Bowel problems

Everyday living
1

Hi I was diagnosed with MS today. Have multiple lesions on brain and spine. Had a CIS in Feb (dizziness and double vision). I had a bad reaction to the oral steroids Prednone , as I had acne spots on my back and chest, my hair thinned extensively and I had severe constipation for a long 12 weeks which caused me to cry when going to number 2 in pain, going once every 4 days. It also made me bleed leavily when going as it cuased me to strain and had fissures and hemmoroids. At the time I read that cutting wheat, gluten and dairy may help wth constipation. Cutting these foods helped amazingly and the constipation almost resvoled. Been glute/wheat and dairy free since then (May).

I think the severe constipation caused me some damage down there as I can’t hold my numbers 2’s for very long now and i think i’m more bowel incontinent… I go to number 2’s now at least once or twice a day and find gluten free food alot easier to digest. I eat at least 5 portions of fruit and veg a day. My cousinn died of bowel cancer many years ago.

I asked the neuro today if I could be gluten sensitive or celiac and he just said “its only very rarely that demyelination is caused by gluten”). There is also inflammatory bowel disease which can cause demyelation. Thinking back to when I was well I often had stinky poos that had clear mucus (sorry to be giving details) and would go once every 3 days. I also got aoccasionally a swollen tummy and had a sensation where it felt like my stomach was finding it hard to digest food and i would rub my tummy.

I’m going to go and see my GP as what I have with my bowels isn’t norma but it could be my lesions, any thoughts please? xx

2

Hi Helenbow I have similar problem and at first didnt relate them to M.S as thought it may have been something else, I spoke to my neuro consultant when admitted to hospital and he was asking me how my body has changed recently and I advised him of my bowel problems along with everything else. He referred me to the gastro specialist and when I explained my urgency to go especially just after eating and my stomach often swelling, he did say its likely to be a symptom related to my M.S but sent me for an endoscopy and colonscopy to be 100% sure. I got my results and I had a little inflammation nothing serious and was given meds to help but the consultant sent the report to my neuro consultant as he has said this is linked to my m.s. The way he explained it as I have damage to my nervous system when Im eating my stomach is saying this food shouldnt be here so get rid of it quick and thats what its doing. Hopefully your G.P will refer you to the gastro specialist to get you checked out. Polly xx

3

Hi Helebon,

I’m sorry to hear of your diagnosis today.

Personally, I would think it more likely your constipation was caused by your MS (or CIS as it was then still classed), as this is a very common symptom. Many drugs do have constipation as a side-effect, but it seems unlikely just a short course of oral steroids (I’m assuming it was short?) would make you severely constipated for as long as three months. I would think this has more to do with the underlying problem - in other words, yes, the lesions.

I’ve never, ever heard of IBD causing demyelination - or was that bit by any chance a typo, and you meant constipation? I think there is some evidence that people with IBD are at higher risk of other autoimmune disorders, including MS, but I’ve never heard of it actually causing demyelination, and although I’m admittedly no medic, I find it a bit difficult to work out how it might be possible. How would a problem with your bowel cause damage in your brain?

I honestly think the odds are that your toilet troubles are caused by the lesions, and not the other way around, as it’s soooo common, to the extent this site has a section about it, that you might want to look at, if you haven’t already: http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/bowel

If you’ll excuse me being a bit lazy and answering your other post here too, it’s entirely possible you won’t have any more MRIs, now you’re a diagnosed person. Their main and most important use is diagnostic; they’re not used as a routine tool to check how your MS is doing, as symptoms are the best guide to that. They may occasionally be used to check how active your MS is, if you’re being considered for a new med (some are licensed only for highly active RRMS), or they want to check how well an existing med is working. But you certainly shouldn’t expect to be called in every year or every six months, for a new MRI. They are the exception, rather than the rule.

I’ve been diagnosed more than three years now, and never had another MRI - which suits me fine, as I think it would cause me needless anxiety to keep a running tally of how many lesions I have all the time. Raw numbers are not a very good guide to the extent of any disability, as where they form is much more important than just how many. How you’re feeling is a pretty good indication of how the MS is doing, without needing regular scans to check.

Hope this helps,

Tina

4

Hi Tina

Thanks for the reply, Yes as far as I understand Inflammatory bowel disease - Crons, Colitus and Celiac are known for causing white matter lesions. I think its the ‘gut to the brain link’ as up to 70% of a persons immune system is located in the gut, or something like that. Google it and it comes up. If you take a look at the website RadiologyAssistant it has this ‘WML differential Diagnosis table’ http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html

it’s good to know I guess that MRI’s will not be regular. xx

5

Sorry to thread hi-jack but I didn’t want to start a second bowel problem thread. I’ve had intermittent diarrhoea most of this yr, assumed it was hormonal as it generally happened just after totm. Now it’s happening more often, and none of the recommended at home treatments are working. I’m debating seeing my GP as it’s been 3 days now and I feel shocking, or would I be better calling my nurse?

6

Hi Helebon,

Are you suggesting you still think/hope you might have been misdiagnosed, and “only” have IBD, not MS?

I understand that, as I’m sure many of us have been in the position of wishing/hoping there might have been a mistake. I can remember clinging to the hope they might tell me they’d looked at the wrong scans, and the ones with lesions weren’t mine!

But the way my neuro put it to me was: “Common things are more common!” “Huh,” you might be thinking: “So all you need to be a neuro is a degree in stating the obvious?” But actually, he did have a point. All things being equal, once the basics like vitamin deficiencies and infections have been ruled out, it isn’t likely to be a rare complication of some other disease - it’s more likely to be MS.

In that entire study you linked to, I could find only one tiny mention of IBD as a differential diagnosis, and no indication it was at all common (not IBD itself, but lesions as a result, I mean). Unlike most (all?) of the other conditions mentioned, I noticed it didn’t even have its own section explaining the differences, so either it’s so rare they couldn’t find an actual example, or else thought it was unlikely to be encountered in practice, so didn’t justify detailed discussion. But either way, you can see from the overall tone of the article there is detailed guidance about distinguishing what is an MS lesion, and what isn’t. I’m sure there is no illness where misdiagnosis hasn’t occasionally happened, but to the trained eye, MS lesions have quite a classic signature, so I don’t think it’s likely you would have got a confirmed diagnosis if there was any question mark about the characteristics of the lesions. If there was doubt, they would have left you at possible/probable, and waited for clearer evidence.

I do understand your hope (for me, that ended when the insurance Co. paid up without a quibble - I recognized the evidence must be pretty indisputable, if they weren’t even going to try arguing…)

I know it’s a bit premature to be advocating acceptance, as I’m not sure it’s even been 24 hours yet, but I do think the most constructive way forward is to start from the assumption your diagnosis is correct. Otherwise you could spend a lot of time and emotional energy - that you can ill afford, when you’re not well - chasing explanations that aren’t at all likely.

Of course you should report the bowel issues, but I don’t think they’re going to prompt any raised eyebrows in a patient who’s already known to have MS, and I certainly don’t think they’re going to prompt a change of diagnosis. Sorry!

It will get easier with time - you won’t spend your whole life hoping/wondering if it might have been something else. Occasionally, I still have moments of doubt - especially when my symptoms don’t seem typical of the majority. But it’s such an individual disease that trying to compare with others often doesn’t tell you much.

Tina

x

7

For Mrs. Chicca:

It might have been better to start a new thread, as it’s sort of hard to answer two people in the same thread, when their questions are different - albeit same general area.

I agree it’s time to tell somebody about your problem. In this case, I’m not sure it makes much difference whether you choose GP or MS nurse, as you may need referral to specialist continence services anyway - either of them should be able to arrange this. I’d go for whichever is generally easier to get hold of.

Hope this helps,

Tina

x

8

Hi Helebon

Firstly, I am sorry to hear of your diagnosis. You have had a fairly quick journey between first symptoms and diagnosis and it has probably come as a shock to you.

However, I agree with Tina. The symptoms you describe are so typical of MS and in fact are so typical of my own symptoms. In my case I was regular as clockwork bowel wise until a relapse left me numb from the waist down. Now my bowel often feels like it’s in knots and I’m bloated, cramped, flatulent (which I hate!) and either constipated or too frequent. If I didn’t have MS, I know it could easily be mistaken for IBS or IBD. The difference is I can tie my bowel problems in quite clearly to my biggie relapse.

I have a friend with IBS and a sister in law with Crohn’s and neither has lesions on brain or spine so I cannot see how bowel disorders can cause lesions. They have both suffered for years with their bowel problems and sil is very badly affected, possibly needing surgery to give her some quality of life. If bowel disorders automatically caused lesions then one would expect at least one of them to be showing some signs of neurological problems but their symptoms are compatible with the bowel disorders they have.

I do know how difficult it is to come to terms with an MS diagnosis especially when it has all happened relatively quickly (in my case first symptoms to diagnosis was just 4 months) but as Tina says, you are wasting valuable energy fighting the diagnosis instead of accepting it and learning to adapt. MS is not the end of the world; you can and will lead a full and rewarding life. My biggest relapse was over 4 years ago which left me barely able to walk for a month. After that it was still an uphill struggle for sometime but I still work 30 hours a week, still have a healthy social life, still take holidays, etc. In short - life is good. Four years ago, I didn’t believe that was possible but it IS.

Good luck

Tracey xx

9

Can i ask how you got on with acne problem? I have had severe acne on my back and thighs, which about the same time as my ms symptoms. Ms specialist was of the opinion it was not ms like to get acne, however a dermatologist says it is indeed acne qnd also keratosis pilaris. I have tried 3 different antibiotics and i am now taking trimethoprim for it. This is not helping either. Any info would be great

10

Hi,

I think your MS nurse or GP is the best person to start with. Make a list of what you want to say before you go. Its up to you to get the ball rolling. Find out where your MS nearest therapy unit is to. If its not to far away its well worth it to go.

Good Luck,

Jane

11

Hi Tina. Thanks, If its MS then thats ok, but from what happened to me with the severe constipation with the steriods for 12 weeks and when I cut out wheat/gluten and milk and it started resolving from the next day isn’t that saying something? I’m not fighting the diagnosis I just think there could be something else too with my bowels. Crons and Colitus can be awful - ie some people have to have their colon and parts of their intestines removed. So this isn’t wishful thinking. I have an MS nurse visiting me next week to discuss my bowels. With the steroids I lost most of the strength in my arms too and it took many months to get that strength back. I had trouble cooking with the weight of lifting pans and my mum has to carry my shopping still. My brother has been just diagnosed with an inflammatory throat disease caused by an allergic reaction to something he’s eating so thats now beening investigated further.

My acne was the reaction to the steriods, I’ve never had acne before and that resolved about 2 months after the steriods. My hair grew back after around 6 months. It was all quite frightening at the time as I visited my GP and she didn’t know these symptoms can be side effects of the steriods. i went to the GP about 4 years ago with a buzzing perineum sensation that lasted a week, and was told its probably IBS.

All the best

Hx

12

Hi Helebon,

I have been on the MS band wagon since 1991 and still no clear-cut diagnosis!

I had radiation treatment for hodgkins lymphoma in 1990 and had radiation treatment from stomach area up to neck. At the time of treatment I had stomach/bowel issues and was told it was effects of radiation. Mainly diaharrea and bloating. These continued after treatment and I was told it was just irritable bowel or IBS. Anyway 6 months after treatment I had l’hermittes (tingle in body on flexing the neck.) MS was suspected and I had MRI, lumber puncture and evoked potentials. All were normal and I was told it was a temporary side effect of the radiation. Anyway it went away but bowel issues remained and classifed as IBS so live with it.

Roll on to 2000 and fatigue set in which included serious amounts of yawning - so bad that everyone in my family/frends commented on my serious yawning. Blood tests were done (thyroid etc) and all was normal. In 2005 I had numbness in arms for a few months. I had MRI and all was normal. In 2007 the bowel problems became worse. I was doing a charity marathon walk and I needed to go. There was a massive queue for the loos and I couldnt wait. After waiting 10 minutes half the contents of by bowel ended up in my pants and I managed to release the other half in a field!

I decided to go to doctors and get help. I had lots and lots of tests were they send cameras up the bowel and check for inflammation and cancer. As all were normal I was told it was IBS so I was no further forward. I also had the tests for celiac etc which were normal.

Then in 2008 I had another bad bowel attack and numbness down left side. MRI done still normal.

In 2010 started to develop foot drop and had MRI in 2011 and lesion was seen on cervical cord. I was DX with radiation myelopathy from the treatment I had in 1990! Also, Blood tests revealed B12 slightly low and I was given 3 monthly B12 jabs. For a few days after B12 jabs my bowels were always good and I felt less fatigued and more alert. I asked if the B12 could have caused the problems and was told that B12 issues do not cause lesions on spinal cord! I asked if I could have more B12 and was told no.

Now… A few weeks ago a user here known as Karen2 wrote a thread on B12. I discovered that B12 defiency can cause a condition known as “Subacute Combined Degeneration” which causes eventually lesions on the spinal cord. so rare that most neuros have never seen it. I have since discovered that if one has radiation treatment in stomach it can effect bodies way of absorbing B12. Low B12 can cause pernious aneamia which can lead to bowel issues, numbness and excessive sighing or yawning and if left long enough lesions in the CNS. The treatment is daily B12 injections for 6 weeks and then weekly for a year and then monthly. I have taken this info to GP and he wants me to see nuero . So I have to wait 6 months when He could start me. I have started on patches in the meantime and all the new symptoms I developed recently have gone. The right leg spasicity has been there for years is still there. my bowels are better too.

The tests that could be done would be pointless I am told because the supplements I am on and the fact that I have been having a few B12 injections.

I would like to trial the intensive B12 treatment as there are no risks at all.

I never got an MS dx as I had another LP in 2012 which was clear of MS markers and I have a clear brain MRI.

If you are in doubt about your DX then ask for a lumber puncture. If that was negative then perhaps they might look into other avenues. I reckon that if my LP was positive I would have got a DX of MS.

Take Care

Moyna xxx

13

Hi Moyna, thanks and wow you have been on such a journey. The neuro offered me an LP and said if it comes back negative he would investigate other avenues. At the time I said no as the idea of an LP would cause me anxiety. But what I gather with a LP is if the test comes back negative for MS then that doesn’t mean I don’t have MS. If it comes back positive for MS then that would be useful to confirm my diagnosis. I do think though that the MS diagnosis using the McDonald crieria is a bit of a ‘catch all’ (within reason) diagnosis but I guess that to do with what is known to be understood about MS.

Part of me wants to wait for a second attack before taking DMT’s but then I change my mind and think some neuros like to start patients early and after just a CIS. I did have the view that I wanted to be drug free but looking back I did take the contraceptive pill for several years and had the contraceptive injection a few times so in a way its no diffent. (That I was willing to take drugs for a reason).

all the best x

14

One of the huge challenges with RRMS is that it’s very difficult to conclusively prove a link between improvements, and anything you did. Spontaneous improvements are a feature, so just as you never really know what caused a relapse in the first place, you can never be sure if anything you did helped, or if you would have got better anyway. There is a phrase: “correlation isn’t causation”, which basically means A&B happening close together can’t prove A caused B.

Sadly, having MS doesn’t provide immunity to other conditions, so of course it is possible to have another bowel problem, unrelated to the MS. But severe constipation after a relapse, which may improve after a while (with or without dietary changes) is a pattern many of us will have experienced. I don’t think that, by itself, is reason to suspect MS isn’t the whole story - or even the wrong story. On the contrary, it’s rather typical of MS.

It’s also unlikely steroids caused loss of strength in your arms - that too is likely to be the MS. Weakness is another extremely common symptom. I’ve had it with varying severity ever since diagnosis (and before that, too, if I think back). I can’t blame steroids, as I’ve never had them. My hospital doesn’t particularly encourage them - which suits me, as I’ve never been keen. I’d draw the line if I couldn’t walk or see, as those are not things I’m prepared to put up with, but for anything less, I prefer to let nature take its course.

Acne, on the other hand, is a well-known side-effect of steroids, and so is hair-thinning, so I think MS is off-the-hook for those.

Buzzing intimate areas? Again, sorry, but MS, I think. It sometimes feels as if I’ve got a mobile phone stuck up there - on vibrate! This was particularly noticable after the relapse that led to my diagnosis - I got buzzing in my leg, as well. So looks like you may have had a mild sensory relapse four years ago. I don’t buy the “probably IBS” conclusion, in the light of what has happened since, although it may have been a fair suggestion at the time. Not sure IBS is usually associated with “buzzing” though, so with hindsight, perhaps this should have been taken more seriously. But it’s not unusual to go to the doctor with several seemingly unrelated things, before MS is diagnosed, or even suspected. I had painful feet for years, and one episode of unexplained soreness of a leg. Unsurprisingly, nobody thought to do a brainscan for painful feet and legs - it’s not the first thing you think of, is it? So instead, they examined my feet and legs, but concluded there was nothing wrong. I naively believed that if it was anything serious, they certainly would have found it, so spent the next four or five years convincing myself I was making a fuss about nothing.

Tina

x

15

Helebon,

Did you miss the posts this last week on gluten. lt was the online GlutenSummit - l was alerted to it by the ldnresearchtrust -as l am taking LDN. And MS and other auto-immune diseases like coeliac/crohns/lBS/ are related to gluten sensitivity. lt has been an eyeopener - especially for us with bowel problems.

My problem has been very loose bowels and no warning. l take Loperamide/codeine phosphate to try to calm mine down. l know l am much better not eating grain at all. Had the camera up my bot and a barium meal xray. Biopsies done etc. And conclusion was it must be my MS.

One thing l did learn from the Gluten Summit was - that gluten prevents the body absorbing vitamin d3. lmportant fact for us.

l have had SPMS for 31yrs. Had a lumber puncture/mri for diagnosis. Never had another MRI for MS since - well no point as it is not going to improve anything. Left to get on with it really, as no dmd’s for SPMS. l do take a high dose Vitb12/vitd3/magnesium/LDN/Kelp/omega3 and l shall be going back to using the Estriol Cream - tried it before - natural hormone.

Don’t want to take anything that has nastly side-effects. We have enough to put up with. So l think you have to weigh up the pro’s and con’s…

16

Thanks Tina, that made me think imagine I asked the GP to refer me to a neuro for a vibrating perineum ? haha I think they would have laughed and pushed me out the door. The GP wasn’t really interested when i told her I remember. x

Hi Spacejacket, I thought there was a link for some people with MS being sensitive to gluten. Well I take no chances and am steering clear of gluten/wheat and dairy. The really odd thing is that I began drinking cows milk 3 months before my illness! So that is a question mark. I always used to drink soyamilk but when I moved in with mum I started drinking cows milk. The 3rd neuro I saw thought it was of significance and put it on my report. Cows milk is for cows and not humans I guess. x

17

Sacral Nerve Stimulation - google this - supposed to be for bowel/bladder issues.

18

I was thinking today during the time i had my CIS and before the constipation started I went to unrinate and noticed my private parts felt numb. I rubbed them and feeling came back. It happened once only, so I think it does make sense the constipation could have been the MS as well and not just the steroid reaction. So during my CIS I have quite a few things going on: dizziness, double vision - 6th nerve palsy, numb private area, loss of strength in my arms, sleep apnea, a feeling of fainting in my sleep, a feeling like I lost conciousness for a spilt second, severe anxiety and stress. I also felt I wasn’t myself, lots of repetative thinking and determination to do things such as walking in the snow and ice even though I was very ill. I hope I don’t get it again.