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The Element of Freedom

Bio:

I am from Kathmandu, Nepal but am currently staying in Doha.  I am 32 and a mother of a 15 month old baby, I’m staying home from a long time due to Ulcerative colitis.  I love to travel.

Symptoms:

Extreme fatigue,Flare-up with blood in stools,stomach cramps,joint and muscle pain,lower back pain.

My Story:

HeIlo friends,I had a pretty normal life but i had eating disorders and was in College.I used to get fevers ,stomach cramps and went to a handful of doctors they thought it was amoebiasis and gave me anti-biotics.After a year of getting ill i had severe pain and cramps i was referred to Gastroenterologist and diagnosed with UC.The strange thing is i never noticed blood in my stool.Only the color of stools were blackish.In all the 11 years of having UC i never had a normal life.I had extreme fatigue due to which daily activities became so difficult to do.I stayed home after countless trials to complete my engineering.In the first 5 years of having UC i had flares once a year which lasted about 1 month and it took 2-3 months to recover.I was hospitalized each time and given IV steriods,anti-biotics,Prednisolone and hydrocortisone enemas.I used to feel extremely weak.
In the next 3 years i had flares 2-3 times a year and all i used were Hydrocortisone enemas at night for about 15 days or a week depending upon the nature of flare-up.I would get well with this and was never hospitalized.  But i want to mention here that the food i was eating was mostly carbohydrates-rice.pasta,potato,chicken soup(clear),egg whites,chicken meat,very few kinds of well cooked vegetables and no fruit.The only fruit i ate were banana or strawberries(smoothies and occasionally).  Whether i was in remission i was eating the same type of food and during a flare it was even less than that.For the last 2 years and few months i was pregnant for the first year 2010 and that time i could tolerate many fruits,vegetables,in general i was eating better and had a flare only once which was taken care with enema.But after delivery the story was different altogether.I had a huge flare right after the birth of my baby.i had to use Prednisolone steroid along with enemas to control it.It lasted for about 2 months and then i was fine until a worst flare hit me during Jan of 2012.The second one post delivery.It has been so bad that after 5 months of medicines i am still in a flare.The medicines used this time were Prednisolone(steroid) thrice,starting from 40mg and taper down.Still i was seeing blood in my stool once i started to introduce different food stuffs to my diet(i am on the same rice porridge and potatoes diet,and it sucks).I was also using enema for about a month but to no avail.Finally my doctor has added Imuran with the third time i started steroids.  It has been 2 months now.Firstly he gave me 100mg of Imuran and now it has been increased to 150mg.My Prenisolone course is over now.In addition i am also using 2 types of enemas,Predsol(hydrocortisone) and Pentasa(Asacol) daily.Despite all this i am still not in remission.I am depressed and not able to sleep at night.What is happening to me?Why aren’t the medicines working.I have been checking this site 3 -4 times a day reading all i possibly can.I am happy i joined this site and it gives me courage to see other peoples stories so similar to mine.So full of pain as if they were my own………I have not lost hope.I have started breathing exercises and i can feel they are helping with my stress and fatigue.I am thinking of trying the SCD diet but am still trying to get the book to read it first.i must get back my life and peace of mind.I must get over this disease!!I must be free!!
Where I’d Like to be in 1 Year:
In remission,pain free,confident,strong and independent.And yes, enjoying life like i should be!!
Colitis Medications I’ve Tried:
Hydrocortisone enemas and Prednisolone(steriods) have helped me get into remission in the past.

written by Ri

submitted in the Colitis Venting Area


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