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Hello all,
I'm new to icama but not so new to IC unfortunately! i was diagnosed with it about 18 months ago when the urologist performed a cystoscopy. I was then put on instillations for about 12 weeks. At first i thought they were helping (or maybe because it was dressed up in that way) but then i decided i didn't want to continue with an invasive procedure. i have been on an IC smart diet and meds prescribed by the urologist ever since but have not seen much improvement. I guess the diet has helped but i feel like i am in a constant 'flare' because i have not had a day where i don't feel any burning when going to the loo. so my way of telling whether something sends me into a 'flare' is if the intensity of the burning increases.
At times i feel the IC is slowly getting worse because I'm getting more 'aches' or cramps in the bladder area than i used to. It could be down to the fact that something is constantly irritated (hence the burning) and is not being treated effectively. A large part may also be the sort of person i am - ANXIOUS! i am a born worrier :( i am always worried about not finding relief from the symptoms which must contribute to worsening of the condition and the fact that i am guilty of impatience - worst combo!
I'm now at a stage where I am absolutely tired of taking various meds with side effects and not much to show for it. Although i think one of them (vesicare) may have helped with frequency and urgency i just think it's a mask rather than a solution. SO i have decided to take this brave (or stupid) step to slowly come off the medicines and opt for alternative solutions.
I am seeing Dr Boaz in about 6 weeks to discuss treatment. Meanwhile i thought i'd give myself a 'headstart' by following diet list 1 on here instead of the one i have been doing (which has so many more things on it compared to list 1). i stopped the antibiotics that i was on for the past year or so (i had to take one a day to prevent UTIs) and instead started D-Mannose. I've also started taking probiotics. i guess i have changed too much in a short amount of time (stresses my impatience!!) which has definitely taken a toll on my body. i have very very little energy - probably because i eat almost nothing! no dairy, no wheat/gluten, no sugar and of course no acidic or spicy foods. Basically anything that has taste - i don't have!!! drop in energy definitely more since i started the new diet. on top of that i have the usual sore throat/cold/fever...grrrr not a great time for me :( :( :(
I have recently noticed stomach pain as well, near the belly button but more on the left side. The other day i had a really sharp pain that was stabbing through to my back. At one point i didn't want to breahe! Eventually the pain subsided. In light of this, i didn't take any medicines or supplements at all for a couple of days in order to 'rest' my body. Today I took a probiotic capsule early in the morning and couple of hours later a dmannose capsule and later experienced intense burning.
Another strange thing i've noticed is an ache in left rib. it'll come and go during the day but doesn't happen everyday. starting to think i am extremely paranoid!
I did not intend on writing such a long post but i couldn't help myself write and write, it does feel good to vent!! sorry if i'm not making sense! I'm beginning to feel really sorry for my family for putting up with such a depressed/miserable/defeated person :(
has anyone experienced anything similar? am i doing too much too soon...is my headstart not really a headstart?! Is it 'normal' to feel burning from dmannose or probiotic?
any advice, tips, words of encouragement is greatly appreciated!! thank you :)
Sanya
Sanya,
Sanya,
Welocome! I think you have come to the right place. If I were you I would stop all suplements and just continue with diet list 1 until you meet with Boaz. He will guide you with what you should be taking, you will be in good hands!
I agree with Christine. It's
I agree with Christine. It's better not to take anything, or just to take the medications that were helping you feel a little better until you see Boaz. Also, pay attention to the foods that might be irritating your bladder and don't eat those. Everyone is different and even some of the foods on List 1 can be irritating for some people. And maybe order some unscented shampoo, soap, etc. from Bomamed. Anything you put on your skin can be an irritant. Use all natural cleaning products and wear gloves. Don't let the products touch your skin.
Warm, moist heat is good for pain. Like a hot water bottle on your abdomen/bladder area or drinking warm water.
You are in the right place! Keep in touch!
hey Sanya- I know the feeling
hey Sanya- I know the feeling of being depressed/miserable/defeated but remember this- You are the opposite of defeated! You are embarking on a new path where you will no longer be following the Western protocol of symproms suppression/cover up. Nobody who was truly defeated would have the courage to do this! You are in the right place - hang in there.
Hi Sanya, I had been
Hi Sanya, I had been diagnosed with IC a year before seeing Boaz. I also had pain on the left side. (I never did figure out why that was.) I've been with Boaz now 7 months and am pain-free most days with a rare flare usually due to not following the diet perfectly. I was significantly better in 6 weeks. I am probably the most skeptical person I know but my 17-year-old daughter had found Bomamed online and begged me to go because she couldn't stand watching me in pain every day. Thank God for my daughter. One thing not to forget is the water you drink. Check the board for the best water in your region. In my first meeting with Boaz that was the thing he stressed the most. He also told me that if I ran out of something and couldn't take it all together then to not take anything at all until I got it refilled. So I agree with the others, it would probably be best to stay away from all supps until you see Boaz. I am also an anxious person. I found before seeing Boaz that exercise and stress made my symptoms worse. This was apparently due to the cortisol that is released during both so be careful of that as well. Hang in there, you only have six weeks until your healing begins and starting on the diet will definitely give you a head start. You are going to feel so encouraged after you meet with Boaz!
Sanya, I encourage you to go
Sanya, I encourage you to go through and read as many posts on this website as you can each day. There is sooooo much information in here that you will relate to. If you are like me your anxiety relaxes some when you have a game plan. So much of what you are feeling is directly related to the disease. You are NOT crazy or losing your mind!!!! Boaz will be able to help you heal but it is a slow process. We are all here for you. p.s. You will LOVE Boaz. He is so caring.
Thank you everyone! i feel
Thank you everyone! i feel better reading your comments :) I think it sounds like a good idea to stop taking dmannose. I've not completely stopped the conventional meds but I have cut down the dose for each one. I was thinking in terms of...what have I not stopped/cut down since the diagnosis that could potentially be irritating the bladder..the medicines came to mind (I feel like a detective!) so that's why I decided to start weaning off them. Hopefully time will show that's helped.
what are your opinions on probiotics? I'm almost certain I feel more burning with dmannose. Again, the decision to take probiotics came from me taking antibiotics every day. I wanted to restore some goodness.
I cannot wait to see Boaz and start treatment with someone who knows what they're doing! I'll be coming from UK so can anyone recommend good hotels nearby? I do wish uk had Matia and Boaz clones then we'd have many more positive ICers!
Oh something I didn't mention before was meditation/healing. I find comfort in that too, whether it does anything or not I'm not sure. Maybe that's something someone would like to give a go..
Sanya x
Sanya, I just saw Boaz in May
Sanya, I just saw Boaz in May for my first appt. with him. We stayed at the "Best Western International Royal Palace". 2529 S. Sepulveda Blvd., LA 310-477-9066 It's not fancy but very clean, very hospitable, and about 10 minutes from the doctor by cab. They also served breakfast each morning. They had boiled eggs so I ate those. There are also restaurants nearby. If you ask the staff at the front desk they were very helpful in getting us to the restaurants that could serve IC friendly foods. The cost was much more reasonable than some we had been referred to. Hope this helps.
Great, thanks. I will
Great, thanks. I will definitely look into that. After the appointment, do you then keep in touch via email?
Hi Sss7,
Hi Sss7,
You will have phone appt.'s and check in by e-mail between apptt.'s
Welcome! I am sure that you will never regret your decision.