Hi I am new here and need help!

[JET3539]

Hello everyone, I am having a tough time and wish there was a IC support group here but there isn't and not closeby that I am aware of. I have IC and Multiple chem sensitivies. I was diagnosed in my late 20's and had remission with treatment of antibiotics for Pelvic infect. After that I never really considered myself with the diagnosis. I had a few UTI's but nothing much till about 10 years later, when I got MCS and CFS. It was just urgency off and on so was more focused on healing the other two things. After 14 years, I recovered completely from all using alternative /energetic medicine. About 5 years ago round menopause, bladder sympt started to return, urgency and freq. 1 year ago started having pain and PFD. MCS returned 5 months ago. 2 months ago started Elavil and atarax and valium suppos. started IC diet 5 months ago and have practically nothing I can eat without pain/urgency. I loose tolerance after about 3 times with something that is good to start with. I am now having bladder pain with the Elavil and Atarax and hardley nothing to eat. I have also been going through processing memories of sexual rapes incest from childhood, although i feel that is mainly behind me now.
I practically blackout at the thought of instillations and don't feel I have many options. I have worked with wendy cohan from the Better Bladder Book, and looked into my adrenal function but diet wise I am up a creek. My naturopath doesn'tknow what to do for me as I react to all supplements.

Currently:
elavil at nite 15-20 mg think I cant tolerate now
atarax at nite 10 mg think I cant tolerate now
Valium supp at nite 10 mg
Lortab prn for pain
Valium oral for panic attacks - severe anxiety rarely use

Cal citrate and Mag citrate
Pancreatin for help digest food

Tried Desert Harv ALoe x 2 months Don't see anything

with having the MCS, I know there is a chemical overload in the body, but can't detox cause of my bladder. Drugs are chemicals too so I don't know if I can tolerate them for long.

Please if anyoe can help i would appreciate it, especially has anyone lost the ability to tolerate all foods? Have appt Monday with my urogynocologist PA.

[kaperino]

Jet,

I have no real words of wisdom, having been newly diagnosed myself in March. Had severe pain , urgency and frequency was incredible. Food was not going down and as soon as I had a few bites my stomach would cramp and burn. The IC was my major complaint along with the burning stabbing pins and needles the urethra was producing. So I treated the stomach after instillations after relief from the bladder pain. It was then I even recognized it as an issue, and used prevacid. With your aggravated conditions, I would not know if you could tolerate it. But I wanted to answer you, and off my sincere sympathy and hope for your recovery. Try not to be overcome, as you have shared some hard mitigating factors that you must work with every day. I am encouraged by your post. Thank you for telling your story!

[ICNDonna]

One thing you might try is to stop all supplments for a while, then start again, one at a time --- it could be something like calcium citrate is a problem for you.

Are you working from the IC diet list? There's a printable list at the link in my signature below. It's the latest and most complete list available.

You might want to consider giving instillations a try. Many of us have achieved a great deal of relief with them --- and lost of ICers do them at home, which can be much more comfortable than having someone else do them. If you opt to go that route, be sure to ask for the smallest catheter available.

Sending healing thoughts,
Donna

[JET3539]

Thank you Donna,

Yes I did go from the IC list I react to everything within one or two times or on the first time. I elimainated all my supplements, and the cal and mag are new and I tested and they are ok.

Do you do the instillations? I have no problems usually with my urethra and seem sensitive to alot of meds, I am worried I will irritate my urethra and also open myself to infection.

I live alone, and with my history, and now with the MCS and CFS back, I don't know if I can handle meds like those.

Also, usually with chemical sensitives there is a toxic overload in the body, and one has to detox, I did that in the past before the bladder was severe, and it helped, how can one detox with the bladder like this?

Do you know if there are clinics or places like that out there for people with IC and MCS?
Thanks for your help.

[JET3539]

Thank you, and your sweet words. How is the Aloe working for you? Do the instillations really work for you? May I ask your age and if you are single or have a family, I mean do you have alot of support? I live alone and quit working in Feb. so depression and anxiety can be rough. Sending prayers to you also.

[ICNDonna]

In my 36 years with IC, I have had a lot of instillations --- I also learned to do them myself and did them at home for several years. Thankfully, I am doing very well now with diet, drinking adequate water, and occasional antispasmodics if I feel irritation.

I haven't really gone the supplement route since very early in my IC when I was trying everything anybody recommended. The only effect this had was on my wallet and I spent a lot of money on things that ended up in the trash.

The only alternatives I have used successfully are Prelief and CystaQ.

Donna

[kaperino]

Jet,

Stopped the aloe the other day, as I did read that taking dessert aloe may not be good to take with Elmiron? So much is grey area with IC. My Dr's PA said it would be fine to take so I did take it along with the Elmiron and instills.

During the five weeks of instills, I used aloe from the plant on the vulva and my vulvar pain has diminished. I plan on going back on the dessert aloe after the six month mark with the Elmiron..that is if I can get more. We have been out here but I managed to get a three month supply right at the two month mark. I am now four months on it and am having results combined with the PT and strictly following the diet.

I made a post about my journey so far. You can click on my name maybe and see. I am 56. Have two children, 35 and 22. We own our own business, and I have just now taken time off for two weeks as I am having rectocele repair. My youngest is home this summer some from college. He works closer to us than the college. I am married and this year would mark 25 years come in December....mybhusband is beginning to understand. My kids not so much. My husband has taken on some life maintainence tasks with me, that had never done before. I am having some support, but no one really knows the full spectrum of emotions and amount of pain as a fellow patient. So here we are in cyber space, doing what humans need to do, and that is connect on a sincere level... I truly hope that in some way, my words serve to help you. Kathie