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I am new, thank you in advance to anyone who takes a moment to reply.
My question...I am 3 weeks out from take down. Other than fatigue I only have one issue. I have a uncomfortable  feeling of having to "go" constantly as if something is there. If I didn't have that constant feeling of having to go as if something is stuck in you I would be doing wonderful. Does this go away over time? Only 3 weeks since take down I am hoping it's just normal recovery.

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Hi Ams, I am new too and am a mother to my 14 year old son who had his J Pouch surgery 3 weeks ago as well. He has been practicing holding on from the moment his anal drain came out and seems to do very well,. My concerns are he has had some blood and cramping and I am unsure if this is normal healing or the beginnings of pouchitis. I have called his surgeon who just said to visit the GP with any concerns but I feel like a more specialised doctor would help. He is feeling good today so I am just trying to arm myself with as much information as possible. Hope your recovery is going well!

Heaths Mum

ams...... I experienced similar as yourself for a couple of days after takedown; thought I had a golf ball sized blockage, really uncomfortable and painful; created the sensation that I needed to go all the time

At the time my surgeon said it was due to the two skin types meeting, one within the anal canal on the inner side which can tolerate the bile acid produced by the stomach and the skin on the outer side but still slightly within that was never designed to.

Applying a small amount of ilex protectant paste onto the tip of my finger and applying it to the inner side of the anal sphincter brought instant relief.

A few days after returning home, the issue occured again, still does from time to time but not as bad; on each occassion I apply the ilex paste and I've even pinpointed an area within where my discomfort actually occurs.

I discovered that during takedown my anal canal was dilated and I believe that during the stretching process, the skin within the anal canal tore, creating open cuts and such wounds are normally called fissures.

Fissures can also occur when straining during BMs and although I'd not passed a BM in the traditional sense for many years, when it was time to, it's a natural sensation to bear down but such straining is not required with a J pouch, it's more a relaxing of the muscles and let gravity take its course.

If anal fissures occur, during each and every BM, the open wounds are being immersed in bile acid.

In a few weeks time the bile acid produced should subside, so will bathroom visits and once you've returned to a normal diet the acid produced won't be so acidic.

I've never had to endure the tradition diaper rash type butt burn, only what I've described.

I hope this helps.

FM
Last edited by Former Member

Heaths Mum.....Due to your use of the term GP, I assume, like myself you're within the UK?

From my own experience, after takedown there was no blood present during Bowel Movements, if there was, it was such a small amount I never noticed.

During takedown, which is the re-connection of the loop ileostomy; some cutting and stitching of the small intestine occurs, so they may well be some blood during a BM on the day of surgery or for a couple of days afterwards but not 3 weeks later.

I too don't believe a GP's have sufficient knowledge to treat your son or address your concerns.

If in the UK, contact your sons Pouch Nurse or Consultant and explain your concerns; even better if you can speak to the Surgeon or a member of your sons Surgical Team.

My Pouch Surgery was performed at St Marks Hospital; a 4 hour train journey from my home and my Pouch Nurse as advised, that should I pass blood, I'm to make an appointment to attend St Marks.

Since takedown, not once have I ever noticed blood during a BM.

FM
Last edited by Former Member
ams....... Yeah the ilex paste works for me; although my Pouch Nurse has confimed it can be used as I've described and such a method is now suggested by the hospital; ilex paste is technically for External Use Only, so only use a small pea size amount applied to tip of finger and don't insert too deeply.
FM
I've stopped all meds too, although the only med still prescribed is Imodium.

Without the Imodium my frequency of 4 or 5 Bathroom visits per 24 hours remains the same; most days 4, some days 3 but never less. Once in a while I  do awake during the early hours  to use the bathroom.

However, i prefer the thicker consistency of output when taking the Imodium.
FM

Hi Strange and ams, first up thank you so much for your replies. I am not in the UK but Australia, specifically Queensland. The medical system here works thusly; you have an ailment and visit your GP, if it is a serious ailment the GP writes a referral for you to see a specialist in that area, in this case a gastroenterologist. You then try and make an appointment which can take several months to get in. The specialist then sends you for, or prescribes treatment. For my sons case, he was sent to a gastro clinic at a children's hospital for all the pharmecutical treatments for UC. As his disease was sever and noresponsive (except for prednisone) to these treatments it was decided for him to have a colectomy with a temporary stoma (this surgery went very well) until he was well enough to have the j pouch surgery. As it happens the surgeon qualified to do the takedown did not work at the children's hospital so there was a long wait to correlate his timetable with that of the hospitals. We now find ourselves just over 3 weeks out of surgery and I am very unsure of how well he is doing. He has had some blood but that has gone, he is now having intermittent cramping, some night time leakage and is very tired. I've tried calling the surgeon only to be told to call the GP and that we can't see the surgeon until sometime in October - seems too long right? My hesitance at calling the GP arises from knowing that his/ her knowledge will be limited, that I will undoubtedly have to wait for a referral etc etc. When at this point I feel like my son, who has a massive aversion to doctors right now, has been through enough and could do with some simple reassurance or guidance, without the rig moral.

Other weird things are he had to endure a full week of clear liquid diet after his surgery and then was instructed to partake in a full diet after that. It seems many people here started slowly with pureèd fruit or mashed potatoes and eased into a full diet which makes more sense to me. He does not have a pouch nurse as has been described by you but seems like something that should of happened. Actually writing this out has done me some good as I think I will just call his old gastro clinic.

Thanks again as I find all the information invaluable and very happy to hear you doing so well post op. ��

Heaths Mum

yeah I had this kind of discomfort for the first 3 or 4 weeks. like strange it could have been due to burning inside the anal canal. I think also I was straining too much. as strange said you have to learn to relax the pelvic floor and let things flow out with less effort.

 

I also didn't take any immodium then. once I started taking immodium at about 4 weeks out I think the burning went. I don't need immodium now either but when I stopped I got a bit more burning/itching, so I just take one before bed each night.

 

get a bidet too if you can. I used a hand held portable one, gave me a lot of relief...

S

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