Need advice on Antibiotics and when to call for help

[Suby]

Hi All-- I desperately need advice. My background: CD for 4 decades, one surgery (small bowel resection) in 1999. I've been on Remicade and Humira (all a bunch off years ago). Currently taking Budenoside and 6mp. It helped for a little while, but then the awful pain in my right side came back. Started taking Xifaxin bc in the past, my former doctor (sadly, he passed away) put me on antibiotics for SIBO (blind loop after the surgery).The Xifaxin seemed to work for a week, then it didn't work anymore. I switched to Flagyl and that worked for about a week, and then a few days ago, it stopped working. (250mg 4x a day.). My new doctor is hard to get in touch with. Although he convinced me to go on Entyvio, I'm waiting for insurance to authorize. Meanwhile, pain is getting worse, it's Saturday, I'm nauseous (possibly from the meds), stuck gas, hardly any diarrhea , afraid to eat, and pain meds do nothing for me. Any suggestions? I have more Xifaxin and am considering taking that in addition to the Flagyl. Considering also going to an ER but don't know if I can handle that.

 

[cmack]

Hi Suby,

Welcome! If you think you need to go to the ER it usually means it is time to go. Don't try to tough it out, these things can go sideways in a hurry. Better to be on the safe side. Keep us updated.


Welcome again, best wishes,

cmack

 

[ronroush7]

Agree with cmack.

 

[Suby]

Thanks to both of you. A little better after some gas was passed, but it was a tough night.i think it's adhesions from past surgery and some inflammation, but they hardly ever see anything on imaging. I think if the flagyl isn't working than it must not be sibo.

 

[cmack]

I'm glad you are OK. Keep a close eye on your health.

 

[Suby]

I spoke to a P.A. from my doctor's office who said to stay on fluids today and go to the e.r. if the pain gets any worse, I vomit, or my belly distends. And she called in a nausea medicine. the pain is still there and will probably get worse later today. Im slightly less nauseous and belly isn't distended but the noises coming from there are really loud. I've never had nauseousness before and wondering if a partial blockage can happen without the distention and vomiting. Also, in the last few years when I felt like this painwise, CT scans showed no blockage and it was suggested that it was adhesions. They can't see that in a ct scan? Thanks so much for your help.

 

[cmack]

Hi Suby,

How are you?

 

[Suby]

hi, thanks for asking. Now on a dose of prednisone and sticking to very mushy foods. I don't think the dose is terribly high, started at 40for 2 weeks then titrating down. But it's been a while since I've been on it at all, so although it's brought the pain level down to about a 6 out of ten, down from 9-10, I'm exhausted but can't sleep. Not even speedy, just can't sleep, and yes, moody. The trade off I guess . I challenged my doc bc At first I didn't want to take entyvio. Now I'll take anything and the insurance company is balking. So still,pain, but less, still diarrhea, but less. Also no sleep and a dose of depression.

I do appreciate your checking up. And I hope you are doing ok, or close to it.

 

[cmack]

Hi Suby,

I'm glad to hear from you. I'm not too bad thanks. I wish the pain would get better for you so you could at least get some rest. I think you might need stronger painkillers. Are you on anything for pain?


Wishing you the very best,

cmack

 

[Suby]

Trying to find a pain management dr. Is difficult. Most seem to deal with musculoskeletal pain. I have some oxycodone from a former doctor (prescription) that is a few years old, but it doesn't really help, and makes me a bit jittery.i tried gabapentin and medical marijuana, but they don't help, although the Med marijuana can at least distract me. If you have any medicine recommendations for this sort of pain, I'd love to hear. Also, it just occurred to me that maybe I should be taking the pred in the morning, not at night. Not sure how to do the switch over.

 

[cmack]

Hi Suby,

I have had flexiril in the past for muscle spasm. Not sure about the pred as I have not taken it. The flexeril helps my back spasms, You can only take it for about three days if it is serious pain. It does work.

 

[Layla]

Yes I always take Pred in the morning or even in 2 separate doses. To do the switch you coud take your last evening dose a bit early, then do a half dose the next morning and the other half early evening. Then the next day the whole dose in the morning. I've done it that way before but as I'm not medically trained it may pay to ask the nurse or GI to be sure.
HTH.

 

[Suby]

Regarding Flexiril. that's a great idea. I had it for muscle spasms too. It helps me sleep better than a lot of things. A doctor might be more inclined to give me that than anything else.

 

[cmack]

How are you? Did anything happen?

 

[Suby]

Hi, so I ended up on prednisone and it finally started helping. Still eating very soft foods and had my first entyvio infusion. So I'm hoping for the best. Also got some painkillers so I can sleep, which is very helpful. Thanks for asking.

 

[cmack]

Hi Suby

I do care about you. Keep us updated. For sure. Apparently pred makes you a bit crazy, so beware. Just try hard to be nice I guess.

All my best,

cmack

 

[Suby]

Yes, prednisone has been difficult. Just when your body needs more rest, it doesn't let you sleep. And the mood swings...I'm down to 20mg which is easier to handle. I had forgotten how bad prednisone made me feel because it had been a long time since I've been on it. My former doctor, who passed away, HATED steroids and said it caused Crohn's head (or some term like that) meaning it made Crohnie's crazy. I think it affects me worse because I'm older now. I meant to ask how you are feeling. I hope OK.

 

[cmack]

Hi Suby,

I'm not too bad thanks. I was outside doing some yard work for a few hours. The fresh air was nice. I hope you keep improving.