To the OP:

Yes!  I had the most horrific pain where my stoma was and now I have a hernia.  As for the pain, it was due to adhesions or scar tissue.  It caused ascites and I had 1100cc of fluid sucked out of me.  It came back and the pain continued, so my surgeon cut me open and fixed me up.  He inserted a mesh.  So far so good.  

I will have another surgery next month to fix the hernia.  And another mesh.  It feels like a never ending battle.  Unfortunately, I still feel a lot of pain when not taking meds.  The only meds that really address it is Suboxone.  Better than regular pain meds.  Except it is now more of a dull, throbbing pain vs sharp pain that feels like shards of glass.

I don't know of other options other than surgery.  Good luck.

ADHESIONS. The more I learn about them more I hate them. I have a jpouch. Keep having reoccurring bowel obstructions with hospitalizations requiring dilaudid, n/ g tube, I.V.s and medicine for vomiting.  I go to Johns Hopkins in Baltimore. The blockages usually resolve in 4 days.  I have had 2 surgeries for lysis of adhesions with only fair results. After one surgery I was free of blockages for approx. 4 years but after the second surgery I was only free of the hospitalizations for approx. 7 months. Has anyone had sucess having release of structions? Who is doing most of the problem surgery now at Cleveland Clinic? I feel so trapped with no options other than to wait for the next obstruction. My doctor does not feel diet and exercise contribute to the bowel obstructions. 

 

  

 

 

 

Cleveland Clinic is why I'm in this position.  I hate those @@%*! The colorectal surgeon blatantly lied to me and said she could do laparoscopic.  She never disclosed the success rate was only 10% and that I'd most likely need a laparotomy.  Sold us a false bill of goods. I would have never agreed to being cut open again.  The entire experience was nightmarish including the hospital stay.

On another note, I also have endometriosis and, according to the tactless doctor on the Cleveland Clinic surgical team, a uterus the size of a grapefruit that calls for a hysterectomy.  I wonder if it is contributing to my pain.

As for solutions, I had lysis of adhesions and the surgery was done by Dr Phillip Fleshner.  However, he is in Los Angeles.  He is highly regarded and a rock star in the OR.  If you have options, I'd consider seeing him.  

As for day to day solutions, there is a Chinese herbal tea that aids in digestion.  It is known as red tea or Pu-Erh.  It breaks down all the food in one's stomach.  My son even remarked how well it worked.  It's worth a try.  I use loose leaf.

I also use a portable Shiatsu massager you can buy off Amazon.  I swear by heat therapy and massage.  I place it under my lower back and it alleviates pain.  Especially for menstrual cramps and post surgery.

This thread is helpful.  It sounds just like my experience.

I have had my j pouch for 19 years now, with no problems with it till last week.

That's when the abdominal pains, then later vomiting, started.  It got better until Thursday, when the painful cramps started again.  That was a holiday, with family and food, and events, so I just powered through, not wanting to upset everyone, and figuring it would go away.  That night was so painful, I decided to call my DR. the next morning.

Office was closed for the Holiday weekend, so I went to a walk- in urgent care.  They took blood and did an x ray, which showed either "fluid filled bowel loops" or a "mass" in my abdomen. They said to go to the ER for a scan to determine what the "mass" is.  

In the ER, I had to get an IV and more blood drawn.  (By the way-is finding a vein as terribly difficult for everyone here as it is for me?  Mine have still not recovered from all of the needles involved with my original hospitalizations.)  

My CT shows no blockages.  There are some adhesions, but not in the area of where my pain is. So the ER doctor basically tells me I'm just constipated, I need more fiber, and suggests a laxative.  She sends me home with a prescription for Bentyl, to calm the cramps.  Now I feel silly explaining to waiting family members that I caused all of this drama over constipation.

That night I was even worse, vomiting horribly, and not able to "go".   Stomach swollen and tender.  

Finally, yesterday morning, I was able to "go" -  what a relief!  And it was not at all firm, not what I would expect if this were just constipation.   In fact it was very fluid.  Something was clearly blocking the path, because once it cleared, I was cleaned out very quickly.  This is gross, but I lost 5 lbs between the day before yesterday and yesterday.

I am going to see a different Colon/Rectal surgeon, as mine is now retired.  I'll see what he says,  but I'm really worried that this may occur again.  I haven't started eating normally yet.

I just can't figure out why all of a sudden after 19 years, this is happening now.  

 

 

DisneyMom posted:

This thread is helpful.  It sounds just like my experience.

I have had my j pouch for 19 years now, with no problems with it till last week.

That's when the abdominal pains, then later vomiting, started.  It got better until Thursday, when the painful cramps started again.  That was a holiday, with family and food, and events, so I just powered through, not wanting to upset everyone, and figuring it would go away.  That night was so painful, I decided to call my DR. the next morning.

Office was closed for the Holiday weekend, so I went to a walk- in urgent care.  They took blood and did an x ray, which showed either "fluid filled bowel loops" or a "mass" in my abdomen. They said to go to the ER for a scan to determine what the "mass" is.  

In the ER, I had to get an IV and more blood drawn.  (By the way-is finding a vein as terribly difficult for everyone here as it is for me?  Mine have still not recovered from all of the needles involved with my original hospitalizations.)  

My CT shows no blockages.  There are some adhesions, but not in the area of where my pain is. So the ER doctor basically tells me I'm just constipated, I need more fiber, and suggests a laxative.  She sends me home with a prescription for Bentyl, to calm the cramps.  Now I feel silly explaining to waiting family members that I caused all of this drama over constipation.

That night I was even worse, vomiting horribly, and not able to "go".   Stomach swollen and tender.  

Finally, yesterday morning, I was able to "go" -  what a relief!  And it was not at all firm, not what I would expect if this were just constipation.   In fact it was very fluid.  Something was clearly blocking the path, because once it cleared, I was cleaned out very quickly.  This is gross, but I lost 5 lbs between the day before yesterday and yesterday.

I am going to see a different Colon/Rectal surgeon, as mine is now retired.  I'll see what he says,  but I'm really worried that this may occur again.  I haven't started eating normally yet.

I just can't figure out why all of a sudden after 19 years, this is happening now.  

 

 

Sorry to hear you are dealing with this too! It sounds similar to what I’ve experienced. I have to wonder too what would cause this after you have had your pouch for so long. My pain started after 2 years which seemed like a while but after 19 years I can imagine it would seem very random and strange. Keep us posted, I’m really interested to hear if your doctors figure out exactly what is going on! I hope they do! I hope you feel better and don’t have any more pain. 

Hi Disney mom--mine started after exactly 19 years too-must be a jinxed number! I hope you only have one episode and they go away which can happen--these are awful to live with. I'm still kind of bitter and trying to process mentally having to live in chronic intestinal pain--I thought that once my colitis was cured by this surgery way back when,  those days would be done  Anyway, my surgeon said it isn't unheard of for blockages to start decades after surgery--something about adhesions getting stronger over time and/or our bodies slightly shifting with age. She also said many adhesion problems don't show up--even on CT's. It's frustrating because I don't think this is something regular, unspecialized doctors know (i.e. ER doctors). Every ER dr. I've seen says "oh you're fine" (despite being doubled over in pain and puking) and 1 hour later the surgeons come in and say "no, she has a blockage". It gets old having to keep proving this to ER physicians.  Please keep us updated on how things go, and good luck. 

I feel like eating smaller meals and intermittent fasting is the only thing keeping me going.  Given normal life demands and the hidden nature of what we have going on, we're expected to behave and work like we have a normal body, but if I eat like a normal person needs to, on a normal person's schedule, my body just can't handle it.  I eat more when I actually have down time.   After any vigorous activity or exercise, I also need to be very careful and wait for things to "wake up." 

I swear, it's almost like after 30years of pouch, my small intestines all the way up to my stomach are taking on properties of the large.  It's as if they've learned to hold waste like a large intestine because I need them too!  It also means constipation can be a serious problem and lead to the ER.

After a pouchoscopy, the surgeon has determined that I have a narrowing right where the small intestines attach to the pouch.  They are doing a biopsy of that, and will treat with steroids if inflamed.  If/when no inflammation is present, he will go back in with a balloon to dilate.  I don't know if I have all the terms correct, 

 If this goes as smoothly as he makes it sound- great.   At least it sounds more promising than the cycle of adhesions and surgeries that is possible.  Of course this could be its own cycle - we will see.  

I actually feel good right now- yesterday was the first day I've felt like myself in almost two weeks.

duck11 posted:

Hi Disney mom--mine started after exactly 19 years too-must be a jinxed number! I hope you only have one episode and they go away which can happen--these are awful to live with. I'm still kind of bitter and trying to process mentally having to live in chronic intestinal pain--I thought that once my colitis was cured by this surgery way back when,  those days would be done  Anyway, my surgeon said it isn't unheard of for blockages to start decades after surgery--something about adhesions getting stronger over time and/or our bodies slightly shifting with age. She also said many adhesion problems don't show up--even on CT's. It's frustrating because I don't think this is something regular, unspecialized doctors know (i.e. ER doctors). Every ER dr. I've seen says "oh you're fine" (despite being doubled over in pain and puking) and 1 hour later the surgeons come in and say "no, she has a blockage". It gets old having to keep proving this to ER physicians.  Please keep us updated on how things go, and good luck. 

Duck- I would fear that the ER Docs think I'm just looking for pain meds, and am faking this horrible pain, when they see "nothing" on the scan.  I understand, I'm sure they have to watch out for that.   But really we all want answers and solutions.  The last thing I want is to be back on piles of drugs to treat symptoms.  I had my j pouch surgery to crawl out of my medication "haze" and don't want to go back there! 

Thanks and I wish you no more problems!

SJAN810 posted

 

 

Sorry to hear you are dealing with this too! It sounds similar to what I’ve experienced. I have to wonder too what would cause this after you have had your pouch for so long. My pain started after 2 years which seemed like a while but after 19 years I can imagine it would seem very random and strange. Keep us posted, I’m really interested to hear if your doctors figure out exactly what is going on! I hope they do! I hope you feel better and don’t have any more pain. 

Thank you- you too!

 

 

Disney mom

It sounds like your surgeon has a good idea to try to stretch the area where you seem to get blockages. My G.I. ,not the surgeon,,thought that that my blockages could be opened up at the time of the  blockage  by using a scope like a scope used during pouchscopes No one has been willing to  try this.

My Emergency visits always seem to happen late at night and I am never seen by a GI or surgeon just the ER doctor and usually just a nurse practitioner. My CT scans always seem to show the problem area is at the anastomosis (or where the small bowel joins the pouch. ) It sounds like that is where you have your blockages. If this procedure  would work for you it would be so much better than the n/g tube etc. and certainly better than the problems associated with surgery. My j pouch was done in 1998 and I have had approx 20 hospitalizations for blockages and 2 laproscopy surgeries. I hope you have success with this treatment. Would you mind sharing the name of this doctor or the state where he works. Hopefully someone will come up with better treatments for bowel obstructions than they have now. GOOD LUCK and please post what I hope is good news

 

MARJI

 

 

 

Marj posted:

Disney mom

It sounds like your surgeon has a good idea to try to stretch the area where you seem to get blockages. My G.I. ,not the surgeon,,thought that that my blockages could be opened up at the time of the  blockage  by using a scope like a scope used during pouchscopes No one has been willing to  try this.

My Emergency visits always seem to happen late at night and I am never seen by a GI or surgeon just the ER doctor and usually just a nurse practitioner. My CT scans always seem to show the problem area is at the anastomosis (or where the small bowel joins the pouch. ) It sounds like that is where you have your blockages. If this procedure  would work for you it would be so much better than the n/g tube etc. and certainly better than the problems associated with surgery. My j pouch was done in 1998 and I have had approx 20 hospitalizations for blockages and 2 laproscopy surgeries. I hope you have success with this treatment. Would you mind sharing the name of this doctor or the state where he works. Hopefully someone will come up with better treatments for bowel obstructions than they have now. GOOD LUCK and please post what I hope is good news

 

MARJI

 

 

 

Marj, I hope your Dr is able to figure out what could work for you.  The surgeon who did this pouchoscopy said he could not get the scope through the narrow portion so I guess mine could not be stretched that way, but maybe the balloon would work?  I guess we will see and I will report back. 

I am in the Richmond, VA area, and I go to Colon Rectal Specialists.  The Dr. who did my recent scope is Dr. Charron.  He seems very good, as far as I can tell, having just met him. My original surgeon who did my pouch in 2000 was Dr. Sean O’Donavan and he was great, but he has retired.  

 

Disney mom

Thanks for getting back with the information .  I have been receiving my care from the Johns Hopkins surgeons but I plan to go to New York in. August to See Dr. F. Remzi at N Y U. I had differring opinions about whether to do surgery or not  from the Hopkins doctors and I want to see what another doctor  thinks.  In the meantime the Hopkins surgeons have ordered a barium enema to see if the pouch has any leaks etc. I will post again after both.

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