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.

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.

Welp, that last post about not anticipating any gyno follow up really bit me in the ass

I was supposed to be having the second of my 6-month follow up Pap smears today. That’s not how it turned out.

My doctor was joking with me that this would be one of the last times I’d be looking at my cervix, and did the smear swab. Then he sprayed with the vinegar solution, and obviously noticed something he didn’t like the look of. He told me he’d be taking a biopsy. While this was a lot better than the first colposcopy I had, it still hurt like a bitch.

Then he said he wanted to do a scraping of the inside of my cervix, in the area he couldn’t see with the colposcope. “Some cramping” ensued, and there was a pretty decent amount of bleeding, so he had to use whatever that peanut butter-looking coagulant stuff is. Unpleasant.

That second scrape made me really nervous because he hasn’t done it before. I’m not sure why he thought it would be needed now, but hopefully he’s just being thorough.

He didn’t book a follow up right away, which makes me feel slightly better, but said he would call with biopsy results in a few weeks.

I asked him about TTC, and he advised me to wait. He said that it would be safer to make sure the biopsy is negative (of course) first, but that if I get pregnant, they can still do some treatment if needed. Usually changes take a long time to develop/worsen, apparently.

So, that’s awesome. Just waiting with baited breath now!

In other news, my last poke/prod of the week is scheduled for Friday when the Humira nurse is coming to my work to do the blood draw for the antibody test.

C is for Catch-Up

Again, let me apologise for being MIA for a bit. The truth is, I’ve been struggling a lot recently and blogging hasn’t been that high on my priority list. That being said, let me catch you up on what’s been going on with me lately.

As mentioned in a previous post, brain fog is a very real and serious side-effect of being chronically ill. I don’t usually suffer with it but the last few months have been quite different…

It started with a drop in my appetite. A normal day for me would consist of having lunch and dinner, and maybe breakfast in the morning if I felt like it. But I began to not feel hungry, and the idea of food would make me feel sick or nauseous. I began eating less and less until it began affecting my energy levels at work. I spoke to my IBD team who recommended I started back on the modulen. This lasted for about a week before I couldn’t manage it anymore and reintroduced solid food alongside the modulen until I was able to eat a bit more and could cut out the liquid nutrition all together. However, I soon realised I had “shrunk” my stomach; I wasn’t able to eat a full meal anymore. I started eating little and often, around five to six small meals a day. This has sort of worked but it’s not always possible to eat midmorning or afternoon, especially when I’m working, so I don’t always get enough food. This has continued for some time now and I’m still trying to get my appetite back to normal so that I might be able to eat more.

Lately though, this has proved difficult; because I haven’t been eating that well, I’ve began suffering with fatigue. This fatigue has caused me to be unable to do much after work or on my days off, leaving me incapable of properly taking care of myself.

This drop in appetite and increased fatigue has left me feeling drained and I’ve begun to struggle mentally. I won’t go into details but it’s got to the point that I’ve reached out to Steps2wellbeing, a UK-based mental health organisation who I have used in the past and may have mentioned before. The initial triage session went well and I’m on a waiting list to start CBT (Cognitive Behavioural Therapy). I’m not sure if it’ll work but I feel it’s worth trying because that’s better than doing nothing.

As for my physical health, that’s begun to decline again and I have, once again, been signed off from work. I don’t know how long I’ll need but even my works occupational health team believes I need time off so I’ll take their advise. I’ve had a blood test as well as a faecal calprotectin. These have shown that some of my inflammation markers are a little raised but not a lot else. And to make this even better, I was admitted to hospital on Monday.

⛔ TMI Warning for this next bit! Please don’t read any further if talk of poop or other bodily secessions grosses you out. Thank you for reading this far and I how you are staying safe. ⛔

OK, so since being admitted via a&e, I have had a CT scan as well as an xray, which have shown that I have inflammation in my small intestine (mostly the lower part, below my stoma) but thankfully no twist, like my GP suspected. The CT also showed that there was something in both my old jpouch and the part of bowel going up towards the stoma (most likely mucous) which was making them both a bit distended. My surgeon has recommended I start antibiotics to help control the inflammation (which I have) and, hopefully, whatever is in the old pouch will eventually come out via my back passage. I started the antibiotics Tuesday but it’s still early days yet.

Eventually, I’ll have the excess bowel removed. My surgeon said that should stop (or at least reduce) the inflammation in my small intestine. Obviously, I can’t have that done now due to Covid, but maybe in six or so months time.

So that’s what’s been happening with me recently. If you made it this far, thank you. I appreciate you reading my rambling posts. This one in particular is a bit disjointed because I wrote over several weeks where a lot was going on, making it hard to concentrate. I’m sorry if some parts didn’t make a lot of sense but the brain fog is pretty strong right now. Anyway, thank you again for reading and I hope you are staying safe.

Living with a chronic condition can be tough because you are dealing with it on a daily basis. What can make it even tougher is when no one really know what your condition is or how it affects you. You never truly understand until you get it yourself, right?

Maybe you have made a new friend or started a new job but none of your colleagues know about your condition and that’s fine, you’re comfortable with it like this. But then you have to rush to bathroom for the umpteenth time that morning or perhaps they see you taking your truckload of meds at lunch. And they start to ask questions. What do you do? Do you shrug it off and say it’s nothing? Or do you tell them about your condition, bringing awareness to them?

Now, just to be clear, no one is forcing you to tell your story to anyone. You are not obliged to tell everyone who asks about your health situation (or anything else for, that matter). Telling your friend or colleague that “it’s nothing” is a perfectly fine answer and they should respect that you don’t want to tell them and if they try to push the issue, they are in breach of your trust and are not owed anything (not that they were to begin with).

However, if you do choose to share your condition with them, you may find things are a little simpler to explain; for me, telling some of my colleagues that I have IBD (and a stoma) was somewhat unavoidable; I was having issues with my stoma that were affecting my ability to perform my daily tasks at work so a couple of my colleagues found out. Although I didn’t feel 100% comfortable about sharing such personal information with them as we had not known each other for very long, it did make my life a little easier from that point on; my colleagues who knew were more aware of what I was able to do (ie. lifting heavy things was a big no-no at the time) and I didn’t feel like I needed to explain myself if I was rushing to the bathroom or needing to sit down for a moment, having overdone it.

I know, it’s not our job to educate the ignorant but if someone asks, helping them to understand a condition that affects so many but is otherwise unknown to those who do not suffer with it will help raise awareness and may even make your life a little easier. It’s your choice though, please do not feel like you have to tell someone about your condition/s just because they asked. They do not have a right to that information, it is yours to volunteer if you see fit.

[Please note: this was originally posted in early June on my main blog page https://what-can-i-eat.com/2020/06/02/a-is-for-awareness/]