A couple of years after my J-pouch surgery in 2012, I started to get episodes where I generally felt really ill, rather like I had the flu but without the cold symptoms.

The only pouch symptoms I would get would be that my pouch output would firm up, become foul smelling, pale, hot, thin and ribbony.    I have never had any urgency, seepage or bleeding.   I also find I constantly need to urinate when it happens.

This would happen a couple of times a year and my Gastro and surgeon suspected either pouchitis or bacterial overgrowth and prescribed Cipro which seemed to do the trick.

I had 2 scopes which did not show any problems.

My episodes became more frequent and I have just had a scope which has shown inflammation and multiple erosions though out my pouch.

I really have been feeling so ill for months now I can hardly function.   I am exhausted and have no energy.   I have had to go to the ED as I keep getting dehydrated.

Just wondered if anyone else has had pouchitis with out having the classic symptoms of urgency, seepage, pain etc.

I also have ankylosing spondylitis and my sacro-iliac pain worsens when my pouch does.

Just hoping it is not Crohns.

 

 

 

 

 

 

 

 

Original Post

I am also one without the usual symptoms. Mine are very subtle comparatively.  I lose weight. I can't fully empty my pouch so up more at night to do so. I do not experience the pain nor cramping or discomfort many on here have reported. I also get very dehydrated and have low energy. This my 3rd and worst round of pouchitis after 33 years post take down. I'm working with doctors in Australia who do not see many if anyone with a pouch here so very inexperienced with pouchitis or how to treat. They also do not want to prescribe cipro because it's held as one they want to use for super bugs if needed so accessing it is difficult but I know it works. I've taken flagyl 400mg x 3 day but the side effects are really bad so I've cut it down to 1/2 under Drs advice but at that level it isn't working so I'm going to see if I can switch perhaps try Xifaxan as I read on hear thst some have said it be good and less side effects than Flagyl...here's hoping.

Hi Indiana

It is interesting that you are in Australia and are facing the same issues as we are here in New Zealand, a lack of Gastroenterologists and having to be treated by Dr's with little or no experience of J-Pouch problems.   I was lucky enough to have been treated by a brilliant Gastroenterologist here for years, but then our rural services were cut and things really went down hill for IBD patients here.

Finally, after months of getting sicker and being in and out of hospital, MRI and CT scans, last  Friday I was again in ED totally dehydrated with my heart jumping about.   Fortunately the ED Dr, took  her own initiative and phoned my original Gastroenterologist, who has now retired from the NHS.   He immediately told her to admit me again and get the surgeons to scope my pouch, which they finally did on Tuesday.   Am so cross that I have been left so ill for months when a simple scope in May could have saved me stress and the NHS a lot of money.

Cipro has kicked in and at long last I am starting to feel better thank goodness.    I too was made to feel bad about using Cipro, by general surgeons and inexperienced registrars.   Fortunately, I do not have problems getting prescriptions for it from my GP, it just made me wary of using it.   

Lesson I have learnt is only take the advice of an experienced Gastroenterologist and when you know something is going wrong in your body, it probably is, even if Drs tell yo otherwise.    

Hope you feel better soon.

Regards

Caroline

 

 

 

 

 

 

 

 

Thanks so much for your reply Caroline. It’s nice to hear from someone down under with similar challenges. It was really nice of you to share your experience with the NHS and the lack of experience as I have come up against here.  Great that your old Dr responded like that and that they were able to get you sorted on cipro. I am going to see another GP today as I’ve discontinued the flagyl over the weekend completely as I am not able to tolerate the higher but more effective dosages. I phoned my gastro’s office and he is not in or they can get a hold of him until Thursday and apparently he they can’t call him unless he on the oft chance calls them at his office. He’s a professor here. But I have to wait.  I’ve asked them to tell the Dr I need to get another script and one with cipro and perhaps Xifaxan combined to deal with my pouchitis more aggressively or I like you may be headed for the ED.  This GP I’ve never been to before which I’ve got an appt later today has probably never heard of a jpouch. The clinic I go to here for GP’s both my usual one and the one that I had to go see once before when my GP was gone are both not in this week, go figure. So here’s hoping I can convince this guy I’ve never seen I need Cipro ... fingers x’d! 

Cheers for all,

Indy

Hi Indy

So glad to hear that you managed to get the Cipro, hope it does the trick.  

Although Cipro does definitely help, I am convinced that autoimmune disease is still the main problem for me.

I first got Ulcerative Colitis 40 years ago and the first sign of a flare up was always sacro-illiac and hip pain.   I have since been diagnosed with anklylosing spondylitis with MRI and CT evidence.    Since my colectomy, it is still the same, as soon as I get a problem with my bowel, my AS gets worse.

I have been on Humira and Infliximab, both of which had really positive effects within 24 hours on both my bowel and AS.   Trouble is I had allergic reactions to both so treatment had to be stopped.   Steriods make a huge difference too, but after 40 years of taking them and thinning bones they are now a no no.

It really is so frustrating isn't it, when there are drugs you know work and have a huge positive effect on your quality of life, but you can't tolerate them.  I feel for you on that.

It sounds like we are facing very similar problems both sides of the ditch.     The biggest thing that I have found that non-gastro doctors don't understand is the chronic dehydration.   So many times they say, "you are drinking and your blood tests show your electrolyte levels are OK, so you definitely aren't dehydrated".     I then explain it to them and get them to do the urine test, which proves the lack of fluid.   So frustrating.  

Fingers crossed you are on the mend.   

Take care

Caroine

 

 

Thanks again for the reply and yes very similar issues. I seem to be doing better already but the true test all be when I am off the Cipro and all. I have a script coming via mail from the gastro specialist and have no idea what it is they apparently don't know I got my GP to prescribe the Cipro. Will see if he sent a Cipro Rx or some other as I did mention I might be up to trying Xifaxan.  Thanks again for well wishes Caroline.

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