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Ulcerative Colitis
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Posted 12/7/2020 10:39 AM (GMT 0)
I have had uc for 30 years, 70 years old. Because of failing kidneys I have had to reduce my mesalamine dose to half on Doctors advice and this is probably the reason for this flare. This is a very painful one No blood yet, just a very painful feeling in my whole colon. A mesalamine enema two times a day gives a lot of relief. Walking around and trying to do normal activities make it so much more painful. If i sit and be still I have much less a pain. Does anyone else have this experience or symptoms? Tell me your story please! I am afraid and can not
go to hospital if I get worse. There are no hospital beds in my state due to Covid. I will have to cope with this at home. I have talked to my GI, all he has to offer is a scope in the hospital (which is not available anymore) or predinsone.
Posted 12/7/2020 11:01 AM (GMT 0)
I had a lot more pain this time around with my most recent flare. Have you been prescribed something like Dicyclomine? It is an antispasmodic that targets the gut. It helps me with pain. For me getting in a shallow bath of very warm water helps too. I hope you find some relief!
Posted 12/7/2020 1:07 PM (GMT 0)
I use librax, hyoscyamine, valium, tylenol heating pad and just being still. Would you please describe where your pain is and on a scale 1- 10 how bad. I feel mine is about a 6 or 7
Posted 12/7/2020 4:33 PM (GMT 0)
Hi...are you on oral mesalamine? And now nightly enemas? What dosages?
q
Posted 12/7/2020 5:08 PM (GMT 0)
UC veteran, your intense pain may be related to reducing mesalamine since you've been on it for a really long time. Whenever i've tried to reduce or eliminate mesalamine, the pain is intense even w/o a flare. You body will become dependent on most medications if taken for a long time. Also, since you are saying your kidneys have been failing, this may be a cause of pain as well.

You are already on a lot of pain medications. Some people report medical MJ helpful for pain if you want to add. try to use heating pad and distract yourself from the pain. Your doctor can also prescribe steroid enemas as well as an option. I would also take a fecal calproctecin stool test to check whether this is inflammation or your body having a reaction to medication change vs. kidneys.

We tend to always blame every pain on UC, but sometimes there are other factors at play. Do you have other clear flare symptoms in addition to pain?

Post Edited (Jane974) : 12/7/2020 11:34:26 AM (GMT-7)

Posted 12/7/2020 11:55 PM (GMT 0)
You have a good point about the pain being from my failing kidneys. I just had my Physical last month and get a kidney blood test to get a GFR and creatine level. So it could be anything. That my pain improves with mesalamine enemas make me believe it is UC
Posted 12/8/2020 12:07 AM (GMT 0)
I have been taking 4800 mg of mesalamine for 30 years and only 2 bad flares. Both ended up in the hospital and prednisone. The doctors think mesalamine had damaged my kidneys, stage 3b, so I have reduced it to 2400 mg. and 2 enemas when I need them, like this flare. I can't increase my oral mesalamine without more damage to my kidneys. It seems like a hopeless choice especially now during covid when I can't get a scope to see what is going on.
Posted 12/8/2020 2:09 AM (GMT 0)
Yes, mesalamine can damage kidneys esp. if you are over 65. You can still do a stool sample to check for colon inflammation (ask your GI to send a fecal calproctecin test). It's about 94% accurate, so not as good as a colonoscopy, but better than just guessing. Mine came back after 24 hours so there was minimal wait time and has been accurate for me. Pain on its own does not tell you much about the flare given your other issues. Are you having frequency, bleeding, urgency and other symptoms?

You can also consider biologics if mesalamine is no longer an option for you due to kidney issues, but don't know if they will consider biologics for you based on kidney issues. Surgery consult may be a good idea as well down the line given mesalamine intolerance.

Post Edited (Jane974) : 12/7/2020 7:12:05 PM (GMT-7)

Posted 12/8/2020 3:11 AM (GMT 0)
The way I see it you have four options. You can wait it out on your current regimen, travel out of state for a scope and a shot at a biologic, take prednisone, or perhaps take a shot at some alternative therapies. I'm sorry you are unwell with all of this going on. All of the choices are lousy.
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