Constipation and Sacral Nerve Stimulation?

Hi, @roseee and welcome to Mayo Clinic Connect! You are in a helpful place to learn from and encourage others. It sounds like you have been on a quest to improve your constipation for some time.

I am a patient at Mayo Clinic MN but I do have sacral nerve stimulator experience. I have a few thoughts after reading you want to leave no stone unturned that may help your worsening symptoms.

1. I read through this discussion and notice varying outcomes from pelvic floor therapy. @jlstjohn created this discussion exploring options after trying so much including therapy. @leerose mentioned her husband needing to go to several pelvic floor therapists before finding one that was able to specifically help him. Also, it didn’t work for @lisalucier who ended up having surgery. I was diagnosed with having coordination problems, tried therapy locally then pursued Mayo’s program. For me, it was not quick but I don’t think we were addressing problems that got there quickly, either. I am not sure there is a quick fix. It was also the foundational thing that made it possible to more successfully address other things going on in my body at the same time.

2. You may be interested in research, here a PubMed article from 2019.
- Sacral nerve stimulation for constipation: long-term outcomes https://pubmed.ncbi.nlm.nih.gov/31147802/

3. I looked up Mayo Clinic Colon and Rectal Surgery enough to see services they provide vary among Mayo locations, and that they address more than what is listed on their website. You may find out the best information by pursuing an appointment, contacting them here: http://mayocl.in/1mtmR63

This link has a listing of available doctors if you are interested to review:
- Mayo Clinic Colon and Rectal Surgery Overview: https://www.mayoclinic.org/departments-centers/colon-rectal-surgery/sections/doctors/drc-20312725

You mention getting worse so much that your symptoms dominate your life. What specific symptom(s) are the biggest problem right now? Do you have experience with pelvic floor therapy?

@jlharsh Thank you for these links. My main concerns are that the amount of Miralax I am having to take is doing further damage to my system, that my bloating is so bad that I look pregnant, and that I have to eat a very limited diet with few fruits and vegetables to reduce the bloating somewhat. The 6+ caps of Miralax were what my doctor told me to do to keep my system moving while we worked on other treatments, but prescriptions actually make my condition worse and that was well over a year ago and we have found no other help for me.

I've been to 4 physical therapists and have been doing daily exercises for a year.

I've been treated for SIBO with different antibiotics 3 times and done the elemental diet several times. I've had EGDs, colonic transit studies, anorectal manometry, barium enema, and more testing. I've seen 6 GI specialists and 3 colorectal specialists.

@roseee Also, I should mention that I understand that a high fiber diet with plenty of fruits and vegetables is generally recommended for constipation and is what I used to eat. I have seen a dietitian. But fiber just makes my condition so much worse now and I have sensitivities to FODMAPs, latex cross reactive foods, and others.

I do not have signs of IBD. I do have a diagnosis of nonradiographic Ankylosing spondylitis. The gastroenterologist I saw at Mayo in Jacksonville said the AS was irrelevant to my digestive problems, but I wonder...

@roseee You have been through the ringer trying to manage your constipation with related symptoms it is causing.

You mention an additional diagnosis so I went to the home page and searched for it. You may find it helpful to review what others are discussing there if you have not already.
- Ankylosing Spondylitis Discussions https://connect.mayoclinic.org/search/

You also mention questioning what one GI doc you saw at Mayo Jacksonville said, that your AS was irrelevant to your digestive problems. Some of the AS comments above discuss digestive concerns. Not the same thing but related to back mobility is Lumbar Spine Stenosis and others have talked how both these problems can be related to digestive function: @marip, @anniebrook, @upstatephil, @gently, @jdlr.

I want to address your biggest problems right now, that of MiraLAX causing damage and bloating in your GI. I am surprised to hear you say this about MiraLAX. I was told while it isn’t normal to need it long-term at my age it will not hurt me. I have been taking 1 1/2 capfuls daily along with a GI med and Senna (since they all work differently). I have figured out a schedule splitting them all up and that consistency in my diet as well as alternative meds keeps me pretty steady. I agree, the bloating is horrible and the combination of all of this has helped settle it down.

You must work with a rheumatologist as well. Physical Medicine and Rehabilitation at Mayo Clinic MN is the area that treats pelvic floor dysfunction I referred to earlier and I notice areas that treat Ankylosing Spondylitis include Rheumatology and PM&R as well. Mayo Clinic’s strength is collaboration so may well be worth discussing with your providers. Here is information about this department, an overview of their focus to diagnose and treat a variety of medical conditions affecting the brain, spinal cord, nerves and the musculoskeletal system:
- Mayo Clinic Physical Medicine and Rehabilitation https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/overview/ovc-20467039

All this to circle back to your initial comment here on @jlstjohn’s discussion about Sacral Nerve Stimulation. I hope I am providing food for thought and not confusing your situation.

You mention MiraLAX damaging your body. What is happening when you take it now? What do you think your next step should be?

@jlharsh Thank you for such quick and thorough replies.

My Miralax dose is very large: I have to take at least 6 caps every day. With some frequency I have to add other laxatives as well. I have been told my colorectal surgeons that my colon is just going to stop responding to the medication and I fear my body is already dependent on meds.

The spinal issues you bring up are indeed food for thought. I have "degenerative disc disease, mild lumbar spondylosis L5-S1" according to recent imaging. My rheumatologist said it was unremarkable, but I didn't think to ask him about digestive impacts. I wonder if I should explore the issue further, or if "mild" does indeed mean it's not a problem.

I do have a rheumatologist, though not at Mayo. When I initially came to Mayo's gastroenterology department in Jacksonville, it was in hopes of collaborative care, but the doctor I saw would not discuss anything other than pelvic floor dysfunction. (I agree that I have that and continue to try to treat it, but I also have other problems.) When I am able to afford to travel to Mayo again in the future, maybe a different gastroenterologist would have a different approach. Or should I start with a colorectal surgeon or a rheumatologist? The wait time for appointments is long and I am not sure what department to reach out to first.

@roseee The information from your surgeons that your body is going to stop responding to MiraLAX is interesting. I have heard that from other people but not from a doctor. I am a curious person and wonder why this is. To me, this means something in your body is causing your colon to work this way and worth continued exploration.

I think I mentioned before, I am a Mayo patient in Rochester. I went through the Consultative medicine process because I did not have one particular specialist that stuck out as the primary need at the time. This may be what may fit your needs. I saw an Internal Medicine Doc at the beginning and end of my initial Clinic visit, and he coordinated my care through the process. I had access to him for 30 days following and was seen by specialists as needed from that point.

Mayo’s description of the Consultative Medicine Program:
This program provides evaluation and care for adults with complex, unexplained or hard-to-diagnose symptoms. The team works to identify possible causes and outline next steps, which may include treatment, further testing or ongoing care.

My urging is to prepare yourself with exactly what problems you are having and rank them in order of how serious they are from your perspective. With each, be able to provide information as to what related diagnosis you have if any, what you have done about it, what doctor(s) you have see for it, etc. Mayo will take this information and determine what you are trying to accomplish so they can best determine if they can help you, and if so what their approach would be.

It sounds like you are closest to the Jacksonville Mayo location. My experience is in Rochester. They will be able to tell you if they can help you and if so, what location would be best. I think if it were me I would take one step at a time and initially find out if they think they can help you. You could have one of your doctors submit a referral to Mayo Clinic or you could self-refer here: http://mayocl.in/1mtmR63

In the meantime I will keep my eyes open for other members. Have you been able to connect with anyone in other groups yet? Also, I agree he amount of MiraLAX you take is a lot. How much do you take at one time?

It may not be most effective when I take the Miralax all at once, though I'm not sure I can tell. Do you have a recommendation?

I will set up an appointment for consultative medicine. Thanks again.

82 yr. Old male, tortuous colon, bad sigmoid diverticulosis and terrible constipation seeking help with bowel movements.

@roseee
I can certainly tell you what my routine is with laxatives. Here is what Mayo Clinic has as an overview. There is a nice chart explaining how each works.
https://www.mayoclinic.org/diseases-conditions/constipation/in-depth/laxatives/art-20045906
I eat fiber-rich foods, lots of whole grains. I drink a consistent amount of water. I also exercise regularly. I use olive oil on quite a bit of my food that works as a laxative. Maybe try adding some/more EVOO (extra virgin olive oil) at meals and splitting your MiraLAX and taking it throughout the day.

As far as medications I use MiraLAX, senna (and senna tea) and prescription lubiprostone. They are each split and taken at different times which seems to help keep my system working consistently. Based on my experience I would recommend having a conversation with your GI doctor about coming up with a plan to make changes one at at time based on that makes sense with what they think is happening with you. You know your body and they know the science. Together you’ll make the best decisions.

I am interested to hear what you find out about getting an appointment at Mayo Clinic. Will you come back and provide updates? Do you think you will make MiraLAX changes, or maybe talk to your doctor?

Hi,@william1543.

If you are comfortable, it may help if you share more about your situation so others will know more as to how they can comment.

Are you working with a doctor that is helping you address living with your torturous colon, diverticulosis and constipation? What types of things have you tried?