If it is any comfort, practically everyone questions their judgment in the first 6-8 weeks post op, and that is without any early setbacks. So, while your observations are 100% valid, they most likely are not the end of your story.

It is good to take stock of your situation periodically and reflect back on how things were at first. And, yes of course, part of the journey is to adapt to the new reality instead of comparing life with a healthy colon.

Wishing you the best on your path to a healthy life!

Jan

I hope it gets better for you. Was your UC under control with steroids or why did you decide to get surgery? Pre-cancer found? Thank you. I am trying to make this decision right now and struggling.

I had pre cancerous lesions in my rectum after 20 years of UC, my flares were occasional and did not affect my life.

I have had a number of complications as a result of submitting to elective colectomy surgery,

one operation became two operations which became three operations and a 4th hospitalization which I am in the middle of now.

my experiences are based on my unique circumstances at the time of my decision.

I know it’s a tough decision to make. I struggled mightily with it. At the end of the day it came down to surrender colon vs probable future CRC.

I could have delayed the surgery (was supposed to be a 1 step), but given my age (63 to be 64 soon), I did not want to wait.

my only non medical advice I can give you is the following:

1. understand that surgery is not a guarantee of anything, other than your body taking a beating and the outcome you receive might be different from your expectations.

2. co morbidities are real. You will need to evaluate your health at this moment and decide with a trusted family doctor if your body can handle this process. (Multiple surgeries),

3. What god gave us, man cannot duplicate. So while I have a functional jpouch it will never work as good as a rectum. Jan’s response to my first post was spot on. I am going to need time to get use to it and figure out how it works best with my body.

4. I have spent alot of time on this site before takedown. I was still unprepared for everything that is happening now.

Please do not take what I have said here as trying to dissuaded you from this path, or any path

since I have been hospitalized on and off for almost a month I am very disheartened at the moment and struggling mentally to push thru this. If you want to speak with me personally, I would be happy to, send me a PM so I can give you contact details.

I hope I have been helpful and I wish you the very best in your decision process and the best outcome possible!

Being an RN with real world surgical experience gave me *some* insight as to what to expect from abdominal surgery and I was under no illusion that a positive attitude would most definitely make for a better outcome. That said, knowledge can be double edged, and can give some level of irrational fear. I had never had general anesthesia, so of course I feared it. I had been “on the other side of the stethoscope” a number of times, so I did have an earned empathy for the suffering associated with UC and hospital procedures.

But, a positive attitude does help you put your best foot forward and try to avoid the pitfalls of dwelling on counting how many times you poop or what you cannot do. We cannot change how we are mentally “wired,” but we can focus on small goals, measured in weeks and months, not days and weeks. We all try to think of what did I just eat to cause symptom A. Often you cannot really pin it down, since tolerances change quickly, but eventually you will see a pattern.

An example for me is that spinach always causes diarrhea for me. I still eat it because I like it. I just don’t expect to go dancing that night! Having some diarrhea stopped meaning being sick for me about 40 years ago. It took me a couple of months to figure out that Metamucil (prescribed by my surgeon 4 times a day) was giving me more grief than comfort. Only you can determine what works for you.

Jan

Thank-you for taking the time to write this Eric I hope things get better for you hon, I am sorry you are suffering, I hope things get better, I will keep you in my prayers

Thank you Jan and Lauren.

Jan: you seem to be the voice of reason here and I always find your words comforting.

I set up an appointment with my GI doctor who recommended the colectomy in the first place. I told him he needed to take over the case since I think I am beyond the expertise/desire of the surgeon to treat my jpouch spasms and diarrhea. My surgeons recommendation of Imodium before every meal plus bedtime does not seem like a long term solution, but what do I know? Only that I am suffering. So I will consult with my GI doctor on Tuesday to get some insight into jpouch management. Maybe I am not giving this time, as my surgeon suggested, but when one is suffering and in distress with perpetual gas, cramps, bloating and diarrhea then it’s very real for that person (me). And yes, I do acknowledge that I need more time for jpouch to settle in, but pain is pain, whether it’s day 1, day10, 100, 1 year or 10 years from now. The only thing I know, is that I am miserable right now, and I want the pain to stop.

thanks for listening

eric

@New577 posted:

I had pre cancerous lesions in my rectum after 20 years of UC, my flares were occasional and did not affect my life.

I have had a number of complications as a result of submitting to elective colectomy surgery,

one operation became two operations which became three operations and a 4th hospitalization which I am in the middle of now.

my experiences are based on my unique circumstances at the time of my decision.

I know it’s a tough decision to make. I struggled mightily with it. At the end of the day it came down to surrender colon vs probable future CRC.

I could have delayed the surgery (was supposed to be a 1 step), but given my age (63 to be 64 soon), I did not want to wait.

my only non medical advice I can give you is the following:

1. understand that surgery is not a guarantee of anything, other than your body taking a beating and the outcome you receive might be different from your expectations.

2. co morbidities are real. You will need to evaluate your health at this moment and decide with a trusted family doctor if your body can handle this process. (Multiple surgeries),

3. What god gave us, man cannot duplicate. So while I have a functional jpouch it will never work as good as a rectum. Jan’s response to my first post was spot on. I am going to need time to get use to it and figure out how it works best with my body.

4. I have spent alot of time on this site before takedown. I was still unprepared for everything that is happening now.

Please do not take what I have said here as trying to dissuaded you from this path, or any path

since I have been hospitalized on and off for almost a month I am very disheartened at the moment and struggling mentally to push thru this. If you want to speak with me personally, I would be happy to, send me a PM so I can give you contact details.

I hope I have been helpful and I wish you the very best in your decision process and the best outcome possible!

Very helpful. Thank you for taking the time to share that with me. I am so sorry you are going through this and in pain. I really hope you get some relief soon.

@New577 posted:

Thank you Jan and Lauren.

Jan: you seem to be the voice of reason here and I always find your words comforting.

I set up an appointment with my GI doctor who recommended the colectomy in the first place. I told him he needed to take over the case since I think I am beyond the expertise/desire of the surgeon to treat my jpouch spasms and diarrhea. My surgeons recommendation of Imodium before every meal plus bedtime does not seem like a long term solution, but what do I know? Only that I am suffering. So I will consult with my GI doctor on Tuesday to get some insight into jpouch management. Maybe I am not giving this time, as my surgeon suggested, but when one is suffering and in distress with perpetual gas, cramps, bloating and diarrhea then it’s very real for that person (me). And yes, I do acknowledge that I need more time for jpouch to settle in, but pain is pain, whether it’s day 1, day10, 100, 1 year or 10 years from now. The only thing I know, is that I am miserable right now, and I want the pain to stop.

thanks for listening

eric

Your welcome, hope you feel better.

Update 6/22:

I met with GI doctor this morning. Here are the highlights in no particular order:

1. Scheduled pouchoscopy for early August

2. switching me to visbiome probiotics for 2 weeks

3. the iv antibiotics I am taking thru Sunday for my uti can cause GI distress. He feels once that is over I should feel better.

4. eat whatever I want

5. Continue Imodium before breakfast and dinner plus two more around 7-8 pm.

6. Will re evaluate in two weeks, might try canasa as an interim solution prior to pouchoscopy if irritation and slight bleeding continues in anal area.

7. Reluctant to say any diagnosis (pouchitis, cuffitis or irritable pouch) prior to physical exam.

I hope this helps someone else who is experiencing my symptoms.

I am relieved to some extent that there is a plan in place and he is on the case.

eric

@New577 posted:

Update 6/22:

I met with GI doctor this morning. Here are the highlights in no particular order:

1. Scheduled pouchoscopy for early August

2. switching me to visbiome probiotics for 2 weeks

3. the iv antibiotics I am taking thru Sunday for my uti can cause GI distress. He feels once that is over I should feel better.

4. eat whatever I want

5. Continue Imodium before breakfast and dinner plus two more around 7-8 pm.

6. Will re evaluate in two weeks, might try canasa as an interim solution prior to pouchoscopy if irritation and slight bleeding continues in anal area.

7. Reluctant to say any diagnosis (pouchitis, cuffitis or irritable pouch) prior to physical exam.

I hope this helps someone else who is experiencing my symptoms.

I am relieved to some extent that there is a plan in place and he is on the case.

eric

Hope you feel better hon