I apologise for any typos. On my phone.
I also apologise for only coming in here occasionally.
Anyway, i could really use some support from people who truly understand this illness.
After being pretty symptom free since a few weeks after diagnosis and the elimination of what was causing it back in 2010, I officially entered my first official flare on Sunday.
Being aware that getting into my doctors for support can be an issue I rang Monday to sort an appointment/sort a referral to the GI and couldn't get an appointment so I gave it up. Also I had normal BM's that day and thought maybe I'd just eaten something that didn't agree with me.
Roll on today (Wednesday) and I was at uni (80 miles away from home) and halfway through my seminar I suddenly had to go to the toilet. In my desperation for privacy I used the disabled toilets and when I left them a wheelchair user was outside and started verbally abusing me, I couldn't respond as I was too panicky about the start of a flare.
My friend, who doesn't know I have bowel issues was luckily driving Today, however part way home I needed to use the toilet again and had her pull over in the next services for me. She came looking for me 10 mins later as she was worried do I just told her I was ill.
Got home eventually, and had a small safe meal and haven't left the toilet for more than half an hour since (been home nearly 6 hours) so tomorrow I'm ringing my doctors for an emergency appointment.
It know it's only been a few days, but I'm really struggling emotionally right now. I just can't cope with the thought of being in a flare, and I'm feeling guilty for feeling this way and just I'm totally overwhelmed. I don't want this to rule my life but it is right his second and it is difficult.
Not sure what I want from this post, understanding, my mum is trying, but she just doesn't understand it at all. Although her hugs do help.
Overwhelmed.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Overwhelmed.
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Naty,
Soo sorry that you have had this flare...
And the awful reminder that MC is 'for life' and it takes every ounce of energy to cope with events like that....
Have you tried using things like Imodium??. It may take away some of the urgency for you to get through the day.
The other thing I used to do, is to go to the toilet before long meetings /car trips to minimise needing to go at inconvenient times...
The yucky reality is, flares can and will happen.
What causes them? Not always food. It can be stress, weather change, for me a change in water supply can affect my poop, so I take my own water everywhere.
Deep breathes and supportive hugs. Keep having safe meals.
Have an emergency kit of spare undies etc with you and do the best you can.
Even with a doctors apt etc, there is no quick fix.
Soo sorry that you have had this flare...
And the awful reminder that MC is 'for life' and it takes every ounce of energy to cope with events like that....
Have you tried using things like Imodium??. It may take away some of the urgency for you to get through the day.
The other thing I used to do, is to go to the toilet before long meetings /car trips to minimise needing to go at inconvenient times...
The yucky reality is, flares can and will happen.
What causes them? Not always food. It can be stress, weather change, for me a change in water supply can affect my poop, so I take my own water everywhere.
Deep breathes and supportive hugs. Keep having safe meals.
Have an emergency kit of spare undies etc with you and do the best you can.
Even with a doctors apt etc, there is no quick fix.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hello Nat......
Sorry to hear about someone being petulant about the toilet. I get some of this, mostly dark looks, because my disability is not always visible. I'm perceived to be ten years younger and I simply won't look vulnerable in public as a defence. I believe you had every right to use that disabled toilet and I hope if the problem arises again you just take a disabled toilet once again - after all they are bigger and suited to doing clean ups.
I'm only half a month away from my first and only MC flare to date, very new to all this and still finding my way. All I know is it was a lonely time for me too till my partner came to this site doing research for me. Only after reading other MC sufferers stories and how the disease affects one did she begin to understand and the empathy followed. Perhaps you could, as I did, share some of the very touching and often very funny stories in the Jokes section on the forum with your Mum. My partner and I sat one evening doubled up in fits of laughter reading some of the stories (product reviews really) for Haribo's artificially sweetened jelly sweets. If you haven't read the reviews - it's a real tonic and spirit lifter.
Generally, I'm a private sort of a person but I have told people I come into contact daily about my tummy woes and that I am on a special elimination diet. To my surprise I found that a friend of a friend has the same and a secretary at the course I am on is a Coeliac and was able to relate to my story instantly.
Hope you are on the mend soon.
Jen
Sorry to hear about someone being petulant about the toilet. I get some of this, mostly dark looks, because my disability is not always visible. I'm perceived to be ten years younger and I simply won't look vulnerable in public as a defence. I believe you had every right to use that disabled toilet and I hope if the problem arises again you just take a disabled toilet once again - after all they are bigger and suited to doing clean ups.
I'm only half a month away from my first and only MC flare to date, very new to all this and still finding my way. All I know is it was a lonely time for me too till my partner came to this site doing research for me. Only after reading other MC sufferers stories and how the disease affects one did she begin to understand and the empathy followed. Perhaps you could, as I did, share some of the very touching and often very funny stories in the Jokes section on the forum with your Mum. My partner and I sat one evening doubled up in fits of laughter reading some of the stories (product reviews really) for Haribo's artificially sweetened jelly sweets. If you haven't read the reviews - it's a real tonic and spirit lifter.
Generally, I'm a private sort of a person but I have told people I come into contact daily about my tummy woes and that I am on a special elimination diet. To my surprise I found that a friend of a friend has the same and a secretary at the course I am on is a Coeliac and was able to relate to my story instantly.
Hope you are on the mend soon.
Jen
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
I'm so sorry that you have had a flare-up of MC. I was hoping that you had eliminated your triggers and would be home free. Sigh, I guess that doesn't happen with MC.
My view of disabled toilets is that they are available so that people with disabilities, most especially wheelchair users who can't fit into regular stalls, have a toilet that they can use, but that it doesn't mean that no-one else can use them. It's not like a handicapped parking space, where cars may stay there for hours. You legitimately had a need to use that toilet.
Gabes suggested Imodium. I use it when I'm going to be away from home, and feel like I need the extra peace of mind of knowing that my system is slowed down.
Big hugs to you. We love you, and you can come here and vent all you want about un-understanding people.
Love,
Martha
My view of disabled toilets is that they are available so that people with disabilities, most especially wheelchair users who can't fit into regular stalls, have a toilet that they can use, but that it doesn't mean that no-one else can use them. It's not like a handicapped parking space, where cars may stay there for hours. You legitimately had a need to use that toilet.
Gabes suggested Imodium. I use it when I'm going to be away from home, and feel like I need the extra peace of mind of knowing that my system is slowed down.
Big hugs to you. We love you, and you can come here and vent all you want about un-understanding people.
Love,
Martha
Martha
Hello Katy,
I'm sorry to read that you're having a major flare. This disease can be treacherous because it can be seemingly cooperative for long periods, but there are many things that can catch us off guard and trigger a flare. Once things begin to go wrong, sometimes it can be difficult to turn it around quickly enough to prevent it from gaining the upper hand. And the stress of dealing with the symptoms can make them worse.
Are you taking any medications that you were not taking a month or so ago? Has there been a big increase in stress with course work at the University?
Is there a chance that your flare might be associated with a virus? If so, it will probably settle down after the virus runs its course.
Hopefully, a bland, safe diet will soon have you back on track. In the meantime, the suggestion to try Imodium is a good one. It can't stop the inflammation, but it can slow down the high motility rate, and it can suppress much of the urgency, so that you have more time available before you have to get to a toilet.
Tex
I'm sorry to read that you're having a major flare. This disease can be treacherous because it can be seemingly cooperative for long periods, but there are many things that can catch us off guard and trigger a flare. Once things begin to go wrong, sometimes it can be difficult to turn it around quickly enough to prevent it from gaining the upper hand. And the stress of dealing with the symptoms can make them worse.
Are you taking any medications that you were not taking a month or so ago? Has there been a big increase in stress with course work at the University?
Is there a chance that your flare might be associated with a virus? If so, it will probably settle down after the virus runs its course.
Hopefully, a bland, safe diet will soon have you back on track. In the meantime, the suggestion to try Imodium is a good one. It can't stop the inflammation, but it can slow down the high motility rate, and it can suppress much of the urgency, so that you have more time available before you have to get to a toilet.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Guys, thank you so much for your kind words they mean so much to me.
I spent last night in bed watching youtube videos and sipping water. Speaking of which, as I am still feeling slightly off probably due to an electrolyte imbalance, what is the best thing to drink? I've been wracking my brain but I can't remember!
As an update, my mum has been out and bought me some immodium and it is helping somewhat. Couldn't get an appointment, but the doctor is ringing me back this afternoon. I've only been a few times today so things are slightly better at this current moment, so I am trying to look at the positives there.
I've been going over the past few weeks to see if I can figure out what has caused the flare and I am none the wiser, I do however suspect that it is a culmination of things, mainly several minor little stresses. I've been working 6 day weeks the past few days (working 4 days a week, uni one day and volunteering for work experience in a school) I think I might need to cut back a shift at work. Luckily they are understanding so I have asked to cut time down for a month, although I'm off next week anyway as I'm off to see Hamlet in London for my birthday!
The main thing that upset me re the disabled toilet is because it was actually the first time in my life that I have ever used one, even though I have the radar key for disabled toilets in the UK, and it is in my support plan that I can use disabled toilets if needs be. I just don't like having to explain to total strangers that I have the right to use it.
I'm just hoping I can get back under the GI I had when I was first diagnosed because he was the only medical professional I have met that seems to really get this illness.
I spent last night in bed watching youtube videos and sipping water. Speaking of which, as I am still feeling slightly off probably due to an electrolyte imbalance, what is the best thing to drink? I've been wracking my brain but I can't remember!
As an update, my mum has been out and bought me some immodium and it is helping somewhat. Couldn't get an appointment, but the doctor is ringing me back this afternoon. I've only been a few times today so things are slightly better at this current moment, so I am trying to look at the positives there.
I've been going over the past few weeks to see if I can figure out what has caused the flare and I am none the wiser, I do however suspect that it is a culmination of things, mainly several minor little stresses. I've been working 6 day weeks the past few days (working 4 days a week, uni one day and volunteering for work experience in a school) I think I might need to cut back a shift at work. Luckily they are understanding so I have asked to cut time down for a month, although I'm off next week anyway as I'm off to see Hamlet in London for my birthday!
The main thing that upset me re the disabled toilet is because it was actually the first time in my life that I have ever used one, even though I have the radar key for disabled toilets in the UK, and it is in my support plan that I can use disabled toilets if needs be. I just don't like having to explain to total strangers that I have the right to use it.
I'm just hoping I can get back under the GI I had when I was first diagnosed because he was the only medical professional I have met that seems to really get this illness.
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
I'm hoping you can get the appointment you need and soon. Especially if it brings you relief and comfort, both physically and mentally!natythingycolbery wrote:
The main thing that upset me re the disabled toilet is because it was actually the first time in my life that I have ever used one, even though I have the radar key for disabled toilets in the UK, and it is in my support plan that I can use disabled toilets if needs be. I just don't like having to explain to total strangers that I have the right to use it.
I'm just hoping I can get back under the GI I had when I was first diagnosed because he was the only medical professional I have met that seems to really get this illness.
I am sad that the person who was handicapped didn't understand that not all physical limitations are easily visible. And that, sweet girl, is what I would have said to the person. Nothing more need to be said. Just a smile, a "I want you to be aware that not all health issues are clearly visible, some are internal," wish them a good day, or kiss my a*rse, and head on my way.
Yep, that part irks me for you. I'm sorry that happened.
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
The sad thing is, I've known people in wheelchairs with this attitude before, in fact, I used to live with someone who acted like she was the only person who had any health problems.
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Yes, disease elitism/snobbery is a common problem in the world today. This is similar to the huge problem that exists with so many holier-than-thou celiacs who think that they have the market cornered on gluten sensitivity, and they tend to become livid at the prospect of someone having the gall to adopt a GF diet without an official celiac diagnosis.
IMO this problem exists primarily because the people who have that attitude have never gotten past the denial stage in their grievance process, so they are stuck indefinitely in the first stage of their "recovery". They can't make any progress in their recovery because they can't get over feeling sorry for themselves, and this causes them to subconsciously blame the rest of the world for their problems.
Tex
IMO this problem exists primarily because the people who have that attitude have never gotten past the denial stage in their grievance process, so they are stuck indefinitely in the first stage of their "recovery". They can't make any progress in their recovery because they can't get over feeling sorry for themselves, and this causes them to subconsciously blame the rest of the world for their problems.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
"still feeling slightly off probably due to an electrolyte imbalance, what is the best thing to drink? I've been wracking my brain but I can't remember!"
I have used Dioralyte sachets to good effect. I add it to a 500 ml bottle of water or a safe drink.
I have used Dioralyte sachets to good effect. I add it to a 500 ml bottle of water or a safe drink.
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
-
natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
You can make the ORS solution at home. The recipe is simple and quick and can be made at home or when out. It's the recipe used wildly around the world.
http://rehydrate.org/solutions/homemade.htm
http://rehydrate.org/solutions/homemade.htm
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I think the feeling off part would be moreso recovering from the stress.... You would have used a lot of adrenalin in the various situations, the mental and emotional aspects of a MC flare, not getting in to see a doctor etc etc.
rest, calm the mind, and come up with approaches that can minimise intense situations again...
Rest is the best healing option.
rest, calm the mind, and come up with approaches that can minimise intense situations again...
Rest is the best healing option.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I use more magnesium topically when I get into a stress flare it seems to calm my system down (and yes I have been doing well for the last 4 weeks now, but stuff happens). I also revert back to safe foods, it may take 2-3 days to calm the body but it can be done....breath.
I only drink water or coconut/or cashew milks....
Here in the USA if I needed to use a MEN's bathroom I would....so to use a larger restroom labeled Disabled would not be an issue for me. Chin up Naty, don't let the small stuff get to you
I hope you are having a better day today,
Cheers
Erica
I only drink water or coconut/or cashew milks....
Here in the USA if I needed to use a MEN's bathroom I would....so to use a larger restroom labeled Disabled would not be an issue for me. Chin up Naty, don't let the small stuff get to you
I hope you are having a better day today,
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007