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Extreme pain

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Ulcerative Colitis
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Posted 3/6/2020 10:23 PM (GMT 0)
How do I know when to eat again? Is being hungry a good sign or is it deceiving me?
Posted 3/6/2020 11:24 PM (GMT 0)
It’s definite a very good sign. I’d still drink broth or some soups. Is your abdomen still sore? I’d go very slowly to solid foods. Make sure things are moving first before you eat foods with lots of fiber.
Posted 3/6/2020 11:43 PM (GMT 0)
I guess I'm still sore. I don't know how I'm supposed to feel like. I still feel like there is something in there. And although I'm pooping it's always just a little. You said it's going to be a lot when it resolves. I haven't had that yet.
Posted 3/7/2020 12:00 AM (GMT 0)
Emptying more often, not quantity at once. Overall more output—the stuff that was held back during the blockage.

Is your abdomen still distended?
Posted 3/7/2020 1:58 AM (GMT 0)
No it has been flat most of the day today
Posted 3/7/2020 1:29 PM (GMT 0)
I will attempt to eat today
Posted 3/7/2020 1:52 PM (GMT 0)
Chew really well. Stay away from high-fiber foods
Posted 3/7/2020 7:24 PM (GMT 0)
Keith have you had stelara when you had your colon or is this a new drug that you tried once you had your J-pouch? I'm curious. I haven't tried entyvio and stelara yet. Humira and xeljenz failed and to remicade I have antibodies now

My HR department wants to put me on a leave of absence even though I told them I'll be back next week. They blocked my work account and I wanted to work from home today. Now I can't. I don't know what they were thinking.
Posted 3/7/2020 10:01 PM (GMT 0)
No, I tried antibiotics for 2.5 years and got tired of them. I kept getting yeast infections from them.

Then I tried Stelara offlable at the psoriasis dosage (that’s all the insurance would approve) and it didn’t work for me. I had to stop Stelara because I needed my hip replaced. I restarted Stelara at the crohns dosage and it’s worked great ever since. Probably going on 3 years at the crohns dosage.
Posted 3/8/2020 4:01 PM (GMT 0)
Andrina, do you need the biologics for the arthritis or for the GI inflammation, or for both? How is aza working for your arthritis? How did they know this was a blockage? Did they do a MRE or something similar? I think the first step is to find out exactly what's going on. Did they do a quick anuscope to check whether you're dealing with inflammation in your pouch? That's crazy about your HR people forcing you to go on a leave if you didn't agree to it. Have you contacted them directly to ask what's going on?

Sara, I don't take pain pills in general but there's no reason someone with a jpouch couldn't take them. On the other hand, it's not a good solution here really because the pain is likely caused by pouchitis or something functional that needs to be treated/corrected. Opioids would only provide short-term relief. She needs a long-term solution.
Posted 3/8/2020 5:45 PM (GMT 0)
I see -- thank you!

Andrina, how are you today?
Posted 3/8/2020 8:08 PM (GMT 0)
My arthritis is currently under control with aza. He felt my stomach and told me it was a blockage. I also went to the ER on January 31st and had a picture taken but they couldn't tell me if it was a blockage or not. So they sent me home. He read the report and told me I had a blockage and inflammation. My HR called me and I told them I'll be back next week yet they put me on leave regardless.

Today in bloated again but in no pain. I'm using the bathroom. I haven't been hungry yet.
Posted 3/8/2020 10:23 PM (GMT 0)
Adriana,

I think that you should have an MRI because that is the only way they can see adhesions. If you have adhesions they could be causing blockages. My GI said when I went for an MRI that they are not always conclusive because you could move a certain way and it is hidden from the MRI.

It’s still probably best to get checked out (x-rays won’t show it)
Posted 3/8/2020 11:15 PM (GMT 0)
I will put that on my list to ask him for Monday
Posted 3/9/2020 12:12 AM (GMT 0)
I would also inquire about adhesions simply because this has been an issue for so long. Usually, a blockage would clear, or require treatment, in order to be cleared. Blockage means something is blocking. Once the block is cleared, you should get a break.
Posted 3/9/2020 2:02 AM (GMT 0)
Adhesions and constant inflammation
Posted 3/9/2020 2:16 AM (GMT 0)
Andrina,

I really believe that if your pouch was constructed properly that once you get properly medicated and any minor stuff fixed (if you have adhesions or stitchers) that your life will greatly improve.

I took my dose of Stelara earlier this week. I went for a 4 hour drive in the country today after eating and drink a bunch at my parents last night for my father’s birthday. I’m going to empty my pouch for the 3rd and final time today - without any urgency.

Good luck tomorrow. I think it’s really good that you are bringing notes and questions you want to ask the GI. I’d also make a summary of all the things that you’ve tried, symptoms, concerns, etc going all the way back to your surgeries.
Posted 3/9/2020 2:47 AM (GMT 0)
I'm in pain again I think I ate too much yesterday. I'm still pooping from yesterday and now I'm in pain. Not even the prune juice is helping
Posted 3/9/2020 2:48 AM (GMT 0)
Im glad you're not in pain anymore. Hope your appointment goes well. I'm glad Keith and nssg are here to provide firsthand advice.
Posted 3/9/2020 2:50 AM (GMT 0)
No I'm in pain again
Posted 3/9/2020 4:48 AM (GMT 0)
sad Let us know what the doctor says. Hopefully he can help.
Posted 3/9/2020 2:17 PM (GMT 0)
Keith, what are good foods I can start myself with after the blockage? I need ideas because it didn't go well after the first blockage. I got a second right after.
Posted 3/9/2020 2:32 PM (GMT 0)
Foods easy digestible and limited fiber. I'd probably start with soups and toasts -- maybe eggs, chicken, and fish for protein.
Posted 3/9/2020 2:35 PM (GMT 0)
rices and pasta's can be binding agents. My surgeon recommended those when I had really high output from my loop ostomy.

Your GI probably has a sheet that they can give you with recommendations on what to eat. My GI's office has a IBD dietitian on staff.
Posted 3/9/2020 2:38 PM (GMT 0)
I tried one and they don't know anything about colitis. She recommended whole grain and I told her that was a big no no. I didn't go back.
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