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Bowel and bladder problems

These answers relate to bowel and bladder problems. If you're looking for something specific, please use your internet browser's page search facility (usually in the top right hand corner of your screen) to search particular keywords or alternatively, browse down the page to learn more about how Superficial Siderosis can affect everyday life and what can be done to help. If you'd like to broaden your search, you may find what you're looking for on another part of the Silent Bleed site - please use the search box in the header above.

We're really grateful that the expert based at Massachusetts General has been working with us since 2015, and we've built up quite an archive over the past few years. With a little sifting you should find the answer you're looking for. However, we know we haven't covered everything, so if there's something else you need to know, please contact us - we'd be happy to forward your question. It's part of what we do.

Part of our Dr Levy Q&A pages

Q:  Bowel & weight loss. My son has been having a lot of bowel problems lately and I’m giving him laxatives and suppositories daily, but they're not working, he’s also off his food, and losing weight. Is there anything else I can do to help him, and keep him out of hospital?

A: Severe constipation can occur in superficial siderosis and it must be managed in order to avoid much bigger problems. First, it’s important to clear the bowels of any impaction. Your doctor may have to help with that. Once a little bit is moving, you can use laxatives to keep it moving. Ultimately, the goal is to maintain a regular, high fibre diet to keep the gut healthy. It’s hard when you’re trying to manage someone else’s diet.

Q: My father has hearing loss and bladder problems that have been attributed to age and prostate conditions but I feel may be associated to the SS. Aside from these, his primary symptom is a feeling of tightness around the head and of being incredibly hot despite his temperature being normal. The hotness is proving incredibly distressing - he is so hot he wants to be in an ice bath. I can see no other reports of this as a symptom and I wonder if you have heard of it as a symptom and, if so, do you have any tips on managing it? Second query is that the cause of my father's SS has been given as amyloid angiopathy and I wondered if this makes any difference in terms of trying iron chelation as a therapy. Can we still approach the SS in the same way as one would approach it when it is caused by trauma? Many thanks indeed for your efforts and dedication to this site. I will be checking in and passing it onto my parents for their info.

A: I don’t know if the banding sensation around his head and the hotness are due to superficial siderosis. That kind of problem generally localizes to the top of the spinal cord at level C2 which can be impacted by many things such as a dural tear that causes SS but also other problems like disc disease. I would get a scan of the new to see what we’re dealing with at that C2 level.

Regarding the urinary symptoms, it’s probably a combination of age (prostate) and siderosis.

Amyloid angiopathy is an additional problem that causes superficial siderosis. Amyloid angiopathy is due to friable blood vessels within the brain that routinely bleed and leak out in the spinal cord fluid. I suspect the amyloid angiopathy will be a bigger concern than the superficial siderosis over the next few years. Ferriprox has never been tested in amyloid angiopathy or in superficial siderosis due to amyloid angiopathy.

Q 93: I had an MRI and Lumbar puncture on Monday 18th August.  The results haven't been printed yet, but the Drs who were watching the MRI said they hadn't seen blood in the cerebellum ever like I have got it.  They did a head to tail bone MRI and the bottom of my spine has shown something is not good down there.  Can Superficial Siderosis affect the spine as well? As I have a lot of pain down my back and also my bowel is leaking and my bladder is either going all the time or only empting 6%.  This seems to happen when I have had a bleed and get the vasospsms.  Is this all connected to the bleeds and Superficial Siderosis?  I had a brain bleed while having the lumbar puncture, they thought it was at first from the lumbar puncture, but it may have caused something.  They kept me in hospital and my speech went completely like a stroke victim, that is what happens every time I get a bleed.  Unable to understand my speech at all.  Would love your input into this as I am waiting to go to Auckland City Hospital Neurologist for help.


A: All superficial siderosis patients are suspectible to spinal cord involvement. The spinal fluid is made deep in the brain and circulates around the brain and the entire spine. Bleeding into the spinal fluid allows the iron (from inside blood cells) to circulate around both the brain and spinal cord. When you bleed into the spinal fluid, the fresh blood irritates both the lining of the brain which causes neck stiffness and fever, and the blood vessels around the brain which causes neurological dysfunction similar to stroke. To achieve this level of irritation, there usually has to be quite a bit of blood – on the order of 20,000 red blood cells per milliliter of spinal fluid.

Q: My bladder is not emptying completely. It takes forever in the bathroom, but it still won't empty completely. Needless to say, accidents occur. I can't go anywhere without having to use a restroom. I take Toviaz ER 8 mgs at night to prevent my going 4-6 times a night. I've heard about Botox injections. I don't know anything more about them other than they help certain women. Would this be something I should check into? How does it work?

A: Bladder spasms and retention work in balance. If you have a spastic bladder causing leaking, you take a medication like Toviaz to relax the bladder wall. That leads to retention and sitting on the toilet for 15 minutes because your bladder wall is too relaxed. Botox does the same thing as Toviaz.

The best thing to do is to try to find the right combination to balance your bladder. It depends on your sensitivity to these medications, and how much fluid intake you need per day. Keep a journal and see if you can tweak it yourself. If not, a urologist can maybe help you balance this issue.

Q: Many of us report bowel and bladder problems. What nerves are being effected by the SS that cause this dysfunction? I am having a problem with urinary retention and am currently on 2 drugs for over active bladder with only mild success. Do these same nerves effect the prostrate. While I am able to get an erection, I cannot climax and ejaculate? Wondering if this because of the SS?


A: Yes, this is in part because of the SS. Blood in the spinal fluid drifts down to the bottom of the spinal column by gravity where it breaks down and releases iron. Local processes to buffer the iron results in hemosiderin which sticks to the nerves going out to the pelvis (sexual organs, bladder). Overactive bladder is more commonly due to siderosis of the top of the spine. Drugs that reduce bladder spasticity/incontinence lead to retention. It can be hard to find the right regimen that prevents accidents but doesn't lead to retention.

Q: I've been having terrible uncontrollable loose stools.  I am unaware when it happens, it's been going on now for about two years, but now it's worse than ever.  I've been put on 8 Imodium per day which isn't working.  Have you any ideas as to what I can do?  I was diagnosed 24 years ago.


A: I can suggest three options: 1. Bulking agents to make the stool thicker and less runny: Metamucil for example + bananas. 2. Bowel training program to empty once daily. Difficult diet to maintain though. 3. Tincture of opium to slow the gut. Very effective but hard to find.

Q: I've been having a problem with recurring UTI's.  Is this a result of SS?  I've been trying to drink at least 8 glasses of water a day.  I've got problems with dry eyes, brittle nails, and the bottom of my feet feel like leather...very dry.  Are all these because of SS and what should I do about the UTI's?  I have to wear Poise pads because of leakage, and that seems like when the UTI's started. Could that be a contributor, too?


A: SS can cause bladder problems and that predisposes to infections. In addition, UTIs can exacerbate the leaking. Drinking a lot of water is good. You can try things like cranberry juice to acidify the urine – sometimes that helps. In more severe cases, we often use preventive daily antibiotics.

Q: Hi there I'm messaging from Sheffield, UK on behalf of my dad.  He's 73 and been diagnosed with SS around 2000.  He's in the advance stages with total hearing loss, nystagmus, loss of bladder and bowel control and in a wheelchair as he can no longer walk. I've heard about Ferriprox and wondered if it can be used in the advanced stages of SS. I've never heard his consultant mention this drug. 

A: Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that gets in the brain so it's the only option for treatment at this time. No telling if your dad could see the benefit of Ferriprox since it will take several years to remove the iron.

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