IC Worsening and Severe Mini-Flares

[Pucca]

Has anyone had these? After a couple years of my IC calming down enough to be tolerable, I have gradually gotten worse over the last 2 months. Now I am having sudden flares which basically involve one or two trips to the bathroom before settling down. The weird thing is that during these minis, I have a lot more urine than what I normally void, and it's a good flow. Then after the "attack", it's back to small amounts of urine and being able to go longer, like maybe an hour. I've been getting instills, which normally help me whenever I feel like I'm worsening, but in the last two months they haven't helped. I do get urinary retention from them, but usually that wears off and then I feel better. I can't find a reason for the sudden flares - I stick with the IC diet and have only been eating foods that I have been able to eat all this time. Is it possible for an IC bladder to suddenly not tolerate something that it could tolerate before? I had two of these attacks yesterday. One came shortly after lunch and the other came shortly after dinner. The only thing I see that both meals had in common was brown rice in some form, salt, and sugar. I have in the last few weeks given up strenuous exercise, thinking that was causing it, so it can't be from that either. I am scared and not coping with this situation very well.

[ICNDonna]

One thing you might try is to keep a detailed diary, listing everything that goes in your mouth, activity levels, frequency, etc. --- you might be able to identify a trigger that way.

Donna

[Pucca]

Maybe it was the bottled water

At the last IC support group meeting I went to, someone mentioned bottled waters, how some are actually acidic. Someone also mentioned Deer Park, which is what I've been drinking for the last two years. I drank it because it is often listed as alkaline. But at the meeting, someone said that Deer Park bottles its water from more than one source, and that if the primary spring (which I think is called Deer Park) is not the only one on the label, then it is acidic. At the time I thought I'd been drinking the "right" kind, and my symptoms hadn't gotten to this. But after another flare-up this morning, I took a look, and sure enough, I have the acidic kind. I tested it with a pH strip to make sure. I've been buying these in the 24 packs every time they go on sale -- I wonder how long I've been drinking acidic water. I know that this might not be the only cause of my recent flares but I hope this is the main one, since it's easy enough to correct. Hopefully I'll be on the way to improvement now. Donna -- yes I do need to keep a detailed diary of everything I ingest; I was doing this quite some time ago but fell off the wagon as I started feeling better. Thanks.

[krs72]

You may want to get checked for a UTI. My bladder really acted up and I went on May 17 to the doctors. The bladder and vv pain was awful - out of nowhere. They finally let me know TODAY that my urine tested positive!!! I was so angry after I found out the results had been in for a week before anyone called me. So it's time to find a new PC.

[Pucca]

Krs72 - that's awful! I would definitely look for another doctor.

My urine was checked last Tuesday and it was okay. I had another flare-up yesterday at bedtime, and this morning was bad. Around lunchtime, started feeling better. I have another instill scheduled for Thursday and will most likely speak to the PA, who wants me to do another hydrodistension. The anxiety on top of everything else is awful, so I'm going to deal with that too. I can get free counseling through my employer so I'll take advantage of that. My nerves are shot.

[Pucca]

Update

Just wanted to say that things are improving. I do suspect the water played a part. But also, last week at my instill the PA did it instead of the usual technician. She could not let go of the catheter without my uretha pushing it out, and she said I had pretty bad "hypertonicity" - my muscles are really, really tight. She sent me off to see a physical therapist, and I'm hoping the p.t. will help. I haven't had a session yet, just an exam and a lengthy discussion. Maybe my muscle tone was contributing to my misery.

Thanks everyone for your suggestions!

[earthlady]

I had similar mini attacks at one time that felt like my bladder would go crazy with spasms and the frequency was terrible. Then all of a sudden it would stop and everything was fine. I was also diagnosed with pelvic floor hypertonicity and went to pt for two months for internal myofascial release treatments. It did help me but I don't think the drs. ever came to an agreement as to whether the pelvic floor spasms were causing my bladder problems or if the bladder problems were causing the pelvic floor problems. Either way I was treated for both at the same time.

[Pucca]

Earthlady, I asked my PT yesterday if the hypertonicity caused the flares, or vice versa, and she kind of sidestepped the question. I guess they don't know. I have that Dr. Moldwin book on IC and it does say in there that it tends to be part of a vicious cycle. I still wonder if my kettlebell workouts, which I love, contributed to thiis situation. I haven't done any for about a month, and I'm going to hold off until the PT discusses my exercise options, which she is supposed to do at some point. Thanks for your input; it's good to know someone else who went through these things and got better.