Have to get this off my chest

[A ja]

I know this may sound completely crazy but I'll write about it anyways

It's been exactly one year since I've been hospitalised and then was diagnosed with crohns. I've been doing alright ever since, taking humira, steroids and immunosuppressants. Back in November I had to get an iron infusion because my levels dropped a lot and also been taking b12 ever since cuz that was low as well. I've had more energy ever since which is great cuz there was a moment where I just came home from work and basically died on the sofa.
So there.

Since February I started working out a lot again because I signed up for the yearly 10k with work (that I had to cancel last year because of my 1 month sick leave) and a spartan race I signed up for that'll take place in july (I've always been a pretty active person and I'm guess I like doing these things even more now...psychological thing i guess, proving to myself that I'm fine). Anyhow, I always ran 9k to train and went about every 4 days recently and felt pretty good about it. Anyhow about 2 weeks back I woke up with bad pain in my stomach (I do have a fistula connecting two parts of my small intestine that hasn't closed since I was at the hospital but surgery didn't seem necessary since). I could see myself in the hospital already but after a few hours I fell asleep again so I figured I was fine...still told the doc about it thought so she ordered some extra blood tests to be done and I've had an mri scheduled already for this month. Haven't heard back yet but yesterday evening at work I had the worst pain, quite out of the blue, I couldn't even stand anymore and was shaking. Frankly I would have gone to the hospital if I wouldn't have been alone at work (but I felt that I couldn't leave)...even if I didn't have any fever or throwing up, it just didn't seem normal. Anyhow after two hours, as quickly as it came it was gone and I was juuust fine again. Did wait for fever and chills during the night (as that's what happened last year) but nothing happened. I've been quite exhausted since, didn't go work out either...

But well to make a very long story short...you know I came to realise, even though it was so horrible and I hated every second and I missed my husband so much and our doggy and it completely threw me off track, I was really hoping this time that I'd have to go to the hospital for a few days...this sounds horrible but if I may explain...I've read somewhere that 50% of people with crohns get hospitalised again within the first year of being diagnosed...now ever since I guess this was just hanging over my head...Florida vacation Last December?...hope i won't be in the hospital...trip to Lebanon? Yeah hope I won't be sick...it's just always there and well one year is over so maybe I'm lucky and I'm the other 50%... i guess another reason it makes me nervous is because funny enough before I went to the hospital last year I was perfectly fine...i mean obviously I had "a bad digestion" what I always said and I guess the biggest thing that I had for 2 years or so was the fever...out of the blue, 39 or more degrees once or so every 2 months...that was it...the day i was hospitalised? Woke up, never felt better...12 hours later, completely gone and in the ER...so even if I feel alright now...how can I know that I will be sleeping in my own bed tonight...why can't I just get it over with so I'm statistically 50% fine for another year?

Sorry for the ranting...i guess I just had to let it out...

 

[Gianni]

Hi Aja, it sounds to me like you're letting a statistic get to you, an unreliable statistic that I've never heard and one that honestly sounds wrong. But for the sake of argument let's use that statistic. If 50% of newly diagnosed crohn's patients return to the hospital in one year, why do you have to be in that 50%? You have to also consider what kinds of patients are returning to the hospital? Are they the ones getting regular check ups and tests done with their doctor? Probably not.

The truth is the stress of not knowing is only going to make things worse. So instead of putting it off until you do end up in a dangerous situation where you'll have to be admitted to the hospital, go to your G.I. and demand a complete set of tests IMMEDIATELY. If its a problem for your insurance, call your insurance up and tell them your other option is the ER, they will clear whatever they have to make sure you get into whatever test you need. Make sure you insist that you have a colonoscopy, an MRI, blood tests, stool samples... Whatever to explain why you're having these issues. You really want to stay out of the hospital as much as possible. No one likes the ER and its a much safer bet to trust your GI with treatment in a timely but responsible manner than to put yourself in the situation where you need urgent medical treatment.

Most importantly though, I want you to completely push that statistic out of your mind. It's not true and even if it were, it wouldn't help you to dwell on it.

Gianni

 

[A ja]

Hey Gianni, thanks a lot for your reply. I never really talk about it with anyone so the fact that i am a person that has the luck to be checked regularly and is in good hands really put it in another perspective. I guess (surely like most ppl who get sick) I could never really get over how quickly my body just betrayed me and failed me like that without much of a warning so I always was assuming the worst to happen ever since...but yes...i will be more optimistic from now on and I do appreciate you having taken the time to support me

 

[DJW]

Hi A ja,

I've had CD for 38 yearsish. It not uncommon to have times like this, physically and psychologically.
Keep your doctor in the loop with what's going on.

Talking it out is important.

Sending you my support.

 

[A ja]

Hi A ja,

I've had CD for 38 yearsish. It not uncommon to have times like this, physically and psychologically.
Keep your doctor in the loop with what's going on.

Talking it out is important.

Sending you my support.

Thank you so much for the support [emoji4]

 

[JaimeM]

I've been diagnosed with Crohns for 9 years and have never been hospitalized.. I've even had a microperforation and fistulas. I've always been able to manage at home.

 

[A ja]

I've been diagnosed with Crohns for 9 years and have never been hospitalized.. I've even had a microperforation and fistulas. I've always been able to manage at home.

Oh wow I didn't think there were people going such a long time without hospitals...that's great for you [emoji4]

 

[JaimeM]

My big thing is to make sure I listen closely to my body.. If it's saying rest, I try to rest. I tend to overdo it somedays (I work in the medical field so some days it's kind of crazy, I also have an almost 2 year old son) So you can imagine lol.

You start to appreciate the good days you have and the things you can do.. I'm not a huge go out and be super active person. But I like to garden, go for walks/the park, and am really involved in my church. I travel for work on occasion and up until recently led a super normal life. I mean I was careful, but still did everything I wanted to.. I've been sick with stuff since I've had my son (had cdiff for 6 months and then have had a microperf, and found a few fistulas which I ended up having to go to mayo to have a workover) anyway, I've still worked pretty much everyday and still have a happy kiddo and husband. I do what I can when I can, I try to get out and do something with them a few times a week. Thankfully I am starting to feel better with the new meds they've put me on, but it's been a tough road. AAAND I haven't had to have any surgeries. So it does happen.

One thing to remember too, it may not always be your crohns.. You may just have a stomach bug some days.. That was something it took awhile for me to learn. Sometimes you'll have a little pain if you ate something that might irritate that part of your bowel.. The pain can definitely be a sign that something is starting to brew. But it might just be that something was too dense to get through easily (if you have a stricture anyway)

 

[fuzzy butterfly]

Hi and welcome Aja.cant really add to the comments above..
Yes hospitalisations can happen,but please dont worry about that untill it happens.. with good care and a little tweaking of lifestyle you may not need to go to hospital for long periods of time. Best wishes and good luck

 

[A ja]

My big thing is to make sure I listen closely to my body.. If it's saying rest, I try to rest. I tend to overdo it somedays (I work in the medical field so some days it's kind of crazy, I also have an almost 2 year old son) So you can imagine lol.

You start to appreciate the good days you have and the things you can do.. I'm not a huge go out and be super active person. But I like to garden, go for walks/the park, and am really involved in my church. I travel for work on occasion and up until recently led a super normal life. I mean I was careful, but still did everything I wanted to.. I've been sick with stuff since I've had my son (had cdiff for 6 months and then have had a microperf, and found a few fistulas which I ended up having to go to mayo to have a workover) anyway, I've still worked pretty much everyday and still have a happy kiddo and husband. I do what I can when I can, I try to get out and do something with them a few times a week. Thankfully I am starting to feel better with the new meds they've put me on, but it's been a tough road. AAAND I haven't had to have any surgeries. So it does happen.

One thing to remember too, it may not always be your crohns.. You may just have a stomach bug some days.. That was something it took awhile for me to learn. Sometimes you'll have a little pain if you ate something that might irritate that part of your bowel.. The pain can definitely be a sign that something is starting to brew. But it might just be that something was too dense to get through easily (if you have a stricture anyway)

Oh that sounds like a lot on your plate but I guess you're right...actually ive noticed before I got diagnosed that whenever I got those high fevers it was always the day after having a lot of stress plus being tired and then on top of that having gone for a run even though I knew my body didn't really have enough energy at all...so i really am watching out a lot with stress of which I have plenty (even though we don't have kids yet [emoji4] ) anyways since I got diagnosed and started with all my beds I haven't had a fever even once so that is great.

So i guess I'm lucky [emoji5]

Hope I'll be managing it as good as you some day [emoji4]

 

[A ja]

Hi and welcome Aja.cant really add to the comments above..
Yes hospitalisations can happen,but please dont worry about that untill it happens.. with good care and a little tweaking of lifestyle you may not need to go to hospital for long periods of time. Best wishes and good luck

Thank you for your kind words! Fuzzy butterfly...your username cant get any more fabulous [emoji4]

 

[fuzzy butterfly]

You are welcome.. aw thanks i kinda like the name as it describes me quite well..fuzzy headed and i flit around alot lol.
I know its easier said than done the not worrying... but try and focus on the positive and keeping as well as you can. :hug: