loop vs end ileostomy

[Quad56]

Hi
I'm a quadriplegic guy since 2003. My bowel becomes lazy and paralyzed, surgeon suggested me ileostomy it may be complicated to deal because my paralysis but i have no choice, i lost too much weight i feel all times full and my bowel program is a nightmare it takes me all day.

I have read many stories about stomed persons who suffers from bowel cramp and mucus, someones who may go to bathroom to poop. i was chocked .how could be ? i have fear if i make that decision it will be nothing then other hole to take care. My surgery tried to assure me that it's nothing and it may not happen...no i don't trust the proof that many patients was not wormed before and they was surprised by these discomforts.

Due to my health condition, my doctor can't tolerate a major surgery to remove bowel and rectum personally if i have that choice i would remove all.

So for not removed bowel what could be better ?:
-loop stoma to reduce the pressure into bowel and preventing colitis but the risk of passing amount of stool.
-end stoma to cut of with stool but who knows ?

please help i'm lost, depressed and desperate

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Quad:
I am a former physical therapist who worked principally with spinal cord and head injury.

Neurogenic bowel can be agonizing for someone like yourself with a SCI. A daily bowel program can take hours every morning and often with incomplete evacuation results. The emotional toll is also high.

A loop ileostomy is never ideal as a long-term or permanent ostomy. The long remainder of intestine that is off-line and defunctionalized does not make for a happy segment of intestine. The intestine will continue to produce mucus and serous secretions as well as reguraly slough cells/cellular debris that will need to pass through and exit via the anus. If your large intestine is already slow and sluggish due to neurogenic bowel, it will remain slow and sluggish in trying to move mucus/serous secretions down and out through the anus. In addition, a segment of intestine at rest and off-line will become inflamed from time to time due to the lack of short chain fatty acids that are found in fecal matter/poop and that serve a vital role in nourishing the inner lining of the intestine.

All to say . . . There are definite downsides to a loop ileostomy or an end ileostomy where there is a lengthy segment of remainder large intestine and rectum + anal sphincters left in place.

I am dealing with a newly found fistula that is a consequence of a retained rectal cuff where the tissue has devitalized in the 6 years since I had my initial emergency surgery. This fistula is unpleasant, messy, and demoralizing. The rectal cuff and sphincters were left owing to the urgency of the surgery where sepsis was the larger and more grave concern. Leaving a retained rectal cuff or rectal stump for the long-term is never ideal. Like an abandoned and aging house, floorboards creak and water pipes leak. But my health has been too compromised to have considered later removal of the rectal cuff with closure of the back-end. Now I am having to make decisions where none of the options have the likelihood of a positive outcome. I am going to have to choose the lesser of the negative choices.

If I were you, I would seek the opinion of a physiatrist or physician of rehabilitation medicine at an accredited rehabilitation facility with expertise in SCI. You need the opinion of a physician of rehabilitation medicine who works with cervical SCI patients and their long-term care.

I would also think that any surgery could be proposed in 2-3 stages. One surgery to remove your large intestine and place an end ileostomy. Followed by months for healing. A second surgery to remove the rectum and anal sphincters. A surgical plan that would involve planned procedures and incremental stages followed by periods for healing might be a realistic approach considering your overall health and stamina.

I am on Palliative Care and have absolutely no appetite for any further surgery or intervention. But I’ve got a tunneling fistula that has made itself known due to a rectal cuff/stump that has been retained for too long and where the tissues have decayed.
Whatever I decide will be decided with care and thought.

Get an opinion from a physiatrist who works with SCI. A surgeon will not have the wider view of care unique to SCI that a physiatrist will have in looking at your needs.
Karen

[Quad56]

Thanks Karen.

If I were you, I would seek the opinion of a physiatrist or physician of rehabilitation medicine at an accredited rehabilitation facility with expertise in SCI. You need the opinion of a physician of rehabilitation medicine who works with cervical SCI patients and their long-term care.

I asked but they have no idea. Their knowledge does not go beyond their specialty.

But i finished to accept from what you described that ileostomy would be something impossible to mange especially for someone paralyzed like me. I couldn't imagine my self dealing with two "holes". I don't have strength to make 2-3 operations. I have reached my limit. i don't have other choice, things are going to worst and...i don't know.

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Quad:
That is a genuine disservice to you if a physiatrist (physician with speciality in rehabilitation medicine) was not able to offer you an educated opinion of a loop or end ileostomy. That is a travesty.

But I am not surprised, unfortunately. Sourcing quality care for chronic conditions is a crap-shoot.

I can appreciate that you are emotionally and physically exhausted with the daily ritual of a bowel program that is less and less effective. Compounded with the other realities that confront you in living with a cervical SCI.

A loop ileostomy (even if necessary to retain the downstream small/large intestine owing to minimize surgical time) would likely give you relief of your current symptoms (bloating, retained fecal matter, feeling “blah” due to retained fecal matter and toxins, inadequate bowel program as currently exists). This alone might make you feel better emotionally and physically and give your body an up potential. Who knows, maybe you could later tolerate surgery to then resect the deactivated lower intestine and rectum and create an end ileostomy?

A loop ileostomy does involve two aromas in close proximity to each other. A portion of ileum is brought to the surface and sliced longitudinally about 2 inches (like cutting a hot dog along its length), the two ends are then rolled/folded back, and stitched into place as two separate stomas/holes. The upper stoma is the functional stoma that connects to the active small intestine and from which fecal output will empty into the pouch. The lower and smaller stoma is the mucus stoma that connects to the deactivated lower remaining small/large intestine. The ostomy wafer will enclose both stomas. A loop ileostomy is a larger entity to successfully pouch than an end ileostomy. But it is all quite doable. I suspect you would need to have a caregiver to assist you with that fine motor and hand dexterity needed to manage an ostomy.

Creating a loop ileostomy would be a “simple” procedure as compared to creating an end ileo and resection of the whole nine yards of large intestine and rectum/anus. It would potentially give you significant relief from what is weighting you down. That might be worth it, in and of itself.

A loop ileostomy also can be reversed fairly easily if it does not provide you with any relief.

As far as the remaining and defunctionalized downstream intestine and concerns of how to manage the inevitable mucus/secretions/spillover fecal matter that may migrate to the mucus stoma . . . . and your neurogenic bowel . . . It would be possible for a caregiver to learn how to perform an antegrade infusion (antegrade enema) where an irrigation bulb or irrigation syringe would be inserted into the mucus stoma and a measured volume of warm water would be introduced and allowed to naturally flow downward to flush/clean retained material. The infused water would exit the anus. You would likely sit on a commode for the process. How often would this “flush” need to occur? It would depend on you and the frequency of mucus/serous fluid secretion from the resting/off-line intestine. Maybe once every two weeks would be a quess-timation.

I live with frail health, myself. There is no “fix” and no “getting better” that medicine can offer me. Until someone occupies a similar life space, or really is hard to conceptualize.

I have decided no further medical interventions. The fistula that has recently made itself known will be treated conservatively. As the colon surgeon expressed to me yesterday, “Surgery is not
An option. You would never heal. Never, ever. It would be like sewing together tissue paper.”

I do not to be in a worsened state than I already am.

I bet you also feel the same way as you consider what to do.

Have you looked into Palliative Care? It is a model of care for people with serious, life-limiting illness. It is whole person care - physical, emotional, spiritual self. It looks at making the best of a less than ideal situation. I never have to explain myself to my Palliative Care team. They “get it.” They understand what it is to live with health that will not improve. You would likely find benefit from connecting with Palliative Care and its model
of care. Palliative Care has been, and continues to be, a positive experience for me. I think a Palliative Care physician could weigh in with you and give you compassionate guidance about your neurogenic bowel and options.

Your primary care physician should be able to make a referral to Palliative Care for you. Give it some thought. There is no down-potential to contacting Palliative Care and the potential for much up potential.
Karen

[Quad56]

As far as the remaining and defunctionalized downstream intestine and concerns of how to manage the inevitable mucus/secretions/spillover fecal matter that may migrate to the mucus stoma . . . . and your neurogenic bowel . . . It would be possible for a caregiver to learn how to perform an antegrade infusion (antegrade enema) where an irrigation bulb or irrigation syringe would be inserted into the mucus stoma and a measured volume of warm water would be introduced and allowed to naturally flow downward to flush/clean retained material. The infused water would exit the anus. You would likely sit on a commode for the process. How often would this “flush” need to occur? It would depend on you and the frequency of mucus/serous fluid secretion from the resting/off-line intestine. Maybe once every two weeks would be a quess-timation.

This is the major problem. i live in a 3'rd world country and only what i can offer is a caregiver/nurse who change appliance and make basic care. My mother who takes care of me. She's getting old and have multiple health problems.

I need something which cut off with bowel program definitely. If i understood correctly, an end ileostomy is less messy but more irritating for bowel right ?

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Quad56:
I wish you had competent and wise medical counsel to discuss options for relief of your sluggish neurogenic bowel and daily current bowel - pros and cons, risks and benefits.

A loop ileostomy (keeping in place all downstream/disconnected intestine) would likely be a preferred starting place. A sort of trial period with an ostomy. It would be the least invasive surgical option. It would bypass your large intestine entirely (it is usually the large intestine affected by neurogenic bowel). The loop ileostomy could also be reversed if it not found to benefit you or if you later change your mind.

The downside of a loop ileostomy: 1. The stoma size is larger and a bit more troublesome to pouch; 2. The downstream retained/disconnected segment of intestine will continue to produce mucus and serous secretions that will need to exit via the anus. Inflammation of the retained length of intestine disuse colitis) may also flare from-time-to-time; 3. Stoma output is usually of a higher volume then an end ileostomy as it is placed higher up the small intestine where digestive material has a higher % of water. The pouch needs to be emptied more frequently as compared to an end ileostomy.

A loop ileostomy is usually a meant to be a temporary ostomy
For the reasons above. But you could always start here and later undergo an end ileostomy with removal of the downstream intestine - as your health allows or as a phased 2-3 surgery process.

An end ileostomy would have a single stoma, that end of the ileum brought to the surface of your abdomen. The downstream large intestine would be removed in its entirety. The rectum and anal sphincters can be excised and the backend closed (proctoectomy), which adds surgical time and complexity OR A rectal stump or smaller rectal cuff can be retained + anal sphincters, which is a less invasive approach if your underlying health is fragile or there are concerns of incomplete healing of a perianal wound.

An end ileostomy would be a long-term and permanent approach.

A direct anastomosis of the terminal ileum (end of the small intestine) to the rectum would also be a possible surgical option. There would be no ostomy. The large intestine would be excised/removed and the ileum directly stitched to the rectum or anus.

Those are the options that I can see - but I am not a physician and nor do I know you as a unique person.

Tele-medicine is growing in access. That is, where people are able to have consultations with physicians even at long distances using computers, the internet, and real-time video-conferencing. Most large hospitals, and especially teaching hospitals and universities offering MD degrees, in the United States offer video consultations. The costs are quite reasonable (reasonable as compared to overall health care costs). Would you have access to a video-conference with a physiatrist/rehabilitation physician who works with SCI management? To get a valued opinion and to have a back-and-forth discussion with?

You genuinely would benefit from a 1:1 and personal consultation with a physician who understands cervical SCI and your unique long-term care needs.

You have my respect for advocating for yourself as you are. That requires significant effort and a sustained inner will and drive on your part. Kudos to you.
Karen

[Quad56]

Quad56:
I wish you had competent and wise medical counsel to discuss options for relief of your sluggish neurogenic bowel and daily current bowel - pros and cons, risks and benefits.

The downside of a loop ileostomy: 1. The stoma size is larger and a bit more troublesome to pouch; 2. The downstream retained/disconnected segment of intestine will continue to produce mucus and serous secretions that will need to exit via the anus. Inflammation of the retained length of intestine disuse colitis) may also flare from-time-to-time; 3. Stoma output is usually of a higher volume then an end ileostomy as it is placed higher up the small intestine where digestive material has a higher % of water. The pouch needs to be emptied more frequently as compared to an end ileostomy.

Believe or not your the most honest person who has explained me the situation.

No this is too much for me. I'm not able to take care my self so imagine putting my self into a such mess.

Thank you Karen for your kindness, I wish you and all of us a good rehabilitation and better days.