Alisha-

I'm sorry you're going through this. It sounds awful. 

You *must* try to stay hydrated. The only good thing about dehydration is that it's something the ER can treat. There are plenty of very bad things about it. Try *very* frequent sips of water (or a proper rehydration solution, like pedialyte or one you mix yourself, not Gatorade), and pay attention to how light your urine is (or isn't). Stay away from solids until you're pretty sure they'll go the right way.

I'm not convinced that this whole episode is a simple blockage, but the ER will never be competent to sort it out - they simply lack the training and experience. 

Most people in the US can now get affordable health insurance (or Medicaid), regardless of their income. You're in South Carolina, which chose to close off that option for about 200,000 people, but hopefully you haven't fallen into the hole your state government dug for its citizens who make too much money for Medicaid but too little for subsidies under the Affordable Care Act. I strongly recommend that you explore this option for next year during the open enrollment period starting in November. Please don't hesitate to ask about this (publicly or privately) if you have questions about how to proceed.

Hi Alisha,

So sorry, this sounds horrible.

What you are describing could very well be a blockage that resolved itself...the vomiting up everything from the day before then emptying everything out from the other end once it opened up sounds familiar...

So, I would suspect that you are right...but the real question is, What is the cause of the blockage? What is the origin?

It doesn't sound like it was food related (roughage blocking up the guts) more like either a swelling or narrowing of a zone. It could be due to post op adhesions or a gut twist. Both cannot be 'fixed' without a surgeon being involved.

If it doesn't happen again then you are home-free but if it comes back then you need to consult. 

I agree with Scott, you cannot count on ER to know what to do about it...they are not specialists...you need your G.I or surgeon to at least take a peak at some studies (IRM, Scan or at least a bowel study with contrast)...they may be able to diagnosis it that way.

I am usually very sore for about 3-5 days post blockage but that is me. I have 2 spots that get blocked up. 1 is a loop of bowel that keeps getting adhezed to the abdominal wall (it is stuck again!) and the other is an old surgical site that must be either narrowed or glued together with adhesions. Both have been fixed at least once...

There is also the possibility of it being a hernia that has emprisoned a loop of bowel (they can get stuck inside of the hernia).

All of this does not help when you are in the middle of it. The only thing that you can do is try to keep down fluids (I like ice chips), keep your body moving as much as possible (walking, bouncing on your toes or on a pilates ball, stretching a little bit...) and use heating pads to ease some of the pain...And wait it out.

My personal rule is 27hr...beyond that I head for ER...scream occlusion, tell them that I have a pouch and that I have been operated numerous times to give them a heads up...and pray that it opens up before they pull out the NG tube!

The only med that I have found that works for me, at least moderately is Gravol...I take it either in low dose chewable or injectable...it stops those 'contractions' of the gut and allows things to loosen up a bit and relax...it also allows me to sleep.

Good luck

Sharon

Thank you for the advice & I completely agree with you about the dehydration. Because if everything going on, in chronically dehydrated in terms of water volume, but my electrolytes are usually pretty good because I try to stay vigilant about getting something down & using Pedialyte or other solutions. Sometimes I just can't get on top of it, and that's usually that's when I go to the ER.

I will definitely look into open enrollment. Once my savings ran out & I could no longer afford my COBRA premiums, I was basically told I was just out of luck. According to my local DHHS/DSS offices I don't qualify for Medicaid because I have no dependents, despite the fact that I have NO income. I have to wait until I'm declared officially disabled by the SSA, which has taken years only to net 2 rejections. When I last looked into healthcare.org (I think that's the site) the cheapest plans were almost $200/month & wouldn't cover a quarter of the visits/prescriptions I would need. People keep telling me I should be able to get help, but I've failed numerous times going the normal routes. My quality of life is in the toilet, literally. I HATE having to rely on the ER, but my former practices won't even let me schedule an appt without hundreds of dollars upfront. I'm barely scraping together the $30/month & $75/visit every other month to see my PCP to at least get my prescriptions. I've found a local charity pharmacy that covers several (synthroid, dexilant, Cymbalta, Zofran, Celebrex) but I still have to pay out of pocket for Cipro/Flagyl, bentyl, pain medicines, triamcinolone & Nystatin, etc. That's not counting the meds I just had to discontinue like Cimzia, which I probably need more than anything, any immunotherapy, all of my supplements for malnutrition (B-12 shots, iron infusions, vitamin D, etc--I take OTC vitamins, but many of them aren't effective as I absorb very little) & a host of other drugs they were trying or were prescribed as-needed. Basically I'm in bureaucratic hell. Not to mention the stress of trying to self-diagnose. I've gotten pretty good at it, but I have no clue when it comes to be symptoms like this, or multiple things that may or may not be related. It's depressing & overwhelming. So yes, I'd love any advice or direction on

getting some specialty medical care again. Or, for today, some ideas about what to try regarding these latest issues.

Thank you Sharon! I've never heard of Gravol, but I'll definitely look into it. I've never had any kind of major blockages. There have been a few times where I felt something wasn't right, but a few days of  the good old liquid diet usually resolved it. Since you're more familiar, maybe you can understand the CT findings...? The ER docs didn't seem concerned. But given all this I'm doubting their competence with these issues. The CT report says: 

Intestines: Subtotal colectomy with ileorectal anastomosis.  The terminal portion of the ileum, immediately proximal to the anastomosis is abnormally dilated and its walls are thickened. More proximal small bowel segments are normal in size with normal mucosa. No evidence of anastomotic dehiscence or fistula formation.

Other: No free air. No pelvic adenopathy. There may be a trace amount of pelvic ascites.

The abdomen x-ray a few days later just says: 

Findings: There is a gas filled dilated loop of small bowel in the right lower quadrant. This contains a fluid level and appears to correspond to the CT findings on 8/27/16. There was no evidence of pneumoperitoneum, organomegaly or mass effect. There is a suture line in the pelvis. 

Does any of this make sense to anyone in light of my symptoms since? And should I be worried they didn't pick up on my fistula between my anus/pouch & lower vagina? Because I definitely have one, but it's super close to the front bottom of my vagina. I also have another one that mainly involves the area just beside my labia, but I don't get nearly as much stool drainage from that one.

Thanks again for the advice guys!! I love this site.

Gravol is just Dramamine. Sharon is having success with it for a non-standard usage, but I won't argue with success.

Your imaging studies do show a blockage, but it could be due to a stricture (scar tissue), which (if you have it) won't usually get much better without treatment (though backed-up food may work its way through the narrowing). Some people self-dilate strictures, but that would be extremely dangerous without a proper diagnosis, localization, and especially instruction in how to perform it. Self-dilation almost always is done only  to maintain an opening created by a more aggressive dilation in a medical environment.

In South Carolina the Medicaid program for single individuals is the Medically Indigent Assistance Program (MIAP). It looks like the toughest criterion is that you can't have more than $500 in cash to qualify. Other states are *much* more generous, but moving is awfully expensive. Healthcare.gov can only offer subsidies to individuals who earn at least (very approximately) $15,000 yearly.

Perhaps you can find a free clinic with a gastroenterologist? Here's a South Carolina-specific web site listing free clinics: http://www.freeclinics.com/sta/south_carolina

Good luck! I hope you start to feel better.

Scott, you're awesome! Thank you so much for the information. I will definitely check it out. Sadly, I may qualify for the MAIP, but I've never heard of it. But, SC isn't the most progressive & finding information can be tricky. 

And thank you for help interpreting my results. I knew it didn't sound good, but I've felt bad for so long I only recently noticed symptoms severe enough to warrant an ER visit, then I've felt so bad since then that I haven't been able to make heads or tails of it. I truly appreciate your help!! 

So far I'm doing OK with sips of water & grape juice. I keep saying I'm gonna try some soup or yogurt, but frankly I'm afraid. I mean, how do you know if a blockage has resolved enough to eat? Guess I'll have to put on my big girl panties soon & just try something. The hunger is starting to come back a little! Then if I can't tolerate it maybe I'll try a different ER for some fluids until I can maybe get in with a specialist around here. My CR surgeon's nurse finally returned my call & said I need a GI referral. When I explained they wouldn't see me either, she was at a loss, but did follow up with someone in their office who gave me a number for a financial counselor for the hospital he is affiliated with now, so maybe I'll get some good news tomorrow....?

Again, thank you so much! Today was depressing, but you guys were a little ray of sunshine!

Sometimes the simplest way to get on Medicaid is to get hospitalized. I know how horrible this sounds, and I can't believe what we've created, but once the hospital realizes it's the only way they'll get paid then their experts get the ball rolling. That financial counselor might know exactly what you need to do, if they can spare the time.

Hi Alisha, 

When it comes to these things, I listen to Scott.

He knows so much more than I do about most of it...I believe that he has worked and studied in the medical field where I only have my own, personal and very limited experience.

Gravol or Dramamine is a motion sickness medication that you are usually given for car-sickness or and travel sickness. 

The also give it to you in the hospital for severe nausea and vomiting. That is where I was first introduced to it.

I noticed that if I took it before getting on a plane that I could fly nearly the whole transatlantic trip without too much urgency. It made a world of difference to me.

I also used it for what I thought were middle ear infections when I had horrible dizziness (turned out that it was epilepsy...but Gravol still works great for that too on me).

Seems that anytime that my guts are in knots (literally) I can take Gravol (I start with a small, child's dose and work my way up) and get quite good results. My doctors now prescribe it to me in injectable form for severe blockages...it slows the peristaltic rhythm and allows my guts to calm down.

As for when you know that you are ready to eat...well your guts will tell you.

If I still have a full blockage, I throw up everything including fluids. A partial blockage means that I can get liquids down but solids cause the horrible cramping to start up again and the nausea follows. 

If it is very minor then I know that soups and soft foods will pass but I avoid roughage and breads or anything that could block me up.

Even once it passes I allow a few days before I try to eat normally.

Good luck

Sharon

I have had over 50 blockage in my 33 years with my Jpouch. 25-60 mg of Phenagen with 25-50 ml of morphed helps release the blockages. After 3-4 shots of this in the ER and it doesn't stop it then the ng tube goes in. This works 95% of the time. Good luck to all. 

Yeah, just to follow-up on this one (since I kinda forgot about it): I had both a pelvic floor abscess that resulted in a 14-day hospitalization followed 3 days after being released with a major intestinal blockage due to stenosis (scar tissue) of my small intestine. I also had heart issues while I was admitted & had to be shipped to MUSC for surgery, including a pouch revision that was done on November 8th. (I remember because it was election day & I honestly thought I was misunderstanding the results because of the anesthesia!! ) It was awful though. I lost almost 2 months of my life & 20 lbs & another foot or so of small intestine.

The only bright spot (if you have dark humor like me) is that apparently I've finally qualified for disability! I have a meeting about Medicaid (I think) next week. In the meantime, none of my old doctors/specialists will see me & new doctors keep telling me my "case is too complex" & other crap that sounds (& smells) suspiciously like BS. I don't know what to do about that. Has anyone else had problems just being seen? I honestly don't know what to do with that situation. I've tried referrals from my PCP, the medical team in Charleston (MUSC is over 3 hours away & I don't have a car; plus, the GI doctor there that I loved & was willing to bum rides to see left for Florida at the end of June!!!!) & the ER as of Tuesday. WTH?!? How is that not discrimination? And what do you do in this situation? I'm a natural problem-solver, but I'm just stumped!

Also, after I lost it Tuesday night & bawled in front of my poor Dad, he called me yesterday & said he bought a lottery ticket & if he ever wins big he wants to establish a foundation for people like us with Crohn's disease & j-pouches or IAAPs get to places like the Cleveland Clinic!! Maybe you have to know my dad to appreciate what a thoughtful gesture it was (he usually sums up my condition by telling people "her guts busted on her" because that was what he retained from the surgeon's status update when I had my emergency colectomy back in 2004) but it's one of the sweetest things he's ever said to me!!! So, cross your fingers that he picks some winning numbers! <3

Well that is quite a journey Alisha, thank goodness you've pulled through...

Scary...very scary...at least you have come out the other end...(pun intended!)

I have the same fantasy....I would endow a trust to teach surgeons to make k pouches,  get worthy patients from around the world to hospitals that can do them and open satilite clinics around the world to bring k pouches to everyone who wants one...around 30million dollars to start with...nice dream....hubby just wants to spoil the kids! 

Stay healthy 

Sharon 

Yes, that's a great idea! I've definitely got my fingers crossed that one of us will get a financial windfall or find a billionaire with too much money on their hands & a passion for medical philanthropy!! I've thought of writing to Oprah or Elon Musk or one of those types; maybe if I get to feeling better I'll start a letter-writing campaign. I'm continually amazed by the strength & kindness found on this forum & I think Jan or Scott or you would be amazing chairpersons for a cause like that!

On a more depressing note, has anyone heard of a hydrosalpinx or pyosalpinx? I've been trying to translate my latest CT scan. I started to google, but my emotions aren't quite ready for the inevitable bad news. 

I hope everyone is having a nice Friday!!

Yes, if I am not wrong it is an infection in the fallopian tube or tubes.

It can go from mild (!) To life threatening and painless to horrendous pain. It can sometimes be treated with antibiotics or requires surgery.

I had one back in the 90's that was radically painful...we tried antibiotics and pain meds but I ended up in O.R.

They did not remove the tube but opened ithe up and cleared it out and left it to "close itself" in the hopes that fertility could be restored that way...then they put me on a 3 yr course of progesterone to stop my periods dead. (I gained a ton of weight).

By the way , It was diagnosed as salpangitis due to an ectopic pregnancy. 

Hope this helps.

Sharon 

It does & it confirms my suspicions that none of the doctors treating me ever listened to, much less helped with. I'm certain it's from my vaginal fistula. It constantly drains stool into my vagina. I've been insisting that there had to be consequences, but I haven't had a pelvic exam in the 5 years since I've lost insurance. It's definitely not a pregnancy, since I haven't had sex in years. (Another thing I've been robbed of by my disease & crappy medical care, but that's another story.) Worst, the surgeon who created the fistula with an idiotic seton placement I wasn't even consulted about prior to the outpatient surgery in 2011, now refuses to see me. What a bastard. Apparently he cursed out the ER doctor for daring to call him Tuesday night & informed him (not me, despite working for the past 11 months to get a single appointment with him, jumping through numerous hoops like getting enrolled in his hospital's patient assistant program so he could get paid, the reason I wasn't able to get a single appointment after I lost insurance, & getting the surgeon in Charleston to fax all my records to him months ago & calling his poor secretary weekly to see if he deigned to at least offer a consult appointment) to tell him he refused to see me anymore. 13 years of treatment & he leaves me in the lurch now. People can be so needlessly cruel. At this point though, I wouldn't let him touch me if I were on fire, but I can't lie & say the betrayal doesn't sting.

At any rate, I'm ever so grateful for your help. You guys have been amazing. I find that I have to search for silver linings in my life of misery, but thankfully they're always there once the initial pain & shock fade. You & the people on this site, are a beautiful, shining, brilliantly gleaming silver lining. <3 <3 <3

I wonder if the fistula could be confused (on CT scan) with a hydrosalpinx. This would be a much greater risk if the radiologist didn't know about the fistula.

The doc & I discussed this actually, but the radiologist knew & still disagreed. (The ER doc was openly annoyed because he apparently wouldn't change his opinion despite the doc's insistence, actually.) And it makes terrible sense to me. See, while I was at MUSC, they did all kinds of tests, MRIs, CTs, x-rays with special contrast, etc. My fistulae (I actually have several, the main one at the entrance of my vagina being the most severe, but there's also a small one beside my anus & a huge one that I think has connected 2 others to form one giant on my left labia.) were too superficial to show up on any of the tests. It was quite disconcerting, because even sick & doped up, I KNEW they were there, but worried no one would believe me because I was brand-new to this facility & set of doctors. Thankfully, the surgeon confirmed the extent during the laparotomy & pouch revision. Granted, nothing is certain, but surely stool (always, always as thin as water) leaking into my vagina 24/7 the past 4+ years would have to have some kind of effect on my reproductive organs. No one would listen though & I haven't pushed it while waiting for insurance because other things always seemed more pressing. I've been on Cipro or Levaquin pretty much continuously though, so I bet that's kept things semi-calm. Until now. I've also started an immunosuppressant (azathioprine) for the first time EVER back in April, so it's probably weakening my body's ability to fight off what's going on in my pelvis. (I feel like it's PID, just not caused by normal stuff. Feel free to correct my sparse knowledge & assumptions though, PLEASE!) And in the interest of full disclosure, I've always had problems with ovarian cysts & the latest CT scan confirmed I have huge ones on both ovaries currently. 

Isn't my life grandly fun? All things considered, I know I'm lucky. I've survived a lot of things that could have killed me & I've managed to keep my pouch. Still, I can't lie & say I'm looking forward to this next chapter. Even with insurance, no doctor wants to touch me. So far I've been rejected by 17 doctors/facilities & I don't think the are many left in this state. I really don't know what to do about that. It's never occurred to me that I could be denied medical care even with insurance. I'm still grateful for the Medicaid & disability, but it didn't seem to be the problem-solver I'd built it up to be. Worse, I had a plan for getting insurance, even if it took forever & was humiliating. This new problem with getting a doctor to see me completely baffles me. Any help or advice is greatly appreciated & hugely welcome!!

I truly adore you guys though. It's such a relief to be able to connect with people who understand the terminology & suffering & frustration. <3