Skip to main content

I started on Flagyl and Cipro for pouchitis at the end of April. after being on the meds with no relief, one week later, I was hospitalized through the ER for severe pouchitis and dehydration. I was there for 5 days. The GI on call did a scope and found some Crohns like patches in my ileum. I was treated with IV prednisone, flagyl and cipro and sent home with a follow up at the Cleveland Clinic 2 months later. Dr.S didn't feel comfortable treating me since he doesn't see a lot of jpouches and felt that CC would be my best choice. I saw Dr. lashner and Dr Shen and they performed another scope. I was largely healed but still showed signs of acute pouchitis. They ruled out Crohns through biopsies. I was sent home with another round of cipro and flagyl. I was off these meds for less than a week and I'm back in the hospital this time i made the drive to CC. Im being treated with prednisone, cipro and flagyl.
Here are some of my questions:
Has anyone experienced a particularly bad flare of pouchitis? And could I be expereiencing just one episode or perhaps more of chronic pouchitis episode?
They've mentioned starting on Humira, but I think I remember reading somewhere that it is not effective on pouchitis. I had Remicade during my UC days, so is that out as far as treatment options?

Replies sorted oldest to newest

I was back in the hospital for another week. They did another scope and found more ulcerations and a sinus forming into a fistula since my scope less than 1 month ago. We're still waiting on the biopsies, but they are nearly positive that it is Crohns. They also checked my vitamin d level and I'm pretty deficient in that. I head back up to the clinic on the 29th to meet with Dr. lashner and discuss treatment. I'm currently on 40mg of prednisone and they had me discontinue antibiotics since they are not effective.
res
Rachael,
I'm glad you went to CC before messing around any longer where you were. I am sorry it now looks like crohns Frowner

I was super low on D a few years back and they gave me mega doses to bring it up. I took 10,000 units a day for a long time and still take 5,000. My Internist never took me to take those large of doses but my nutritionist did. Most folks don't need that much. Doctors are usually happy when you get into the normal range but my nutritionist said to get higher in the normal range. I'm at 62. The range is 40-80.

I know another gal that found out she had crohns after she got her j-pouch and had ulcers etc. She is on humira every other week and lives on the west coast. I don't know if she posts on here anymore but she is in a FB support group I'm in. PM me if you are on Facebook and interested in talking with her. I wish there was more I knew. I have been having pouchitis problems and issues with antibiotics - seems like nothing compared to your issues right now.
Take Care
TE Marie
My d level is at a whopping 12.2. I don't think they've ever checked that before. Also, my iron is at a 15. They have me taking 50,000 units of d once a week and 2,000 units daily. They want to continue that for at least 6 months and then check it again. I'm also taking 250 mg of ferrous sulfate to help bump up my iron.
My main issue right now is the spasms of the jpouch. It honestly feels like there is a tennis ball up there and the muscles are just spasming to get it out. It's constant pressure.
I'll send you a pm.
Thanks!
res
OMG, they had me take 100,000 a couple of times and my level was higher than yours. 2000 won't bring it up, unless you are outside in the sun soaking up the vitamin D in the sunshine and if you were you wouldn't be so low. Can you see an nutritionist who specializes in supplements? I'm taking 5000 a day and was taking 10000 until recently. My level is 62 and it was around 42 a year ago and that is around the bottom of normal. The top is 80.

Did they tell you to take vitamin C with the iron? It helps with absorption. My Internist had me on the Iron and C as well as the mega D doses. I don't know how C goes with Crohns, maybe it's a no no.

I hope the prednisone worked and you can taper ASAP, I hate that stuff. It works but I hate it long term. Confused
TE Marie
Res, I am having a bad case of pouchitis and have crohns. I was off of antibiotics after doing wheatgrass juicing and sprouts and vegie juicing but then got shingles and went to a holistic health facility in FL that put me on raw food for a week, was terrible for me, and I went down to 97lbs and started pouchitis again, still have it and am back on antibiotics. I am going to try to wean myself off them slowly but bhave to get a bit better. Peptobismol also helped which I alternated with antibiotics before. My Vit D used to be very low 26 and now I keep it at 75 as I also have lymphoma and it's very important for that to keep it high. Let me know if I can help , I see Dr Shen every 3 months for balloon dilitations for strictures and general check ups, he is GREAT.
C
clouseau,
It sounds like you have had a rough time. I hope you are better. What dose of D do you take daily to maintain your level of 75?

Shingles is a horrible thing to get! Both of my parents have had it and my doctor wanted me to get vaccinated. My insurance company wouldn't pay for it until I was 60 so I paid $225 myself. It was worth it for my peace of mind.

For those of you that have had chicken pox please consult with your physicians their opinion about you getting the shingles vaccination. Mine wrote the prescription and I took it to Walgreens and got the shot there.
TE Marie

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×