I visited my GI doctor to see how the pouchitis was fairing. I had been on Cipro and VSL#3DS for approx. 6 months. We went over my current symptoms. It's a good thing she asks all sorts of questions because half the time I forget what can be related to IBD. She asked how I was feeling overall which is good though a little fatigued. She asked if I had changed anything recently, and I told her about my 70-80% gluten free diet and how it has helped thicken up my stools. She asked how often I went to the bathroom. My response of 10x per day with 1-2 being overnight didn't make her too happy, but she wasn't unhappy with it either. We went over the over the counter meds I take such as Pepto and GasX and how they help. We also discussed my joint pain and if that's related to the IBD or Cipro. I have been having pain in my ankles, knees, and back mostly in the morning but at times in the evening as well. It is believed to be caused by the IBD, but we can't rule out the Cipro because of the side effect it has on tendons. After a quick feel of the belly (with a little tenderness in the lower right), the exam was done.
Now it's time to make a new plan. She came back a bit later. I guess she had some research to do. The new plan is I will begin Entocort 3x per day to replace the Cipro. Entocort is a topical steroid for the gut. It doesn't have as many side effects as say Prednisone, but still not a great drug to be on. I am off of Cipro for some time in case by body was reacting to it and so that I do not build a resistance to it. I will continue with the VSL#3DS twice a day. Because I have had success with gluten free, I am being tested for celiac disease. I'm surprised I have never been tested for it before. I will also have my blood sugars tested along with protein levels that are increased with inflammation.
My next appointment is in June when I go in for my next scope. June will mark my third scope in less than a year. I feel like I have yet to leave the life of Ulcerative Colitis. I'm having just as many procedures as before. The good news is I can make it to each of my follow-ups this year without having to go in before the appointment is due.
You have a great attitude. I know how you feel as I still feel bad 14 months after take down. I've got cuffitis but think I have pouchitis. They call it cuffitis but it is UC as it's in the part of the rectum they left.
ReplyDeleteDo you take VSL#3DS twice a day or regular VSL#3 twice a day? I'm on DS and hope it's helping you.
Thanks for the update.
I had cuffitis shortly after takedown and a few minor flares after. It is not fun.
ReplyDeleteI take VSL#3DS (prescription) twice a day. I do find it helps thicken things up. I don't know if it's helping with the pouchitis. My GI is optomistic that it is and once I can get in remission (she still thinks I can get remission), the VSL#3DS will keep me in remission.
Good luck with your battle. We had our takedown around the same time. I've been feeling a bit discouraged, but I try not to let it bother me. I can't really change what is happening, so it's best to put one foot in front of the other and keep on moving forward.
I have been reading over your blog now that I am home from work. My surgery was 7/91 with takedown in 9/91. I learned almost right away that taking using metamucil & taking imodium would help me have a more "normal" stool along with decreasing the frequency. 20+ years later I still take the 1 tbsp dose of metamucil with a glass of water twice a day. Initially, since I was having like 20 stools a day I took 3 imodium capsules every 6 hrs. Now I take 2 capsules at bedtime to decrease the night stools and sometimes 1 or 2 capsules during the day especially if eating a very gassy food like onion rings. If I am having any pain that might indicate an obstruction I wouldn't take the imodium. My life has been pretty good even with the occasion pouchitis until just recently where the pouchits seems more chronic though it is probably my fault for not calling the MD sooner to get put on the Cipro. I was even able to go to China for a month with my siblings in 2010. I was worried that I would have problems nut did ok as I watched what I was being served.
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