#chron's colitis

[mey-rin-is-fabulous]

I really need to get better at eating regularly and staying hydrated. I think the new med will work but my bowel issues are always worse when I don't eat very often or hydrate enough.

And to think I would have probably been okay right now if I didn't accidentally eat that non GF spaghetti.

My doc says the spaghetti wouldn't cause it to get active again but I don't think I believe that. I am on a GF diet because wheat seems to be a trigger especially after an incident where I had gone GF and had some cheerios and the night after I experienced awful diarrhoea.

[chronic-b1tch]

A rant on chronic illness treatment

I gotta let it out, man. I've got IBD.

I believe that those with IBD (and any other CI really) need more attention, help, and advice.

My experience hasn’t been a good one.

Between a mix of false promises, and a lack of communication, the truth shone bright despite the easy comments doctors would throw my way.

“You’re in good hands now” 

Is a sentence I can’t seem to forget, as I span over the last few desperate years, full of medical neglect.

Those hands would never pick up the phone.

“There are many options for treatment, it’s going to be ok”

At the beginning of my journey, only to be under-treated.

The strange ease and confidence that I was presented with at times, was trickery at its finest.

That is not to admonish all health specialists in gastroenterology, however, looking back… it appears we are still not taken seriously enough.

As a result of our chronic condition(s), I think we can become so accustomed to any pain and discomfort, that tracking it can be difficult. Expressing the truth of our condition can become hazy, almost illusory.

What a 7 in the pain chart for a typical person is, turns into our 4 at most.

When we only know odd sensations in our abdomen, we cannot track any real changes or state to report.

How can we differentiate and state a case to a doctor, when we have already told them. From the beginning. 

Health professionals seem to be stuck on looking for changes and differences - yet it simply IS different and unusual - RIGHT NOW. Existing as is.

I feel that specialists are almost tricked by the consistency of the chronic ailments, as well as us. 

They become so used to the idea that this is just how it is going to be, that they almost give up on seeking the best option: to be symptom-less.

They forget that their patient is a human, in pain and shame. 

It might be ok for them to simply try and maintain an equilibrium, or to have a faint hope of remission. But for us, we are living through the physical frustrations that they are ok to leave as is. As long as it isn’t extreme. As long as it’s not so cruel that we drag ourselves to urgent care.

I don’t want to be hateful of health professionals, as many are honestly angels sent to earth, in my opinion.

Personal experience has shown me the other side of that, though. 

And I have to let it out. Otherwise, I will wake and think about what they said to me, every day.

They’re supposed to specialise in our condition yet seem to fall short, and lack a human touch. They phone to ask interview type questions, and never want to know how it’s affecting you.

Even then, it’s almost as if they want to shunt off the responsibility of you, to another colleague.

At most I was asked if I had someone to talk to. I was lucky I did.

“Please be someone else’s problem” is something feel, lurking in the background of our conversation.

Again, we have to live with the condition, yet others seem terrified of handling it with us.

A GP asked me “What do you want me to do?”

As if I had all the answers. (Home skillet, Idk either)

I sensed fear in their tone, and defensive behaviour, while telling me they couldn’t help.

They were scared to touch me. Too much responsibility. Too scary.

Surgeons helped me the most, after a long battle over years with the pain, and the stress, and the fear. 

After failed attempts at managing it and large spaces of no communication from my “team”, my condition had spiralled. It had gone too far, and I was in notable agony.

Complications had happened, and drastic measures were necessary.

It had been missed. I had been so used to pain, that it confused me. The nurse I was speaking to was either so desensitised, or so overworked, that they didn’t clock the signs of infection.

It was obvious. I told them repeatedly I had fever symptoms, and even asked if it was a common thing in flares.

I think about that often.

Sheepishly, they visited me once in the hospital they worked at. They admitted to one failing, and I foolishly pretended to be friendly.

Reminded of half of what got me into this trouble: Not being a b****.

So what to learn on your part in your journey with this condition?

BE A B****. 

Tell them if they’re not being helpful.

Tell them if you don’t feel listened.

Get second opinions.

Annoy the heck out of people.

Never shut up.

Even if people roll their eyes when they talk about you, at least they’re talking about you and noticing you. Better that than being a wallflower they forget about.

If something changes without communication, follow them like a hound and always ask “why?”

GET THINGS IN WRITING

Ask questions in writing too.

Ask for documents, copies of information that regard you

Thank you if you read all this.

[disabledsysboxes]

Autoimmune - 3

[darkmoonseance]

wanted to make a point to try more unique foods I'd never tried before this year and instead I got MYSTERY INFLAMMATORY BOWEL DISEASE

[lovelyscot]

[ketokamp]

A Food Philosophy Born on the Brink of Death

Dane Johnson is a dedicated Natural Medicine Practitioner specializing in Crohn's Disease and Ulcerative Colitis and he’s developed a food philosophy that was born on the brink of DEATH! Today he’s going to share his Pain to Purpose story and talk about all of the moments that led up to his spiritual epiphany, and why he believes that, “healing starts in the mind,” and how he healed his symptoms. In this captivating episode, he’ll open up about his battle with seemingly incurable diseases, and the inspiring journey of reclaiming his health and well-being.

[purplewingedwarrior]

Happy Lupus Awareness Month.

Yes, May is Lupus awareness month. If you are anything like myself, chances are you were probably a bit confused about when the heck Lupus awareness month actually is.

Some people post stuff in May, others in October. With a disease already so complex and confusing, couldn't at least our awareness month be simple? Alas, No. But don't fret because I am here to help provide clarity!

So why do people post stuff in both months? Well, May is the true lupus awareness month. This is because world lupus day is recognized as being on May 10th. So May makes the most sense to actually raise awareness for this disease. The Lupus Foundation of America uses May as a time to raise awareness and help educate the general public about Lupus. Therefore, May is the time most Lupus based organizations are actively attempting to spread awareness or raising money for research. October, while not recognized by orginizations, can be celebrated as Lupus awareness month depending on different cultural or regional impacts. Some regions that celebrate Lupus Awareness month in October include the UK and Australia.

I am from San Diego, and here our annual lupus walk is held in October, not May. So we are regionally one of the places slightly impacted by this difference. Though, if you are to ask any San Diego based Lupus Warrior I am sure they would also say May is the Month of Lupus awareness.

At the end of the day, both months can be ours to raise awareness and funds! With all we struggle against and go through, it is only fair that we would be able to have more than one month of awareness. So grab your purple clothes, butterfly jewels, and sunscreen and get out there to raise some awareness! And if you flare, call on all of your friends and family to come help support you in your efforts.

Lord knows, some days even walking feels like it is requiring every bit of effort we have. I have already signed up for a half mile walk in October, but jokingly told my friends and family they may have to carry me if my body decides to be non-compliant. They all immediately said they would bring a wagon to pull me in, or help me rent an electric scooter. To make sure I could finish. Which made me feel so supported and seen. Getting out to these events not only helps to give us reminders of how many people truly do love and support us (because I know all too well how easy it is to feel isolated due to this condition), but it also allows us to connect with others that have this condition too.

Other Awareness months to be aware of:

-March: Autoimmune diseases in general.

-April: Sjorgens

-May: Spondylitis

-May: Arthritis awareness (but only in the U.S.)

-May: Vasculitis Awareness

-June: Systemic Sclerosis Awarenesss (Scleroderma)

-August: Autoinflammatory diseases awareness month.

-August: Psoriasis Awareness month.

-September: Arthritis (Only in Canada)

-September: Rheumatic Disease Awareness (U.S.)

-September: Chronic pain awareness

-November: Nerve conditions awareness

-November: Diabetes awareness month.

Chron's Disease does not have a full month of celebration in the US, Instead it have a week combined with Colitis. It is December 1st to December 7th.

I hope this post was helpful! Please comment below any topics you want covered in future blog posts. I want to make sure I am writing things to help as much as I can.

[anna-pineappel]

3 years ago, I was diagnosed with Celiac Disease

And on my diagnosis-anniversary, I wanted to share my story of what went down and the symptoms I had that lead to my diagnosis. This is a bit long, but if someone relates to this, I’d highly recommend getting checked out.

In August of 2021, I went to the Emergency Room for a Charley Horse in my left calf. I went thinking I was having a blood clot since the pain and cramping wasn’t going away so to the ER I went! Good thing I did, because my hemoglobin was low, along with my iron, and I had to be admitted and get an infusion. The doctors strongly recommended iron supplements after the fact and in Canada, I was told to get the ones behind the pharmacy counter, they’re a stronger strength, but I didn’t need a prescription.

I went back to my family doctor after the fact, and ran a shit ton of bloodwork, looking for anything that pointed to anemia. I was also on birth control pills at the time, but of course my doctor had to ask: “are you just having heavy periods?” Which I wasn’t but still got abdominal ultrasounds. They ended up finding a fibroid, but it is small enough that they weren’t concerned about it causing anemia.

Eventually other nutrients were starting to tank, Vitamin D, B12, folate, etc. Also despite the iron supplements, my iron levels weren’t going up as quickly as the doctors wanted. So I started getting bloodwork for malabsorption disorders: Celiac, Chron’s, Ulcerative Colitis, etc. and one of those came back positive: Celiac antibodies. Seriously, my number was off the charts at >250… the lab deadass stopped counting.

After that, my family doctor referred me to a gastroenterologist (stomach and intestine doctor) because in order to get an official diagnosis, you need to do a gastro-endoscope biopsy to assess damage to the intestines, which cause the malabsorption. The basis of Celiac Disease is this: it’s an autoimmune condition. When my body is exposed to gluten, antibodies go and attack my intestines. Some people have classic GI symptoms (diarrhea, constipation, bloating) while others, like me, have non-classic symptoms (anemias, osteoporosis, brain fog, depression, etc.)

So on December 6, 2021, I went for my biopsy and right away the gastroenterologist was able to tell I had some gnarly intestinal damage that was textbook for Celiac Disease. There was enough damage that they estimated I may have been suffering for A FUCKING DECADE!!

After that, I cut gluten from my life and didn’t look back! I got my nutrient levels back up, and my follow up biopsy earlier this year showed remarkable recovery! Of course, my energy levels and general well being got better too!

[helleanorlance]

Also I might have chrons or ulcerative colitis. Which like, I’m not keen on talking about my digestive issues, even over tumblr, but I am soooo stressed out about this. IBS is bad but it’s pretty complication free and IBDs have so many complications that can come with them…..

[arthallea]

life is about appreciating the affirmative statements people give to you, like "you do not have chron's, celiac disease, or ulcerative colitis"

[breathagainlife]

Lactose Intolerant: What does it mean?

Lactose is a simple sugar found in nature. Two sugars, galactose and glucose, combine to create lactose.

Are you lactose intolerant?

What are the signs of lactose intolerance? How can you tell if you are?

To find the answer, one must understand how lactose is produced.

When galactose and glucose combine, they form a bond. Your body has an enzyme, lactase, used to break these bonds.

If you do not have lactase, you cannot break the bonds, making you intolerant.

The signs would bloat, gas, diarrhoea, cramps and pain. In my case, I would throw up. I just hated the smell of milk.

There are three primary causes: age, genetic and diseases.

Your body is not born with all the enzymes required to digest food. In fact, not just milk, you might not have the enzyme to digest vegetables or fruits.

Typically, as you grow, by age six, you develop the ability to digest lactose.

Some races are born lactose intolerant, South Asians for example. In some cases, you develop Chron’s disease, Celiac’s disease or ulcerative colitis, making you intolerant.

There is no real cure for being lactose intolerant.

The severity varies. Some people bloat and develop symptoms right away. Others are tolerant of different forms. So, for example, I did not like milk, but was fine consuming cottage cheese (paneer).

So what can you do if you are intolerant?

You could add enzymes that help you digest. You could combine it with other foods, making it easier to digest.

You could spread your consumption, having smaller quantities per meal.

Personally, I found it easiest to have yoghurt. You could find the form that suits you best.

There is no law that mandates you need to consume dairy. If you are intolerant, find other ways to get your protein and calcium. Calories are easy to find in any case.

Reach out to me on twitter @rbawri Instagram @riteshbawriofficial and YouTube at www.youtube.com/breatheagain

[scottguy]

Most of these medications, which treat extremely serious conditions like diabetes, heart failure, stroke prevention, autoimmune disease like ulcerative colitis, Chron's and psoriatic arthritis, are down over 50%.

[commiekinkshamer]

Ok I’ve been googling symptoms and I’m worried might actually have chrohns and not colitis (my mom has chrons, grandmother has chrons-colitis) and I’m fucking horrified, it says it can increase your colon cancer risk to 50%??? And the only way to diagnose chrohns is a colonoscopy, sigmoidoscopy can only do colitis. I can’t feel my body, I’m so terrified, I want to die, I can’t breathe

[thebibliosphere]

So, wonky mast cells are linked to both of those things, but in the case of Crohn's, not in the way you'd think.

With most inflammatory conditions, there is an increased level of mast cells at the site. This is true for ulcerative colitis and several other inflammatory bowel diseases, such as diverticular disease. More recent studies have also shown an increase in mast cell activity in patients with IBS.

With Chron's, there's some ongoing debate about this. Some studies show an increased number, which is what you'd expect to find, while others suggest a lower or even zero number of mast cells -- however, that lower number of mast cells may be because the mast cells in the area are degranulating*, and tryptase (that mother fucker), which is one of the chemicals released during a degrnulation event, may be responsible for the forming of intestinal fibrosis.

Neat! Right? I mean, in a kind of horrible, 'oh god, why are bodies like this?' sort of way.

So, do you have a mast cell disease? Impossible for me to say, and unfortunately, the testing just isn't there yet. You do have more than one system of the body affected (GI tract and skin-- which for some reason isn't part of the MCAS criteria, which is frankly insane and a lot of MCAS doctors are pushing back against it), so it's a higher risk.

Is it entirely possible and very likely, given the research, that you're inflammatory reactions are the result of some mast cell instability, and you might benefit from targeting them with stabilizers? I'd say chances are high, yeah. Unfortunately, I'm not a doctor and the medical establishment isn't entirely on board yet, and if you start asking about high doses of antihistamines for things like endometriosis, even though mast cells are proven to be the driving factor in endo lesions spreading, a lot of doctors will look at you like you're insane.

I do think that will change over the next decade. There's just too much research coming out (mostly thanks to covid) for them to keep shoving their head in the sand forever. And also annoying cunts like me won't let them :)

My undiagnosed mast cell disease almost killed me in silence. I will survive as loudly and annoyingly as possible to ensure other people don't suffer the same way.

_ _

* What is mast cell degranulation? It's when the cells lose stability and start to leak inflammatory hormones/chemicals into the body, causing, well, inflammation. You'll most typically hear it talked about in terms of anaphylaxis, which is when the cells go bonkers and release everything as a sort of "throw the baby out with the bathwater" approach to fighting off a foreign body.

The most typical reason for this is an IgE-mediated response to an allergen. But when mast cells go rogue, they're not fussy. Anything that sets them off will cause the same response, even if you do not test positive for IgE-mediated reactions. So if you've ever swore up and down you had an allergic reaction to something but your testing came back fine, you very likely did have a reaction, it just wasn't IgE-mediated.

What we are now learning is that mast cell dysfunction is a spectrum far wider than anyone first realized. So while a person may not have Mast Cell Activation Syndrome (MCAS), the likelihood of mast cell dysfunction being a possible cause of their inflammatory disorder is exponentially higher than a lot of people realize. The little fuckers are linked to IBS, atopic dermatitis, endometriosis, arthritis and fibromyalgia. Continuing to neglect the role of mast cells in inflammatory diseases is beginning to look like nothing short of wilful ignorance.

I'm using my inbox being off to sort through my mail and answer people in an orderly fashion instead of getting bombarded every few minutes, and the sheer number of people that message me things like, "Thank you for talking about allergies so much. I don't have MCAS, I just have..." then proceed to list all of the symptoms of MCAS and I'm just left squinting at my inbox like:

[onetwobreathe]

Two small (mega) victories complete! I had my garden completely renovated two weeks ago, and I've picked out a brand new kitchen being delivered on Friday to be fitted from Monday 😄

Edit: Also more news that isn't good exactly, but I'm looking at it that it could have been a lot worse. No Celiac diasease, no Ulcerative colitis, no Chron's. I had a bad case of IBS. Which has thankfully passed now. I'm on more medication because my weight plummeted but hey ho, I feel so much better.