bowel dysfunction

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

So we had the storm. Oh my god, the rain came down like a torrent that you would not believe. It was like Revelation and Armageddon the way that rain came and the way the wind just blew and blew. I could just hear everything clanging and just smashing around outside. I just hope when I go outside later in the power chair that it's nothing too expensive. But such is life when you are living in the Windy south West. A lot of trains have been cancelled and a lot of buses as well. But that's normal around here. And there's power cuts everywhere. That's also normal around here. But they don't last that long, thankfully.

So I also had the local physio around yesterday and he assessed me so that assessment should be interesting, very nice chap indeed, all sorted. Just waiting now for the other people to get in touch with me, hospitals and doctors, etc. I shall give it another couple of days and then I suppose I'm going to have to make some phone calls and see where we are. Or I suppose emails be better. There's nothing like having me on the other end of the phone when I'm in one of my cognitive funks. And I can't think of words. There's nothing more annoying than that I get really annoyed. as when you're trying to find simple words like, I don't, I can't give an example really, but just simple words or sentences or you change what you were talking about midway through and people can't follow what you're talking about sometimes and you find cognitively that you are all over the place. That's what I'm like these days and I have been for quite a long time and I think a lot of people don't realise just how common this is with multiple sclerosis and severe cognitive disorders in general.

So, I have found a bowel hack for MS. Basically, I found that I have been having made for me a flat bread made with all natural ingredients. Natural strong brown flour, you know, a little bit of olive oil, a bit of salt, a bit of yeast, blah blah blah mixed together. And then put on a griddle, blah blah blah with a load of ground linseed in. Now, the hack is linseed makes all you're pooping easier. There is no need for me to take laxatives or to have any gut wrenching medications to make me go. I had so many bowel issues they nearly gave me a colostomy bag, and I said no. And I'm glad I said no to the colostomy bag because I sorted my own issue out.

When you realize with MS, the nerves in the body cause your bowels to get totally fucked up, which causes issues with urination and also with pooing. I have spent most of my life with bowel issues due to MS and that auto whatever it is I've got wrong with me and I can tell you I have never had a period of time where my pooing has been so good and with this complete change of my daily food intake diet making sure there are no histamines in the food I am at last not having bad stomachs acid and I've managed to get my gut health back to some sort of personal semblance so for me personally changes have been long but I now know what I can and cannot eat so I am like a forensic scientist going through a piece of food looking at it seeing what's in it the whole nine yards so yeah diet is so important with chronic illness I did not realize food causes so many issues when you look into it it's an absolute minefield but if I'd have sorted my diet out 20 or 30 or even 40 years ago I don't think I would be as bad as I am now truthfully It's not just looking at labels either. What I've been doing is I've been putting the label through the AI and it's been giving me the total truth on the ingredients and what they do to my autonomic dysfunction in my MS and the causes and how it makes things worse. So yeah, I've gone down to a forensic level on my food diet and I've also done that with my medications as well that I take.

I take nothing that will give me any side effects as unfortunately if there's a side effect on the packet, I get it. You know, my body is hypersensitive due to my condition. But there we go, who would have thought that MS could have caused my heart conditions that I have? You wouldn't. But when your vagus nerve and your automatic or ortomunic dysfunction is going berserk due to histamines, you know, it causes heart issues. I didn't know that, but people, please, please remember this is my own personal journey and remember if you have any symptoms or any weirdness, see your physician or your neuro people or your MS nurse or whomever you speak to. Seek professional help always. Remember that.

And remember MS is a very, very, very scary journey. Anybody who says is not, is a liar. MS has been very scary for me. It's a massive headfuck. It really does fuck with your head and your cognitive issues, you know, the pain, everything. It really does send your head into some very, very strange places. And even I admit here now that it has caused me mental issues and I have even had to seek help due to this. So if you are suffering in any way, you really do seek help. It is something that a lot of people don't talk about. But yes, I have had mental health issues over the last past eight years and I say to people, get help because help is something that will get you out of a place that you have got no need to be in. MS is a cruel mistress, as I say, but don't let it beat you. Always fight it. Treat MS as something that is just plain horrible and just fight it tooth and nail for everything that you are worth. Give it a run for its money like I do.

I try not to let it beat me. Even when you are at your worst, even when you are at your lowest point, even when the pain is so bad that you want to give up, even though everything is crushing you, stick your middle finger up to the MS and say, "Stuff you bastard, you're not going to beat me." Be positive, fight the illness, I know I have for the past 40 odd years, and yeah, it's been hard, it's been harsh, but I tell you what, I wouldn't change my life for anything now, because life is to be lived and it is to learn, and what I have, I accepted a long time ago, and I know my future isn't bright or brilliant, but I've accepted what and who I am.

Yes, I may be marmite man and have no friends, I may say what I think, and I may have a tinfoil hat on, and I may say strange things, and I may see things, but I'm just being me. Hey, let's all just be ourselves .... because we have all had to change our lives and we have all had to adapt in many ways because of our illnesses and the adaption is hard. Yes it is, but we eventually do get there, we eventually do change the way we do things and we change our lives to a life that a person, a normal person wouldn't even recognise. So yeah, we give up everything really, we give up friendships, lives, normal lives, we get looked at funnily, we get laughed at when we're in a wheelchair, get called names even. But I don't really care about all that. I just care about myself and my close family and Albertine. I care about our future and happiness.

Still I send peace, healing, love and light to everyone who reads this and wish them a pleasant weekend when it arrives and let's hope the weather calms down in the southwest of England. Oh yes, and I'm still stuck indoors, still waiting to phone up the AA so I can get rusty one started up so I can take myself down to the wheelchair centre in February and trial out my new wheelchair. The saga goes on but I wouldn't have it any other way.

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

@goblinbloggeruk - sick@mylivinghell.co.uk 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

My brain fog is crushing. Spasms and weird electric shocks twist through me; words and sentences scramble wrong. The tinnitus that constant, maddening noise won’t quit. Some days I just want to vanish. I watch my rescue dog sleep on the webcam and envy that calm so much it hurts. Everyone offers clichés and advice they’d never follow themselves. It’s exhausting.

I’ve asked to speak to my doctor again. I don’t know how it’ll go. If my guts blow up over the weekend I’m screwed. The dark thoughts creep in the part of me that imagines ending it and I hate that I think that. I need help. I need someone to actually see this and do something that changes it.

Right now I’m broken, sore, and furious. I’m still here, still fighting, but not because I want to be brave because I don’t have anything left but stubbornness.

MS isn’t cancer, but it’s its own kind of killer. It’s not Crohn’s, not ulcerative colitis I’ve had the scans, the cams, the lot. They shoved cameras where the sun don’t shine, took biopsies, waved a cheerful “nothing to worry about,” and sent me home with a sticker that says “reassured.” Fine on paper. Not fine in me.

Let me be blunt: they sliced into the wrong place. The red patches they found were right where my MS‑riddled nerves were already a mess. They cut, they biopsied, and they left me with nerves that used to hum now screaming in high‑voltage agony. I didn’t get better. I got scorched.

Picture me on the lavatory, clutching the edges of a stupid toilet that feels like a cliff pain so deep it isn’t even physical in the normal sense. It’s like someone rewired my insides to a broken amplifier and turned the volume to nuclear. Tears, bile, a clear spit‑drip from my mouth I can’t stop as my body fights to keep food down. I hold back vomit with every breath because the world tilts and the noise in my head goes white‑hot. I wish I were anywhere else. I wish I were normal. I wish for a million useless little things.

The scope was a circus. First prize: the doctor’s finger, the NHS lube, and the ASMR of humiliation. “Your prostate’s fine,” he says, smiling like a man who fixed a leaking tap. That’s the comedy of it they poke, they probe, they make notes, they rule out “nasty” things, then pat you on the head and go home while your nervous system burns.

Now the aftermath: neuropathic pain that laughs at paracetamol, spasms that feel like electric shocks through my guts and spine, brain fog that scrambles words until typing is a battle with my own brain, tinnitus that keeps me company like a sad little radio, dissociation so deep I sometimes watch someone else live my life. There are moments I cry because the pain and the not‑quite‑rightness of my head make me certain I’m splitting, losing the edges of myself. People hear me say it and step back like I’m contagious with honesty. The more truth I dump, the more people get uncomfortable and that’s lonely in its own corrosive way.

I can’t sleep properly. I can’t plan. Every day is punctuated by the possibility that my bowels will decide to implode at the worst possible moment. I’ve learned the humiliating art of pre‑emptive management and still get blindsided. I’m on edge all the time jacked into a nervous system that lies constantly.

And then there are the small, absurd consolations. My rescue dog Yopi decompressing on the webcam, stretching like a champion in her perfect dog‑world while I sit in mine and try not to dissolve. “Doggy wants a big poo,” the universe whispers, and I laugh like a madman because that’s the only way to keep from screaming. I even joke about the vet’s number in my phone because if my guts explode over the weekend, who do I call my vet or the NHS? It’s dark. It’s ridiculous. It’s my life.

So yes: not cancer. Not “nasty.” Just MS doing what MS does best wrecking the wiring and turning normal procedures into torches. The biopsy didn’t fix anything. It made certain spots of nerve tissue more violent, more reactive, more relentless. That “nothing to worry about” line sits in my records like a bad joke. It doesn’t help me when the nerves scream at night and the world feels like a bad transmission.

If you think this is melodrama, try living it. Try Googling “neuropathic bowel pain” with one hand while feeding yourself with the other when your head is full of static and your fingers don’t spell the words you mean. Try explaining to someone that the worst part isn’t dying it’s being trapped in a body that betrays you every hour while everyone treats the notes in your file as the whole story.

I’m not looking for pity. I want acknowledgement. I want the system to stop offering livestock‑level reassurance and actually treat the neuropathic hit the biopsy dealt. I want less suffering. I want some dignity back on the lavvy. I want someone to take seriously that “not cancer” isn’t the same as “not a problem.”

If that’s too much to ask, fine. I’ll keep shouting here where the noise won’t make anyone uncomfortable. Yopi will keep farting on camera. I’ll keep writing it down. The nerves might scream, but my voice crooked, bitter, and honest is still here.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

You already know MS scrambles more than your nerves it messes with the gut and bladder too. That can mean acid, watery stools, sudden urgency, and the humiliation of worrying about whether your next trip to the loo will be a disaster. I’ve been there. I’ve had cameras shoved where the sun don’t shine, biopsies, cuts, diverticulitis, and still I end up living on rice and eggs because other food set off acid poo so badly I was vomiting one day while clinging to the toilet. I’m not here to moralise I’m here to give you real, usable things that might help.

Quick medical reality check

Neurogenic bowel — bowel dysfunction caused by MS is common. It can produce constipation and sudden loose stools or incontinence, and sometimes the gut looks “inflamed” even when it’s not classic IBD. PMC +1

Bile acid malabsorption (BAM) is a real cause of watery, acidic stools and is often under-recognised; it can be treated. Cleveland Clinic +1

Practical management for faecal incontinence includes bowel programs, diet changes, anti-diarrhoeals, plugs, irrigation and pelvic/anal muscle work your continence service or MS team can help. NICE +1

What you can try now (practical, low-risk, and mostly natural)

These are the sorts of things you can do today. If anything makes you worse, stop and seek help.

1. Establish a bowel routine / scheduled toileting Try going at the same time daily (for many people, after breakfast is best) — the gastrocolic reflex helps. A routine reduces surprise accidents and gives you control. SCIRE Professional

2. Short food & symptom diary (1–2 weeks) Record: time, food, medication, stool type (Bristol chart), urgency, pain. This helps spot triggers and shows your clinician patterns instead of “it just happens.” (I’ll attach a simple printable template below.)

3. Gentle diet moves that often help

Stick to small, bland meals when things are bad: rice, bananas, plain potatoes, cooked eggs (sounds boring, but it stabilises things).

If watery acidic stools are the problem, consider lowering fat (helps if bile acid issues exist) and trialing soluble fibre (e.g., psyllium) cautiously to bulk up stools. Cleveland Clinic +1

4. Hydration & electrolytes Diarrhoea depletes salts fast. Sip ORS or salted broths and keep electrolytes up to avoid fainting and cramps.

5. Over-the-counter short trials (check interactions first)

Loperamide (Imodium) can slow transit and reduce urgency/frequency.

Bismuth subsalicylate sometimes helps odor/acidity. If you try these, use the lowest effective dose and check with a clinician or pharmacist if you’re on other meds. The MS Society lists loperamide as commonly useful. Multiple Sclerosis Society UK

6. If watery, acidic stools persist — ask about bile acid malabsorption BAM is common and treatable with bile acid sequestrants (eg. cholestyramine). They bind bile acids and can firm stools, but they can cause constipation and interact with meds, so you’ll need guidance. NCBI +1

7. Consider tests for SIBO or microbiome issues If diet and simple meds don’t help, a breath test for SIBO or stool tests may point to treatable causes. Altered gut flora can make stools acidic and loose. PMC +1

8. Practical kit to avoid accidents and stress

Absorbent pads/underwear (discreet, lifesaving).

Waterproof seat cover for your chair and spare clothes in a bag.

Anal plugs (foam plugs) or fibre/rectal options are available on prescription in some services — ask your continence nurse. Multiple Sclerosis Society UK

Trans-anal irrigation (irrigation systems) can give excellent control for many people with neurogenic bowel. Talk to your specialist. Bladder & Bowel Community

9. Pelvic floor / pelvic rehab where possible Pelvic floor physiotherapy and pelvic muscle work can help with continence even in neurogenic cases. If you can access a specialist physiotherapist, it’s worth a try. PMC

10. Skin care & dignity If leakage happens, protect skin with barrier creams, cleanse gently, and change pads promptly. Having a plan (spares, wipes, little plastic bag) reduces panic and embarrassment.

When you must see urgent care or a clinician now

Passing bright red blood or black/tarry stools.

Severe abdominal pain, fever, or vomiting you cannot control.

Rapid weight loss or signs of dehydration (dizziness, fainting).

New severe symptoms you’ve not had before. If any of those happen, don’t tough it out. Get urgent medical help.

What to bring to your clinician to be taken seriously

Your 1–2 week food & symptom diary (time-stamped).

A current meds and supplements list.

Any recent scope/biopsy reports (ask for copies).

Recent weight changes and blood tests (CBC, electrolytes, B12, vitamin D).

Say clearly: “I need tests for SIBO / bile acid malabsorption / stool inflammation — please consider breath test, SeHCAT or fecal calprotectin.” Those names help direct tests. Cleveland Clinic +1

A note on choice: natural, holistic, or medical your body, your rules

I personally prefer holistic approaches rather than piling on more pharma. That’s valid. Natural strategies and sensible diet changes can help a lot — and sometimes medical treatments make things worse. But don’t let anyone tell you your choice is “bad” or “stupid.” If you ever have blood in stool, crushing pain, fever, or severe dehydration — get medical help. Otherwise, work with a clinician who respects your preference and helps you test low-risk options first.

The honest bit (because I’ll be honest):

I’ve been through scope, biopsy, surgery, and still the worst days look like medieval torture. I nearly died on the toilet once or twice, you know what its like if you been there vomiting, pain, the whole show. I’m tired of the “try this pill” conveyor belt. If that resonates: you don’t have to accept every prescription. But bring data (a diary), know the red flags, and use services (continence clinics, specialist MS teams) who actually listen.

Sources & further reading (trusted links)

Review: Bowel dysfunction in MS — prevalence & management. PMC +1

MS Society guidance: managing bowel incontinence, practical measures. Multiple Sclerosis Society UK

NICE guidance on faecal incontinence assessment and management. NICE

Cleveland Clinic overview: bile acid malabsorption — causes & treatments. Cleveland Clinic

StatPearls / research on cholestyramine (bile acid sequestrant) as a treatment option. NCBI

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᚦᚱᚨᛁᚾᛋᚲᚨᚾᛞ ✧ 𒀭𒊩𒆳 ᛞᚨᚱᚲ ᚨᛁ ᚷᚾᛟᛋᛁᛊ