Hey guys I'm 19 years old and had UC when I was around 4-5 years of age, after months of malena and diarrhea I was finally operated on with ileostormy and 'takedown' as the name is commonly prevalent here.
What's sad is, that until a year or so ago, I was even not sure what had happened to me, and I was assuming I was as normal as everyone else with few more visits to the toilet.
After I checked out my previous medical records, I decided to meet the doctor that operated on me (14-15 years ago, glad to see he was still there, bit old) and he explained me everything I needed to know, as he had not disclosed everything to my parents and according to my parents only 5-6 inches of colon was removed whereas he told me that it was total colectonomy and removal of rectum as well.
Now that I look back at my check up cards from 2002 and onwards, it says I had bowel movements 7-9 times a day, and each year it went down a little.
As of my second last meet with the doctor in 2012, I only had to go to the toilet 4 times on average basis and the doctor told me it was very good and I was at a better conditions than others who have this surgery, that time he told me no need to have more check ups anymore.
Now, in 2015, I went on my own to have my doubts and stuff cleared, he still had the normal questions like how many times a day, soilage or not.
By this time however, the times I go to stool was 2-3 with 2 being minimum and 3 being maximum on a normal day, if went 4 times then it was perhaps the consequences of eating something I already knew would make me go 4 times.
As for soilage, since I'm used to this since childhood, I've noticed good improvements, some 3-4 years ago, I would have yellow patches in my underwear everyday.
Now, there is absolutely no incontinence even if I wear the underwear for 3 days.
There is no incontinence even during the worst of diarrhea.
But I've always had questions regarding my condition, I cannot discuss it with others because of our anatomy being different, so what is normal for me may be strange for them. As in I'm glad to have found this site with so many people having same issues.
So, a few questions if you would please :-
- I visit the toilet in this partition - 3 times - 60%, 2 times - 30% and 4 times - 10%, ofcourse depending on the food I eat, is this high or?
- How do you guys feel the urge to poop? For me its like, the pressure comes and stays for approximately 2 seconds, and goes away to return after 5-30 minutes depending upon the severity of the urge.
- Over the past few years, my 'normal' stool has slowly started to become more and more formed, as in, earlier peanut butter shape was 'normal' but now its more of a rocky shape, I mostly get this rocky, and hard shape as stool. But because I only remember a feint image of my stool as I was not fully conscious then, its still a bit away from how my normal used to be.
- My stool won't come out connected and slowly like an anaconda, maybe because I choose to poop right at the time I'm getting the pressure feeling, that it just comes out in one single flash, most of it.
- While it takes 2 seconds for the initial, and most of the poop to come out, if I wait for around 15 minutes in the toilet, around 30% of the initial stool still comes out so most of the time I am not able to empty up 100%.
- After I visit the toilet in the morning, my next visit is guaranteed to be after atleast 10 hours, while going upto 16 hours, but after the second movement, sometimes the third one comes within 4 hours, why so?
- After I started visiting the gym around 3 months ago, my bowel habits have improved greatly, there is much more delay between the second and third movement, I get much less output and much more solid and consistent stool, is it because of the exercise in general or is my pouch still adapting even after 15+ years?
- Coming to pouch, all my medical records say "ileo anal pull-through" which should essentially mean direct intestine attached to anal, without pouch, but I'm pretty sure that ain't the case as I've heard the output is too great in that case, and also since I'm very lean and vascular (underweight actually, 115lbs at 5"11), I can see and feel a raised figure on my groin area (above genital area) made of slim tube like structure and roughly representing an S shape, that means its an S pouch? How is S pouch fundamentally different form J pouch beside the shape?
- Also, I get affected by diarrhea atleast 3-5 times around the year, which is really frustrating, although I don't get dehydrated even after 2 days of diarrhea, 3-4 years ago just after 2-3 loose bowel movements I would get dehydrated and dizzy. This common?
- In my recent checkup 2 months ago, I also told my doc how I had started gym, if it were fine and if I could take protein supplements in the future, he said I can do anything I want and eat anything I want as long as it does not aggravate diarrhea. I mean I've been an active sportsmen from an early age and it never had any probs with my pouch, but on this site I read some limitations to lifting weights, and while I do understand risks like incisional hernia, it's fine if I lift weights progressively, according to my capabilities and wear belt support when needed right?
That's all I can think of at the moment haha, but I'm pretty sure I'll be here for a very long time (I hope my entire life) sorry for all this long wall of text and thanks if you read it all.
Closing question - Is there still some scope left for improvement? In my last checkup the doctor wrote on the prescription "asymptomatic individual" but can I still decrease my times to an average of 2? currently there are surely days when I only have to go twice a day, but I still consider my average to be 3.
Can I somehow improve the water absorption capability of my small intestines?
Thanks again, I probably missed out a lot of stuff I could ask but I'll save that for some other time