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I've had my pouch for 6 years without issue after 10 years of pretty severe UC. Last week I travelled from NYC to Vanuatu (near Fiji and about 30hrs travel time from NY). On the flight here I experienced pretty bad bowel pain after my meal at JFK airport reminiscent of my intestinal blockage before my reconnective surgery for my pouch. I've continued to pass liquid stool all along. The pain subsided after day 1, but the diarrhea has persisted for about 8 days. I've been working in the sun and drinking as much liquid as possible (careful about food but had to eat some locally as we were in remote locations at times, and only drinking bottled water). 32 hours or so ago, I woke up in the middle of the night with severe bowel pain and tenderness. I threw up once. The local doctor arrived and gave me a narcotic for the pain, called an ambulance and I was taken to a local clinic where I was given IV fluids due to dehydration and started on Cipro. An X-ray was taken and the local doctor does not believe I have a blockage. My guts are very sore. I'm passing liquid stool and able to drink and have been in touch with a GI on call from the practice I use in NY. I missed my flight home and my new one is 5p tonight, in about 6hrs. My GI wants me back stateside, and I think this is best given the very limited medical care here. I'm going to try to get another round of IV fluids from the clinic before my flight. I have taken 3 doses of 1000mg Cipro but so far no relief. I'm still able to keep down liquids but they run through me.

Any advice here on navigating developing countries in this condition and getting on flights? Anyone experience similar symptoms? Could this be twisted bowel? An infection in my small intestine from food poisoning? Partial blockage? Pouchitis?

I'll hopefully be back in the States soon and get checked out but would love additional guidance in the meantime from anyone who has experienced something similar.

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Jovic that's a very difficult call. notwithstanding your passing stool, it sounds like some kind of blockage if only partial. blockages can be from several causes perhaps including your guess of twisted bowels.

my first severe obstruction occurred the evening before I boarded a plane in San Diego back to NYC. I was passing nothing, I was bloated. in hindsight I should never have boarded that plane as I was fully obstructed, but I didn't know any better. I spent the first half of the flight puking bile and arguably fecal matter from my intestines. yes it was that bad. I finally passed out, some medical miracle person aboard the flight started a small IV and they offered to land the plane in Chicago but I waved them off. Went to ER right off the plane to lovely Jamaica Hospital (not really lovely), CT scan confirmed obstruction, was transferred to my surgeon at NYU in the morning and had SBO (small bowel obstruction) surgery that afternoon. The pain literally rendered me unconscious.

I'm not convinced that getting on a plane is the best idea, the pressurization undoubtedly probably exacerbated my puking but I candidly have no better recommendation for you. Xrays can hint at but not necessarily definitively indicate nor rule out an obstruction.

but I guess if you are in touch with the GI, and he is suggesting you get on the plane, you have your marching orders. good luck I hope it eases up and you have a safe flight.

 

Jovic, you may already be on your way - if so, travel safely. This sounds nothing like Pouchitis to me. The recurrence makes me think an obstruction seems more likely than food poisoning, which (usually) wouldn't have improved over 8 days and then worsened again. 30 hours is a long trip, so it may be difficult to stay hydrated. Just do your best. I hope it clears up for you spontaneously.

Last edited by Scott F

I suggest that you make sure to get up and walk around the plane frequently on the way home.  Even if it is just to the restroom. Also see if you can get coconut water to drink for hydration. I always have to add a bit of orange or pineapple juice to mine. Gatorade or similar products will help fight dehydration but they with have too much sugar or too much artificial sweeteners.  They are good in a pinch.  V8 juice is good hydration as well. I hope your trip back is uneventful.  I have heard of obstructions happening even with passing of some fluids. 

Good Luck! Please let us know how your trip home goes.

Last edited by TE Marie

Thanks everyone and sorry for being off the radar. I've been swept back into the good old medical industrial complex, and I also stupidly had my notifications for the forum turned off.

I made it back to the States after a two day delay from symptoms. I went back to the clinic and got another round of IV fluids the morning of the flight, including one with glucose, and also found a box of "Enerlyte" electrolyte packets in a pharmacy. The flights were long but my employer generously flew me back business class for the 10hr leg so I was able to lie down and get some rest. I walked around as much as possible and barely ate, just in case. Just lots of fluids. I saw my surgeon's colleague the day after I got back, basically the first visit I could get and he  put me on a round of Flagyl and Levaquin for 10 days. I also got a CT scan which showed some inflammation on the upper left side of my small intestine and also in my pouch. I followed up with my GI who ruled out a blockage and sent me straight to a pathologist. I've since done 2 stool tests and had blood work twice. My inflammatory makers in my blood are elevated and both stool tests are negative. My GI seems to think it could still have been some bacterial infection. Since I started antibiotics before the test (sadly) a negative result would actually make sense. I was doing much much better on the antibiotics, cramping mostly gone and 6 BMs during the day, 1 at night with good form, but now a little diarrhea again last night and some minor cramping yesterday and today. Tomorrow is my last day of antibiotics. I feel it's a little par for the course to be off my usual digestion given the circumstances, and now I've been basically pouring bleach on my small intestine so it's likely my gut flora is off. I'm taking Florastor with my antibiotics and eating really bland plain foods. I'm also fairly convinced that I'm having a rough time digesting gluten right now. That's all that really changed between my improvement and now the recurrence of diarrhea and some watery stool. Who knows. I've never been tested for Celiac, but my Uncle had it as a child. No urgency though and the cramping is pretty minor. I'm 10lbs lighter but overall doing much better. I have my first pouchoscopy on Tuesday, so we'll see. This could all have been really bad dehydration combined with pouchitits I suppose, and my guts got all cramped and swollen, which I'm sure is going to take some time to calm down. I'm trying to reach my GI to find out if taking some immodium and maybe Metamucil is ok. I had been keeping up with the Metamucil but fell of the immodium train a few years ago, which was probably foolish, and may have added to my dehydration. In the meantime I'm trying to ward off the good old "UC mind games" we can all play on ourselves.  

So glad that you made it home safely...keep as physically active as you can without overdoing it...slow walks, getting up every hour if you are sedentary and walk around the room...stretch upwards on your tiptoes...I know that it sounds dumb but still it helps with keeping things untangled and moving around nicely.

I had a very minor (compared to you) blockage while away thing Christmas...I hate getting sick in a foreign country and to add to the complications, I did not speak their language very well...so I stayed away from the hospital (until hubby got taken out in an ambulance but that is another story).

I kept stretching, walking, floating, doing yoga positions etc...keeping to soups and fluids...anything to help it to pass.  It took a while but eventually did.

There is nothing worse than getting sick (while away) and not knowing exactly what it is.

Please chart your Temp, your output, your cramping...if it comes back it may very well be something that the antibiotics were masking...do not wait to go back to the G.I. if it goes down hill.

By the way, from now on, travel with a pouch full of supplies, antibiotics and pedelyte or any other supplements that you may need.

Having your medical file on a data stick and some x-rays and scans will help for future reference if or when needed.

Stay healthy

Sharon

 

So glad you made it back here safely.  I travelled a lot in my younger years with pouch - did fine - what a miracle looking back! As you can tell, your friends here on the forum are all thankful and relieved you made it back and you are very educated regarding things to do as you recover - as in - in a nutshell - once it all gets thrown off balance - it just takes time and slowing building up foods to get GI flora, etc. back in balance.  I've had this type of thing happen here in the states twice - but not far away.  I am just so glad you are home.  I get so mad at the USA medical industry at times - and then I hear a story like this - and I remember how fortunate we are to have it - with all its many flaws - and we are incredibly fortunate if we can pay for it. Take it easy and I hope you give yourself some time to recover/work part time at first...I was one to dive in too fast and get all bent out of shape over how behind I was at work...I was always afraid I'd get fired or something - the chances of that happening, looking back, were so very slim.  So take care of yourself- sounds like your boss is a good one if he/she flew you back in business/ or first class.  Take care!!

Thanks all!

Overall my energy level is much better. I think I can't digest gluten at the moment. I've been stretching and walking and rode my bike gently as well. I'm sure my gut flora is off. I've cut out gluten for the past 2 days and my pouch function seems better. Yesterday 7 BMs and 2 last night. I'm still passing some very watery stool maybe every 4 BMs. I'm about to submit my 3rd stool test, but I guess results for C. diff and other pathogens could be masked by the levaquin and flagyl. I just finished that course last night. Hopefully that knocked out whatever was in there, because if it didn't it's probably antibiotic resistant. My pouchoscopy as I said is Tues so that's good. I have to work on Monday and my job can be quite physical. I freelance and have 2 kids so taking the day off isn't really on the table especially with the recent medical costs I've been racking up.

My big concern at the moment is the consistent sharp ache I have that feels like it's just behind my bladder. If I press gently on my belly while lying down it feels quite sore there. I have the feeling of needing to urinate more than usual. Does this sound like pouchitis? I passed a kidney stone about 4 years ago after a trip to Charleston that resulted in dehydration. Nothing like this most recent episode. Passing that stone ranks among my tops for pain experienced ever. This pain feels oddly familiar to the lead up and it follows a bout of pretty severe dehydration so I'm suspect it could be another stone. I don't think my GI would look for this. I had a CT scan performed last week on my abdomen. Does anyone know if those results would also have mapped my kidneys and bladder???? I'm sure if it did the tech and Doctor at the facility weren't looking for kidney stones based on my initial symptoms.

Of course I'll head to the ER if that knee buckling, stone passing pain comes back.

I'll mention this to the doctor on Tues and hopefully the pouchoscopy can determine what's going on in there. 

I'm glad you made it home without getting worse. It's hard to tell what is causing our pain or even where the pain is originating from some times. I've been having too many UTI'S recently so when reading your post I am wondering if they have tested your urine for an UTI. I have been to the ER 2 times with the underlying pain problem being a UTI. I never had much pain like this with UTI'S before my colonectomy.  

A good way to see if you are intolerant of gluten is to go gluten free for months. 8 went gluten and daily free for 6 months once hoping to make my UC better but it didn't help. Since then I've been tested as not having it. My BBF went gluten free and felt better years before she was diagnosed with Celiacs. 

Sometimes we never find out the cause of things like this. It'sounds frustrating as we want to know so we don't end up like it again! 

Thanks for updating us!

Have you had a urine test? Sometimes one thing leads to another...you may have a UTI as well...by the way soup bouillion cubes are really helpful with your sodium intake...if you are still having watery stools then you should be replenishing as much as possible...sipping warm soups has the double effect of giving you back a lot of the sodium and calming your tummy...

Don't neglect the heating pad either...instant relief for a lot of the aftershock gut and back pain.

Sharon

I have an appointment to see a urologist on Monday. I do think I have another stone sadly, same back pain and feeling in my bladder. I was under the impression that the Flagyl and Levaquin would knock out a UTI if that's what's going on. The good news is that I had my first pouchoscopy in 6 years and everything checkout out really well! A little inflamation in my cuff but my GI said that's to be expected given I had severe UC, and the cuff is basically what's left of my colon. Doc is taking me off the antibiotics for now, which is great because I've started getting joint pain again, which I haven't felt since prednisone. Things have really started to to settle down. I"m taking half an immodium in the morning along with Florastor and I'm down to 6 BMs and 1 at night, and no diarrhea. I'm considering staring on metamucil again as well. So in general this is excellent news. I guess a UTI or kidney stone would just be collateral damage really from the dehydration. I'm also keeping up with the gluten free, so far so good.  

I'm glad  you are doing so much better!

My GI told me that the dosage of antibiotics he prescribed for pouchitis was less than prescribed for other infections in our bodies.  I was given triple the dose of Augmenten for a UTI than he'd prescribed for pouchitis. I have been on Flagyl, Augmenten and Xifaxan for pouchitis in the past. (I can't take Cipro and had to stop Flagyl. Too bad as those seem to be preferred for pouchitis.)

Last edited by TE Marie

Jovic, funny how it works like that sometimes. You get incredibly sick out of the blue, and try as they might, they can't find the culprit. A few years back I wound up in the hospital in septic shock. They thought maybe the flu virus, but PCR testing ruled that out. Blood cultures were negative. They bombarded me with multiple IV antibiotics and antivirals and I was fine in a few days. Go figure... Thank goodness for modern medicine to support my body until this thing resolved. 

Did you confirm your kdney stone?

Jan

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