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Crohns and the ER

M

Missmissie

I have Crohns. Ive been in touch with my gastro for weeks now. Budesonide didn't help, now on pred. Bleeding for months, so much pain, lost 20#s in 3 weeks, cramping form dehydration, starving, swollen bottom. When I go to the restroom it just looks like massive amounts of tissue just shedding out of my colon.

I'm just curious how much a colon can take, I'm scared I'm going to ruin my colon going on like this ten times a day. And the pain, god the pain.

Now it is a holiday weekend and I'm contemplating the ER. Not something I want to do but I want to feel better and probably wont hear from my gastro until Wednesday :(

Sigh. what to do.
 
Jabee

Jabee

Absolutely. Go. Our bodies can take a lot but it sounds like you have exhausted all your reserves and are just getting sicker. When I go to the ER it is generally because of extreme pain and dehydration.
 
M

Missmissie

Hi guys :) thanks for the response!
I went to the hospital, been here since Saturday :( my body at first wasn't responding to the IV pred....
I'm frustrated. Today is the going on the 6th day and as I've improved, I feel like I'm never getting out of here. CT showed much increased inflamation than last year, so swollen almost swollen shut. Took me off fluids yesterday to see how'd I'd do...well, instead of sick all day everytime I'm now having"episodes" of severe pain/blood/gas...had four in the last 24hours now again with frank blood and all the pain I had before. Pain management is a joke, almost like I can get no relief. I can't eat anything still, tried jello, popcicle and it makes my guts start moving and ouch here we go again! Wanted to try me on like mashed potatoes today to "see how'd I do"....but the thought of anything passing thru my colon sounds terrifying. I just want to know should I just go home or do I really need to stay here until I can eat solids and stop bleeding?? This is ridiculous and I feel like I'm taking up space because at times I'm totally fine. Can't I go home and rest??
Thanks guys, I'm venting bcuz I'm so frustrated and want to know what other people do/feel.
Sorry for the misspellings and for the format, I'm typing from my phone...
 
Jabee

Jabee

It sounds to me as if you shouldn't be trying any solids, and possibly no liquids either. During my first bad flare I was nil per mouth for at least 5 of the days I was in the hospital. I think you should stay in for hydration/nutrition. Are they not being responsive to your pain? That's awful. I feel fortunate that my pain is usually well-controlled when I'm in the hospital. You are in the middle of an awful flare. They would be giving you pain relief.
 
DougUte

DougUte

Hi Missmissie. I agree with Jabee. It sounds like your bowels need rest and you should be on Parenteral Nutrition. (Interveineous Feeding). You are having a terrible flare. We understand. I will be praying for you.
 
M

Missmissie

Hi guys, still in the hospital. I have been on no solids and just liquids as of Wednesday...before no food since the 30th. Did have colonoscopy and of course, severe Crohn's. Talked yesterday of a PICC line but I wanted to see if I could tolerate mashed potatoes first so I had that for lunch and dinner...so far not terrible. It's the morning now (mornings are the worst anyway) and my guts are trying to move the taters thru and so I'm uncomfortable, but NOTHING like I have been - tolerable... although with the pain from this honestly being the most excruciating work pain I have ever accounted it may seem like any other pain is a cake walk :) but really, I'm thinkn/hoping for discharge today-with pain meds, bentyl, and a VERY limited diet I feel I could manage this point at home. Then just waiting to set up my stelara infusion...
I finally feel on the upswing and it's so nice! I've been in this horrific pain for so long that I forgot what it was like to use the restroom without it being an ordeal everytime.
They have been trying to alleviate the pain but there's no controlling "that" pain when your right in the middle of it. Dilaudid works but for 5 minutes, and I get the oxy every three hours for continuing pain control...which may subside it a little more not really.
I'm thankful for feeling almost like a normal human! Very glad I came to the hospital even tho I didn't want to! Today is day 7...I'd love to go home! I'm lucky enuff to be able to take the whole next week off work to regain strength again, I think being so weak for so long it's gonna take a min to bounce completely back, and I have to keep reminding myself of that 🤔
So...that's my Crohn's update for now. Thank you so much for your support!
 
Jabee

Jabee

I'm so glad you are feeling better! It's always difficult to make that decision to go to the ER. Once there I always start feeling worse before I get better. It's as if I am finally letting go and feeling everything that's going on with my body. I really hope you get to go home soon. If fluids don't cause pain you should be able to stay hydrated and with pain meds be fairly comfortable. IV steroids work better than oral steroids, but hopefully you've gotten a really good head start at reducing all the inflammation. Good luck!
 
C

Crohn's Veteran

If I understand correctly, you are at least having some progress. You definitely need to stay in the hospital until you can digest solid foods and have "normal" bowel movements. How old are you? With all your symptoms and extended stay, are your doctors considering surgery? I'm glad you are able to get pain medication. Crohn's pain is horrible. I had to be on 3mg of Dilaudid every two hours because of the pain. I really hope things start drastically improving soon, so you can get your life back.
 
M

Missmissie

I'm 37. Still in the hospital, full liquid diet since yesterday and want me to try solids tomorrow. I do not want to! I'm so bloated and uncomfortable from what I just ate, and my movements are feeling and damn near looking the same as when I came in :( I really did do a number on my guts and I know it will take time to 100% heal but I just want to home and have my guts feel a tad bit better! Shall see what tomorrow brings, I don't want solids.
 
Jabee

Jabee

It sounds like you need to go back to a clear liquid diet. I definitely wouldn't move towards solids. I can totally understand wanting to go home, but in the hospital you are able to stay hydrated. Have you talked with the docs about better pain control? During and after my last flare I was on morphine in the hospital and once at home I took both MS Contin and Percocet. Fortunately I was able to reduce and then stop taking them after a few months. What are they putting you on long term?
 
M

Missmissie

I get to go home! And I will not be forced to eat solids just yet! I can introduce them at my own pace! I'll get a stelara infusion this week and discharged with 60 mg pred daily...I hope I feel more relief as this next week goes on and after the stelara infusion! I don't even remember what it's like to have an actual bowl movement 🤔
 
ronroush7

ronroush7

Missmissie said:
I get to go home! And I will not be forced to eat solids just yet! I can introduce them at my own pace! I'll get a stelara infusion this week and discharged with 60 mg pred daily...I hope I feel more relief as this next week goes on and after the stelara infusion! I don't even remember what it's like to have an actual bowl movement 🤔
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I hope you feel better soon.
 
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