diary of an inflamed bladder

Wednesday 12 October 2011

Hello,

Here I am after many months of not bothering to post! It's very bad of me but it just turned into a cycle of doom really as I didn't have the time or the energy to post due to studies and illness of a close family relative. Then I felt it had been such a long time that I wasn't sure where to begin....So I am back and I am going to continue writing as I always wanted to put my story out there to try and help others.

The reason I am on here now is because I recieved an email from another girl of a similar age and her email inspired me to get back on here and write! (If you are reading this then please email me to isabel.dolman@yahoo.com and I will get back to you personally, currently it says you have emailed from an anoymous email address so I can't reply).

So anyway the other day was my 23rd birthday and I had a wonderful time, I even ate cake and drank acohol! These things dont sound like something that someone on a restricted diet should be doing! But I am very careful, all of my cake recipes are from this website http://www.elanaspantry.com/ and I only drink rum and orange juice/soda water (rum is made from sugar cane and does not have any weird additives or a grain base like most other spirits). Having said that I rarely eat a diet high in sweet things and I only drink very occasionally. I did spend a good 9months being very very careful! I am still mainlining the probiotics (natren megadophilus dairy powder 1 tsp in water before bed). Despite the above I am still very careful with my diet and lifestyle and I do take these things very seriously.

There are lots of things I still do...

I have bowen therapy when I feel I need it
I see a pelvic floor physiotherapist
I do not use any chemicals on my skin, all of my body products are 100% natural and I make sure they don't contain soy or gluten (I highly recomend green people, faith in nature and natura care, then just plain coconut oil is amazing as a moisturiser)
I drink plenty of water, coconut water, peppermint tea, nettle tea and lemon in warm water.
I make sure that my diet consists of plenty of variety but do not eat any potato, wheat, barley, oats, rye or soy, all of the above give me terrible bladder symptoms (a book by Wendy Cohan called 'The Better Bladder Book' outlines the link between gluten intolerance and bladder problems)
I avoid as many additives as possible and had a completely additive free diet for at least 6months. When being totally gluten and soya free it is really important to check and double check packages for things, dextrose is a major culprit and used to cause me alot of problems before I realised it was a sugar derived from wheat (often on the outside of cured meats like ham and salami). E numbers are often derived from soy, so are lecithines (found in chocolate and chewing gum among other things).
I avoid coffee and tea (unless its herbal tea), I only eat goat and sheeps cheese/milk. I get plenty of rice, green veggies, carrots, sweet potato, fruit and lots of meat. Without many carbs or much sugar in my diet I started eating alot of meat, not something I'd ever really done as I was pretty much nearly a veggi. I had also been advised that plenty of meat with my condition was actually a very good idea because the animals fats can heal the gut lining.

All of these things have made the world of difference to my quality of life. I can go out now without needing to pee every 5mins, I'm not in agonising pain, I can jog, I can eat out in a restaurant so long as I make it really clear what I can and can't eat. I can have sex with my boyfriend without feeling like my bladder is being pummled. I can sleep in a normal position. I can go on a bus without my whole lower belly feeling like its about to burst. I work part time, I cycle, I enjoy a fairly relaxed pace of life and I try to keep stress levels low. I do find the stress thing hard though, I think I am a fairly anxious type (especially since I got ill), although I don't think that defines who I am. Sleep is a majorly important part of healing and I think sometimes I don't give my body the rest it really needs. I still have plenty to work on and I still don't count myself and fully healed, but I don't think that place is too far off! And if I could live the rest of my life at the stage of health I am at right now I would be happy.

I really want other people to benefit from my experiences. I really want to answer a wealth of questions, to give a positive example of how much you can change your own life when you've been told you have no other choice but to take pain killers, antibiotics and antidepressants to try and cope. I always felt there must be something else I could do and I managed to find that path, mostly alone, but also with help from friends, family, other IC patients and various holistic healers. No one out there could give me an answer and no one could tell me exactly what I needed to do, it was by sheer perseverance that I managed to get to where I am now, I wouldn't give up and neither should you.

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What is Interstitial Cystitis?

Interstitial Cystitis is a condition which can be suffered by men, women and children, however most of the recognised sufferers are women.
It is a higly painful and debilitating conditon of which the symptoms are - urgency to urinate, pain and frequency of urination. Often the sufferer will have sudden urges to urinate, or even a constant urge to urinate which does not subside. Pain can be felt before, during or after urination, or all of the time - it can be in the urethra, bladder or in the whole abdominal area and is often compared to burning or pressure. Frequency is also a terrible problem, in some bad cases people can urinate up to around 100 times in a 24hr period. Frequency can make things very difficult at night because the sufferer must get up to go to the loo and this interrupts sleep leaving them exhausted and without any deep sleep (RAM) where people heal and repair.
Some people may have some but not all of the symptoms, other may have all of the symptoms listed and more. Other symptoms can include tiny white floating bits in the urine, suspensions in the urine, dust like sediment in the urine, dark and/or smelly urine (with no infection present), pain which is worse during menstruation/ovulation.
Interstitial Cystitis can often be misdiagnosed or not diagnosed at all...many women go through months or even years of taking course upon course of antibiotics for a urine infection that isn't there. Its very important to get a urine sample sent off by your GP to the lab for further investigation. Children, teenagers and young adults are often told they cannot have IC because they are too young, even when tests and symptoms show that they do, this is down to old fashioned UK regulations around diagnosis of the disease. Men are often told they have prostate problems rather than a bladder problem and this misdiagnosis is very problematic because they cannot attempt to improve their pain with the wrong diagnosis especially when they may never have heard of IC to suspect it for themselves. This is why much more information needs to be put out there for people to understand what they may have and take it from there in the most suitable way for the individual.
To get a diagnosis in the UK a person must undergo invasive tests, including (some uros do only 1 others do all):
cystoscopy (where a camera is inserted into the bladder via the urethra)
biopspy (a sample of the tissue of the bladder lining is taken for investigation)
distension of the bladder (the bladder if filled with fluid whilst the patient is in most cases under general anesthetic, the cytoscope camera then is used to see if there are lesions or tiny hemorrhages in the wall of the bladder as it is stretched by the fluid).
However in America patients are often diagnosed by symptoms alone and treated accordingly.
Many pain treatments are available and often patients are offered anti-depressants as well. Pain treatments can take months to come into play (alot of waiting in pain can occur), or they can mask the issue slightly but not fully. Some people are also prescribed rolling courses of antibiotics. There are also things like bladder and urethral stretches used. But none of these treatments offers a cure they are just ways in which some people have found relief, whilst others have had a worstening of symptoms.