Ann Marie - 

I am so sorry to hear your having a hard time. I struggle with this myself. Not the nausea in the mornings but the leakage is quite frequent these days. It comes and goes, can't seem to tell what makes it worse or better. Most nights I leak through my underwear and have to change and sometimes the sheets and everything. It's a pain - I can attest to that! I've had my pouch for 9 years. My doctor put me on antibiotics which helped a little bit but it's been 2 months since taking them and the leaking has started again. 

Good luck to you! I hope you and your doctor can figure out what is going on. I'm not sure about the cold and sweats in the morning it sounds like possibly a stricture or infection. 

Wow, it's so nice to know that others are going thru this "crap".  I Thanks, Ann Marie going to find a good j-pouch/internist tomorrow.  This has to stop ��

If this is a new development, yes it is likely pouchitis. Call your doctor and get on some antibiotics. Things should start to turn around in a few days if it is pouchitis.

Jan

Yes you have pouchitis. You should also go for a pouchoscopy soon. I had a 14 year great run where I never thought about the disease. Then the nightmare came back, to find out the pouch was so inflamed. Get in to docs quick. Good luck 

Thanks you guys...all sufferers in Post  Pouch Hell.  I called the premier anal/rectal Doctor in Albuquerque.  Of course, his next appointment is in June.  I guess I'll be waiting for awhile....not unlike this disease....and the hours, days and weeks in the hospital from surgery and two resections.  Patience is a virtue

Btw...there should be a special place in heaven (with a toilet and bidet) for all of us!

Oh, no! You definitely cannot wait until June for treatment. That is ridiculous. You need to call back and get the message across that this is urgent. You could wind up in the hospital in that time frame. Most docs will prescribe antibiotics based on symptoms alone before a visit. If you come up with a dead end, you need to find a more accessable GI doctor. It does not have to be a surgeon.

Jan

Heck, a good primary care doc *might* be willing to prescribe a 14-day Cipro course/trial (perhaps 500 mg twice daily). The odds are potentially better if you bring in the pouchitis articles linked to at the top of the "Pouchitis" forum. The odds of cooperation are best if you have a good relationship with the doc and educate yourself about pouchitis treatment, since the primary care doc has probably never treated a case.

Extreme pain might also be evidence of an anal fissure, so I wouldn't cancel the June appointment.

my guess would be both pouchitis and a fissure. beyond getting a scrip for antibiotics to try to address pouchitis before being seen, you might also try A&D ointment to help heal the fissure between bowel movements. if its truly a fissure you might need more powerful stuff but the A&D might help a little while you wait for a prescription and dx.

Have the same problems now and then after 32 years. To wipe wet the TP in warm water before wiping      

I use Anhydrous Lanolin stops the burn. Ask a pharmacist for it. Does help the pain when all is burned up.  Theses work for me.  Good luck. 

Hi Friends,  So sorry to hear of your troubles.  I've gotten into the habit of lubing up with a fragrance free lotion (eg Lubriderm) BEFORE going.  It makes the wipe a dream come true. 

Annmarieal posted:

God help me!!!!  I have had a j-pouch since 1994....suddenly, the pain is indescribable.  Every time I go to the bathroom my pouch is leaking acid battery fluid.  My rear end itches and is bleeding.  I have a bidet, but the pain of water is unbelievable.  I try to gently pat the area (not itch) and put a few sheets of toilet paper between my cheeks.  It hurts so badly at work, so awkward...to the point that I sit and lean to the left to relieve the pressure and pain.

Each day out of no where, leakage starts whether I laugh or just need to go all of a sudden.  Do I need depends undergarments?  I am so tired of passing liquid during the night which soils my sheets, panties and even the carpet as I run to the toilet.  It's so gross and a huge mess.  Yuk. I want to vomit.

Does anyone have a similar experience after 20 plus years of a j-pouch?  Is it pouchitis?  So tired of feeling like I am poisoned with fecal matter or something.  Recently, I heave up stomach bile every morning in bed for a 1/2 hour, cold and then sweats.  It's such a horrible feeling.  Everything hurts.

thanks for listening, Ann Marie

51 years, severe UC, j pouch in 1994 (one step...no bag...back in the day)

 

 

Ann Marie, I just found this group.  I have a lot to say about your problems.  I had UC for 13 years when I went into a coma from meningitis & encephalitis together for about a month in 2008.  My UC became worse, due to C-diff, and I started having regular bowel accidents.  I learned about pullups, waterproof underwear (not diapers), which contain the problem very well.  Depends is a good brand, but Walmart's house brand Assurance is half the cost and almost as good.  I wear them 24/7, eliminating all problems with leaking, day and night.  They're very comfortable, because their waist band is very wide and doesn't press into the skin after many hours wearing them, like regular underwear's thin waist bands do.  

In 2013 I had a colectomy, as I was beginning to get cancer.  That solved that problem, but I developed treatment-refractive pouchitis, and the accidents continued.  The content from the small intestine contains digestive enzymes, and can harm your skin if exposed for any length of time.  Together, with continuous wiping, cause erosion of the skin around the anus and the skin of the butt-crack.  After 30 or more wipes per day, toilet paper becomes like sandpaper.  You get the picture.  Much pain ensues.  

Do you get flakes of blood on the toilet paper, or do you have (occasional) real blood flow.  If the former, you do not have a fissure, but are suffering from continuous skin tissue being rubbed off or "digested" by the enzymes, causing blood spotting.  Whenever I have the pain, I use a moisture-barrier ointment.  Aquaphor, by Eucerin, available here in the Northeast, is pretty good.  It contains 41% petrolatum, which I believe is a form of Vaseline.  It's available at any pharmacy, but another brand, Soothe and Cool, with aloe and vitamins A,D,&E, contains 98.3% petrolatum, and can only be found online. The company I buy it from - it's name starts with North - I can't remember the whole name.  Aquaphor is 3oz; Soothe and Cool is 7oz., a big tube that lasts a long time, and it only costs $8, plus S&H.  It looks like large tubes are only generally sold to institutions, so that is why it's not available in stores in any size.  Soothe and Cool is like a miracle.  Put it on after every bm, and the pain and discomfort are greatly relieved almost instantly, and gone in a day or so.  

Even if you were to have a fissure, your discomfort should be easily manageable with this treatment.  The vomiting I have no clue about.

Good luck, and feel free to ask me any questions, including the procedure I use for handling bowel accidents that makes them only an inconvenience, as opposed to a source of great stress. 

Salmander

claire,

Apparently you did not read my response just above yours.  Soothe and Cool eliminates any pain and discomfort that is related to the skin completely in a day or two if used after every bm.  Completely.  100%.  I depend on it, and am able to not have the discomfort and pain continuously on my mind throughout the day, like before I discovered Soothe and Cool.  Aquaphor is almost as good and is available in regular pharmacies, at least here in the US.  Anne Marie has apparently also not read my post.  Too bad.

salmander

Claire,

Wow!  That's unbelievable.  You'd think that the product you saw had gold or platinum in it.  Here in the US (I just checked), Amazon sells a two pack of Medline (the brand name) Soothe and Cool, 7oz, for $12 US, even cheaper than I paid at $8 each.  It's Soothe and Cool with aloe.  The tubes have a more-or-less beige color to them.  I would check again.  It must be a misprint or something.  The product is not THAT special, and I doubt shipping and handling is $100.  I have no idea if Amazon has a UK location.  If not, I imagine the shipping time would be longer.  Perhaps the shipping by air adds cost, but, still, it shouldn't be that much.

Otherwise, petrolatum is a pretty neutral substance.  Using it effectively depends on repeating the application after every bm, which can be pretty inconvenient and frustrating during those times when there is another bm after only 15 or 20 minutes.  A little perseverance is sometimes needed, but the results are amazing.  I can't imagine having a negative experience with petrolatum.  Perhaps you could describe to me what happens.  Then I may or may not have some insight into the matter, because, after all, irritation and discomfort should not be an expected consequence of having a j-pouch.  It's not something that "comes with the territory."  Whenever I have let the burning feeling get really bothersome and painful (because I was too lazy to go through the process of putting the Soothe and Cool on for a couple of days), the longest it's ever taken me to be completely pain and irritation free is three days.  And that's when I had omitted an application or two after a bm.  With every bm application, it's never taken more than two days, even with 6 or more bm's a day.

And, oh yeah, the application has to have "thickness," and not to be wiped smooth on the skin.  I have bowel accidents, so I wear those waterproof pullups 24-7, so there is no concern with whether or not any of the Soothe and Cool ends up on them, which it doesn't seem to (at least I can't see any).  I think the "thickness" is what makes it last longer, and to have the desired effect.

Salmander

Claire,

Yes, that is the exact product, and showing the exorbitant price too.  Check if it's sold at any other location.  Perhaps you could contact Amazon or Onlinestore directly to verify the price.  I'd be willing to bet that there is an extra "1" in the price, but even that seems a bit exorbitant to me.  It's not some kind of rare or hard-to-find product, so that price just doesn't seem right.  Google Soothe and Cool and you should come with several places that sell it.  Perhaps it's even sold in pharmacies in the UK, I would have no idea if such policies are different over there.  But even if not, most pharmacies should have some kind of moisture barrier ointment anyway, though I can't imagine any of them being as good as Soothe and Cool.  Good luck - let me know what you find out.

By the way, 7oz. lasts a really long time.  When you have squeezed all you can out of the tube, cut the tube about 1 inch back from the cap, and there's enough there (that can't be squeezed out in the ordinary way) for 10 or 12 more applications.

Salmander

Ilex Protectant Paste

ilex Paste is also available on NHS Prescription within the Uk, so totally free if in receipt of benefits, otherwise a Prescription Charge applies.

Hi don't know if any help- I use Ilex ( I get this on prescip. as I am in the UK) together with Calmoseptine which I get on Amazon for about £5.00 a tube. I also have to put some 'inside'. I find it makes for a much happier butt !!