Is rectal bleeding due to MS? No, and don't assume it is. If you have unexplained symptoms, that you think are not related to MS, make sure you get them investigated.
As I have commented before gaslighting is a major issue for pwMS and unfortunately making a fuss to be heard is 1) hard work 2) demoralising and 3) labels you as difficult and unable to acknowledge your MS. In the case of 3) this goes through your medical records and many medics believe their fellow medics and not the pwMS. The medics don't look at, listen to or hear the patient in front of them and serious issues are not investigated leading to poorer health or worse for the pwMS.
The information you give us is so helpful and how all patients should be looked at, treated like anyone without MS. Something I am grateful for.
I really am sorry but until medics stop gaslighting patients we will all keep suffering as I know to my cost and possibly my life.
I have MS. During routine poo screening last June blood was found. I had no symptoms. After checks and a colonoscopy, colon cancer was found. 6 weeks later I had an operation to remove 1 foot of my colon. Biopsies subsequently found no spread to lymph nodes.
I am on Kesimpta but paused taking it when cancer was spotted. I have not restarted taking it yet as they are monitoring me and an MRI is planned. I was told Kesimpta takes about 9 months to totally loose its effects.
The question put to me by my NHS Consultant is whether I restart Kesimpta. It suppresses the immune system and therefore increases the risk of cancer. I’m minded to restart the injections but would welcome any advice.
Gaslighting from clinicians happens OFTEN : "that pain is your MS - take baclofen! "
except it isnt and i wont.
thanks for encouraging us to stand up for ourselves
but it's just more of the invisible labour we have to do so much of - being 'grateful' when someone simply does the job their paid for, asking for help eg to open doors in 'acessible' places, coping with people who 'mean well' while they want to tell you abut their neighbours aunt with ms - which makes their ideas about your life really important (NOT!)
I find that contrary to pwMS having an attitude or assuming a symptom is “just part of MS” that I instead have had to advocate and constantly challenge others to NOT make that assumption. It occurs consistently, be it with an ophthalmologist, physical therapist, family doctor, etc.
Wow. I was today years old before knowing about most of this. I sincerely appreciate the bold discussion of issues shrouded in shame and embarrassment. Thank you! The issue of shoving other health concerns into "the MS basket" and/or being gaslit about severity about comorbid issues is so real. I agree, make a fuss, be that squeaky wheel that gets the oil, and get stuff checked out!
My son, who has MS, had rectal bleeding in the past from haemorrhoids caused by straining when trying to pass stools. Another worrying condition is Pilonidol Sinus which was treated by surgery a few years ago. The surgery was very invasive and took months to heal. It appears the condition has returned and he has been referred to the surgical team again. I feel this is another condition caused by being wheelchair bound and although not caused by MS is definitely related and exacerbates his MS symptoms.
I would be very curious about how this plays out in different healthcare management environments.
In the US, there is a tendency to deny healthcare, even basic preventive stuff, based on insurance overriding the doctors. I assume I will have to fight for anything and everything. I had to pay for one of the vaccines my doctor told me to get out of pocket, even though it's a standard vaccine on the CDC schedule. A friend (man of a certain age with a family history of colon cancer) just got turned down for a colonoscopy, though that was too expensive to pay out of pocket.
I have a slightly different perspective as I have had a few different doctors in my lifetime with different attitudes and temperaments. My first pediatrician in the 70's was more holistic than his contemporaries, and recommended peanut butter to my parents to give me protein because I had problems eating meat, while others were recommending ways to hide meat or forcing me to eat it. From then on through my life I've had many good and open doctors, and some difficult and parochial ones--even up through my experience with MS. I was basically taught through experience and observations to always ask questions (whee... scientific method!), so I would also always bring up something that was new and/or concerning. The newest caused an ongoing argument with my neurologist, and more than a few times I have had to call emergency services (9-1-1 here in the US) myself when the nurses at the SNF wouldn't listen to me. It was a good thing I did, as they were all serious issues that I needed someone to listen to me carefully, and the most important turned out to put me in shock. Always ask questions and talk about concerns, and look to someone else if you're not getting what you need or listened to concernedly and earnestly.
I've experienced this for nye on 20yrs 9 (I also have IBS and have been told this is the issue) and had typed a reply but have deleted it and decided it's not worth my time as what on earth is the point. This is where medical gaslighting gets you. Patients who know they are not going to be taken seriously and so don't bother.
Even my dentist has me labelled as "noncompliant" in big capital letters. This because I asked for a dental dam (they had offered at a previous appt) when they were removing an amalgam filling and was concerned how that might impact my MS. Suffice to say the next dentist I saw was very difficult to deal with as she was expecting me to be difficult.
I think there is a tendency to ascribe everything to MS, and as life goes on, ascribe it to MS and aging. Oh, your anemia? You’re just chronically ill, etc. I roll my eyes. My GP has ordered a batch of blood testing because of my underweight issues. I do have a gastroenterologist who is very kind. I don’t seem to have much going on other than slow digestion that I’ve had for years and he has held off on a colonoscopy for now after viewing a CT scan and I’m ok with that for now. I don’t know if I’d get through the prep. My motility has no rhyme or reason, it seems, and it’s aggravating and I just have no feeling bowel and bladder wise. I have longstanding hemorrhoids and diverticulosis. That said, I’m not one to get gaslit easily. I’ve had two very serious issues that did not show up on scans (one serious stage II cancer, the other a benign liver tumor requiring resection. Fun city.). This really is a good topic, because bowel issues are mighty sneaky. Thanks, Prof G.
I think there can be a tendency by pwMS to start ascribing all their problems to the disease and ignore other factors. I did HSCT a few years ago, and being a 33 year old man, I felt like I still wasn't feeling "like my old self". My neurologist quipped to me during my recent routine checkup:
"The bad news is that, alongside MS, you have the worst disease known to man. It is called aging. It affects every single aspect of your health and functioning, there is no known cure, and it is both terminal and progressive" 😁
The point is, of course, that we also forget that as time goes on, it's not just MS doing damage, but the regular process of senescence that is also degrading things, or creating higher probabilities for other things to develop such as cancers and things that this article talks about. It's good to have perspective about this as well.
I had a pre-existing ulcerative proctitis diagnosis when diagnosed with MS. It is important that neurologists and gastroenterologists work together. After a lot of hesitation i have gone onto Kesimpta with additional prophylaxis for any IBD problems. Apparently anti-CD20 drugs can cause de novo colitis so this was not an easy decision. Similarly, MS patients apparently can't take the anti-TNF drugs that usually have a key role in treating IBD (and avoiding the need for colectomy)... the sort of thing I can imagine being *easily* missed by a busy local hospital. Now, nobody wants to have to have a colectomy, but for someone with restricted mobility, incontinence (from bowel or J-pouch) is going to be that much harder to manage.
My impression is that the focus with clinical trials tends to be an "ideal" population with no comorbidities. We need a clear list of 1) Which DMTs can cause problems for other health conditions - and what are the effective alternatives, and 2) What drugs for other conditions should MS patients avoid?
As cancer drugs are increasingly targeting the immune system, for example, how does that work for MS patients?
Hmm, I wonder what “I saw this delightful lady…”. Possibly the exact opposite as I enquired as to why they had lost a semen sample for the 3rd time!
I worked in the veterinary industry for 30yrs and if a member of staff was found to put any of these acronyms on a clients file they were reprimanded (although a staff member came from another practice and thought this was ok, this was not the norm across the board). A client may be having a bad day, the staff member may be having a bad day, there might be a miscommunication / misunderstanding issue, personality clash, to name but a few. We were the professionals and it was up to us to smooth any situation over and understand why it had happened. We had very few really difficult clients, only clients who were frustrated as their lack of understanding and their feelings of not being able to fix the situation they found themselves in. Even the shouty ones! I got a beautiful bouquet of flowers from a gentleman who had been screaming holy murder in the waiting room after I sat him down, listened and then worked through how we would progress the situation. I worked over several practices and this was how all of them worked. We “sacked” one client towards the end of my time in the business after several death threats towards me, I can honestly say clients have become more difficult. Sadly the NHS doesn’t get that option.
As I have commented before gaslighting is a major issue for pwMS and unfortunately making a fuss to be heard is 1) hard work 2) demoralising and 3) labels you as difficult and unable to acknowledge your MS. In the case of 3) this goes through your medical records and many medics believe their fellow medics and not the pwMS. The medics don't look at, listen to or hear the patient in front of them and serious issues are not investigated leading to poorer health or worse for the pwMS.
The information you give us is so helpful and how all patients should be looked at, treated like anyone without MS. Something I am grateful for.
I really am sorry but until medics stop gaslighting patients we will all keep suffering as I know to my cost and possibly my life.
Gaslighting needs to stop now.
I have MS. During routine poo screening last June blood was found. I had no symptoms. After checks and a colonoscopy, colon cancer was found. 6 weeks later I had an operation to remove 1 foot of my colon. Biopsies subsequently found no spread to lymph nodes.
I am on Kesimpta but paused taking it when cancer was spotted. I have not restarted taking it yet as they are monitoring me and an MRI is planned. I was told Kesimpta takes about 9 months to totally loose its effects.
The question put to me by my NHS Consultant is whether I restart Kesimpta. It suppresses the immune system and therefore increases the risk of cancer. I’m minded to restart the injections but would welcome any advice.
hope your patient is ok now!
Gaslighting from clinicians happens OFTEN : "that pain is your MS - take baclofen! "
except it isnt and i wont.
thanks for encouraging us to stand up for ourselves
but it's just more of the invisible labour we have to do so much of - being 'grateful' when someone simply does the job their paid for, asking for help eg to open doors in 'acessible' places, coping with people who 'mean well' while they want to tell you abut their neighbours aunt with ms - which makes their ideas about your life really important (NOT!)
I find that contrary to pwMS having an attitude or assuming a symptom is “just part of MS” that I instead have had to advocate and constantly challenge others to NOT make that assumption. It occurs consistently, be it with an ophthalmologist, physical therapist, family doctor, etc.
Wow. I was today years old before knowing about most of this. I sincerely appreciate the bold discussion of issues shrouded in shame and embarrassment. Thank you! The issue of shoving other health concerns into "the MS basket" and/or being gaslit about severity about comorbid issues is so real. I agree, make a fuss, be that squeaky wheel that gets the oil, and get stuff checked out!
My mantra as a Paramedic was "Having a chronic disease does not shield from all the rest of life's illnesses and injuries".
It also stood me well as a rare-disease mom.
My son, who has MS, had rectal bleeding in the past from haemorrhoids caused by straining when trying to pass stools. Another worrying condition is Pilonidol Sinus which was treated by surgery a few years ago. The surgery was very invasive and took months to heal. It appears the condition has returned and he has been referred to the surgical team again. I feel this is another condition caused by being wheelchair bound and although not caused by MS is definitely related and exacerbates his MS symptoms.
I would be very curious about how this plays out in different healthcare management environments.
In the US, there is a tendency to deny healthcare, even basic preventive stuff, based on insurance overriding the doctors. I assume I will have to fight for anything and everything. I had to pay for one of the vaccines my doctor told me to get out of pocket, even though it's a standard vaccine on the CDC schedule. A friend (man of a certain age with a family history of colon cancer) just got turned down for a colonoscopy, though that was too expensive to pay out of pocket.
I have a slightly different perspective as I have had a few different doctors in my lifetime with different attitudes and temperaments. My first pediatrician in the 70's was more holistic than his contemporaries, and recommended peanut butter to my parents to give me protein because I had problems eating meat, while others were recommending ways to hide meat or forcing me to eat it. From then on through my life I've had many good and open doctors, and some difficult and parochial ones--even up through my experience with MS. I was basically taught through experience and observations to always ask questions (whee... scientific method!), so I would also always bring up something that was new and/or concerning. The newest caused an ongoing argument with my neurologist, and more than a few times I have had to call emergency services (9-1-1 here in the US) myself when the nurses at the SNF wouldn't listen to me. It was a good thing I did, as they were all serious issues that I needed someone to listen to me carefully, and the most important turned out to put me in shock. Always ask questions and talk about concerns, and look to someone else if you're not getting what you need or listened to concernedly and earnestly.
Also noted are the several mentions of NSAID med involvement. Not candy to be gulped freely.
I've experienced this for nye on 20yrs 9 (I also have IBS and have been told this is the issue) and had typed a reply but have deleted it and decided it's not worth my time as what on earth is the point. This is where medical gaslighting gets you. Patients who know they are not going to be taken seriously and so don't bother.
Even my dentist has me labelled as "noncompliant" in big capital letters. This because I asked for a dental dam (they had offered at a previous appt) when they were removing an amalgam filling and was concerned how that might impact my MS. Suffice to say the next dentist I saw was very difficult to deal with as she was expecting me to be difficult.
I think there is a tendency to ascribe everything to MS, and as life goes on, ascribe it to MS and aging. Oh, your anemia? You’re just chronically ill, etc. I roll my eyes. My GP has ordered a batch of blood testing because of my underweight issues. I do have a gastroenterologist who is very kind. I don’t seem to have much going on other than slow digestion that I’ve had for years and he has held off on a colonoscopy for now after viewing a CT scan and I’m ok with that for now. I don’t know if I’d get through the prep. My motility has no rhyme or reason, it seems, and it’s aggravating and I just have no feeling bowel and bladder wise. I have longstanding hemorrhoids and diverticulosis. That said, I’m not one to get gaslit easily. I’ve had two very serious issues that did not show up on scans (one serious stage II cancer, the other a benign liver tumor requiring resection. Fun city.). This really is a good topic, because bowel issues are mighty sneaky. Thanks, Prof G.
I think there can be a tendency by pwMS to start ascribing all their problems to the disease and ignore other factors. I did HSCT a few years ago, and being a 33 year old man, I felt like I still wasn't feeling "like my old self". My neurologist quipped to me during my recent routine checkup:
"The bad news is that, alongside MS, you have the worst disease known to man. It is called aging. It affects every single aspect of your health and functioning, there is no known cure, and it is both terminal and progressive" 😁
The point is, of course, that we also forget that as time goes on, it's not just MS doing damage, but the regular process of senescence that is also degrading things, or creating higher probabilities for other things to develop such as cancers and things that this article talks about. It's good to have perspective about this as well.
I had a pre-existing ulcerative proctitis diagnosis when diagnosed with MS. It is important that neurologists and gastroenterologists work together. After a lot of hesitation i have gone onto Kesimpta with additional prophylaxis for any IBD problems. Apparently anti-CD20 drugs can cause de novo colitis so this was not an easy decision. Similarly, MS patients apparently can't take the anti-TNF drugs that usually have a key role in treating IBD (and avoiding the need for colectomy)... the sort of thing I can imagine being *easily* missed by a busy local hospital. Now, nobody wants to have to have a colectomy, but for someone with restricted mobility, incontinence (from bowel or J-pouch) is going to be that much harder to manage.
My impression is that the focus with clinical trials tends to be an "ideal" population with no comorbidities. We need a clear list of 1) Which DMTs can cause problems for other health conditions - and what are the effective alternatives, and 2) What drugs for other conditions should MS patients avoid?
As cancer drugs are increasingly targeting the immune system, for example, how does that work for MS patients?
Hmm, I wonder what “I saw this delightful lady…”. Possibly the exact opposite as I enquired as to why they had lost a semen sample for the 3rd time!
I worked in the veterinary industry for 30yrs and if a member of staff was found to put any of these acronyms on a clients file they were reprimanded (although a staff member came from another practice and thought this was ok, this was not the norm across the board). A client may be having a bad day, the staff member may be having a bad day, there might be a miscommunication / misunderstanding issue, personality clash, to name but a few. We were the professionals and it was up to us to smooth any situation over and understand why it had happened. We had very few really difficult clients, only clients who were frustrated as their lack of understanding and their feelings of not being able to fix the situation they found themselves in. Even the shouty ones! I got a beautiful bouquet of flowers from a gentleman who had been screaming holy murder in the waiting room after I sat him down, listened and then worked through how we would progress the situation. I worked over several practices and this was how all of them worked. We “sacked” one client towards the end of my time in the business after several death threats towards me, I can honestly say clients have become more difficult. Sadly the NHS doesn’t get that option.