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.

I've also had many obstructions. They are truly the worst. About 6 years ago I started taking an enzyme called serrapeptase and it absolutely helped dissolve the scar tissue around my anastomosis.  I could actually feel the knots within the scar and today it's completely soft.  I only took the enzymes for 6 months or less. I used Doctor's Best brand. And I've not had an obstruction since.  I do still have a stricture at the site so I sometimes still have some discomfort and distention but not 1 obstruction. 

Here's an article:

https://blog.bulletproof.com/s...ase-benefits-dosage/

Or just google serrapeptase for adhesions.

I was also doing the SCD diet along with the serrapeptase which I think may have helped as well.  But if you suffer from obstructions, it's worth a try for $20 or so.  I'm not sure if this has been mentioned before as I have not read the entire thread!

I tried them not really sure if they would work or not. I thought the most I have to lose is $20 but if they do work, I have a lot to gain.  Again this has been my experience, I don't know if it works for everyone.

Docs will almost never recommend this stuff because supplements are not studied or FDA approved like medications. 

I have successfully used full-spectrum enzymes to help reduce the pain and intestinal blockages from adhesions, following two abdominal surgeries for colorectal cancer and construction of a j-pouch. And I have far less pain and fewer hospital visits for blockages... (fingers crossed!). I take them with every meal. I use ones containing pancreatin, protease, amylase, lipase, ox bile, papain, and betain hydrochloride. Two brands I like are New Roots and Enzyme Force. And they are reasonably priced, worth a try. (I find that even small amounts of serrapeptase makes me nauseated. Guts easily upset these days. But it is recommended for adhesions.)

HI all,

I've been waiting months to go see a third surgeon on the other side of the country for another opinion. I'll let you know if anything comes of it that might be helpful to all of us with adhesion/obstruction problems. One of the tests she is doing is called CT enteroclysis (not CT enterography, which I have had.) Anyone had this before? Curious what it might show differently than the others I've had. This clinic is in Toronto and is suppose to be a leader in J pouch surgeries and IBD research/treatment, hoping perhaps they have new ideas to help.

 

Cheers.

It’s been about a year since my first experience with severe abdominal pain which seems to be from partial obstructions related to adhesions. It has been two months since the last time it happened and I am hopeful that I’m moving in a positive direction. I’ve changed my diet and am eating less carbs, more smoothies & puréed vegetables. I’m taking Benefiber twice a day. I’m taking digestive enzymes with most meals. I’m taking a 1/4 dose of MiraLax 3 times a day. I started going to a different hospital for gastroenterology care last month and I am hopeful that they will be able to help me going forward. I am also starting physical therapy for abdominal adhesions and abdominal massage this week. I’m trying so many different things, it feels like a full time job staying on top of it all. I really hope I am on the right track so that the severe pain I’ve experienced will not happen again or at least be a very rare occurrence. Wish me luck! 

Jackie,

I am going to a local physical therapist that is part of  the IRG group (www.irgpt.com). I went to my insurance company’s website & called the closest PT places until I found one that sounded confident that they could help. My first appointment is today, hopefully it goes well! I also had my first abdominal massage this week and it went well so hopefully that will help too. 

I went to Gainsville in May and had the Physical Therapy with the Clear Passage clinic.  I would love to find some place to help me maintain all that they did for me.  Clear Passage is the Larry Wurn technique.  I did therapy for a week there 4 hours a day.  I think it helped but can't go to Gainsville frequently.  They only have about 8 clinics in the US.

An unusual thing to try, perhaps, an off label use for Children's Gravol. When severe cramping heralding a partial intestinal blockage begins (lots of adhesions around small bowel), I immediately start taking children's 15 mg chewable Gravol (dramamine), which I carry in my purse. I start with three, let them dissolve in my mouth (45 mg). If cramps continue, I take up to 90 mg (6 pills). Sometimes, it seems to noticeably relax the rippling blockage spasm. To ease the cramping, I always stand up and walk right away, for a couple of hours, if necessary. (sitting or lying down makes things much worse and more likely to progress to vomiting, I find). And I do slow breathing, in and out, consciously using the diaphragm. I have managed to head off what looked to be yet another hospitalization and dreaded NG. (But if the severe vomiting starts, even with this protocol, I know that I have to go and get help in emergency) .... worth a try, perhaps.

I had bowel obstructions begin just shy of two years post-reconnect. Was told at the time if I got past two years, I should be home free. I suffered through it for about two years before taking the strong advice to have the adhesions removed. My original surgeries were at Mount Sinai NY. Adhesions were removed at Johns Hopkins about 25 years ago with no obstructions since. I do have a lot of scar tissue and adhesions still, as is typical with abdominal surgery, but nothing that interfers with bowel function.

Sjan810

Hi, I know it was as months ago you first posted about abdo pain/ adhesions. However I am currently going through a very similar experience and would value an update from you- how are you doing now, did you get a definitive diagnosis, have you had successful treatment? 

Ive suffered from chronic adhesion pain for over 12 yrs (colectomy 17 yrs ago) in June this year I suddenly developed acute, agonising lower abdomens pain requiring hospital inpatient treatment for pain. All blood work was normal, as was X-ray and CT scan. I was discharged after 5 days as pain had decreased.

then 3 weeks ago the same thing happened- I went to work in the morning- still don’t know how I managed (I do office work though so not strenuous) I had a GP appointment at noon, my GP took my vitals and found blood pressure very low and temperature slightly high.given my history she called our local hospital who advised I should visit them. This time I was hospitalised for 9 days.had I out from the pain team who put me on a Ketamine infusion as my normal OxyContin and morphine were not helping. I pushed to try oral Ketamine so I could return home, this was sanctioned however I cannot as only given 1 weeks worth as apparently prolonged use can cause serious bladder issues. So now I’m at home, taking quadruple the dosage of usual pain meds (OxyContin modified release and immediate release) Buscopan. I can barely function and am stuck in house as cannot drive or work. I’m waiting on an “urgent” appointment to see pain specialist. I’m in the UK so at the mercy of NHS waiting lists. However every single member of nursing staff/ doctors have been wonderful.

The “diagnosis “ if you call it that is acute adhesion also pain, nerve pain/ damage/ pelvic prolapse (although CT was normal) all bloods within normal values also) this makes me feel like it’s “ all in my head”” although 1 of the hospital doctors was quick to point out that if it was as psychosomatic I wouldn’t be able to converse so clearly with him while on such a high dose of OxyContin and Ketamine- he said I was remarkable for still being “compose mentos” despite the dose I was given. I’m at my wits end. Hoping against hope that someone else in this fabulous community can reach out to me with possible answers.

apologies for rambling on, it’s 2.20am and I cannot sleep - Ive been searching the web in and off for days looking for answers.

wishing everyone on this forum the very best and hopefully we all get the answers/ help we require/ desire. 

Much love and very best wishes xxx

SJAN810 posted:

Jackie,

I am going to a local physical therapist that is part of  the IRG group (www.irgpt.com). I went to my insurance company’s website & called the closest PT places until I found one that sounded confident that they could help. My first appointment is today, hopefully it goes well! I also had my first abdominal massage this week and it went well so hopefully that will help too. 

Hey I was wondering how your therapy is going?  If still doing it is it working and what type of training does your therapist have.  I am trying to find a therapist close to me and don't really know what to look for!

Wee sylv posted:

Sjan810

Hi, I know it was as months ago you first posted about abdo pain/ adhesions. However I am currently going through a very similar experience and would value an update from you- how are you doing now, did you get a definitive diagnosis, have you had successful treatment? 

Ive suffered from chronic adhesion pain for over 12 yrs (colectomy 17 yrs ago) in June this year I suddenly developed acute, agonising lower abdomens pain requiring hospital inpatient treatment for pain. All blood work was normal, as was X-ray and CT scan. I was discharged after 5 days as pain had decreased.

then 3 weeks ago the same thing happened- I went to work in the morning- still don’t know how I managed (I do office work though so not strenuous) I had a GP appointment at noon, my GP took my vitals and found blood pressure very low and temperature slightly high.given my history she called our local hospital who advised I should visit them. This time I was hospitalised for 9 days.had I out from the pain team who put me on a Ketamine infusion as my normal OxyContin and morphine were not helping. I pushed to try oral Ketamine so I could return home, this was sanctioned however I cannot as only given 1 weeks worth as apparently prolonged use can cause serious bladder issues. So now I’m at home, taking quadruple the dosage of usual pain meds (OxyContin modified release and immediate release) Buscopan. I can barely function and am stuck in house as cannot drive or work. I’m waiting on an “urgent” appointment to see pain specialist. I’m in the UK so at the mercy of NHS waiting lists. However every single member of nursing staff/ doctors have been wonderful.

The “diagnosis “ if you call it that is acute adhesion also pain, nerve pain/ damage/ pelvic prolapse (although CT was normal) all bloods within normal values also) this makes me feel like it’s “ all in my head”” although 1 of the hospital doctors was quick to point out that if it was as psychosomatic I wouldn’t be able to converse so clearly with him while on such a high dose of OxyContin and Ketamine- he said I was remarkable for still being “compose mentos” despite the dose I was given. I’m at my wits end. Hoping against hope that someone else in this fabulous community can reach out to me with possible answers.

apologies for rambling on, it’s 2.20am and I cannot sleep - Ive been searching the web in and off for days looking for answers.

wishing everyone on this forum the very best and hopefully we all get the answers/ help we require/ desire. 

Much love and very best wishes xxx

It sounds like you need to have adhesion removal surgery.  I do believe that physical therapy like they do at clear passage makes a huge difference as well.  I had my last adhesion surgery in December of last year and then in May had the Clear Passage therapy done.  I was taught how to do some of the therapy on myself and try to do it often to keep the adhesions from causing problems and keeping them loosened up...if that makes sense.    I am currently trying to find a physical therapist closer to me that does internal scar tissue therapy because it does really help.  Do some research on it and talk to your doctors about considering prescribing this therapy for you.  Good luck and I hope you get some relief soon.   Blockages are miserable and scary and so very painful.  I wouldn't wish them on my worst enemy.  Hang in there!  and know that I pray for you and all of the folks on this page!

I am sorry that you are still having so much pain. When I have obstructions the only drug that seems to help is Dilaudid I.V. also anti nausea medicine.. I have a j pouch and one doctor thinks that it becomes twisted at times causing the obstruction. The other doctor thinks that adhesions are causing the obstructions. Adhesion surgery in the past did not take care of the obstructions for me.   

 

I've been able to adapt somewhat and mostly avoid full obstructions over the past 6 months by managing my diet. I've had obstructive symptoms, but been able to pull myself back from the edge (meaning either just a partial obstruction, or a full that lasted less than 4hrs or so).  Im constantly thinking about what might get me into trouble and reacting to it.  Hope it's more than luck.  Going to keep trying.  Surgery for me last resort.  I just hiked the grand canyon, going on 33 years with pouch.

Wanting to offer some hope.  Despite improvement from revision, still have problems going and am in discomfort everyday.   Diet, exercise, stress reduction help with symptoms of indigestion because of functional issues.  Surgery is never easy and there are always risks, my back was against the wall and revision to s-pouch was mostly succesful and easier than first rounds of surgery but still hard.  FODMAP diet is great.  Also when and how much to eat sometimes takes priority as does what you choose.  So much trial and error, always taking mental notes and experimenting.

I would like to offer another possibility for the root of your abdominal pain. I was in the hospital for six days when doctors discovered fluid collecting in my stomach once again. Except this time it was not ascites, which I was successfully treated for a year and a half ago or so.  Radiology discovered five sacs along the lining of my stomach that would fill up with fluid.  The on call colon team felt it was pushing against a section in my small intestine that was already twisted, thus causing pain.  They drained me and I felt significantly better and could go to the bathroom with much ease again.  They decided to schedule a very weird procedure that no one, not even my colon surgeon, has heard of. It was suggested by a gynecologist who originally thought I was filling up with water due to an ovarian cyst (he now doubts that).  He has a patient who is in a similar situation (thank goodness for her!), therefore he was able to help me figure this out!

Within six weeks I filled back up again and by the time my appt came around, I already had 300ml of fluid inside of me again.  I can tell when I fill up because it is harder to go to the bathroom, and my stomach is concave after they drain me. Now I understand why bodybuilders take diuretics before they compete. You can see abs! The procedure is called a CT assisted pelvic cyst drain, I believe, and they go into your pelvic area while you are under twilight anesthesia, drain you, insert some type of liquid to burn the cysts to keep them from filling with water, then after you awaken they roll you around like a rotisserie chicken for a few hours while the liquid does its magic, then you are drained again and good to go home! There's a 30 percent chance the fluid will come back, which in that case they do it again with an even stronger liquid, and again if need be until they knock it out.  This is considered the conservative approach before they decide on surgery.

The bad news is it burns like HELL!  The good news is IV Dilaudid kills most of the pain and knocks you out while they rotisserie chicken turn you on each side.  

It's only been three weeks and I'm waiting to see what happens after my period, and to see if I fill back up with water. So far so good!  I am crossing my fingers and hoping it's successful.  I had hernia surgery for an incisional hernia several weeks ago and will probably have to get a revision because it still pokes out.  If I can knock that out AND not have fluid collect once again, I might have a great 2020!

If you are feeling bloated, you may want to have your doctor schedule a scan to see if you have fluid in the area. I would have never dreamt of such a thing happening because it's so odd.  I joke with my friends that I took out the alien sacs in order to save Earth and that I was almost the Mother of Aliens.

 

Sylvia, thank you for reaching out, I’m sorry to hear you are having similar problems! Your pain sounds awful and I’m so sorry to hear you are going through that! It’s been almost a year a half since I first started having pain that comes and goes on my lower right side. I’ve seen several different doctors and my latest one thinks there could be a narrow spot in my small intestine where my stoma used to be so next month he is going to do a pouchoscopy with a smaller pediatric scope so that he can go further up and look at that spot and dilate it if necessary. I had a loop ileostomy while I was waiting for my j-pouch to heal and he said when it’s stitched up and put back in then that part of the small intestine can be a little kinked and not perfectly smooth like it used to be so it can create a narrow spot that food can get temporarily stuck in causing partial obstructions that resolve on their own when the food finds it’s way through. This would cause pain but wouldn’t necessarily show anything on tests. If this is what he finds and he’s able to fix it that would be great! If he takes a look & finds nothing unusual then we’re back to the idea that I’m having partial obstructions because of some sort of adhesion interference. Initially when this started happening the pain was unbearable! It’s still happening every 1-2 months but now the pain reaches about 7/10 instead of like 12/10 and only lasts an hour or two instead of lasting 5-8 hours. I think the reason for the improvement is related to changes I’ve made such as eating smaller meals, eating less bread, rice, pasta and other things that cause thicker stool and taking Miralax every day (these were all recommendations from my doctor). I tried physical therapy once but the therapist didn’t seem to be very knowledgeable about my issues even though I was told she could help me when I scheduled the appointment. I was feeling overwhelmed by the number of different kinds of appointments I was going to so I haven’t been back. I have been seeing a massage therapist that has been doing abdominal massage and that has been interesting because she has been able to pinpoint the area of the pain and replicate the pain by pushing on certain spots. I’ve only done this a couple times so I’m not sure if it is helping yet but it doesn’t seem to be hurting anything so I’ll try to keep up with it and see what happens. So, that’s where I’m at. Most of the time I feel okay but when I end up in pain and don’t know why it is really stressful and frustrating. I will keep searching for answers! I hope that you feel better soon and I hope that you find the help you need too!

 

Jackie, I did see a physical therapist once but haven’t been back. I found the one I went to by seeing which ones were covered by my insurance and calling around explaining my situation & asking if they could help me. The one I saw was nice but didn’t seem to know a lot about what I’m dealing with. Maybe she could have helped me if I stuck with it but I needed a break from having my life revolve around appointments. I did the same thing with massage therapists and I’m liking that better than the physical therapy for now. I wish there were more therapists that worked specifically on these issues but they seem to be pretty hard to find so I just looked for someone who knew a lot about the body and how everything is connected and who felt comfortable working with me on that area. I hope you find someone who can help you!

 

Marj, I tried to find help for the pain itself since no one has been able to fix whatever is causing the pain and I just seemed to run into a lot of dead ends. After pushing a lot I was given a low dose of oxycodone but my doctor was super reluctant to give it to me and said he wouldn’t give me any more and recommended not taking it. I tried it a couple of times when I was in pain and it didn’t help very much. I was also told by other doctors not to take opioids because they cause constipation and will make it take longer for the obstruction to work itself out so even if I could get something that would help with the pain I’m scared it would make things worse. I was finally sent to a pain specialist who said he didn’t know what to do with me because he’s used to treating people with chronic back pain and things like that. He prescribed me methocarbomol, a muscle relaxer and when I asked how that would help me he said something about how there could be a placebo effect from taking it and that might help me. That was really frustrating! I never took it because I didn’t see the point. He also offered to prescribe medications such as antidepressants that can help with nerve pain even though he couldn’t tell me how that would help this situation. I’ve reached a point where I don’t think I’m going to get any help with the pain and I just have to find a way to get through it mentally when it happens, which really sucks!! I don’t know what else to do though. All the doctors I’ve seen seem to be so freaked out by the opioid crisis that they won’t even acknowledge or discuss the pain itself.

 

CALIFORNICATION, wow! I’m so sorry to hear you are going through this but also really happy that you were able to find out what was wrong! I’ve never heard of this so it is a really interesting to hear about a new theory of what might be causing this. I do get bloated a lot. I’ve figured it’s just because there’s not as much space for anything to go since my large intestine is gone but I’ve also wondered if food and liquid builds up sometimes and then causes obstructions and/or puts pressure on certain things which would cause pain. I have had a lot of scans, CTs, ultrasounds, an MRI, etc, so I’m wondering if it would it have shown up already if I had this, but maybe not. I’ll have to ask my doctor about this. Thank you for sharing what you’ve been through, I hope you feel better and have a great year in 2020!

 

Thank you everyone for your input & responses. I am really grateful to have this community to talk to.

Shaina

Shaina, many thanks for your response. It’s been very educational reading all the varied experiences on this thread alone. 

Once my heads a bit clearer I’ll read through all the reply’s again and hopefully be able to investigate some of the suggestions. Since I’m in the UK I don’t have the same level Or variety of health specialists to consult. The main huge advantage of our National Health Service is that treatment is free of charge at point of administration (however all employed people up to retirement pension age pay National Insurance contributions deducted direct from wages- it’s certainly not a lot of money!) in Scotland where I live even our prescription charges have been abolished. Obviously the knock on effect is that there’s just not as much funding available for the NHS to provide the same variety of specialists as there are in some other countries.

Thanks again, very much appreciated. 

SJAN810 posted:

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 helpingSo far this has happened once every few months since it started, even with dietary changes.

Thank you again!

 

Hi. Sorry I’m new to this site and I think I posted something I didn’t mean to. I have had over 25 surgeries I’ve had 3 j pouch’s made and my last one is doing great. First thing is “ I think “ unfortunately scar tissue is undetected in a scan. Also as they cut through scar tissue it grows back. Scar tissue can be very painful. I hope you can find answers I was lucky to get to to to the best in Cleveland Clinic. I’m here if anyone has questions and I’m getting so much great information from everybody. Stay strong ❤️💪🏼🙏🏻

Hi Ashley, welcome! Thanks for reaching out. Wow, I can’t imagine having 25 surgeries, I’ve only had 3 and that seemed like a lot! I admire your strength. Thank you for your encouraging words. I hope we will all find answers and figure out what we need to do to get better and avoid ending up in pain. I’m really hoping my pouchoscopy next month reveals something that is fixable/treatable so I can get better. 

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