yes, I have been going through this same situation since 1987. I had an emergency surgery in 1989 to remove a blockage.  Surgeon informed me taht if they hadn't removed that blockage when they did I would have had only one more hour before I would have died.  I have been off work for the last almost 5 months due to blockages, three times I was admitted to hospital. I'm afraid to do surgery to remove adhesions as that would mean major surgery without any guarantee of  o further obstrutions. The occurrences have been much over the last four years.  

I forgot to add that I was admitted into hospital on all of these occurrences for bowel rest.  Thankfully I have been ok without teany further needfor further surgeries due to these issues.  I stay away from hard to digest foods now.  I meditate and have a hobby that takes my mind of stressors in my life.  

Hi MADDIE18,

Thank you for responding to my post.

I am curious how your doctor determined what the problem was because we are still in the stages of trying to figure out exactly what is happening. All of my scans and test results come back normal when I am experiencing the pain. There is nothing showing "proof" that I have a blockage or that there are adhesions or that my intestine is twisting/bending. My doctor is thinking that is what's happening based on my symptoms but we don't know for sure. 

Also, how often do you have episodes of severe pain? Do they last for hours like mine? What do you do when it happens? So far my doctor is telling me to go to the ER if it happens but it is exhausting to go through the ER experience each time just to have them tell me everything looks normal and send me home. I know it's better to be safe than sorry but I wish there was a better option.

Have you been able to go long periods of time without experiencing an episode? Are dietary changes helping? So far this has happened once every few months since it started, even with dietary changes.

Thank you again!

The only way they can tell is through x-ray. My x-rays are hard to read (too many scars and adhesions, I'm told) because I've had 8 abdominal surgeries. So when they see an obstruction it's a very good guess made together with my symptoms. I vomit and I'm in extreme pain and I can't go number 2 when I have these pains. Do you have any other symptoms at all when you're in pain? I have to have a very strong pain killers, morphine doesn't help my pain at all. I need Dilaudid.

MADDIE18,

My symptoms sound very similar to what you’re describing: severe sharp pain that comes on suddenly and randomly, trouble going to the bathroom, vomitting. No other symptoms like fever or anything else that I can think of. It has always happened in the evening after eating. 

At my first ER visit they gave me morphine and it didn’t help at all. That is interesting that it doesn’t help your pain either. 

You said this started in 1987, how many times has this happened to you since then? I really don’t want this to become something that happens frequently, it is so hard to go through. I’m so sorry you have been dealing with this for so long, that sounds really hard.

Do you go to the ER everytime it happens or does it get better on its own if you wait it out at home? Does pain medicine help? 

It sounds very difficult to live with long term, I’m sorry you are dealing with this too! 

Let me know if you can think of anything else that might help me. I really appreciate it. 

Thank you again! 

A few things about adhesions:

1) Most of us have adhesions after abdominal surgery. Most adhesions are inconsequential. Some adhesions are bothersome, and some adhesions are very bothersome.

2) Adhesions (causing the bowel to twist or kink) can rarely be proven as the cause of abdominal pain or obstruction (unless you get opened up and the problem is visible). They can be strongly suspected if the behavior is suggestive and other possibilities have been ruled out.

3) Adhesion surgery is indeed risky, since it really can make things worse. Nevertheless, there are plenty of people who have gotten their life back from it. It’s a very tricky decision.

4) The reasons to get medical attention for obstructions are a) hydration, if you can’t take in fluid, b) access to emergency assessment and surgery in case a bowel rupture or infarction is imminent, and c) pain relief. Many folks appropriately delay emergency care once they get to know their bodies, and recognize a partial obstruction or one in its early stages that might clear on its own. Many do clear on their own.

I am taking super enzymes with each meal.   That seems to help a lot.  If I start to feel obstructed I will take much vomica (homepathic med) that also seems to help.  

When I go to hospital I will ask for Dilaudid.  That helps my pain.

This read's just like my story the past year--sorry you are going through it. I ave all my pain on the lower right side too. I finally saw a colorectal surgeon who saw things on scans that others didn't and said the right sided pain/attacks--just like yours--are from blockages from adhesions. I have been admitted 6 times to hospital for them and had another 7 at home, but they are always partial blockages. Sadly there isn't anything they can do and I am trying to find a way to live with them. Just wanted to let you know you are not alone, and to not listen when they say "it's fine" or "all the scans are fine. You know your body, and pain like that isn't normal! I had every scan under the sun and it took this surgeon to sort it out. At least I get some pain meds and maxaran at home so I can get through them at home without wanting to claw my eyes out in pain or have to go to the ER every time. 

DUCK11,

Thank you for sharing your story, I’m so sorry you are dealing with this too! I am meeting with a surgeon in a couple weeks and it will be interesting to see what she says. I’m worried it might just be something I have to live with too. Thank you for letting me know I’m not alone. I hope at the very least the episodes will be few and far between. 

I can't take anything for pain.  Plus that isn't recommended.  Pain meds slow down the bowel.  I take enzymes bowthat break down the foods I eat.  I usually take them with my biggest meals.  Trust me, these are saving my life.  You should try them.  

Blockages acan be fatal.  Symptoms should not be covered up with pain meds.  Your bowel needs to go on a rest. No foods, just IV fluids.

I almost died with my first episode.  The surgeon said I had one hour.

Where are you residing?

MADDIE18,

Thank you, I think it would be worth bringing up these suggestions when I see my gastroenterologist. 

Hi maddie 18,

I think your situation and ours are very different. The blockages you can die from are full blockages, and no amount of pain meds would cover up the pain! Partial blockages are different in that they are just awful enough to make you bedridden, but can usually be managed at home with fluids and pain/nauseau ,management. A small amount fo air/fluid passes through so you know it isn't fully blocked. I've had full and partial, and believe me, you can tell the difference. The full i would definitely go to the hospital for, but the partial you can sometimes manage at home. I don't think anyone is suggesting to avoid hospitals and self-medicate wth painkillers, just that there are varying degrees of blockages. 

I have been hospitalized 17 times for blockages. I have had surgeries for these blockages twice. The first to m e in 2012 . I remain mhm ed symptom free f or approximately 4 years after that surgery. Then they began again. I had the second surgery in October 2017 but have had 3 hospitalizations t ions since then. It's always the same CT scan. NG tube, severe pain which only responds to dilaudid not morphine , versed for the vomiting, I vs , no food and usually a 3 day stay in the hospital. I usually try to get to the nearest and largest medical Center where they have a colorectal surgeon on staff in case they have to do emergency surgery. These attacks have always occurred in the evening. Has anyone been told how to prevent them other than staying on a low residue diet? These attacks have happened when I have been on vacation out of state and in Europe. I am afraid to travel anymore.

I experienced another, shorter episode of intense pain last night and this time it happended 8 hours after I had last eaten anything and I was having BMs up until the pain got intense. These painful episodes seem so random. I’m still not even sure if they are blockages since the hospital tests never show anything, but I don’t know what else could be causing the pain. I also have milder pain in the same lower right area pretty much everyday and I feel mild pain when doing different things like standing, stretching, laying down, lifting something, bending, etc. When I’ve been to the hospital they don’t find anything wrong so they just send me home. I wish I knew how to keep this from happening. I’ve tried eating smaller meals, resting, drinking plenty of fluids, avoiding food that is hard to digest but nothing seems to work. I’m meeting with a surgeon and another gastroenterologist in a couple weeks, it will be interesting to hear what they have to say. 

Gosh your symptoms are exactly like mine, sorry to have a partner in misery When I saw the second surgeon, she said all these can be caused by adhesions even if nothing shows on scans. The bowel can twist/untwist at random which is why diet doesn't seem to affect it and why the pain level can vary so much. I feel like I have chronic pain in the lower right and when the pain gets bad, it's the same place/kind of pain but just a greater intensity. I too tried fluid diets, low residue, everything, but nothing seemed to make a difference. She said diet wouldn't matter if the pain is from adhesions, although it can sometimes help. Please do post back on what your dr.'s say--I'm really curious to hear if there is a different prognosis possible then what I was told.....I am at the end of my rope too  

DUCK11,

Wow your symptoms do sound like mine! I’m sorry you are going through this too!! How long has this been going on for you? How often do you have severe pain? How often have you had to go to the hospital? Are your doctors suggesting surgery or anything else or is this something you just have to deal with? I’m meeting with the surgeon next week, really interested to see what she says. Also getting a second opinion from another GI doc the following week & then following up with my regular GI doc in May (there’s a long wait for an appointment). So far the only other advice I received was from my OBGYN who said it’s possible that this could be endometriosis because some of the symptoms are similar. She said I don’t have the “classic signs” but that doesn’t completely rule it out. So I’m trying out skipping my periods with continuous birth control (skipping the sugar pills) because if I have endometriosis that will help and she said it won’t hurt anything to try this. If it helps great, if not we can rule that out. I still think this is probably GI related but I’m willing to try almost anything at this point. 

I thought I would write before I see the new GI doctor and ask you some questions. I assume that you have had C T SCANS. when you go to the hospital. What about MRI and scans with contrasting medium? What about any swallowing tests with contrast medium? Do you have copies of these tests and the CDs to take with you to the doctor? Are you going to be seeing doctors that is a colorectal surgeon and a GI that actually are familiar with J Pouch surgery. I think you are smart to have the endometriosis looked at too. My problem shows up on scans as being around the area of the anastomosis I have been told that I will have to deal with these episodes (bowel obstructions )as long as I respond to the treatment that I mentioned N G tube , pain meds , hospitalization andbowel rest. More surgery would only be done if it was an emergency such as a strsngulated bowel or gangrene. Crazy thing is the condition or the j pouch on the pouchscope is good. I continue to be told by my doctors that they can't tell me if there is anything to do to prevent t hem.  I will be anxious t o hear what you are told and will let you know after my next appointment in April if I learn anything else. Hopefully we can stay out of the emergency room in the meantime.

Have you corresponded with anyone else on this site that has chronic obstructions?   

MARJ,

I have had CT scans, ultrasounds & a small bowel follow through with barium & every test has come back “normal”. I haven’t had an MRI with contrast, maybe that would show something? My GI doctor says it is really hard to catch something like this on a scan so I’m not too incredibly hopeful about that. I don’t have copies of the test but everyone is connected to the same system so they should be able to pull stuff up on the computer. The GI doctor I’ve been seeing is at the #1 ranked hospital in my state and he is one of the doctors with the most experience with j-pouch patients in the area. He recommended a few others that also have a lot of experience so I am going to see one of them too. The surgeon I’m seeing is with the same hospital and she is the chief of colorectal surgery & I’ve been told she’s great so that is positive. I find it interesting that everyone has mentioned being admitted to the hospital, being put on bowel rest, etc but when I’ve been to the ER they run tests, say everything is normal and send me home. Maybe in other people’s experiences the doctors found something so that’s why they treated the situation differently. My doctor also hasn’t been able to tell me much about how to prevent this from happening. I’m guessing it’s just so unpredictable that there’s not a lot that can be done to prevent it. So far all of my correspondence about this is in this thread of conversation. Good luck at your appointment, I hope you get some good information & help! 

Yeah the ER dr's are always like 'everything is clear" for me but I insist on them calling the surgeons anyway and that is who admits me. ER doctors don't have the expertise to deal with us I have learned. My "scans" are always clear ut the surgeons admit me for bowel rest etc. anyway for 3-4 days. They say they can tell by the symptoms/how we respond to the treatment. Maybe next time you are in the ER, insist o a colorectal surgical consult and make your case. I had one surgeon at another hospital who, too said "go home", so now I go to another hospital where I found a more caring surgical team. It is amazing how different medical opinions can be...!!! I am just shocked to see here how many of us are dealing with this. It seems like a major downfall of pouch surgery. I am at the point of considering disability because I deal with theme minimum of 15 days/month. I don't know how one is suppose to hold a job like this. i think we need to start a patient uproar to encourage more research into these long term side affects...!!!

Marj,

I have chronic obstructions too.  I wrote about my episodes above.

SJAN810 posted:

MARJ,

I have had CT scans, ultrasounds & a small bowel follow through with barium & every test has come back “normal”. I haven’t had an MRI with contrast, maybe that would show something? My GI doctor says it is really hard to catch something like this on a scan so I’m not too incredibly hopeful about that. I don’t have copies of the test but everyone is connected to the same system so they should be able to pull stuff up on the computer. The GI doctor I’ve been seeing is at the #1 ranked hospital in my state and he is one of the doctors with the most experience with j-pouch patients in the area. He recommended a few others that also have a lot of experience so I am going to see one of them too. The surgeon I’m seeing is with the same hospital and she is the chief of colorectal surgery & I’ve been told she’s great so that is positive. I find it interesting that everyone has mentioned being admitted to the hospital, being put on bowel rest, etc but when I’ve been to the ER they run tests, say everything is normal and send me home. Maybe in other people’s experiences the doctors found something so that’s why they treated the situation differently. My doctor also hasn’t been able to tell me much about how to prevent this from happening. I’m guessing it’s just so unpredictable that there’s not a lot that can be done to prevent it. So far all of my correspondence about this is in this thread of conversation. Good luck at your appointment, I hope you get some good information & help! 

'My GI doctor says it is really hard to catch something like this on a scan.'  Sounds like GI has an idea if he said this...have you asked him to explain what he or she means?

MARJ,

That is a good suggestion to ask for a consult from colorectal surgery and maybe gastroenterology too. I’m sorry you are dealing with this so often, that must be so hard! Also, I agree that it is really hard to work with these kinds of issues going on. 

MADDIE18,

My GI doctor thinks that based on everything that’s happened and everything I’ve told him, I have adhesions from jpouch surgery that are causing my small intestine to twist or bend at random and cause some sort of blockage and pain. He thinks this even though so far all of my scans and tests have come back “normal”. He said maybe by the time they do the test it isn’t twisted anymore and basically said that even though this is probably happening it is not necessary going to show up on any kind of imaging they do, especially after the fact since I’m not in severe pain 24/7, it is episodic, that makes it harder to “catch”. That is my understanding anyway. 

Any advise on what could be done to prevent the twisting or any advise on what can be done at home t o prevent things from getting worse?

Not much feedback on how to prevent the episodes besides eating small meals throughout the day rather than a few big meals because when I get overly full feeling it’s just going to put added pressure on the area which probably isn’t going to help the situation. 

I’ve been prescribed medicine to relax the intestine which I can try if the pain starts up. I first tried dicyclomine and then hyoscyamine, neither one seemed to make much of a difference for me but maybe it would help others. I was also given pain medicine with the understanding that I will only take one pill and if I’m still in pain & not having BMs after a few hours I will go to the ER. This helped me get through an episode the other day where after a couple hours I was feeling better and didn’t need to go to the hospital which was really nice because going there is such an ordeal. He only gave me a small number of pain pills though and is focused on me following up with the surgeon so I’m really curious to see what she says and then what my GI doc says after that. I want to know what to do long term. Right now I’m just waiting for all my appointments to take place. 

Thanks for posting. My appointment isn't until the second week in April but I will post something then . I have had a lot of vomiting by the time I get t o the Emergency Room so I need medication by injection. The wait is always so long in the Emergency .Room .😢

Marg and SJan810,

Thank you for sharing your stories here--not that I am glad others are going through what I am, but somehow comforting to see other physicians giving the exact same information and advice as mine have. And you are right Marg, the ER wait is so dreadful

The "twist/untwist" scenario you mention is also what my Dr. said and why it isn't showing on scans and also why it seems to come and go at random. Sometimes it is partially blocked for 4 days and sometimes it is just suddenly painful for a few hours and seems to pass. I'm alarmed how many narcotics I've taken the past few months to cope but honestly don't know what else to do--I don't think I could function without them with how often I am in pain from this-at least they make it less awful. I'd be in the ER twice a week. And going to the ER is SUCH a ordeal. My surgeon told me today the only reason I need to go to the ER at this point is if I started vomiting a lot, have a fever, or have intolerable pain, otherwise it is Ok to try to soldier it out at home. She also said there are no surgeries that can help since they don't know where the mechanical problem is. She said to mentally prepare for disability and I am trying to process it all and how to care for my infant son. Really looking forward to hearing what your dr.'s tell you as I am at my witt's end  

May I ask, and it might have been asked and answered, but do you have a J, S or W pouch?  I have a W pouch and a year ago had pain in my lower right quadron, after i threw up I went to the ER.  It was a complete obstruction that needed surgery yesterday.  I haven't had any problems since, but I do know that I am über sensitive to pains now.

I have a j-pouch, my surgery was at the end of 2016 and I just started having this pain mid 2018. I’m sorry to hear so many of you are dealing with these challenging issues & I’m thankful for the support & encouragement from all of you too. It’s nice to know I’m not alone in this. I was diagnosed with ulcerative colitis as a kid and I knew I would be dealing with the effects of it for the rest of my life but the issues/challenges that have come from it seem to be getting more and more complicated with time. When I was a kid it was just about avoiding a few foods and taking medication, now it’s random pain that puts me in the ER with no idea how to avoid it. It’s hard but I feel like all I can do is try to make the most of the times when I’m feeling okay and take life one day at a time. I’m really lucky to have a supportive husband and I was able to stop working last year because it became too much with everything I’m dealing with but it makes me think there needs to be a lot more support out there for people dealing with these issues. I often think - what would I do if I were single and had to support myself, it’s really scary! I’m grateful for online communities like this that I can reach out to for advice, suggestions, support & encouragement. 

i have a j pouch 

Hi! My first time ever posting or joining a support group. You have no idea how thankful I am to have found this! I have been having abdominal pain as you have all described for years and never has my surgeon really found any answers!  I sometimes feel I’m going crazy.  Sometimes I’m scared one of my “episodes” won’t work itself out on its own and I’ll have to decide what to do... I’m so sorry you all go through this pain, but I’m comforted to know I’m not alone with this proble in the j-pouch world. Thank you so much for sharing!!!

I wish we could mobilize these thoughts somehow to communicate to the medical community what it is "actually" like to live with a J pouch and adhesions (and other problems)  and find a way to encourage more research in these areas. All the dr.s I have ever met are like "oh yeah, it's fine, you just might need to adjust your diet and go to the bathroom more". Reading on these forums this is so far from the truth most of us live, and it honestly seems like they are oblivious to it and the affect on our quality of life. I wonder if it is a cause the Chrons and Colitis Foundation could take up or advise on. 

Sidenote-I just spent a hellish day and night in the ER with more adhesion issues with incredibly uncompassionate doctors. Feeling very beaten down  

BANDITGURL,

I am sorry to hear that you are dealing with this too & I‘m glad that finding this forum offered some comfort. I thought I was alone in this too before so many people started responding saying they are having the same issues. 

DUCK11,

I’m so sorry to hear you had another episode and had to go to the ER! Hopefully you were able to get some rest today and are feeling a little bit better. I understand your frustration with all of this. I sometimes wonder if I would have chosen to have the jpouch surgery if I knew things were going to end up the way they are now. I think a lot of people who have jpouches do okay with them and doctors don’t want to scare us by telling us everything that could possibly go wrong but then it is really frustrating when things go wrong that you never expected. I don’t have any regrets because my choices were to stay sick with ulcerative colitis, have an ostomy forever or do the jpouch surgery and I couldn’t continue the way I was being so sick and I knew that if I opted for a permanent ostomy I would always wonder if life would have been better with a jpouch so even though I’m dealing with some really hard stuff right now, I feel that I made the best decision I could. If I could have chosen to be totally healthy & not deal with any of this I would have chosen that of course but it wasn’t an option. The biggest lesson I’m learning is how to accept my reality and make the most of it, it’s so hard sometimes but it seems to be the only way to keep moving forward. Have you tried reaching out to the Crohn’s & Colitis Foundation to find out if any research is being done about all of this? It would be great if someone was able to figure out better ways to help all of us! 

I learned a lot from everything I have read on here! A lot of this information has never. Even given to me by my doctor.  I have had my j pouch now for 19 years and didn’t start having these issues until probably the last 8-9 years. I’ve really been very lucky!!  Having some research done for the future would be great!

Duck11, 

Sorry for your day!  Yikes, makes me thankful for the moderately pain filled week I’ve had.  😜 Gotta look for that silver lining sometimes!  I hope you are filling better by now. The Dr’s just not getting it and not realizing what your going through just makes it so much worse!  Thoughts and prayers for better days for you and everyone on here!

Adhesions really make life miserable for some folks. They aren’t specific to J-pouches, though. Any abdominal surgery (including an end ileostomy) can leave behind adhesions that may cause intermittent problems. There’s no specific diet, but at the first sign of trouble it’s best to switch to liquids, so solid food doesn’t back up behind a temporarily narrowed area.

Just Some thoughts:

I think what would help is medical knowledge on how to prevent adhesions from forming in the first place or w hat to do to break them up once they have formed. I can understand why the doctors don't want to do more surgery unless you are in crisis and they have to operate.  Adhesion problems can occur after other surgeries but it would be good to know how much higher the rate of adhesion problems are after j pouch surgery and is there anything that can be done prior to,during, or after surgery to prevent them from causing problems. Other abdominal surgeries can cause adhesions including ileostomy surgery but is the risk and By higher when you have jpouch surgery? If the risk is that much higher for jpouch surge rises then that should be explained before surgery.         

Has anyone been told to get rid of the jpouch as a solution?

I hate the uncertainty of when these attacks might occur and not having anything that we can do to prevent them from occurring.

I had a total colectomy with 'W' pouch in 2016. After about a year I had sharp pain on my right side and I couldn't pass anything.  I threw up after about three hours of pain and went to the ER.  I had adhesions.  They didn't know until a contrast scan was performed and then rushed me to surgery.  The surgeon that was there told me that my pouch was almost dead when they got in there due to being flipped over itself and the blood supply was cut off.  I am wondering if this happens more with people that have larger pouches, i.e. S pouch and W pouch.  

My surgeon said that once you have adhesions the likelihood of getting them again is almost a foregone conclusion.  I am going to keep my fingers and toes crossed that he is wrong!

Here’s a good summary about adhesions that folks might find informative.

https://www.niddk.nih.gov/heal.../abdominal-adhesions

Scott,

Thank you for sharing that info about adhesions, it was really good information to read through. It is also helpful to share with my family so they can better understand what I’m going through. 

STOLEMYCOLON,

Wow that sounds like a really scary experience you went through! I hope you haven’t had anything as serious as that happen since then. It sounds like these obstructions can get really bad so it makes even more sense now that my doctor was pushing for me to go to the ER if I have an episode of pain just to make sure everything is okay. 

SJAN810,

I was just re-reading this thread and see you mentioned endometriosis. I have this as well and was diagnosed a few years ago and can say the "type" of pain from endometriosis is very, very different than the pain we are all talking about here. For me, it was more diffuse--like my entire lower abdomen was on fire all over with thousands of needles poking me everywhere, not the one-sided sharp and focused pain the adhesions are causing. It also didn't make me sick, bloated and blocked up like adhesions do. My GI tract functioned fine despite the endo pain. Maybe it depends where the endo lesions are though. Anyway, I have had my endo under control (thank goodness) for 2 years now, and still have all the pain we are discussing here. I'm not saying don't look into getting it treated to see if it is there, but just don't let them dismiss your  gut symptoms and blame it on that. After my endo was under control and I still had this other kind of abdominal pain, they gave up on me. It was like, "well, we did all these tests and you have treated endometriosis, so you shouldn't be in pain anymore". Flashforward 2 years where I started having blockages all the time, and I can see that pain was the start of all of this adhesion business.