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

Health And Farming 3, Endonmetristis And More.

Continue from Health And Farming 2, Endometritis.

Did a search on the recommended O&G specialist and Gleneagles Hospital KL via the internet. Decided to see another specialist, which I feel is more appropriate. Datuk Dr Abd. Aziz Yahya, he has a clinic in Prince Court Medical Center as well as Gleneagles Hospital (KL).

Manage to get an appointment on 18th May at his clinic in Gleneagles. As it's a Saturday, his clinic close at 1.00 pm. We went early in the morning as Alice's condition had turned very bad. The pain was so unbearable that she is loosing the will to fight on, she is hallucinating at night when the pain was too great. She sees her departed mum. We arrived in the morning and requested a wheel chair. His clinic is at second floor. I find it a bit difficult to send in a patient as I need to park the car which is quite far a way, the lift is extremely slow and too heavy traffic. As we enter his clinic, it has a very soothing effect, but unfortunately Alice was in too much pain also it got worst as there are some discharge at her Virginal. She was all in tears. The receptionist tried to keep us comfortable.

He saw us as soon as he could, as appointment was rather full that day. His first question after we started telling him Alice's problem was, who refer him to us and why him. I said that I did a search via the internet and feel that he could help us. He then made us calm down and ask us what happened. He then started to write down dates and events. He says that he knows the O&G  as he is a visiting consultant at Gleneagles. We showed him all the documents, images, reports and even medication. He requested a confirmation that the laparoscope was done before or after the MRI, we confirmed that it's after. He says usually they shall try to diagnose and find the problem, if can't then shall try to "rule out" method. After ruling out all possible medical condition, then only shall check the psychological factor.

Datuk Dr. Abd. Aziz then examined Alice. Found that the discharge is caused by vaginosis. This create an itch (very bad) and aggravated her condition. He went through the medications again and instructed us to stop the medication, except 1. He identified 2 antibiotic that is suppose to treat the same thing and said that Alice is already overloaded with antibiotics, which caused the vaginosis. Shall treat this over the weekend and we discussed our options. He sees a lot of things on the photographs and the MRI image (the same ones). He also made a remark that the imaging should be done before the laparosope and we might had been better off if we had made the decision to had a full hysterectomy rather than just removal of 2 of the Endometriotis. Alice then said that there were no discussion on this and no options were offered.

Datuk Dr. Abd. Aziz suggested us to do a full hysterectomy basing on the image, image report and photographs, as he can still see some growth from those image. Alice has no intention of giving birth anymore and she is close to menopause hence fertility is not an issue. His operating day is Tuesday and Thurday. For the hysterectomy, we have the option doing it the conventional way, bikini line (open), laparoscope or a robotic assisted one. The cost, the benefits are highlighted to us. Told us to think it over the weekend. Asked for permission to photocopy the imaging report and requested us to leave the imaging for him to study.

 His prescription is Diflucan and Lactacyd virginal wash. Come back on Monday, 20th May, the vaginosis should clear and shall proceed to the next problem.

19th night, 20th dawn, pain was too great, started to hallucinate again, have to do a emergency admitting. Had pain killer to stabilize Alice. During our stay at Gleneagles, IV and injections was done without much drama. I spoke with the nurses and was told that there are sizes on the IV needles. Also Alice's veins tends to "move". Datuk Dr. Abd. Aziz came in the morning, we confirmed that we do the robotic full hysterectomy. The vaginosis had cleared. One problem solved.

The Da Vinci Robot is available in Prince Court Medical Center. So off we move to Prince Court Medical Center. Had been to Prince Court before a few years ago as an outpatient. I like the environment at Prince Court, parking, space and not as crowded. We checked into a room and I guess all room has a Petronas Twin Tower view on 20th May.

Surgery was done on the 21st, afternoon and it lasted for about 1 1/2 hours. There were some feeling of pain when the anesthesia worn off, which is quite normal. Datuk informed that the precedure went smoothly. Alice was instructed to move a bit and have hot shower twice a day. As she is still in pain, she didn't move much, also we are not used to taking a early bath. Due to this, I think it created some problem as her tummy got bloated, due to the difference in pressure. Her stomach was pressurized while doing the surgery. A hot bath actually helped equalizing the pressure. So started taking 2 bath a day. Alice also develop constipation and it was quite serious and it irritates the bladder. A strong laxative took care of that. Alice was discharged on the 24th May as instructed to recuperate further at home. To be back in a week for a review and the laboratory report.

25th May mid night, the pain is back an is unbearable. Hallucinated again. Rushed Alice to Prince Court emergency department. Stabilized her with pain management. Rested for a few hours at the emergency department and was discharged when she felt better. To see Datuk Dr. Abd. Aziz in his clinic during office hours in the morning.

Alice managed to rest for a short while. I used these time to search the internet with the symtoms. I managed to zoom into a condition called Interstitial cystitis (IC). It is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain. Pain level is also amplified due to the infected neurons. This is also called painful bladder syndrome and can affect children and men but most of those affected are women. I made a print-out so that I can bring it along tomorrow.

25th May, Saturday, Datuk Dr. Abd. Aziz is having his clinic in Prince Court. We went there first thing in the morning. As Alice is still in pain, the staff let her use a bed at the laboratory room while we waited for Datuk. We had a discussion and before I can brougth up the interstitial cystitis issue, Datuk cut me off  by saying "please do not jump the gun". He said he had done his part, and that he had removed the diesese on his speciality so the next step is to have a urologist examnine Alice rule out all disease in that area, then a pychologist. Alice started to panic. Oh no, I remembered we had this sort of conversation during the initial specialist that asked us to go to the other one. I begged Datuk Dr. Abd. Aziz not to give up on Alice. He gave us a firm reassurance that he shall help us. At the moment, I can feel that his assurance came from his heart. As it was a Saturday, Alice got admitted and he made arrangement for us.

Later part of the day a urologist Dr.Loh Chit Sin, came to visit us. He is a visiting consultant at Prince Court Medical Center but he doesn't have a clinic there. He said that we'll have to go to Gleaneagle where he practice if we need his services. Alice was discharged on Sunday and we went home. We practically had sleepless night since this nightmare started.


27th May, Monday, again first thing in the morning we came to Dr. Loh's clinic. Datuk Dr. Abd. Aziz had already brief him on Alice's case. Again we told our experience again. He went through the imaging, imaging reports, blood test reports, urine test report, urine culture reports which I had file them in a file according to date. He had a frank discussion discussion with us, stating that Alice's case could be difficult, he can take it up on condition that we'll have to accept his decision on the diagnostic, of course he shall put in his best ability also everything shall be recorded and documented. He may not be able to cure Alice, but he's definitely sure that he can make Alice feel better. He shall also need to feedback to Datuk Dr. Abd. Aziz. We find that his frankness is unlike the initial 2 specialist that we had seen. We accepted. Dr. Loh then asked for the CD recording of the cystoscopy that was done by the initial specialist.We told him none was given, also the patient's card and records were pull back. We only have the official receipt. According to Dr. Loh, we must be given the recording. Since we don't have it and if we were to retrieve it, shall cost us some time, suggested that maybe he can re-do it if needed. He brief us on the procedure & treatment that he shall do with Alice. He shall do some diagnostic, pressurize the bladder check / inflate, enlarge the urinary tract, flush / clean the bladder. We confirmed and he started to organize. As Alice is still in pain, Dr. Loh was very helpful and booked the OT under emergency.

Procedure went smoothly and the OT personnel kept Alice comfortable, even with her phobia. There was no drama like in the first medical center where they can't successfully do an IV.As it was done under anesthesia, she don't feel anything. Procmisc procedure, Procendoscopic, Hydrostatic Distention of the bladder and Procdiagnostic Endoscopic examnination of the bladder was done.She was returned to the ward in the afternoon with 2 big bags of saline to flush her bladder. The day passed without much drama as Alice is a bit sedated and drowsy. 28th May, a bladder installation was done in the ward, and this was rather dramatic for Alice. Her bladder was filled with medication and she is suppose to hold the solution in her bladder, turning around over four quadrant and every quadrant is suppose to hold for a minimum of 15 minutes. This is to soak the bladder and create a coating. A recap, Alice feels pain in her bladder even with a residue of 60 cc of urine. This was the longest hour of our life. This elevated her anxiety and phobia. She feels very frighten as the thought of no cure and have to endure these pain for the rest of her life is unthinkable. Alice was discharged in the afternoon and Dr. Loh reemphasize that these shall make her better, but give it some time. He confirmed that Alice has a non-bacteria Interstitial cystitis. She was prescript with the medication Elmiron.

29th May, time to visit  Datuk Dr. Abd. Aziz for a review. The report is out and Datuk gave us a copy. He put a stamp and signature on it, unlike those 2 initial specialist, told us to keep it and emphasis the the disease is remove. Gave a pat on Alice. Remove the suture check the wounds. Ask her to rest. He said that we can see him if we have anymore problem. He note on the report, under diagnostic, Adenomyosis and leiomyoma. Alice had broken down and we requested his help to refer us to a psychiatrist for help. He help us make arrangement and sign us off.

We went down to 2nd floor to look for the psychiatrist department, there was none. Then a lady asked us if we need assistance, we said that we are looking for Dr. Zainal. Abdul Rahman, we were directed to Life Style Modification Center. Dr. Zainal couldn't do much as Alice is too frighten at the though of going to a medical center, that she is in a state of trembling. We had a short chat, Dr. Zainal pull out an orange color pill for Alice to calm her down. He was rather surprised when we told him that we requested for a psychiatrist. We went through our story again, but he kind of gave me 'the glance' that he wanted Alice to tell it. The pill worked and Alice had started to calm down. After hearing our story and checking with Datuk, he then did a prescription and ask us to go home. He gave us lots of reading material, some forms /questionnaire to fill up. Not to take the medication first, call him in the evening. In the evening he guided us on how to take the medication and another dosage before sleeping. Call him tomorrow morning. We had time that night to go through the reading materials and questionnaire as Alice was very much better. That night Alice had the best sleep since this episode started.

Called Dr. Zainal in the morning, feedback to him. He requested us to pop over as Alice is calm now. Made an appointment in the afternoon and we went over. Had a long chat, he went through the questionnaire. He also requested Alice to define Nervous breakdown. His opinion is that Alice is too traumatized with this episode due to the bad experience during the initial 2 specialist. We also talked about Alice halucination that her departed mum came and Alice requesting her departed mum to take her 'away'. He explained to us why and all that is in our mind. He then proceed to advise Alice on how to take and modify the dosage of Xanax, Lexapro and Apo amitriptyline. He feels that it shouldn't be too long for Alice to recover and suggested activities like Yoga, Tai-Chi and even Caligraphy. Taught Alice a breathing procedure to keep calm.

We were so relieved and we hope that we can quickly put this episode behind us. Finally, we could see a light at the end of the tunnel. Stay tune for Alice's progress, recovering, re-flare?