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Wow it’s really interesting that you have endometriosis on top of everything else and it is interesting to know how the pain is different. My hunch is that I don’t have it but I’ll still look into it just in case. I wonder if there is any correlation between endometriosis and abdominal adhesions. That is a lot for one person to deal with! I’m sorry to hear you have it but it’s great that it’s under control. One less thing for you to worry about at least. 

Well I met with the surgeon today and she didn’t have much to add. She basically said she doesn’t know why I’m having pain, she doesn’t know why it’s happening, doesn’t know what to do about it, doesn’t recommend surgery since she doesn’t know what’s causing it. My gastroenterologist said he thinks the pain I’ve been having is from adhesions causing my intestine to twist or bend and cause an obstruction but the surgeon thinks that is unlikely because she said they would have seen the obstruction when they did the CT scan. So now I’m even more confused that I was before because I’m being told that my symptoms are a complete mystery. Feeling frustrated. 


How frustrating-I'm sorry you didn't get any answers. Can you get a second opinion with another surgeon? I had one surgeon tell me what you heard, but the other one said adhesions cause all of this and they aren't usually able to catch them on scans. Have the scans caught anything related, like dilated bowel loops or anything? That is what my surgeon saw on mine despite not seeing a clear obstruction point--they said this only happens if something is blocked. 

All of the scans I’ve had have been normal, no signs of anything abnormal whatsoever. My next step is to go back to my gastroenterologist and basically ask: now what?? I feel like I’m just going to have to live with this and I don’t think there’s mugh I can do about it since no one can say for sure what is going on and they can’t treat an unknown issue. Ugh. 


Yes, when I’m in pain it usually happens after eating & I either have no BMs or only watery ones during the painful episode which usually lasts about 5 hours. I sometimes have bloating & I vomited one of the times mostly because I was drinking a lot of water thinking it would help things pass through but I just ended up getting bloated & vomiting. I tend to feel bloated after eating even a smaller sized meal, I often have to push a lot to have a BM. It seems like I’m having some sort of obstruction but I don’t know why nothing shows up on scans. Maybe it’s something different, I just wish someone could tell me what’s wrong & what to do about it. 

Hello!  I am new here.  I had a total colectomy with J-pouch in 2008 and I have been dealing with abdominal pain and nausea for the last 2 years and like you all of my test are coming back pretty much normal.  I have had some liver test that have been slightly abnormal and they saw mild dilation on my MRI but my surgeon and GI doctors are all saying nothing that should be causing the pain I am having.  They explored endo, I even had a complete hysterectomy to try and alleviate the pain but even after that I am still having the same pain as before.  I had a capsule study done in 2017 and they said I had a portion of my small bowel that was slow moving and told me to try laxatives, but that didn't provide any relief either.  I am seeing a new GI doctor and they are repeating the capsule study this Monday to see if there was something missed or something that has changed since the last one.  I'm hoping it will provide some answers.  As bad as I feel that there are others going through the same pain as I am it is nice to know that I'm not crazy.  Thank you for sharing your stories.

I saw a new gastroenterologist yesterday who also said he thinks my pain is caused by adhesions. He thinks I’m either experiencing partial obstructions that resolve on their own or that I’m just not able to go to the bathroom while in pain because it’s too painful to push with my abdomen & try to go when I’m in pain. He doesn’t know what causes the episodes or how to avoid them. Basically the adhesions pull on whatever they’re attached too & that causes pain but there’s no way of knowing exactly what triggers this. He said a low fiber diet  may help but there are no guarantees there. He said surgery to remove adhesions would likely make things worse and since this is only happening once every few months he wouldn’t recommend going down that road. He said unfortunately there’s not much we can do but treat the symptoms when these painful episodes occur. This has been a crazy journey trying to figure all of this out over the last 6 months or so! I’m starting to feel a little more okay with this new reality. As long as it’s not happening all the time and I can get through the episodes with some pain medication I can live with this. 

If adhesions are what cause a lot of the pain, do they also cause stool not being able to pass through?  Or are the painful episodes experienced from adhesions and the ones from partial obstructions completely unrelated?  I’m guessing unrelated...

I have been on a low fiber diet for a long while now. It does seem that it has caused my episodes to be less frequent?!  They still just pop up randomly.  But I’m thankful for less.

AmberQ, what is a capsule study? I thought I’d had everything, but I’m not sure what that is. 🤨

Adhesions themselves are painless, but they can lead to pain in two ways. Since they can’t stretch they can pull on the gut when it moves, and that can hurt. They can also cause the gut to kink or twist a bit, which can narrow the opening. If food or liquid get caught behind the narrowed opening the trapped material will increase the pressure inside the gut, which hurts like heck.

Adhesions are very, very common after abdominal surgery (they occur 93% of the time). Most of them don’t cause any trouble at all. 

A capsule study is where you swallow a pill that is a camera and it takes thousands of pictures as it goes through your digestive track.  The last time I did it the results showed that there was dilation midway through my small intestine, right after where it was slow moving but the doctor I had never did anything to look into what was causing it, just prescribed mild laxatives.  When I had my hysterectomy my surgeon said they didn't see many adhesion's so they didn't believe the pain was coming from that.  Do any of you have any other symptoms besides the abdominal pain?  I get blood in my stool almost daily (sometimes I go a few days without) that usually comes along with the pain.


That capsule test is interesting.  Sorry for all the problems you are having.  😕.   I’m not sure if I have adhesions or not, not really sure if anyone on here knows for sure...when I have had my most painful episodes I’m fairly certain it’s from an obstruction.  Sometimes if it goes to long I vomit. Then I’m sore for days afterwards. As far as bleeding, I agree that sounds like it could be something else.  Like Scott said, maybe from straining, or maybe hemorrhoids?  Good Luck with everything.

Scott,  Thank you for clarifying more about what adhesions can do/cause. 

Hi all,

A little update. I've been on a super duper strict low residue diet--and quite often puree my food. It's gross ad time consuming but I do feel like the episodes have been less often and less intense the past month so maybe it does help. I've even resorted to eating my sons baby food! Anyway, just thought I'd pass it along incase you want to try it. I've had 2 obstruction type episodes instead of 6 and they didn't require ER visits so I'll take it. 

duck11 posted:

Hi all,

A little update. I've been on a super duper strict low residue diet--and quite often puree my food. It's gross ad time consuming but I do feel like the episodes have been less often and less intense the past month so maybe it does help. I've even resorted to eating my sons baby food! Anyway, just thought I'd pass it along incase you want to try it. I've had 2 obstruction type episodes instead of 6 and they didn't require ER visits so I'll take it. 

I think you are on to something. I’ve been having the episodes of severe pain every 1-2 months for 10 months now. I’ve been trying to figure out what is triggering the episodes and I think it may be food related. After an episode I restrict my diet to about 1/2 of what I normally eat and I think after a month or two has gone by I’ve gradually increased my intake to a more normal amount. I also purée my vegetables and follow a low residue diet. I don’t think it’s what I’m eating so much as the volume. When I eat “too much” (which is really not that much” I think it might be causing partial obstructions. Now I’m cutting back on foods that thicken my stool and taking a 1/2 dose of MiraLax daily for a week as recommended by my doctor. This is to try to clear out any partial obstruction that may be present and to try to avoid another one. I’ve had so many doctors tell me they don’t know what is causing my pain and they don’t know what to do for me. Now my doctor is leaving his practice and I’m going through the process of finding a new one. I’m still on the journey of trying to figure out what to do and how to cope with this. Wish me luck! 

maddie18 posted:

Try taking super enzymes by Now.  Look it up online.  This product helps digest our meals.  I also avoid fiber.

I’ve been taking Better Bitters which is supposed to help your body produce more of it’s own enzymes. I haven’t noticed much of a difference though so I might try the enzyme supplement next. 

All of the symptoms that have been described are either a partial or full blockage!  I have had so many of them and have had 5 scar adhesion surgeries.  It is unfortunately a endless cycle.  If you have severe onset of pain and can not go to the bathroom that eventually leads to vomiting, it is an obstruction.  My doctor has always told me that if I go 4 hours after the vomiting starts and still not resolved to always go to ER.  I am immediately administered fluids with IV Reglin to promote bowels to move and Dilaudid for pain.  Regular xrays will not always show blockages but Cat scans usually will.   My blockages usually pass either on their own or with help at ER.   One of my surgeries was emergency to unblock them though.  Twice I have had areas of my small bowel just start closing and have had two resections.  I just had the last surgery in December.  It was a resection and adhesion removal yet again.  I am now looking in to getting Clear Passage Therapy because I have already had a major blockage since my surgery!  Ugh.  I am a very active healthy person and hate having to be set back by surgery.  One of the members on here has had the Clear Passage Therapy twice and they have had good results so far.  I am also experimenting with Intermittent fasting to let the bowel have periods of rest.  I had severe pouchitus going into my last surgery.  I had to go for quite sometime without eating before and after surgery.  They didn't do anything while I was in hospital to help my pouchitus get better.  But the Pouchitus is gone!  I think the healing is a result of fasting.  I am only eating between 11 am and 9 pm.  So it isn't really that hard.  Also increasing my water intake during the periods that I can't eat food.  I wish I had kept up with the number of blockages that I have had in the last 17 years.   I think that I am very fortunate that my GI doctor is also my GI surgeon.  He has saved my life many times now.

If anyone that sees this has looked into the Clear Passage therapy as well let me know.  It is know as the Wurn technique.  Check it out.

It is very interesting and they have some very significant studies that show unbelievable results.  The person that is on here that had it done was able to get her insurance company to cover it.  It is pricey.  $8000 .  It is 5 days of therapy 4 hours a day.  Also they only have 6 facilities in the US.


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