Multiple Sclerosis Community
MS and bowel incontinence
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

MS and bowel incontinence

Hi all,
I know this can be a sensitive question, but I am concerned about my dear husband. He was diagnosed with Addison's disease in 2008. According to his Endocrinologist, he has a pretty severe case. Then in 2010 hubby was limping. I asked if his leg was bothering him? No he replied, but sometimes it seems to not want to lift, and it drags. I looked at his leg (left one) and his calf muscle was wasting. Big red flag to me (I am an OT) and hubby has aunt who has MS. He had an upcoming appt with Endo Dr; hubby told him about his leg. Dr ran him thru a few quick tests, and afterward swore under his breath. The very next morning we were at an appt with a Neurologist. Neuro did emg tests, reflex tests, etc. told hubby he hated to say it, but he is not one to gloss things over, and Dr was almost certain hubby had ALS/Lou Gehrig's. Over the course of 3 weeks, hubby went for MRI, lumbar puncture, and other tests. At the appt to get results, we actually got "good" news..in the fact it wasn't ALS, but MS. Dr said he had never had a case of MS present like hubbys.
Hubby had lesions on cervical spine, and in the brain. Also Oligoclonal banding in his spinal fluid. He has been on Betaseron since the diagnosis, and luckily tolerates it well. Also a large monthly dose of steroid to attempt to keep inflammation/relapses down. His last MRI (1yr ago) showed no new lesions.
He still has significant left leg weakness. Not helping matters is he had a swollen tender lump on his right Achilles area. Turned out he had a bone spur that had chipped off, and had shredded the tendon, he had been walking (limping more) with it for almost a year before I flat made him see a Dr for it. He had surgery 1 yr ago this month, bone chips removed, tendon repaired. Mind you this was on his "good" leg so to speak. He was off work almost 16 weeks with the surgery/healing time. Thankfully that surgery was a succdss. He currently still works full time, his job entails a lot of walking. He still has leg weakness, mainly the left leg with the calf muscle atrophy. He also has had some urinary issues even prior to the MS diagnosis. As in he will not realize his bladder is full, and has had times of not making it to the rest room. His bladder has also been described as "huge" on CT scans. The last several months he has now started having fecal incontinence. He will be walking along, or bend over for something, and diarrhea is there. No warning, no cramping, no nothing. He drinks plenty of water, and is not constipated. From all I can find, bowel problems are not unusual with MS, but are usually more related to constipation. We have spoken with the Neurologist about this, but he seems to think hubby needs to drink more water. Now we fully trust and respect his Dr, but we know it is not lack of fluid intake causing this. To top it off, when he has had an Addison "Crisis" it will start with uncontrollable diarrhea..so now we are having a hard time with "Is this Addison's, or MS?". I have read where fiber intake can help, anyone have a thought on that? Or any suggestions? This is really affecting not only his daily life, but his job, and his esteem...
Any feedback or ideas/suggestions will be appreciated.
Thank you for reading through all of this.
C
11 Comments Post a Comment
Blank
751951_tn?1299202836
I would think soluble fiber might be helpful, but I would caution you to start gradually.  It might have the opposite effect.  
Blank
695104_tn?1390988088
Thank you for replying. I agree, about starting slow. I will buy some fiber bars, he used to eat them, and honestly I don't know why he stopped. Thankfully he has always been a big water drinker, and I know with fiber fluid intake is important! And thankfully (or not in his opinion..lol) he has me for a wife, and I hope and pray to find something that will help him..he is such a great guy.

Thanks again, PastorDan. I read some of your journaling...will keep you in prayer. I can only imagine the limbo of uncertainty. I do know that hubby's neuro also took blood and sent to the Mayo Clinic, said there is a test to see if the MS involves optic nerves/optic neuritis. It took several weeks, but blood work came back negative...which was a good thing. I wish I could recall the name of the test. I will have to research it now, as it will bug me until I find it..Just thought I would mention about it, as you have eye issues. I know we are all different, but you never know when or where you might find something that makes you say, "A-ha!"
Take care,
C
Blank
5887915_tn?1383382380
Hi there & welcome,

I am sorry your DH is having such a bad time of it. In regards to the diarrhea I would also suggest soluble fibre like "psyllium husks" but would also caution it to be added slowly to his diet. Also if you take something like that it is vital to drink lots of water after taking it or it could cause problems.

Psyllium husks have many health benefits but must be taken with caution. These husks swell up in the intestine & therefor will produce a more formed stool. Hence the need for lots of fluids to enable it to swell. It can make a person feel quite bloated & uncomfortable if too much is taken. It can be taken in the form of something like Metamucil mixed in a big glass of water or you could sprinkle it on cereal preferably taking it in the morning.

I'm sorry I don't know if this is Addison's or MS causing this problem. I would also suggest purchasing some suitable incontinence pads in the interim so that embarrassing moments aren't visually noticeable. If something does happen then carrying a handbag sized pack of baby wipes are great for quick clean ups.

I hope this helps a little. Good luck with it all.

Karry.
Blank
Avatar_m_tn
I have the same problem quite often. A sneeze, cough, or bending over will result in the accident happening. I have a DX of MS & PTSD, & IBS.

The way my doctor explained it is that due to spasms in the colon the food is pushed through the colon faster than it should resulting in the diarrhea effect.

I am now taking Dicyclomine 3x a day ( I take it 10 minutes before each meal) and have not had any those type of accidents since I started this medication.

Dennis
Blank
572651_tn?1333939396
It it  possible that he has both Addison's and MS - just having MS doesn't rule out other diseases.   Fecal incontinence, while not really common with MS, does happen. Either way, I'm sorry he is facing this problem and like the suggestions the others have made here.  I don't know enough about the  stool bulking agents to add to that talk other than to say his doctor should have recommendations, and if not he might need to see an additional doctor.

Hopefully this is a temporary problem and he can go back to not worrying  - I can only imagine this is frightening for so many reasons. best, Laura
Blank
Avatar_f_tn
I agree with Laura.  50% of Addison's patients experience diarrhea and I would find someone who specializes in this but also knows something about MS or is willing to research.

You perhaps may need a 2nd opinion, you know he has MS but as Laura says, he may have both.

Good luck and have some patience, sometimes this can take awhile to sort out.  We are always here.

I take the same medication as Dennis and it works quite well but should be used under a doctor's supervision.  My doctor explained it as a drug that will basically "stop" the action.  In my case, with MS, I develop stomach spasms and can't stop attempting to throw up, Bentyl, its brand name, will "stop" the spasms, in my case.  So, different drugs can be used for many purposes.

I have also given Metamucil to stop diarrhea, but this too should be done cautiously.  I find Immonium works for me if I am off without my Bentyl and you can get it over the counter at Wal Mart for less than $1 a package, their brand, but it works just as well.

Hopefully we have all given you things to think about.  

Sarah
Blank
695104_tn?1390988088
Thanks all for the input.
He definitely has Addison's, that was diagnosed 1st, in 2008. He "failed" the ACTH test. And we know diarrhea is common with it. But when he has a crisis, it is totally different, the diarrhea is accompanied with feeling "off" as he says..and he goes "downhill" quickly. If we can get the emergency extra Cortef dose along with the anti nausea med, and antidiarrheal meds in him, and he doesn't throw up, we can avoid the hospital. If he throws up, it is automatically I call 911 and we go by ambulance, to get the IV meds, as his Addison's is a severe case. He has an excellent Endocrinologist, actually the Dr's wife also has Addison's, and Dr had a family member die from it because they didn't get the proper treatment in time.
With the fecal incontinence he is having now, it is different. As in he can be walking, and there it is. Or bend over to pick something up, and there it is. No cramp, no stomach pain, doesn't feel bad. He also has told me when he goes to the restroom, he sometimes can't feel he has gone, until he sees it. This along with his neurogenic bladder makes us feel this bm problem is MS related. It is just harder to tell since he has the Addison's. Before the MS diagnosis, if he had diarrhea, it was Uh-oh, Addison's, and start the crisis med routine. Now with the MS diagnosis, it just makes it harder. Like he knows he isn't really feeling ill, so probably MS..but don't want to chance it if it isn't MS. I am sorry I am so wordy, and I thank all of you for your input. I am just hoping to find something that may help. I have contacted a PT who specializes in Pelvic Floor Dysfunction, she does treat fecal and urinary incontinence, to what extent it will help due to it being MS related, with the nerve involvement, we don't know. We also are going to add the fiber bars back in..he drinks a lot of water, and we will definitely monitor that closely to not risk a constipation problem. I have Lupus and Interstitial Cystitis, so he and I make quite the pair! Lol..I have taken Bentyl, as well for IBS.
Again, thank you for listening, and caring enough to reply.
C
He already does carry extra clothes, we have bought the disposable pads and underwear as well. He and I are trying to keep from being so down about it all..I told him I had got the disposable undies in. He replied, at this rate ALL of my underwear is disposable! So, our humor helps.
Take care all!
Blank
572651_tn?1333939396
This is one heck of a caring group of people - so feel free to bounce ideas here all you want.   It does sound like you two make quite the pair and without the humor, you would both have reasons to sit and sink deeper and deeper. I'm glad he has you in his corner to help sort this out.

Hopefully the MS doctor he sees is as committed as the endocrinologist to finding ways to make your lives better.   ~Laura



Blank
695104_tn?1390988088
Thanks Laura!
Agree, humor gets us thru some tough times.

PastorDan,
That blood test hubby had was to check for antibodies for neuromyelitis optica. His neurologist drew the blood here, then sent it to the Mayo Clinic. I have a site link to the Mayo Clinic that talks about it, but I don't know if we can post links here.
Take care all,
C
Blank
751951_tn?1299202836
Thank you very much; as it turns out, I had the same test - negative - earlier this year.  I believe, though, that it's a test to rule out or confirm NMO, which is said to be among the many mimics of MS, though once thought of as one of its' variations.
Blank
695104_tn?1390988088
Well at least testing negative is a positive!
Hopefully you will get some answers/relief soon.
C
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Neurology Answerers
987762_tn?1331031553
Blank
supermum_ms
Australia
667078_tn?1316004535
Blank
HVAC
Durham, NC
Avatar_f_tn
Blank
SarahL2491
Alagash, ME
1831849_tn?1383231992
Blank
kwarendorf
Great Neck, NY
147426_tn?1317269232
Blank
Quixotic1
Washougal, WA
Avatar_f_tn
Blank
essdipity