#crohns disease

Took a mental health break but I’m back again!

Turns out my hernia may not be a hernia and is likely a gastrointestinal issue, as there’s Crohn’s disease in my family this has worried me a lot.

On the bright side, I’m now being genetically tested (properly instead of just talking to someone about it!) so I’ll finally find out about what type of EDS I actually have instead of their best guess. Looks like it might be classical but I’m cool either way. I’ll also be finding out about a lot of other things through this test so I’m pretty happy about it!

So I’ve been doing a lot better lately. I’ve started working with a trainer, rebuilding some of my muscle mass after years of weight fluctuations absolutely decimating me. I’m even starting a new job next week!

But this week, I also ran out of pain medication early for the first time in *awhile* (stupid taper combined with a couple of rough spurts earlier in the month) and I’m being reminded VERY CLEARLY this week just how much chronic pain I still live with. 

Honestly, it’s not like I had forgotten…per se, but when you’ve had a good pain management arrangement for a long time, losing it for more than a day or two is really, really hard.

And sometimes the worst part feels like the fact that I can’t talk about it with people w/o being labeled an addict. Or people immediately thinking I’m “sick again” and saying “oh but I thought you were doing so much better”. I am doing better…but the pain has not magically gone away. It’s probably NEVER going away.

UUUGGGGHHHHHHHHHHHHHHHHHHHHHHHHHH!

chamblertara:

being chronically ill is incredibly isolating, but please know you’re not alone. it can be comforting to know others experience the same

Sometimes my husband is surprised at the depth of my “online” friendships, but when you spend as much time as I do sick at home or in the hospital, awake at all hours (but not necessarily “normal” ones), and always having to cancel plans, the only people who understand are other people doing the same. Everyone else is too busy with “real” life. 

The importance of supportive online spoonie communities is very real. Don’t feel like those friendships are worth less just because you don’t see each other in person. <3

tcfkag:

So, I’m having a really rough week. It feels like literally the second I get a break from one thing or a handle on another, then another thing pops up. I never get a break and it is exhausting. And sometimes it just makes you feel so alone because even those that support you - and I have a hugely supportive community of people in my life - just can’t understand. I’ve been feeling increasingly depressed and anxious and alone and my therapist does not have any availability to see me…possibly for months. So I wanted to just write up everything I’m going through because sometimes that helps but also because hopefully some of you may have gone through some similar things (esp. blood clots and ovarian cysts) and could give advice and/or just support. 

Here’s a (not so) short summary of shit that’s been going on lately (in list form because why not). Don’t feel like you have to read it all. I know everyone has their own things going on. But I just needed somewhere to vent and while I shared some of this on FB, I also feel freer to be honest and just fully disclose how hard this is for me here. Sometimes that’s one good thing about this hell site - less reason to self-censor and try to sound positive/hopeful/happy when I really truly am not.

• Last Monday (the 15th), I finally finished three months of IV antibiotics I was on for an intra-abdominal abscess (an infected collection of fluid that was right underneath my diaphragm which meant that, for a while, it hurt to even take a breath). 
• Good news right? Stopped it about a week ago which is awesome because the antibiotics were infused two hours x three times a day (i.e. six f*cking hours a day that I was connected to an IV bag).
• But, I knew I would need a follow-up CT scan that was scheduled for this past Wednesday….and who knew what that would show.
• Towards the end of last week, I started feeling very tired all the time. And then my physical stamina just suddenly….decompensated abruptly. I would get tired doing anything. Monotasker and I went to the grocery store and halfway through, I had to sit down (or risk passing out). After a few minutes, I told him “we need to get out of here” so we rushed through the rest of the basics we needed. And then while he checked out, I sat on a bench near-by. My heart was racing, I was out of breath, I was dizzy and light-headed, and just generally felt like I had run a 5K. 
• The first couple times this happened I thought “well, maybe I’m out of shape, I *haven’t* been working out at ALL lately. But then I remembered, it was what - a week ago that I attended NYCC where sure, I got tired sometimes and had to sit down once in a while, but it was nothing like this. And I knew that fitness doesn’t decompensate like that….it’s sad that when confronted with such a serious health issue that my first reaction was to just….blame myself. Right away.
• So last Sunday (a little over a week ago), I went into the ER to get checked out. I hoped it was something SIMPLE, like dehydration or maybe my anemia had gotten worse or low levels of some kind of electrolyte imbalance. Anything that could be handled in a single evening. Three guesses about whether that was really the problem (though if you’ve followed me for more than a hot minute, I’m sure you know that the right answer is…because of course, NOTHING is ever simple).
• At the ER, they decided to do the CT scan I was supposed to have that Wednesday just to make sure there wasn’t anything they were missing. And while the abscess they had been treating was largely unchanged (so they are going to stop the antibiotics), they also found that I had a blood clot in my pelvis. This is my third blood clot but the other two (a DVT in 2008 and a PE in 2015) were both post-surgical. This is my first blood clot that happened “spontaneously”. The admitted me to the hospital for about 48 hours and put me on a heparin drip until they could get a blood thinner arranged to release me and send me home. 
• A few observations and factoids about blood clots and their treatment for those who are interested.
• People with Crohn’s Disease and Ulcerative Colitis (i.e. IBD) are more prone to blood clots. If you have IBD (or any autoimmune disease actually), you should be aware of this risk and know the signs of blood clots (esp. after surgery) and make sure to take preventative measures like standing up to walk around on long flights.
•  Traditionally, blood clots were treated with the blood thinner warfarin (Coumadin is its brand name). It takes a few days to get to the correct level in your blood, so you have to be on injections of another blood thinner Lovenox (twice a day, at home, injected yourself) until your “INR” reaches the right level in your blood. While on warfarin you have to have regular bloodwork to check your INR - every few days at first, then weekly, and if you’re on it long term the tests become less common.
• This is very challenging for me - after ALL the health issues I’ve had, my veins are completely shot. Even basic blood work is a challenge.
• There is a newer genre of blood thinners out there called DACOs - you’ve probably heard of them (they include Xarelto and Elliquis) which are better for a couple reasons, I guess, but the main one for me is the lack of required blood thinners. Three guesses on whether my health insurance approved them? NOPE. They sent me into pre-authorization hell (which frequently means “nope never going to happen” but in this case I hope means “well if your doctor pushes hard enough, we’ll give in eventually).
• Question: has anyone gotten one of the DACOs approved? Is there anything specific that you had to prove? How did it end up working out?
• If you are someone who menstruates, just be aware - going on a blood thinner can cause your period to start early (mine started less than two days after starting them - at least a week or two early) AND it will make your period longer and heavier. 
• P.S. - the GYN I saw yesterday said that Xarelto would make that even worse which leads into a later part of this post, but basically she said it was really important that I get my IUD replaced if I was going to be on Xarelto long term.
• Since this is my third blood clot, it may mean that I will have to be on blood thinners permanently, which I’m not looking forward to AT ALL. Because really, do I need another medical complication? The answer is no. No, I do not. WHICH MAKES THE NEXT PART OF THIS POST IRONIC.
• So this is the part of the post that I could actually use some advice on. 
• So for a while, maybe as long as a year, every CT or MRI I’ve had has included a note from the radiologist saying that a benign ovarian cyst was seen on the scan (or sometimes it was called an “inclusive cyst” from the ovary into the peritoneal area. It would sometimes “recommend follow up with a GYN”. Okay….fair enough.
• When I asked my GI and my PCP about it a long while ago (maybe even two years ago), they both sort of just said “sure you should see an OB-GYN about that at some point” but really didn’t follow-up on it. And then time passed because I had a LOT of other health issues that took precedence.
• Sometime nine-months to a year ago, I started having pain in the area where my rectum used to be, especially when I was sitting at my desk at work. There were days it was so bad that I could not sit directly on my butt at all and had to constantly find different positions. And on those days, I would frequently also have pretty severe pain in my pelvis. For months I basically ignored it…again, I have chronic pain and I had bigger fish to fry. Again, it got put on the back burner. Until one day it was so painful I was crying at work. So I called my PCP who also called my GI and he looked at my scan and said “it’s probably that cyst, you should see a GYN….” Still no urgency (and my PCP even said “I don’t know i it’s that - sometimes doctors like to blame cysts when they just don’t know what else is wrong.”) Again and again, this cyst was acknowledged but treated as no big deal - a nuisance to be dealt with eventually.
• Side note: at no point in this did my PCP or my GI bother to ask me about pain with sex, despite that being a somewhat obvious question.
• So nine months ago (or so), my PCP finally did get me a referral to see someone in the minimally invasive surgical OB-GYN office. I called to make that appointment and was told “you cannot see a surgeon until you’ve seen one of the GYNs” so I got an appointment for several months later with a GYN in the office. 
• Then, I had to cancel two different appointments with her because I kept being sick and/or in the hospital…and of course, each new appointment was two-three months later. 
• So my appointment with the GYN (who was lovely) was yesterday. She told me that my cyst (which is in both the ovary and the peritoneum) is now the size of a GRAPEFRUIT! It is almost certainly to blame for the pain I get sometimes in my (former) rectal area and the pain I have when I have sex. She said that even if it’s “benign”, if it’s symptomatic like this, I shouldn’t have to live that way. For the first time, I had a doctor who I felt like was taking this issue seriously even though it wasn’t related to my IBD and was “just” a lady issue. (Though to be fair to my PCP, she has taken it seriously in the past, but it’s just not her specialty).
• This GYN also said she’d be willing to take me to the procedure room and sedate me to put an IUD in, whether I have surgery or not because I had such a bad experience getting it last time!!! I really loved that she took my concerns about that seriously. Bless her.
• So the (very extended) upshot is that I made an appointment with the minimally invasive surgeon who I was supposed to see SIX-NINE months ago (who, amazingly enough, had an appointment available MONDAY) and I may need to have another surgery to take care of this cyst. This cyst that wasn’t always the size of a grapefruit….but years of being told that it was benign, to “check it out” eventually, and having all of my other health needs take precedence has now left me here. With a huge cyst that has ruined my sex life and is starting to seriously impact my everyday life too.

TL;DR? I have TERRIBLE LUCK. ESPECIALLY this week. And I’m just feeling absolutely overwhelmed, lonely, and frustrated. And if you’ve had experience having surgery for an ovarian cyst, especially one that’s “including” on something outside the ovary, I’d really appreciate your thoughts on the procedure and whether it helped and was worth it.

I know this is a VERY long post about what’s going on with me and I also know not that many people follow this blog - but if anyone has any thoughts or similar experiences, I’d love your thoughts.

This week for the first time in a while, I think I may be having some relapse of my PTSD symptoms.

I’ve been finding myself zoning out. Thinking about time spent in the hospital. Worrying about things going wrong. But it’s more than normal worrying. 

My husband and I are are trying to have a child using a gestational surrogate (my AMAZING sister-in-law who offered to do it for us without us ever THINKING to ask) and it’s going well so far. This week we picked an egg donor, hopefully. But I’m finding myself zoning out (maybe disassociating a little) and just letting myself get terrified. Like, what if I get sick. What if I can’t be there. What if I suck as a parent. What if I fuck up my kid. And on and on in a merry-go-round.

It’s not that we haven’t planned for these things. We have a great support network and I’m good with kids! But that doesn’t stop me from being terrified.

It doesn’t help that I’ve had a couple rough patches this month and now I’m probably going to run out of pain medication a bit early before my refill….which means I’m pre-emptively worrying about that.

Oh, and my aunt had to have an ostomy surgery this week because her worsening cancer caused an issue with her intestines and I’m kind of being her support now. And my uncle (not the one who was married to that aunt, but his twin) apparently slipped into a coma this week and may die very soon. So none of that is helping either.

endonow:

I miss the person I used to be before I got sick

I mourn the person I could have been if I didn’t get sick.

creativeronica:

x-cetra:

randomslasher:

jennytwoshoes:

A friendly reminder for those of us who do very little during the day (by “normal” standards) but are still exhausted

Your body is literally fighting the pain. Fighting takes energy

…oh…

Yep. Even if you learn to dissociate from most of it consciously in order to function, your body is still pushing against it, and the pain is pushing against your body, all day long

@x-cetra, I was just telling my counselor how I often dissociate to cope with pain, and how I wasn’t sure if that was okay…but he assured me that it is actually a normal response when the mind can’t handle being fully aware of the intensity of the pain.

This is why responsible pain management is so vital to people in chronic pain. Because when you tell us to just “cope” or “try mindfulness”, you are ignoring the fact that the pain is so distracting (or the things we do to distract from it) makes it essentially impossible for us to live a normal life or be “contributing” member of society.

It’s hard to work when your brain is spending most of its energy just trying to either make you think about how much your body is hurting….or trying to NOT think about it.

thoughts-in-me:

tcfkag:

So I just had surgery to re-site my ostomy and I have been thinking, maybe since I have a new and renewed stoma, I should also have a fresher name for him.

Background: my first ostomy surgery was in 2008 and I named him after a politician who I believed was full of SHIT. So his name was George. But that’s become dated.

I’ve been thinking about Donny (not sure I can even live saying his name even to be mean), Mitch, or Lindsay.

Any other suggestions? Votes?

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.

Hey everyone! I’ve not been updating as much lately because there hasn’t been a whole lot that’s new.

Last weekend, I did my second Gutsy Walk for Crohn’s and Colitis Canada! I again made it to Top Pledge Earner status thanks to my generous friends and family, so I guess that’s gonna be my benchmark every year

This week and next, I have three appointments. I saw my family doctor today for a skin check, and he doesn’t like the look of a new mole that popped up on my fourth toe (of all places), so I’m being referred to a dermatologist to likely have it excised. Kinda scary, but I’d also rather be safe about it. So, I guess I’m now adding dermatologist to my collection of doctors, ha ha! (Seriously, I have a GP, GI, rheumatologist, ENT, gynaecological oncologist, endodontist, and I’ve also seen an infectious disease specialist in the past )

Next up is my GI on Thursday, and there’s going to be a lot to discuss. As mentioned, I’m not confident that humira is still as effective as in the past, and I’ve had some odd things going on. The random hive issue, perianal problems, and hair loss that’s returned. I’ve also had major fatigue for the past month, and increased frequency. I’m sure there will be labs ordered, and probably a scope as well. My husband and I are also (we think) FINALLY going to start TTC in the next few months. I want to make sure I have my ducks in a row before we start the process.

Monday next week I have what is hopefully my last repeat pap after my abnormal result and the colposcopy that followed. If it’s all clear, I’m good to go for only having annual paps again! Yay!

So much happening, I’m tired just thinking about it.

Hey Crohnies, if anyone out there has tried and failed Humira, could you let me know what failure was like for you?

I’m starting to suspect that it is losing effectiveness.

Lately my frequency has increased from 1-2 times a day to an average of 3-4. Slightly increased pain, and massive fatigue. I’m sleeping a minimum of 8 hours a night, but I’m dragging myself out of bed, falling asleep at work, and needing naps. Feeling some general malaise.

I’ve had two instances of a random hive popping up on my stomach (I’ve never had hives before, anywhere), for seemingly no reason.

I’m also losing hair again

I have a GI appointment in June, and I’m 99% sure I’ll need a scope to investigate. It’s also been over a year since my last one, so I don’t think I’m escaping this time. I’m going to mention all of this to her, and see what happens, but I would appreciate opinions!

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

Not acceptable.

I can’t believe I didn’t post this when it happened! I’m gonna do it now, cause it actually felt really good to say what I did.

I had a terrible, weeks-long cold and sinus infection around Christmastime. On my last day of work before the holiday, I knew I was getting sick, so I put on a face mask in the office to avoid spreading my germs.

There is one particular person at work who has noticed my mask-wearing, and commented a few times in the past. He pretty much says the same stupid thing every time; “oh people in Asia do that a lot because there are so many people, thanks for being considerate,” and then talks over me when I try to explain that I’m masking for my own protection because someone else is sick. 

Well, as luck would have it, I ran into him in the copy room. Again, he has to make a comment, but this time asked me if I was sick. I said that I was getting a cold, and didn’t want to infect others. This was the exchange after that:

Him: “Wow, you’re really sick a lot, huh?”

Me: “Uhh…”

Another Coworker: “Um, she has an illness.”

Him: “Well, you really need to take a multivitamin or something” *laughs*

Me: *tired of this shit* “Yeah, well that would be awesome, but I actually have an autoimmune disease, and I inject myself every two weeks with a drug that kills my immune system to prevent my body from attacking itself, so I can’t just *airquotes* ‘take a multivitamin.’ Thanks, though.”

Him: “Uh, oh, God, I’m sorry.”

Me: “Yeah, sometimes you need to be really careful in what you’re saying.”

Him: “So, like what do you have?”

Me: ….

Why are people like this? WHYYYYY?

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!

Cipro got me like

Been muggle-sick for 2 weeks, and went to the doctor today. I was getting better, but then my sinuses filled back up and I spiked a fever yesterday.

I have a secondary sinus infection, and I’m now on cipro for two weeks

I am not in a very good place mentally, guys.

I’m 27 years old. I find that instead of looking forward to all of the great things that should (and could) happen in my life, I’m just worried about what will go wrong next.

Will it be another part of my body that decides to crap out or give “abnormal” results? Will my car explode? Will my boss decide to “restructure,” and cut my pay? Will my husband still not have found decent work in 6 months? Will I literally die of stress?

I’m just not my usual optimistic self. Everything that can go wrong has gone wrong lately, and I’m feeling pretty dragged. With all the expense of my dental issues, car repairs, and still only being on one income, the lack of money is pretty much the bane of my existence.

My husband has been out of work since his contract ended at the beginning of August, and has zero job prospects. A few phone interviews went nowhere. He has depression and anxiety, and seems to be totally incapable of even looking for postings lately. So, everything is on me. I’m the breadwinner with very little margin for emergencies, and it’s very difficult not to just explode at him every day that I come home, and he hasn’t looked for any jobs.

I’ve also just gotten word that my mom will be travelling to Iraq after Christmas to go on a medical mission. I know that she is amazing, and unselfish, and a hero, but I am dreading it. The Middle East is so unstable, and things can change so rapidly. There’s no guarantee of her safety, and I know I’ll be totally stressed and worried the whole time she’s gone.

It’s just… a lot, I guess.

Chronic illness, and all the unknown that comes with it is enough. I’m having a hard time dealing with that, and all the other normal life crap that’s happening at the same time.

And I swear to God, if I hear “everything happens for a reason,” or “you must have something good coming to you” one more time, I might snap.