Living With Interstitial Cystitis In Malaysia.

Continue from Health And Farming 3, Endonmetristis And More.

Alice had been diagnosed with Interstitial Cystitis (Painful Bladder Syndrome). I did a search and there seems to be lots of support groups, all overseas, none in Malaysia.

After reading most of the sites, we found that diet plays an important role for IC patients. There are lots of variation, individual patient can tolerate certain / amount of food. The lists are mostly classified into IC friendly, Could Try and Food to avoid.

In Alice's case we found that chocolate (with alcohol) and white cooking wine cause immediate flare up . As she is still having phobia to the pain, we dare not even try. She sticks with the IC friendly list religiously.

Alice is only armed with

Elmiron, approved as a treatment for the relief of pain and discomfort associated with interstitial cystitis (IC), a chronic, progressive and debilitating urinary bladder disease afflicting primarily women. IC is characterized by severe bladder and pelvic pain and urinary frequency.

Xanax, used to treat anxiety disorders, panic disorders, and anxiety caused by depression. Addictive, and could cause withdrawal symptom. Comes in various dosage. To wean off later.

Laxapro, an antidepressant

Apo-Amitriptyline, an anti-depressant. It is also used to treat chronic pain and bed wetting.

Breathing exercise to relax.

Alice's condition improved and we got adventurous. We went for our first outing to Sunway Pyramid.
We went for tea at FullHouse Cafe. Alice bought a coupon via Living Social for only $7.00 per person. Had a fun and relax day at Sunway Pyramid.

As Alice is on the road to recovery, I took some time off and went to our farm in Sabah on the 19th til 24th June. She is cooping with some side effects on the above medication. A major one is constipation.She is eating a bunch of bananas daily. It didn't help much. Alice love to eat it raw. We later found out that eating raw bananas make constipation worse. Only ripe bananas helps.

While at home, I'm with Alice most of the time, to cheer her up and help her to normalize her life. She gets a good night's sleep most of the time as those medication kind of 'knock' her off nightly.We don't want her to fall back into a nervous breakdown. Help her with some daily chores, I'll try to finish before she wakes. We kind of like set things to be a routine.

Had a second outing (other than going to medical centers) to Renoma Cafe Gallery , also via Living Social. $47, afternoon tea for 2 with free flow of beverage. Alice had grew fond of shopping through these group purchase and she find it relaxing. Things are moving great and I find time to rest without having to worry about Alice. Me too is sleeping well at night.

There was just a major incident, while cooking as she accidentally dropped too much white cooking wine. This caused a flare up and took about 5 days to recover. This got us worried again. Also Elmiron had ran out as Dr. Loh only prescribed  it for a month's dosage.

Other minor flare up was due to Pepermint tea (too much I guess) and Chamomile Tea. Alice had been taking Chamomile & Pepermint tea to wean off her love for coffee. At one time we changed the Chamomile tea. Since the minor flare up and after a research on the internet, we realized that we had changed to Chamomile FLAVORED tea. So now we stick back with Twining's Pure Chamomile Tea.
Made with 100% pure camomile, naturally caffeine-free herbal tea.

A review with Dr. Loh is in early August. I then left for a short farm visit, 6th till 18th July, thinking that Alice is progressing smoothly.

While I was away, her condition deteriorated, she feels that the symptom is coming back. It got bad on the 14th. This send chills down her spine. Due to this Alice increased the dosage of  Apo-Amitriptyline to 4 tablets a day (still less than half the permissible maximum dosage) to keep her calm and sleep it off, it caused a side effect of major constipation, clumsiness and forgetfulness. Since I'm coming back on the 18th, Alice decided to wait. I didn't realize her condition was that bad even though I spoke with her over the phone constantly. She didn't communicate to me, I only realized when I reached home.

Made an appointment to see Dr. Loh on the 19th July. He prescribed 2 more months of Elmiron. Dr. Loh said that Elmiron may not be suitable for all patients and it's a very costly medication. Should be good after 2 month's usage. Told us that no need for review after 2 months if Alice is okay. Dr. Loh's clinic no longer have stock for Elmiron, gave us a prescription to buy at the Gleneagle's pharmacy. It cause Alice some anxiety as while at the pharmacy, our que number was skipped. Oh god, no Elmiron. After a few more numbers, we saw the pharmacist took out 2 bottles of Elmiron, Alice was so relived. Immediately took a tablet when we received it. Elmiron is sold at about USD $216 to USD $265 (RM $680 - RM $840) for a bottle of 100 capsule in the internet. Here in Kuala Lumpur, it's RM$ 1,200. I had tried our regular pharmacy near our house and found that it required special permit and prescription. Can't order for us. Requested help from our family physician, says it requires a specialist's prescription. Can't order for us.

Alice felt better after a short moment, so we guess it's partial psychological and partially chronic. Anyway as long as Alice is getting better it doesn't matter. The symptom is residing. Let's hope that Alice is getting better. For the next few days, the symptom started to subside.

 

Our adopted plant. We found it more than a month ago, abandoned at the stair way in a broken pot. The previous owner must had shifted. As Alice was feeling well that day we decided to adopt it. Had it pottered in a used pot, courtesy of my mum. Separated the cluster. After a month of care, there are new growth and it's starting to flower. No idea what plant it is. It also bring us hope and fulfillment.

27th July, we went to Gleneagles, no not for clinic visit, but to send a Thank you card to both Datuk Dr. Azis Yayha and Dr. Loh Chit Sin. Unfortunately both were not in.
 
Time for me to go off to our farm. Hopefully everything shall be well. Shall be back with Alice next month. Stay tune for her progress.

Amitriptyline belongs to a group of drugs called tricyclic antidepressants. Although they’re still used to treat anxiety and depression, they’re also now widely used at lower doses to help block the chronic (long-term) pain of some rheumatic conditions. The main aim of lower-dose amitriptyline is to relieve pain, relax muscles and improve sleep, but it may also help reduce any anxiety or depression resulting from the pain. Low-dose amitriptyline alone won’t be enough to treat severe depression. - See more at: http://www.arthritisresearchuk.org/arthritis-information/drugs/amitriptyline/what-it-is.aspx#sthash.ORXqW5ZB.dpuf

Amitriptyline belongs to a group of drugs called tricyclic antidepressants. Although they’re still used to treat anxiety and depression, they’re also now widely used at lower doses to help block the chronic (long-term) pain of some rheumatic conditions. The main aim of lower-dose amitriptyline is to relieve pain, relax muscles and improve sleep, but it may also help reduce any anxiety or depression resulting from the pain. Low-dose amitriptyline alone won’t be enough to treat severe depression. - See more at: http://www.arthritisresearchuk.org/arthritis-information/drugs/amitriptyline/what-it-is.aspx#sthash.ORXqW5ZB.dpuf