I had the subtotal colectomy with end ileo last Oct. Now facing next surgery--getting the j-pouch or making the end ileo permanent. Not an easy decision. I've read countless online posts about the anxiety this decision creates and now it's my turn--and yes, I'm anxious. I've adapted to the ileo but since I've got to have another major surgery one way or the other--and have it soon--the pressure is on. So I created a T-Chart comparison and would love your feedback. Let me know what else you would add, or if some of my comparisons need to be tweaked. BTW, I'm 62 next week and realize I'm at the top of the age bracket for a j-pouch, but I'm an active guy and a new grandfather.
One more thing, I've got a consultation with a surgeon at the Cleveland Clinic next week, so your critique of my T-Chart will be helpful. Thanks in advance. Here's the chart:
PERMANENT END ILEOSTOMY | J-POUCH |
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Will need one more major surgery to remove rectum and possibly revise stoma. | Will need one more major surgery to remove rectum and create the j-pouch; and three months later will need another surgery (takedown) to activate the j-pouch and close the stoma opening. |
Physical appearance – will have a bag attached to abdomen 24/7. | No external visual sign except scars on abdomen. |
Ileostomy is permanent—no reversal possible. | J-pouch can eventually fail, leading to another surgery to remove the j-pouch and create a permanent end ileostomy. However, studies show j-pouch success rate is approximately 90%. |
Rectal cancer risk should be nonexistent. | Rectal cancer risk is extremely low. |
Parastomal hernia (beneath stoma) risk is high. | Hernia risk is low; same as before surgeries. |
Moderate risk of intestinal obstruction primarily resulting from poor diet choices (ER visits a possibility). | Lower obstruction risk (however, still need to be vigilant with diet) |
Must stay hydrated, and increase use of electrolyte beverages. | Must stay hydrated, increase use of electrolyte beverages. |
Low stricture risk | Higher stricture risk from scar tissue as a result of multiple surgeries (dilation or surgery to remove strictures is always a possibility). |
Low risk of fistulas | Low risk of fistulas, but higher probability than with an ileostomy |
No incontinence issues | Possibility of incontinence or rectal leakage |
Skin irritation (itching and burning) always a possibility around stoma site. Treatment can take weeks to reverse. | Severe skin irritation (“butt burn”) an issue, but only during the first few months after surgery. Supposed to get better with time as anal skin adapts. Treatment is using creams/ointments and a hand-held bottle bidet and/or a toilet seat bidet ($300-$500). |
No hemorrhoids (“back door” is sealed). | Hemorrhoid inflammation always a possibility. |
Stoma prolapse or stoma ulceration is a possibility (treatment is stoma revision surgery). | Pouchitis or Cuffitis always a possibility resulting in high number of bathroom trips similar to a UC flare (treatment is antibiotics). |
Need to purchase medical (ostomy) supplies rest of life, insurance does not cover everything so can be expensive. | Few medical supplies for j-pouch needed, if ever. In the beginning, there will be creams/ointments and maybe a bidet toilet seat. |
Changing the pouch every 3-4 days can be stressful and inconvenient. Can create anxiety. | J-pouch can create anxiety with pouchitis and/or cuffitis flares. |
Bag leaks are stressful (doesn’t happen often but always a threat). Must carry supplies everywhere just in case. | Leakage is rare. Can hold off need to empty for over an hour. |
Need to empty bag 8 or more times per day/night. | Need to empty j-pouch 4-8 times per day/night and that’s after months of j-pouch stretching to accommodate more volume. |
The bag is “in the way” when doing activities such as household chores, washing the car or exercising. Must use a wrap to hold the bag close to body. | No issues with a j-pouch. |
Seatbelt – need a protector. Also when driving long distances, need to check the bag often for fullness and to adjust for easy flow. | No seatbelt issue, no issue with long driving--you will know (sensation) when the j-pouch needs emptying. |
Dressing for work or play can be an issue – belts in particular, and pant waist must be oversize to accommodate a stoma guard and to keep bag from strangulating. Tying the right shoe or putting on right sock puts pressure on the bag when bending down. The bag feels like it could pop from the pressure. | No issue with clothing choices. Dressing is easy, same as before surgeries. Can wear regular sizes and not worry about the j-pouch. |
Swimming and other activities can be a challenge. Could require special wraps and/or special bathing suit. | No issues with swimming and other activities. |
Weightlifting/Gym workouts can pose issues—Must use caution with certain exercises. Dressing for the gym can be challenging in locker room. | Weightlifting/Gym can pose issues—must use caution with certain exercises (deadlifts in particular). Some forums say no lifting over 25 lbs., whereas others say it is an individual limit. No issue with locker room dressing. |
Showering can be a challenge, particularly at the gym. “Wet bag” is uncomfortable after showering (temporary until it dries). | No issues with showering anywhere. |