Continual Blockages

At this point I am beside myself.  I have had my J-Pouch since 2001.  Had issues off and on throughout the years.  This year has been horrible.  Ever since approximately March of this year (2017) I have been having continual blockages.  I was in the ER approximately every other week at that point.  In August I told my surgeon I cannot keep doing this and his suggestion was exploratory surgery.  I then ended up having a 6 hour surgery for massive adhesions.  When I got out of the hospital I thought, this is great, it is over now for sometime.  Low and behold three weeks later I am in the ER again with another blockage and have been having them now every week.  I just got out yesterday again.  I have had CT Scans, X Rays, and an MRI, which seems to find nothing in particular except a bit of thickening in the pouch.  I have now lost 30 lbs and can only eat soup and any mushed up food.  Even the nurse in the hospital suggested an "alternative" approach.  This time they actually saw the blockage and I ended up throwing up the barium after the CT, which I assumed cleared it as I was then again able to go to the bathroom.  Once again to be sent home with NO HELP!  I am sure this will happen again next week, as it is a weekly event now.  I am scared and extremely upset that no one can seem to find out what is going on with me.  Has anyone had any experience with this or anything like it.  My stomach still hurts even when I eat something very soft  Oh, they also gave me a test where they watched this horrid tasting stuff that I had to drink go through me and watch it go through.  Nothing there.  PLEASE HELP!  I am scared and just do not know where to go or what to do.  :-(

Smrdaz4life

Original Post

Hi I have been having same problems this year used to have about two blockages a year, but this year continually in hospital tried having adhesions done still getting blockages, mine seen to be above the pouch just been reading my surgeon report ro my general Doctor where he says he thinks my primary problem is with dysmotility of small bowel, wants me to try inserting a rectal tube during an episode to see if this leads to relief. I am also taking orally gastro griffin when I start to get symptoms of blockage which does help some times. When my next attack happens he wants the local hospital to try gastro gastro griffin as an enema, hoping to see if it is a mechanical obstruction or weather it is adynamic in origin this may prove to be therapeutic in the latter case, so just waiting for next attack at the moment , now I have to find another doctor as the clinic I go to is having major staff changes not happy about that feel so comfortable with the one I have especially when they have been through this whole process of jpouch care .if you google some of the words it may explain things better hope this may help I know it is frustrating I have come to the mind set take it as it comes just handle each episode as it happens there is not much else I can do this forum is so excellent differant ones giving suggestion and help . Let's know how you progress it helps us all. All the best Susan 

Susan thank you for your reply.  Do you have a j-pouch?  I did have to look up some of your terms.  I then researched this at the Mayo Clinic.  Seems like they have done studies on this.  I will print this research out and bring it to my GI Dr.  When I looked up gastrogriffin, it appears to be the white stuff they make me drink for a CAT Scan.  It always makes me go to the bathroom and clears my blockages.  This last time it did not make me go and they brought me down for the CAT.  They finally saw the blockage.  When I came back I upchucked the barium and then it cleared.  When I mentioned to the doctors how this works they said I could not have it at home since it is radioactive material.  Unless this gastrogriffin is a bit different.  The medical area is absolutely not my area but I think I have a lot to learn.  The first time I had tons of blockages they finally found a hernia and fixed that, the next time there was a lot of blockages was this August and that was the adhesion surgery.  I have been in the hospital every week since then.  The pain and loss of work is just horrible.  It also takes a good 3 days to feel good enough to get out after an episode.  

I am so sorry about your clinic issues.  I absolutely understand that it is very hard to find a doctor that understands what this is all about.  Every time I go to the ER and get a new doctor there are all these questions and it frustrates me that they just do not understand this type of issue.  Keep in touch as maybe we can help our doctors help us.  Oh, btw my name is Pam

 

 

 

 

Hi Pam. Yes I have a jpouch 9 years now lots of up and down problems over the years,this past year has been the worst with constant blockages. The surgeon I have recommended that I have the gastrografin at home I order it through my pharmacy no problems it comes in 100 mil bottle I take at onset of pain 30 mil every 6 hours doesn't alway work it is the one they use for X-rays,when I can't control the vomiting I head to hospital have ng tube pain meds and introvenious gear to hydrate me.it does take a couple of days to pick up after I come home I live in Brisbane Australia so maybe our doctors are more relaxed my surgeon know me very well been through a few emergency surgery's over the years he has surgested no more ct scans only X-rays as over the 12 months I had two many ct scans lets know how you go your doctors may have something to help keen on any advise. All the best Susan 

So sorry for all of the blockages.

I do understand the frustration and confusion with what is going on.

I never had blockages, adhesions or occlusions...never even had a post-op ileus until 2007 or 08...then they started to hit me with a vengeance.

Around 2014 I had my gallbladder taken out and they managed to unblock a loop or bowel that was twisted and stuck. I thought that that was the end of it but I still get occasional semi-blockages and 24h occlusions.

My surgeon said that even going in through laparoscopy creates more adhesions and therefore the cure is a complication in the long run.

Depending on the origin (twists, adhesions, narrowing of the intestine, intestinal paresse (lazy intestine)) you will need a tailor-made solution. It does not sound like this is an easy fix or standard problem...you may have a section of your small bowel that does not receive the message to "squeeze" things through (peristalsis)...no matter which it is you need a surgeon or diagnostician who will take the time and listen to you and not just deal with the emergency of the minute but find you a long-term solution.

Sharon

 

I am sorry to hear you are having problems, but I was relieved to see someone else who seems to be stuck in a similar position as me.     I have a j-pouch and I have had problems with obstructions caused by adhesions.   I had lap surgery to remove adhesions in 2014 and unfortunately they burnt a microscopic hole in my small bowel and didn't notice, so a week later my sb ruptured at home which then resulted in an emergency laparotomy......2 months later the obstructions started again.    Since then things have got worse, I have only been able to digest liquids and my quality of life is really bad.   If I stand or sit up my bowel obstructs, so I spend most of my time lying down.   It is very difficult to pass wind which builds up and the only way to get the gas out is lying on my stomach.    I keep living like this, but I think the time is coming when I am going to have to have surgery again.   I am getting thinner and thinner and more and more tired and TPN keeps being mentioned, which I absolutely do not want.  It is chicken and egg.....more sugery, more adhesions. 

Just a note of caution on Gastrogafin.     If you don't have a colon, you should not try it at home without medical supervision.   It causes complete emptying of the bowel and if you have hydration issues can be extremely dangerous.    I am always given IV fluids before, during and after gastrogafin.

All the best and I totally get it!

Caroline

 

 

 

 

Thank you so much for your advice.  I finally got in with my GI, I am very disappointed in his advice.  He told me he wants me on high doses of Pred.  Been there done that.  They are horrible.  I am currently on Medrol 2 1/2 mgs. a day and trying desperately to get off.  Well he told me he feels the blockages are coming from inflammation.  That is why the pred.  He also mentioned that IF it is an infection I would get deathly ill right away and end up in the hospital and then they have to figure out which infection.  This is horrible!  I too am losing weight like crazy.  I lost 30 lbs so far and keep going down.  I am losing my hair slowly due to malnutrition.  He also mentioned that if it is inflammation that I would have to reverse the surgery and go back to an ostomy bag.  ONLY if i absolutely have no other choice would I consider that.  My insurance is changing in December and waiting to see if I can go to the Cleveland Clinic in Ohio since they actually have J-pouch doctors.  Maybe they can figure this out.  I am getting other opinions and my GI doctor thinks that is a good idea and also wants me to go back to NY back to Mt. Sinai where I had my original surgery.  My gut is telling me to go to Ohio if I can and if I can take that time off work.  I have had so much time out of work as it is.  

I do not have a colon, they removed the whole thing in 2001.  Thanks also for the advice on the Gastrogafin.  There has to be a better way for us.  I also feel there has to be an answer.  They seem to create these j-pouches and do not continue to follow us as things change in time.  Why do they not give us vitamins and minerals in IV form so we do not end up in a worse condition.  Please let me know how you are doing.  I thought I was the only one that was going through this.  Thank you Susan, Caroline and Sharon.  Pam 

 

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