In need of some help.

[SBAtl]

I'm a 41 year old male who was born with Spina Bifida. I've been in a wheelchair all my life and for the first 32 years of my life my mother was my primary helper and caregiver. She passed away in 2009 and my father took over. He just passed away today and I find myself in need of some help. My spine was damaged in the L4/L5 region. I have full motor control over all my limbs except my feet (can't wiggle my toes or feet at all, I can move my legs just fine though). I'm also incontinent when it comes to urine, but I have always worn adult briefs and they've always helped with that. The one problem I do not have a solution for yet is fecal incontinence. My digestive and excretory (intestinal) systems all work perfectly fine, except for that one final stop. I have zero control over my rectum and when my parents were alive they used digital extraction (rectal thermometer in my mom's case, gloved finger in my dad's case) to help extract stool. I've tried to do the same thing myself, but I find that due to reach and angle limitations I'm having a lot of trouble. Considering that my stool has not been solid since last September in part due to a doctor prescribing Clindamycin for a toe injury that it turns out didn't actually need that, my insides have been utterly rotten. I took the Clindamycin for a couple weeks then stopped when I was hit with the worst diarrhea in my life. The diarrhea eventually stopped but I have not seen solid stool since.

I've tried looking online for health care that could come to my home in my region (I live in Snellville, Georgia) but most websites seem to cater to people a lot older than myself and their list of services are rather vague as each one I looked at listed "Toileting" on them but didn't elaborate further than that. I'm at a loss as to what to do at this point. I'm still reeling from my father's death and am kinda overwhelmed by everything that has happened. I've been trying to do digital extractions myself but feel like I'm not having the success I should be. I would prefer to be able to handle things myself (and would love to avoid things like colostomy bags) but having someone help me and maybe instruct me on my methods would be a great help right now. I just can't seem to find anyone or any service in this area. (I've been to Shepherds Center a lot down here but they seem to have been hemorrhaging staff lately like crazy, the last gastroenterologist I made an appointment with there quit a couple days before I was to actually see him).

Advice?

I also apologize in advance if this post should have been put in one of the other forums. This one seemed like the right one given the topic.

[SCI-Nurse]

So sorry about the loss of your parents and caregivers. This must be a difficult time for you.

Were you checked for possible c. diff. infection after you took the antibiotic? If not, it is not too late to have that tested and get on treatment.

Have you ever done any other method of bladder management other than padding? Intermittent cath? External condom catheter? Both are generally easier to manage than padding, and more socially acceptable and better for your skin as well.

Of course if you are not on a good bowel care regimen and also use padding for bowel accidents, you would need to get on a better bowel care program to get off padding. Most bowel care regimens are developed with the assistance of a good rehabilitation nurse, not a physician, often advanced practice nurses who may specialize in this such as clinical nurse specialists or nurse practitioners. Shepherd should be able to provide this type of advice through their outpatient clinics, but it should also be available through any large rehabilitation center which provides care to a large SCI/D population. This consumer version of the clinical practice guideline on bowel management after SCI should also be an important resource for you:
https://www.pva.org/CMSPages/GetFile.aspx?guid=89d45479-1126-4c43-ac6f-d1d2469eec0e

You might want to learn about the Peristeen system for bowel management, as that has been used by many people with SB both in Europe and Australia.

It is unfortunate that you did not learn to do your own bowel and bladder care at a younger age. This is a common problem for children who are born with a disability, or who acquire one at an early age. Are you affiliated with a local chapter of the Spina Bifida Association? They might be able to help you with some resources, including case management assistance.

Are you eligible for state funded attendant (PCA) care? In most states if you are on Medicaid, you would be. It is difficult to know what advice to give you about this without knowing where you are located. A more complete profile would help. In some states, if you qualify, you obtain your attendants through an agency, while in others, you find your own attendants and the state pays them for the care activities that they assess you need. This usually includes bowel and bladder care. You would most likely have to train these people to do your bowel and bladder care though, so it would be important for you to learn much more about the care you need and how to direct and teach it to your PCA.

(KLD)

[triumph]

Welcome to Care Cure! I agree with the nurse about contact with a Spina Bifida Association. Do you drive? Wondering if you have considered joining a support group of SB individuals or adults with disabilities.

Your post shows an excellent explanation of your issues as well as writing skills and makes me wonder the level your education and work experience.
The recent loss of your father not only has you grieving, but also seeing the need for changes in your life - a difficult time.

Yes, I'm noting as well as the nurse that personal care is generally taught during early years. Did you attend school and how was the incontinence handled then?
You are in the right place with Care Cure and I hope you will stay connected as there are others with SB, and similar issues who may respond.

[Tetracyclone]

I'm so sorry for your losses. I cannot add to the advice already given, only wish to extend my sympathy and encouragement. Your situation sounds like it may be possible for you to manage if you find the right guidance. Luck and perseverance.

[SBAtl]

Sorry about the late reply, it has not been an easy week for me.

I'm currently taking Flagyl (Metronidazole) three times daily. I'm also trying to eat a bit more fiber as my stool has been extremely soft for months now, since my run in with Clindamycin.

I've tried cathing in the past and it is always painful for me and even occasionally resulted in blood in the urine (probably from insertion since that was the painful part).

I'm on Medicare and not Medicaid so I don't think I'd be eligible for the PCA care.

I don't drive. My parents were my drivers and now one of my brothers will have to be.

My education level is just high school graduation at this point. I attended college for a couple semesters down here but then a severe pressure sore issue happened to cut that short. Haven't held a job ever (not counting some freelance document scanning stuff I did for my dad). I did attend regular school and my incontinence was handled via briefs. Everything else I've ever tried has ranged from being uncomfortable to painful.

I'm in Georgia. Snellville to be exact. I apologize for not having my profile filled out.

I'll look into Peristeen. I'm seeing my general doctor again on Friday.

I called Shepherds as well and confirmed that they no longer have any gastroenterologists on staff anymore. Nor any urologists. When I pointed out that their Staff page on the website listed some of both I was told that it had not been updated in a long time.

I could try to call the place I went to for my colonoscopy, they don't deal with spinal cord injuries or handicapped people specifically though. It's just a general gastroenterologist office.

I'll also look into the Spina Bifida Association.

Thank you for the suggestions and sympathy everyone. That does mean a lot to me right now.

[SCI-Nurse]

Flagyl is the first line drug used for c. diff. Is that what you had? Failure of Flagyl to treat it is common, and if you have been taking for months, it is likely not doing anything. Suggest you see an infectious disease physician if you have resistant c. diff.

Have you sought out a urologist through Emory University hospital in Atlanta. https://www.emoryhealthcare.org/

Alarming that Shepherd has not been able to refer you to outside urologists or GI physicians with SCI experience!

What is your income source? Did you parents leave you with a special needs trust? Are you getting SSI or SSDI? Do you know if you are now eligible for Medicaid since the death of both your parents?

I would strongly recommend that you meet with a benefits counselor from your local ILC/CIL (independent living center). If you already are in touch with a social worker through a regional center or other SB associated program, that should be a resource for you too. https://www.silcga.org/cils/find-cil...ns-in-georgia/


Also, here is a contact page for the Georgie SB association: https://www.spinabifidaga.org/
Children’s Healthcare of Atlanta at Scottish Rite SB clinic should also be able to refer you to adult health practitioners who have experience with SB. https://www.choa.org/medical-services/neurosciences

(KLD)

[triumph]

I have just done a web search in regard to your interest in home medical care. I think you were referring to personal care givers, but I wanted to let you know that there's an organization in your area called Resurgia (you can Google them to get to their website, and apparently they are on Facebook) that provides physician/nurse care at home - this is NOT personal care to help with cathing, etc. However, you may want to consider applying for their services so you will have a doctor or nurse follow you at home instead of having to get someone to drive you to a doctor's office, etc. They might be able to refer you to sources for personal care.

You would be considered "homebound" and I'm pretty certain your age would not be a problem. Also, they bill Medicare and you cover the co-pay which in my experience is around $20 to $30 or $0 depending on services.

My husband and I are both paralyzed, elderly, and just this year we qualified for Visiting Physicians Association (they cover about 10 states, but not Georgia). I can't emphasize enough the thorough care we have been getting. They even brought a mobile chest exray as we had not had that done in ages. They also brought an ultrasound technician and equipment to check an issue in my husband's carotid artery.
I am certain we are eligible due to the need for wheelchairs more so than our ages.

Hope you let us at CC know what you are doing as we are concerned that you find help. If and when you contact the Spina Bifida Association you may want to ask them about Resurgia.

[dpatrick]

I’ve used Metamucil to give a lil form to the stool,,I use 1/2 tsp. 8 hrs before regime.
also,I’ve seen those hand held digital stim devices that may help with the reach.i think you can find them in the Samson’s Preston catalog..I’d try googling it they may have an online site.
hope this helps..good luck

[SCI-Nurse]

I’ve used Metamucil to give a lil form to the stool,,I use 1/2 tsp. 8 hrs before regime.
also,I’ve seen those hand held digital stim devices that may help with the reach.i think you can find them in the Samson’s Preston catalog..I’d try googling it they may have an online site.
hope this helps..good luck

Excessive Metamucil may not firm up stool...it often just makes it a rubbery mass that is very difficult to manually remove. Also, there is no way that taking it 8 hours prior to bowel care will effect the stool you get with that bowel care event...gut transit time in most people with SCI is much longer than 8 hours (often up to 72 hours).

Since the OP has SB, it is most likely he has a flaccid anal sphincter. Digital stimulation should not be used with this type of bowel. Manual removal and straining are the recommended methods, and I don't know of any device that can safely be used for manual removal, which is why Peristeen may be his best option.

(KLD)

[EyesOfTexas]

I'm sorry to hear about your troubles! I don't have a lot to contribute based on your SB, but I also suffered from C Diff almost 3 years ago. I had six relapses over five months. It's a hell of a disease!


Flagyl is actually not the recommended first-line treatment anymore. Although many people recover from C diff with one treatment of Flagyl, it's very common to relapse. The recommended first-line treatment is now vancomycin. It's much pricier, but it leaves more of your natural gut flora intact, which is the key to keeping the C diff at bay. There is also another drug that was manufactured specifically for C diff: fidaxomycin, also known as Dificid. It's extremely expensive, but it is effective.


For my particular case, I had two courses of Flagyl, two courses of vancomycin, a longer, tapered course of vancomycin, then a 90-day course of vancomycin.


I agree with the SCI Nurse about checking with a G.I. doctor or infectious disease doctor. I did both with mine, and they had helpful advice.

Also, if you are looking for more specific C diff advice, there is a great forum:
http://cdiffdiscuss.org/PHPBB3/


Keep in mind that this is not specific to people with disabilities, but just anyone that suffers from a C diff infection.