#crohnie

Family doc and GI down, Gyno to go tomorrow.

I’m not anticipating any more follow up at the gyno, so I figured I’d post about updates now.

My GI appointment was actually pretty interesting. I mentioned the weird issues I’ve been having with perianal symptoms (itching, discomfort, pain while pooping, some really minor bleeding, and being awoken at night due to itching), and she did an exam to check for fistulae. She didn’t see anything, but did say that they can be pinhole-sized, so she ordered an MRI to check and make sure there’s nothing there.

Due to my increased frequency, the fatigue, and general malaise I’ve been experiencing lately, I’m also getting scoped at the beginning of August. She palpated my belly, and asked a few times if it hurt on my lower right (not more than usual), so she may be feeling something there that I’ve just not noticed, or have gotten used to. I mentioned that we will be trying to get pregnant within the next few months, so she said that any investigation should be done now. We can make sure everything looks good to give me peace of mind before trying, and if there are issues, we’ll deal with them. Increasing Humira, or switching to Entyvio or Stelara were mentioned.

I’ve done a round of normal bloods, but she also ordered the antibody test for Humira - Anti Adalimumab. Apparently a nurse will come to my home to do this. Hopefully, I can get it arranged for this week, before I inject on Sunday. Otherwise, I think I’ll have to wait until a few days before the injection following this next one.

Just waiting on results and test dates now. Anxious to see how everything looks.

Getting quite concerned that I’m entering flare-time.

Not acceptable.

I have been having odd things going on in my mouth lately… cue joke.

I don’t know if these are possible oral Crohn’s symptoms, Humira, the abscess returning, or something else.

I’ve been getting this really odd feeling (mostly at night) that my upper gums are almost scaly in patches. To touch, they’re not dry, but when I run my tongue over the spots, the texture is different. Nothing visible really either, except once I rubbed them, and skin appeared to slough off. Not painful.

I’ve also noticed that my gums are bleeding at lot when I brush. I haven’t changed toothpaste recently, and I’m pretty diligent about brushing my gums, so this is unusual.

In addition to the above, I keep getting mini sores, right beside teeth. These do hurt, and are especially painful when I brush over them. They will bleed at that point, but usually resolve within a few days. They almost look like there’s a tiny chunk of gum missing.

Last night when looking at my gums, I noticed a few petechiae, and I either have another gum sore developing near where my abscess was, or the infection is starting again and trying to form another fistula to drain.

I’m unsure whether to call my dentist, endodontist, or GI to figure this out.

Any advice or experience from anyone would be so appreciated!

I’m muggle-sick and feel like death, but I hope you all had a wonderful day of celebrations!

I’ve been feeling nauseous after eating since last Thursday. Also having lots of acid reflux, and it woke me up the other night.

On Saturday, I felt so unwell while waiting for Canada Day fireworks. My husband actually suggested that we go home, cause I felt and looked like hot garbage. By the time we came home (stuck it out because Canada), I had chills and a 100° fever.

I’ve had no fever since then, but last night the intense nausea struck again after dinner, and I had to take gravol and go to bed. The gravol actually didn’t help much, and I was up a few times feeling like I was on the verge of vomiting, but nothing actually came up.

So far today I’ve had a breakfast pita thing, and soup, and I feel reasonable. Going to try bland dinner and see what happens.

I have no idea if this is Crohn’s or some kind of bug?

I never know what’s happening with my body because my symptoms never seem to be the same. First flare was 12+ bloody diarrhea bathroom trips, pain, fatigue, and weight loss. Flare #2 involved joint pain, pain around my terminal ileum, but no blood, and not much diarrhea. Whatever the eff this is has so far included: perianal symptoms, nausea, fatigue, general malaise, and some pain around my terminal ileum (but nothing severe).

Do not know what to think.

Last week, I saw an Instagram story that made me pretty mad.

This particular person is vegan. Fine. I admire vegans for their dedication, and think it can be an extremely healthy way to live (if eating a balanced vegan diet, of course).

The thing is, it’s not healthy for everyone. Particularly, some people with IBD who can’t tolerate a vegan diet.

This is not to mention the whole concept of choice. Some people choose to be omnivorous, or vegetarian, or vegan, or fruitarian, because that diet is better for them, and there should be no shaming of anyone for the diet they choose to follow. Unless that diet involves cannibalism. That is not ok (obviously).

Anyway, back to this post. The poster was telling people to go vegan, and watch a new documentary about veganism and health on Netflix. Fine.

The next part of the Instagram story featured the following: “A plant based diet can help/treat the following: diabetes, heart disease, Multiple Sclerosis, Prostate Cancer, arthritis, Chronic Fatigue, and Crohn’s/UC.”

Ok. Ignoring all the other conditions listed (because I’m not a patient and can’t speak from experience, but seriously?), for Crohn’s, just no.

There is no diet that treats or cures Crohn’s, and the ignorance around food and this disease drives me nuts.

We do not know the cause of Crohn’s Disease. Do environmental factors play a role? Very probably. Is there also a genetic component? Yep. Can you modify diet to try and soothe an inflamed digestive tract? Yes. Is there any evidence that dietary change will cure the disease? No.

It is autoimmune and there is no cure

Stop shaming IBD patients for our disease

For so many Crohn’s sufferers, major components of a vegan diet are just not possible. When I’m sick (and frequently when I’m not even flaring), I can’t tolerate fibre. No leafy greens, vegetables of any kind have to be cooked to mush (and even then, cause pain), nothing with any kind of skin or rind, no nuts, no beans/legumes or pulses. Even whole grains are a no go.

I can basically eat bananas, potatoes, rice, plain chicken, white bread, dairy (I know, I’m weird), and high fat/sugar things like pudding or jello.

For others with Crohn’s, veganism is achievable, and that is truly amazing. The fact is that it’s not for everyone, and I find it highly offensive to suggest that just by going “plant based” and “loving animals enough to not eat them/their products,” that someone who is currently pooping blood 20 times a day no matter what they eat, or someone on TPN, can just heal themselves.

This whole concept of “if you would just do this simple thing, you can help yourself,” is obnoxious, ignorant, and offensive. Especially when it’s prescribed for everyone regardless or circumstance.

It suggests that our GIs don’t know what they’re doing by prescribing the best possible medical/surgical treatment options for us.

It also suggests that we are to blame for being ill.

That is not friendly or loving. Let’s just stop policing the food choices of others, and call it a day.