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Hi guys,

I've currently got an ileostomy but the pouch has been created in set for the takedown on 22nd of October. I had my op to make the pouch on February 14th, do 7 months ago, it was fine for the first few weeks, after that I started getting slight bleeding from the back passage, it's gradually got much worse and now the toilet bowl is a diluted red colour, red though not pink, I'm getting that horrible feeling of feeling like I need to push to pass something but nothing passes, some urgency, abdominal cramping here and there also, I always feel ill like a cold, but don't have a temperature with it, in top of that I've got a case of pyoderma around the aroma, I had this before the op in February, and at that stage my surgeon was sure that once the remaining part of diseased rectum was removed the pyoderma would clear up which it did, but why is it back? Also on my last pouchoscopy they were querying diversion colitis, could this be causing all my symptoms?

I'm just really confused, any advice would be so appreciated

Thanks guys

Sally

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I can say that my pouch had some activity during my ileostomy days, but those "disappeared" at takedown time, try not to worry too much about it, it could means nothing big, perhaps your bottom was greatly inflamed during your UC days and now it is not fully healed, but in case the pouch is still healthy and you could use topical steroids (if something else doesn't work) to treat that area. Pyoderma disappeares, more or less, always, when the underlined disease is treated. So be positive eat as clean as possible, and perhaps let you prescribe some iron as I suspect you are anemic because of your fatigue. (I take a brand called tecnofer which is super, but don't know if it's available in your country).

I
Thanks so much for your positive reply ikh, very much appreciated. If you only mind me asking did you have bleeding at the time before takedown? And also my pouchoscopy showed inflation of the pouch that they said could be diversion colitis, can this still mean I have a healthy pouch?

Last question with the pyoderma they've removed the diseased colon and rectum and the surgical staff all thought that should clear it up but it's back :/

Thanks for your help

Sally
S

 I'm getting that horrible feeling of feeling like I need to push to pass something but nothing passes, some urgency, abdominal cramping here and there also,

 

i've had these symptoms also.  this is a tough order, but the lowFODMAP diet has helped tremendously.  it doesn't resolve the pouchitis, but minimizes the symptoms, which in turn makes me more comfortable.  look under lowFODMAP diet in j-pouch section for links to info on diet.  good luck!  jlh

J

Hi sally!

Ok, that's not the best situation, I agree that I didn't bleed nor that I had diversion colitis when I had an ileostomy.

But still, you should be positive regarding what will happen, you can treat the pouchitis and / or diversion colitis there are many options.

Did they prescribe something til now? Or just waiting the reconnection?

I
Thanks jlh I'll definently look at the goodman diet, such a horrible feeling the urgency, it was fine until the j pouch was created and then since then it's problem after problem!

Ikh, yep they are just waiting to reconnect me but I get a strong sinking feeling they will just tell me ur just one it didn't work for when it all fails, just feels like to many problems, the bleeding is bad and I empty my pouch even though it's not connected about 10+ times a day just water a blood, they haven't given me anything at all I fact they've made me feel like an anxious idiot over it all by just telling me over and over that shouldn't be happene king are you sure?! And then I've been told some people just bleed and or some people it just doesn't work for! They've Literally made no attempt to help me at all, with the bleeding, I haven't heard of anyone having bleeding at this stage, I'm just so worried

Thanks for the help and for listening guys

Sally xx
S

I don't know if anyone bled at that stage but perhaps they trusted their doctors (I know it's difficult...) and didn't worried too much. You said that you see the water red as it's full of blood but you have to hypotize that it's just some tiny drops of blood which are just coloring too much transparent water, you don't need to think its huge amount.

Did you have any blood work or can you let prescribe one?
It would be interesting to check your iron ferritin and crp levels, in order to see how much you are suffering from blood loss anemia.

How much is the "diversion colitis" as they call it aggravated? Did they say light, moderate or severe?

Last, you say you need to empty the pouch and you have bad feelings, but I'm sure that everyone waiting (myself included) the takeover, did have to empty at least two times per day and it should be considered normal.

I

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