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Crohn's Disease
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Posted 3/31/2018 4:06 PM (GMT 0)
Hi, everybody.
Don't know why I'm telling you all this after the fact, but I almost died on the 19th.
I had a little bit of puking and then diarrhea off and on for 2 days. I'm a Crohnie so the idea of going to the ER for diarrhea was not in my brain, so I didn't go and it was almost too late.
By the time my Matt dragged me to the ER, my blood pressure was so low that I was in acute renal failure. Did you know that the body can have a blood pressure of 60/90 and not die? Because I didn't!
They put me in the intensive care unit and loaded me up with fluids and antibiotics, but my kidneys had been starved of oxygen for too long. It's been almost two weeks and I'm still so swollen.
The whole thing has made me really doubt myself. I thought that I would know if I was really sick, that I would be able to tell, but I was so wrong. My babies were without their mom for two weeks and I couldn't work. I'm still so upset. And the doctors can't find a reason why this happened aside from diarrhea and dehydration.
Posted 3/31/2018 4:40 PM (GMT 0)
omg, @gypsy!! How terrifying! I am so sorry that you were so sick!! That is just so scary.
Posted 3/31/2018 5:42 PM (GMT 0)
Was it sepsis? I had it and my blood pressure was very low, and my oxygen was nearly none. My lungs were failing and i needed a breathing tube. Mine was caused by weak immune system due to IBD drugs.

I am sorry you're feeling so bad. I felt that way too. I waited too long to be seen. I figured I was "fine". Then after all was said and done I had a lot of stress about what had happened. it does get better though. I am thankful you're home with your family.
Posted 3/31/2018 8:07 PM (GMT 0)
Wow, that's frightening. What was your blood pressure when the doctors in the ER took the measure? I just came back from my primary doctor's office visit yesterday. The nurse measured my blood pressure as 96/59. I am slightly worried about 59, because it is lower than 60.
Posted 3/31/2018 11:33 PM (GMT 0)
Unbelievable!!! What a terrible experience to have to go through. I really hope you get some answers as to the cause. Hope you get feeling better asap. Keep us posted.
Posted 4/1/2018 1:40 AM (GMT 0)
Whoa! So glad you got help and are here and able to talk about it! That is so frightening! Keep pressing for more answers. I always doubt myself and it’s terrible, even when I had the pulmonary embolism.
I also have a terrible time with my blood pressure. I frequently have days where my bp is around 74/56 which makes it super hard to function.my normal is in the 90s/50s. I can’t imagine yours being that low and not being completely incapacitated. So sorry you went through all of this
Posted 4/1/2018 1:49 AM (GMT 0)
Sorry you went through that whole traumatic ordeal! We live with so much discomfort that it is hard to know when to take things seriously. Glad you are ok now! Be gentle with yourself. I wouldn't be surprised if you have a little PTSD from the whole experience.
Posted 4/2/2018 4:42 PM (GMT 0)
I am sorry to read what happened. Like you I learned my lesson the hard way about how serious dehydration is for a person. I had no idea. Later a friend of ours was telling us his wife nearly died from dehydration. After my little event, my pcp told me, if you don't urinate every 12 hours go straight to ER.
Posted 4/3/2018 2:29 AM (GMT 0)
Thanks for commenting, everybody.
I'm a bit of a mess after all this.
And my blood pressure is super high and no one can tell me why.
I used to be 120 and now I'm in the 150s to 170s everyday.
Also, I keep having nausea and keep puking, but only in the morning. My kidneys are working great, so no one has a clue. I keep hearing the 'you've been through a lot', but my heart? wteffff
Posted 4/3/2018 11:43 AM (GMT 0)
I'm sorry, gypsy. That certainly must have been a horrendous ordeal. I wish I could think of something, but I can't - just keep on trying to look for answers. Have they given you any suggestions on how to prevent such severe dehydration again?
Posted 4/6/2018 10:13 PM (GMT 0)
Hey...

Just checking on you? How goes it?

Clo
Posted 4/7/2018 11:59 AM (GMT 0)
How scary, my thoughts and prayers are with you… this disease is horribLe!!!
Posted 4/8/2018 3:40 AM (GMT 0)
Well, my feet are still pretty swollen and my blood pressure is still high. I'm on a med to treat both, but it makes me feel kinda pukey and like I'm on a boat. I also wear compression socks.
My GI's office finally called me back and they want me to come in this week, as well as do a stool test/fecal cal. But the funny thing is that my belly is much better now that I'm no longer just eating soup. I had my first semi-solid poop today since early March. :O
Plus, the ER called me back and said that some type of bacterial infection showed up in my urine culture, so now they want me to take cipro, which is scary, because I was on pred and cipro in February, and one can't help but think that it attributed to the March mess that put me in the hospital for 10 days.
Also, I went back to work as a teacher on Thursday. The stairs really kicked my butt. I did three steps and then had to pause. I kept telling myself 'don't hurl, don't pass out'. But on Friday, I took 4 at a time.
I'm still very weak. It's really hard for me to hold my baby for very long. I was gone from him for so long that it's like he doesn't see me as his mommy anymore, but as a relative. He doesn't go to me when he's sad.
No one knows why any of this happened, and so no one knows how to prevent it from happening again. Everyone in my family now is super paranoid around me, saying they're going to take me to the ER the next time I have a fever. It makes me sad, but I can't blame them. I'm obviously not a good judge of how sick I am.
T_T
Posted 4/8/2018 3:38 PM (GMT 0)
Don't beat your self up over this. I think everyone on here has experienced a situation where they were much sicker than they thought they were. I have done it at least 3 times. BP was so low...52/32..and dropped from there.

Just ensure you get plenty of rest and spend quality time with your family.

My thoughts and prayers are with you.

Clo
Posted 4/8/2018 3:44 PM (GMT 0)
Well, lets be honest here, this is not something you did to yourself. Don't put yourself on a guilt trip & above all stressing over this sure will not help your situation at all.

Children are much more resilient than we often give them credit for. Your little one will come around. Just be your usual self with the little one.

I am sorry that you went back to work so soon. It sounds like an extra week off would have helped you get back on your feet better. Keep an eye on the swelling of the feet, elevate them as much as possible. I retain fluid really bad & sometimes will lay on the bed with my feet propped on the headboard to get some of the swelling down. One of my BP meds has a diuretic in it & that helps too.

Take care.
Posted 4/10/2018 10:08 PM (GMT 0)
Oh my gosh - I feel like I could have written this post. I went into the ER a few weeks ago after weeks of feeling just awful, but nothing specifically bothering me. Turned out I had a blood clot that traveled to my lung, pneumonia, and a blood infection. This is all from an infected picc line - but I did not display the typical symptoms because of the Crohn's meds I am on. I never had a fever and the vomiting and diarrhea were already pretty typical. I spent a week in the hospital and am home now on iv antibiotics and blood thinners (along with continuing my TPN and fluids).

How are you feeling now? Did they do blood cultures in the hospital to check for infection? Unfortunately we don't display the typical symptoms of infection due to out medications. The infectious disease doctor I saw in the hospital said he wasn't going to even test me for a blood infection at first but the hospitalist encouraged it because there was from discharge from my picc site. It's so hard being sick and in the hospital with children. My surgeon actually wanted me to return to the hospital last week due to dehydration but I refused mainly because of my son - he gets so stressed when I am sick and I just want some stability for him. Luckily I was able to rehydrate at home. Don't push yourself - you HAVE been thru a lot and it will take time for your body to recuperate and for your energy to return. I'm still off from work and will be for the foreseeable future. I'm feeling better but am still so tired.

I am sorry you had to go through this and I hope you are on the mend!
Posted 4/11/2018 2:04 PM (GMT 0)
oh my! I'm terribly sorry you've been going through this. The ramifications of this horrific disease on self and family are truly heartbreakingly sad. I'm glad your hubby dragged you to the ER.

It's hard not to beat yourself up. You didn't cause this, your son still loves his momma and you will get stronger!! Can you take more time off work? It doesn't sound like you're fully ready to return.

Sending healing thoughts....lots of themsmile
Posted 4/11/2018 7:56 PM (GMT 0)
I know exactly how you're feeling. With my first kid, she was 3 months old when I flared. I was admitted to the hospital 10 times in 5 months, and I have almost no memory of that time. Even when I wasn't in the hospital, I couldn't take care of her (and strangers from church had to while my husband had work). So I pretty much missed from when she was 3-8 months old, and it became a HUGE adjustment period. It broke my heart every time she wanted her daddy to comfort her instead of me.
Posted 4/12/2018 3:24 AM (GMT 0)
I went to the doctor on last Wednesday when I was still super swollen with really bad feet and high blood pressure. I weighed 192. And then I went back to work teaching.
Today, I went to the same doctor and I wasn't swollen any more and my feet looked great! My blood pressure was 123/84 and my weight was 162!
I literally lost 30 pounds in one week!
:O
It's insane! I was over 200 pounds in the hospital so my theory is that I had at least 40 pounds of water weight after I survived dehydration and kidney failure.
Mind.
Blown.
Posted 4/12/2018 3:50 AM (GMT 0)
These stories made me cry. I am so sorry that young moms have to deal not only with crohns disease but with the impact it has on their children and family life.

I am sorry you all have to deal with this. I also know that your children are just thrilled to have you in their lives and love you so very much.

You are in my thoughts and prayers!
Posted 4/12/2018 9:47 PM (GMT 0)
Skinny girl!! Hey, there has to be an upside!
Glad things are getting better. A year later I'm still dealing with the medical trauma of my fistula issues. The impact of this disease is far reaching.
I hope they find the source of all this for you and you continue to improve.
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