Ostomy Question

[Taylor7172]

Hello everyone, my son is in the hospital receiving treatment for a serious infection and huge pressure sores. A surgeon is recommending he have an Ostomy. Does anyone have any comments they are willing to share. I don't want him to commit to this life-changing surgery without more facts.

He is a T1 Complete for 2.5 years. Emotionally he is not doing well and does not do anything for himself yet. A caregiver does manual extraction of his bowels every morning, gets him showered and dressed. He seldom leaves the house.

Would an Ostomy allow him more freedom? Would it make any change to his current life style?

Does anyone know great doctors in the Riverside/Temecula area? We just moved from Orange County California to Hemet.

Thank you.

[bungholebob]

i'm a c6/7 and i had one done last year and i can say its the best thing i have ever did, my cousin who is a t5 para also has one and he said he wishes he would have gotten one a long time ago. it has allowed me to have way more freedom you don't need to worry about having to do your bowels all the time or making sure you have somewhee to do them at. or having help doing it s well.

[Broken Doll]

Both my friend and I are interested in finding a better solution to bowel management and looking for more information on an ostomy, colosotomy and illeostomy, or any other suggestions to improve our quality of life in regards to the effect the bowel program has on us.

I've listed some of the questions we have, but would appreciate any other comments on issues that we haven't thought of. Below the questions, I describe a bit about ourselves and why we want another option besides suppositories and digital stimulation.

1) What is the difference between the -ostomies?
2) What are the pros and cons of each one?
3) How do they work?
4) Is there any odor or noise?
5) What happens with gas?
6) Can you see it under clothes?
7) Can it leak?
8) What does the stoma look like?
9) Are the bags disposable?
10) Does it interfere with sexual activity?
11) What are partner reactions to an ostomy?
12) Is the surgery reversible if you don't like it?
13) How long does it take to recover from the surgery?
14) What kind of complications can arise with an ostomy?
15) What if you have diarrhea or are constipated?
16) Can the bag get overflowed?
17) Does the bowel empty all the time or does it fill up at a certain time of day?
18) If you slept on your stomach would poop squish out?
19) If ostomies are "the best thing ever done" (as I've seen quoted a few times here), why would any para or quad want to stay with suppositories or enemas? Or why isn't there much information given about them as options in the rehab?

My friend is a C-7 and I'm a C-6. We've been injured around 25 years and are very fit and active. Both of us use Magic Bullets and digital stimulation. We do our bowel program lying on our sides in bed every other day. Sitting in a commode chair has never worked for either us. One of the reasons is the drop in blood pressure when we take our corsets off.

My C-7 friend is independent with her bowel program, but her life has turned into a living hell with fissures, dysreflexia and now the need to do her program everyday and sometimes twice a day. The pain and discomfort is so unbearable that she is up to three narco/vicodan just to get through her bowel program. She sweats so much that she has to change her clothes three times. As a result of this daily trauma, she is tired and miserable the next day. Embarrassing and messy, the smelly mucous 'snot' blowout that can occur from the suppository, usually shortly after its finished; is happening even more and at any time of the day.

I have some of the same issues but not to the degree of her suffering yet. I'm dependent on a caregiver and I hate everything about it. I've gotten over the humiliation, but wish I could do my own bowel care so if I need to empty when it's not on my scheduled routine, I can do it. I'd also like to protect myself against the event when, or if, a caregiver doesn't show up and you have to empty your bowels. I'd like to be able to travel by myself too.

Your advice on how we can change the quality of our lives will be so appreciated. Thank you.

[SCI-Nurse]

It sounds like your son needs some significant counseling and more therapy if he is so dependent in self care, and also has allowed himself to get such bad sores. I would not expect a colostomy to change his life for him.

Regardless, if his pressure ulcers are close to the rectum, it may be necessary to divert the stool away from this area. I expect he is requiring surgery to repair his pressure ulcers. This will be a long recovery and he will need to make major changes in his regimen and take more responsibility for himself if this is going to be successful.

I would recommend that he seek care through the Loma Linda University Hospital in Riverside, both for his surgical needs (colorectal and plastic surgery) and for more rehabilitation and counseling.

(KLD)

[SCI-Nurse]

1) What is the difference between the -ostomies?

• Colostomy: opening in the large intestine for stool to the abdomen. Can be done proximal (ascending or transverse colon) or distal (descending or sigmoid colon). The more distal, the more formed the stool.
• Ileostomy: opening from the small intestine to the abdomen for drainage of stool. This stool will be very liquid, and very caustic to the skin. Sometimes there are problems with dehydration because most water absorption is in the large intestine.
• Urostomy: an opening in the abdomen for drainage of urine, usually through an ileal conduit. This does not replace bowel care, only bladder care.

2) What are the pros and cons of each one?

See above.

3) How do they work?

For both the ileostomy and colostomy, most people wear an appliance (bag) that drains stool throughout the day. For some people who use a distal colostomy, they irrigate (do an enema) through the stoma every day or every other day and don't have to wear an appliance, but this is less common.

4) Is there any odor or noise?

Yes, there can be. It is important to modify your diet to decrease problems with both, and some people need to use medications or deodorant drops in the bag. Bags with charcoal filter gas relief valves help with some of the odor. Noise can occur as well, but is usually not severe.[/quote]

5) What happens with gas?

It comes out in the bag. There is rarely gas with an ileostomy, but there will be gas with a colostomy.

6) Can you see it under clothes?

Yes, if you let the appliance fill up with gas, it can show under tight fitting tops.

7) Can it leak?

Yes, if the appliance is improperly applied, is not the right type for you, or you wait too long to empty or change the appliance.

8) What does the stoma look like?

This is what a healthy colostomy stoma should look like.

9) Are the bags disposable?

Yes, but not all insurances will cover multiple bags per day, so many people rinse them out and reuse them. The most popular types fit onto the appliance faceplate (which is glued to your skin) like a Tupperware container, and you can snap them on and off for emptying.

10) Does it interfere with sexual activity?

No, but many people prefer to be sure their bag is empty, and may use a cloth bag cover for this.

11) What are partner reactions to an ostomy?

It depends upon your partner.

12) Is the surgery reversible if you don't like it?

It depends upon the type of surgery you have, and if your rectum is left in place or removed. Most surgeons will tell you that you should not have the surgery depending upon being able to reverse it.

13) How long does it take to recover from the surgery?

Again, it depends upon the type of surgery you have. If you have the rectum removed, or have an open colostomy, then you should expect to spend about a week in the hospital and another 4-6 weeks recovering. If you have a laparoscopic procedure, it can sometimes be done as day surgery (although we do not do this for people with SCI).

14) What kind of complications can arise with an ostomy?

Surgical infection or wound dehiscence, complications of anesthesia, stoma prolapse, skin breakdown around the stoma are the most common complications.

15) What if you have diarrhea or are constipated?

You take medications and adjust your diet to manage these, just like you do now.

16) Can the bag get overflowed?

If you do not empty it when it is more than about 1/2 full, the weight of the stool can pull the appliance away from the skin and it can leak.

17) Does the bowel empty all the time or does it fill up at a certain time of day?

Again, it depends upon the type and location of the colostomy.

18) If you slept on your stomach would poop squish out?

If you "bridge" the appliance with pillow or foam pieces, this is unlikely to occur.

19) If ostomies are "the best thing ever done" (as I've seen quoted a few times here), why would any para or quad want to stay with suppositories or enemas? Or why isn't there much information given about them as options in the rehab?

Many rehabilitation centers DO provide information about colostomies, but they are rarely recommended that soon after injury. It is major surgery, and it is too soon to tell if the newly injured person is going to get return that may include bowel control. Many people do fine with their bowel care with a properly designed program, and don't want to have another challenge to their fragile body image at the time of having a new SCI.

You most likely would need to modify your corset to accommodate the appliance, as it will not work if bound up under a corset.

I would strongly recommend meeting with a good colorectal surgeon, ideally one with SCI experience, to discuss your options, and also to meet with a CWOCN (certified wound, ostomy, and continence nurse) to go over care and appliance management before making up your mind. The CWOCN should also be able to refer you to a peer counselor, usually through the local Ostomates organization.

(KLD)

[Broken Doll]

Dear Nurse KLD,

Thank you for the information I have been unsuccessful in finding otherwise.

Can you recommend A good collateral surgeon and CWOCN in the San Diego area?

[Broken Doll]

Do you know any female quads that would be willing to share their experience with us?