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Hi All!

Just like to say a big thank you to this site and the wealth of information from all its members, (especially Jan!) it's helped me answer some worrying questions ive had in my mind over the past years, and its been invaluable when access to medical advice is very slow (particularly true here in the UK)

I was diagnosed with Chronic Pancreatitis when i was just 12, 2 years before i developed UC. I've never had any problem with my pancreas since, even after all the surgery i had when i had my colon removed back in 2003 due to a severe flare of UC. I have had a good 10 years out of my pouch, with no pouchitis etc, until things began to go a bit haywire recently. My pouch function seems to have been knocked out of sync, sometimes feeling very blocked and swollen, watery consistency, tiny spots of blood when straining to go (very small) and sometimes pain after going like when i had UC. All these symptoms sound like a mixture of Pouchitis, Cuffitus and maybe IPS, although they all come and go, it is never constant. I have also developed twinges of pain throughout my whole upper and lower abdomen, which feel spasmodic as they only last a brief couple of seconds, although they do appear to be concentrated more on the left side. Also my stools (when they are semi formed) are floating more than usual (i think) The problem is i never paid any attention to my stools much before this, so i wanted to know how many of you J-Pouchers have floating stools after visiting the bathroom?

I guess my question is: could IPS, etc be causing these changes, or should i be more worried about my Pancreas that i havn't had any problems with all these years?

I have appointments booked with my pouch specialist (Nov 14th) and an U/S of my liver and pancreas (Oct 29th) Due to abnormal liver results, liver enzyme was raised to 150 so possible fatty liver disease. I think you can appreciated the waiting times are quite long to be spent worrying!

Any info/advice would be much appreciated!

Thank you,

Cez
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Hmmm... Fatty liver disease usually does not have symptoms until it is quite advanced. So, you smart to be thinking pancreatitis again (yes lightning does strike twice!). In advance of your scans and appointments you may want to call and have amylase and lipase levels done with repeat liver enzymes. I'm sure you are thinking poor fat metabolism with floating stools (hence pancreatitis) and you are correct. But it could also be gallbladder or bile duct disease. The scans should sort that out.

If it is fatty liver disease, the good news is that it does not mean things will get worse and worse. Mine completely turned around with some weight loss and getting my inflammatory arthritis under control.

Jan Smiler
Thank you both to your replies, much appreciated! it's nice to be able to be in contact with people who have been down the same road, i don't think i've even met anyone in person who has had the same surgery as us.

Jan - I read on an earlier post that you had FLD and managed to overcome this by losing some weight. I myself am overweight so i'm hoping it will be as simple as this and not something too serious. The problem i have (as im sure you will know) is having BM's that change like the weather! All depending on time of day, what i eat etc having an influence, it's hard to pinpoint a sign of change when it changes so much! Im sure my BM's floated sometimes in the past, maybe now i am noticing more as i am worried.

Lesandiego - Strange circumstances with the pancreatitis, i too thought what you said. The diagnosis was 'chronic pancreatitis' due to a slight narrowing of the duodenum and an MRI which showed the pancreas to look 'boggy' accompanied with severe abdominal pain for a week or so. I was 12 when this happened, i am now 27 with no flare-ups at all since (fingers crossed) i will talk to my specialist when i see him, but what are your thoughts on that? I dont like to undermine doctors as they are generally some of the most amazing people on earth, but maybe a mis-diagnosis?

I will keep you posted on the outcome of my upcoming scans and appointments, hopefully this will be of some help to another member in the future.

Cez
after many years with Kocks Pouch I still suffer with pain.
Does anyone seem to get a nights sleep or does everyone awake after 4 hours like me?
All the questions I have asked over the years are met with a blank look.
I do have a problem with milk type food and I know not to have these.
I have a healthy diet and have only been given immodium. This seems to cause cramps now so have left these off.
After years of asking for anti biotics and told no my GP does allow me low dose. This has helped and I can go for periods without pain.
My main concern is lack of sleep.After attending to the reservoir I seem to find it impossible to get back to sleep.
You all seem to have stacks more knowledge then I do in UK.
This makes me angry as the surgery is very clever and I believe must have helped contributed to knowledge.
The attitude here seems to be that the surgery is not carried out any more so there is no knowledge.
This always seems to be the view of someone shopping and being told they do not have the item of clothes in a particular colour.If only health was such simple issue.
It was also found by chance that I have gall stones. Once again no comment from doctors.
Homeopathy has kept me going over the years for my general outlook but pain is always around the corner.

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