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SqueakyandLiza
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June 29, 2020 3:08 am  

I have a question for others with Crohn’s. Since I am still relatively new to my Crohn’s diagnosis, I don’t have much background on what a flare up is like. I know it probably affects everyone differently, but thought I would post this here. 

In November, I had an episode that started feeling like indigestion, and then went to pain in my abdomen, chest and back. I couldn’t even stand up straight- the most comfortable I could get was leaning over with my head on the kitchen counter. I also felt a bit queasy. So we went to the Emergency Room. They did a CT scan and some tests. They also gave me prednisone and a prescription for dicyclomene. They weren’t sure exactly what was causing it, so they attributed it to a Crohn’s attack. After the strong pain meds and high prednisone dose in hospital, I came home and slept several hours and woke up feeling better. 

I had similar attacks in January and March. Both times I took the dicyclomene and a couple Tylenol and slept felt better a few hours later. 

Yesterday the same thing happened so I did the same thing- took dicyclomene and a couple Tylenol and slept and woke up feeling better. Then today it happened again. I took a dicyclomene, but it didn’t do much. I just took another one, along with some Tylenol and just got into bed. It is so hard to get comfortable, being this miserable. 😕

I was wondering if any of you have had Crohn’s manifest in this way - tummy, chest and back pain, with a touch of nausea??  I also feel like the hernia on my left side has gotten worse. It is so huge!!  It literally looks like there is a cantaloupe under my skin. So I’m wondering if the hernia could be causing these symptoms. It does make the pain worse to touch around the hernia. Has anyone with a hernia experienced this??

Thanks for any feedback. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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VeganOstomy
(@veganostomy)
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June 29, 2020 9:58 am  

Hi Liza,

I don't have experience with a hernia, so I couldn't say how that would feel, but Crohn's did affect my back, and nausea came as my disease got worse. A scope is the only reliable way to see if you are in an active flare, along with a blood test to see if your inflammatory markers are up.

I hope this gets sorted out for you. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Lynne
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June 29, 2020 2:24 pm  

Liza, it seems logical that a hernia could impact various connected tissues/muscles but I don't have any direct experience with that. I wasn't familiar with dicyclomene but looking it up, I see it helps with muscle cramps/spasms.  Since that helped at first, you might find a bit of relief from some deep breathing/pain reduction apps or videos online. Just a thought. Really I merely wanted to send you some virtual support and let you know I hope you can find some comfort soon!


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LK
 LK
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June 30, 2020 5:46 am  

Liza, I'm with Mimi and anyone else here! Pain is never fun ! I know you have  an appointment & sometimes soon can take a long time to get here!  I wish you all the best and that everything gets sorted out and taken care of so you can be on your way to healing old open wounds and any Crohns  issues & that nasty hernia! 

Your a good positive, helpful source here, STAY strong!

Linda


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SqueakyandLiza
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July 9, 2020 4:21 am  

I’ve been having a really hard time the last couple weeks. This pain/discomfort which used to be periodically, has been happening much more frequently. I don’t know exactly what is causing it, if it is the Crohn’s or the hernia, but since I feel pretty bloated, even if I hardly eat anything, it makes me think it is at least partially the hernia, which when I’m standing is pretty solid and a bit tender to push on. I think it is partly the Crohn’s too due to the nausea and indigestiony feeling in my back and chest. 

Fortunately I have my second opinion appts next week. I also have a colonoscopy/ileoscopy appt the day before my consultations. I’m nervous about it all, but hopeful for some answers. 

Is there anyone with hernia experience? Especially one on the opposite side as the stoma?  Is there anything I can do to better deal with the pain?

I hope life is treating you all well. Or at least better than it is treating me right now. 😂

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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VeganOstomy
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July 9, 2020 11:48 am  

@squeakyandliza I'm glad you have a few appointments to investigate this and I hope you get some answers to help move you in the right direction. 

Are you able to schedule a video call with a stoma nurse to discuss the pain and possible hernia? If it is caused by that, you should find relief when you change positions (i.e. try lying on your back to see if it helps), but that's just a temporary measure. The real solutions would be presented after you find out what's going on. 

Good luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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July 9, 2020 1:01 pm  

Liza hang in there until that second appointment, go with a list of questions and with someone else if allowed 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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July 9, 2020 5:12 pm  

@veganostomy

Thanks Eric. My stoma nurse has actually seen the hernia. She wanted to wait to order a hernia belt until my wound is healed. 

In bed I have trouble getting comfortable in any position, but when I am experiencing one of these “flares”, trying to lie on my side, especially the left (the side the hernia is on) is extremely painful. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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SqueakyandLiza
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July 9, 2020 5:20 pm  

@john68

Thanks John. I got my prep instructions yesterday for the ileoscopy/colonoscopy and it was in the instructions that no one can come in the building with me but just drop me off and pick me up at a designated spot. 😕 I don’t know about the appointments, but it is probably the same. That is hard for me since my husband has gone to every appointment related to my Crohn’s/Ostomy with me since this all started 2 years ago. I definitely rely on him to remember all the details around my time in the hospital. That time is very fuzzy in my mind. Stupid Covid!!

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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tryghrr
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September 17, 2020 5:07 am  

tghsdfg


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