Diagnosed with Ulcerative Colitis in 2014, underwent steroid treatment with prednisone used maintenance medication, Asacol. Managed UC until mid 2015 when flares became worse, went into Remicade infusions which became less effective then had urgent surgery to remove my large colon in May 2016. I coped well with the resultant ileostomy, back at work full time 8 weeks out from surgery, pain and drug free with a short hospital admission in early 2017 due to pain from a stomach ulcer. Had a J pouch formed in July 2017, have never fully recovered total health since then. I have had numerous hospital admissions with epigastric pain, nausea and vomitting, past admissions have diagnosed gastritis but the most recent left me undiagnosed and in hospital for over 2 months. I have lost over a quarter of my body weight and am dangerously malnourished so much so that I have finally been hooked up to TPN via a PiC line to be IV fed nutrition for a month. I'm now questioning whether I should go ahead with the final surgery or have the J pouch removed?
Hello kiwigal. Thanks for sharing you troublesome journey, which makes me feel how fortunate I have been to avoid such a tumultous, painful and worrisome time. You are quite right to be questioning what should or should not be happening to you in terms of treament as it is you body and your life that is being entrusted to these people. From a superficial, amateur, outside perspective, it does not feel as though the j pouch is necessarily the problem so, what I would be doing, is to insist on a complete, honest and open discussion with my surgeon about what is wrong, what my realistic options might be and what would be the predicted outcomes for each of those options. Without all this information it would be very difficult to make a sensible and informed decision. Having consulted with one consultant, I would be inclined to seek a second opinion just to be sure that there was nothing missed by the first 'expert'.
I hope this helps.
Best wishes
Bill
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MeetAnOstoMate website turned out to be a lifesaver for me. I say this because, for me, this ostomy journey was a devastating event both physically and mentally.
Here, I found folks who understood my feelings even better than my family or friends could. Only a fellow ostomate can understand how you really feel.
Information sharing is key, as well as support and understanding, to ultimately bring more harmony into our ostomy life journey. I found here, virtually no ostomy questions that are not touched upon. Questions which some might feel, may be too trivial to contact a doctor about or even too shy or embarrassed to ask their own doctor about. They are all addressed here.
For me, anonymity was very helpful in seeking answers to each phase of this life changing medical and mental event. Sharing initial trauma feelings, ongoing support and finally acceptance was what I found with my membership here. I am not sure what my mental and physical attitude would be today without having found this site.
Additional benefits included: finding products and ideas to help with daily maintenance, innovative ideas and as a bonus - some great humor.
After all “laughter IS the best medicine”.
I have been a member for 3 years, an ostomate for 4 years - yes, I certainly wish I would have found it immediately after surgery but so very thankful I finally found it when I did as I truly believe it turned my troubled depression and situation into a more positive attitude and acceptance.
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Many thanks
Mandy
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Hello Kiwigirl/Mandy. I am glad that you have a surgeon you can feel confident about. This makes it easier to make the desicions about whether to go ahead with surgery. I have not had reconstructive surgery as my own surgeon did not recommend anything other than a straightforward colostomy.
I have recently returned from a visit to my daughter in Dunedin, so am really jealous that you get to live in such a beautiful country all the time.
Best wishes
Bill