and advice with you.

Welcome to HW. I hope you'll find a lot of support here.

I.
Co-Moderator Crohn's Forum.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/16/2008 9:54 PM (GMT -7)   
Adhesions can even be congenital. My husband had sudden intense abdominal pain at age 48. When they got in there he had quite a few adhesions that were kinking his bowel. I hope they learn somehing when you have the capsule endoscopy. I had one done 4 years ago. Easiest of all the bowel specific tests I have had other than wearing the belt that holds all the gear. Quite a few people here have had one because it is the only way to actually get live pictures of the small bowel where the colonoscopy and endo scopes can't reach.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, Sjogren's ?
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/16/2008 10:29 PM (GMT -7)   
At the moment adhesions seem to be my main problem. I have had about 10 blockages since September 2007. One put me in the hospital for a couple of days, and the last one should have but the ER doctor was too inexperienced to know what he was dealing with. So I know how frustrating it can be. I also have had several CE and they really are a piece of cake compared to the other tests we have to have. And the up side of the chance that the capsule gets stuck is that if it does and they have to go in and get it out, it most likely will give you an answer and relief to what is going on. Not really the way you want to get those things accomplished, but I am a sliver lining kind of girl.

I don't really have an answer for you on the adhesion situation. I'm still frustrated myself. I hope you can get some answers soon.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 6/16/2008 10:30 PM (GMT -7)   
I just realized this was your first post...welcome!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 6/16/2008 11:11 PM (GMT -7)   
Welcome to the foru, Gemmy. While it does add some expense, if you really are concerned about the pill camera getting stuck and needing surgery to remove - and seriously DON'T want to know for sure if adhesions are causing the problem KNOWING that there is NO TEST to detect adhesions EXCEPT exploratory surgery (or surgery to remove a stuck pill camera, etc.) - then there is always the option of INSISTING that the Agile Patency Capsule be tried first.

The APC is the same size as the pill camera but it is just a dissolvable pill w/a small rod in it that is detectable by a small monitoring device OR by just a regular abdominal xray. In my case, I was the first in our area to try the APC first so they didn't go to the expense of the hand held monitoring device and 26 hours after swallowing the APC we did an abdominal xray. Unfortunately, the little darling was sitting there bold as brass in the left lower quadrant. *sigh* That meant no pill camera for me. But at least we now know where the obstruction is. A CT enteroscopy done a few weeks later verified a narrowing of the small intestine where the dissolvable APC (now gone, of course) had gotten stuck.

I've opted to continue trying to treat inflammation in the area medically even tho we know that a good share of the narrowing is due to scarring. But I'm doing this BECAUSE I'm not having severe symptoms. My symptoms are intermittent and mild. And I have an emergency plan in place w/my doctors should I obstruct as I insist I will ONLY agree to surgery at Mayo Clinic in Rochester instead of locally.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/17/2008 6:45 AM (GMT -7)   
I too have alot of adhesions from all my abdominal surgeries. I kept having obstructive episodes last year and thats what they attribute them to, adhesions. The only way to fix them is to have more surgery, but usually that just creates more adhesions. Double edged sword.

And welcome to healing well Gemmy.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/17/2008 6:49 AM (GMT -7)   
Adhesions are very real for a lot of those that have had surgery. They do cause pain, my doctor is very aware of this, he wants
to help, but feels it's like being stuck between a rock and a hard place. The only way to know what problems they are causing, is by
doing surgery, and therefore creating the likelihood of more adhesions....

I take pain meds to help with adhesion problems....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


gemmy
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/17/2008 11:29 AM (GMT -7)   
Thank You all for the warm welcome. I am going to take the pill cam on thursday. I did call the mayo clinic in Scottsdale and they ordered me the golytely to take the day before. On the instructions from the Dr who will be giving it to me it also says no smoking for 24 hrs. Now why would that make a difference in anything? It's bad enough not to have food for 24 hrs. Yikes! Ok just got off the phone with the Dr, that is a suggestion from the company who makes the pill cam but Dr said I could smoke just not as much as I normally would. Whew!
I have 3 GI Dr's I am working with and all 3 said this will show if I have crohns and or adhesions.
Have a great day everyone.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 6/17/2008 12:10 PM (GMT -7)   
If you have adhesions from prior surgery that are connecting the outside of the organs to each other or to the inner wall of you, there is no way to see them except surgically. docs can "guess" you have them if a colonscopy is difficult, but they don't show on xrays and I don't know how they would show inside your small intestine, but maybe I am not understanding what you mean.
I had 5 surgeries, and three of them have been to cut adhesions. they will keep coming back and I use pain meds when necessary. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Eddie K.
Regular Member


Date Joined May 2008
Total Posts : 27
   Posted 6/17/2008 12:50 PM (GMT -7)   
Interesting topic...Prior to my second resection, the docs thought my recurring obstructions were caused by scar tissue on the region of anastomosis and / or by adhesions somewhere else.  I know my then surgeon used a product (Seprafilm?) that is supposed to minimize the risk of adhesions but can't really attest to its efficacy (other than to say overall I've done well since except for a recent flare-up that was inflammatory in nature)...

songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 6/17/2008 2:11 PM (GMT -7)   
makes me wonder if my abdominal pain is caused by this---never heard it brought up before

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.


gemmy
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/17/2008 5:39 PM (GMT -7)   
yogaprof

I'm just repeating what the Dr's are telling me. Surgery might be the next step. I just hope they see something with this pill cam.

Dory
Regular Member


Date Joined May 2005
Total Posts : 120
   Posted 6/17/2008 7:30 PM (GMT -7)   
Hi there, it's been a long time since I've posted anything here, but I'm always here reading and learning.  I thought on this one i could share my experience.  Before my last surgery the Dr. ordered a Galium Scan. ( I had already gone through the usual colonoscopy and x-rays) And the Dr. wasn't sure if it was inflamation or scarring.   Only inflamation shows up on this type of scan.  When nothing showed up he knew that what I had was adhesions.  It is sort of like a CT or MRI machine that you go in.  Not a big deal at all. 

gemmy
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/21/2008 7:55 PM (GMT -7)   
I had the pill cam done easy to take and results said I do not have crohns. Happy about that. And don't know where or what test will be next but I did find out that the pill cam does show adheasions, only if you have had intestine surgery before.

I am so broke now after all these tests, and hospital stays I am sure my local Dr is going to want to do exploritory surgery. Adding more stress.

The Dr in Vegas thinks it is adhesions since everytime I go into the hospital and am on pain meds and in a few days I am fine again. He said stress can add to this happening and thats why in a few short days I am good to go.

I can't go into the entire stress of all of it right now ,but I can tell you its not everyday stress and its a long long story that I have been trying to get people to see on my son. Before this happened I was paying lawyers to get my son help and in short the last Dr said he was just fine.( 4 of 5 said he needed to be hospialized) He didn't listen or care what we told what was happening and my son was moving to a new place and is now facing up to 15-20 yrs in prison. God I wish I knew how to write a book. For you that are parents watch out because even if you are found not guilty of causing a death and a car accident you can and will go to prison. My son had just turned 18 - 3 days before the accident and he can't get past it. Frankly I can't either, I have to go put flowers on his friends grave, not even the parents go there. It tears me up inside. She was a twin, both were in the car and there mother and father had kicked them out at the age of 13. They use to come to my home. I have tried to explain this to Dr's here but they say nothing. I feel hopeless. This has been since 1996, I can't quit fighting the law that say's they are here to protect us. Even the arressting officer called a few years later to see how Tony was and was sorry for what happned to my son and is he ok? Do 5 yrs in prison and think you get the son that left you on this trail of tragic events. It's been pure hell. He has never the same.
Sorry for this but had to vent.

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 6/23/2008 7:31 AM (GMT -7)   
hey Gemmy, I was out of town and just got back, so I am a bit late with this, but I am so sorry for what you are through. it sounds like a horrible ordeal, and certainly it could affect your health. Have you read anything about the idea that your gut is your "second brain"? I would never say that stress causes us to be sick, but gut pain and problems are very much worsened by stress. take care of yourself as best you can and keep asking questions if we can be of any help. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 6/23/2008 11:09 AM (GMT -7)   
Geeeeez prof,, I know some peeps that for sure their gut is their secod brain, only, its the very last part of their gut.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 6/23/2008 2:35 PM (GMT -7)   
ok, I am totally cracking up! :)
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

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