Help me live fully despite Crohn's Disease and an Ileostomy | Milaap
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Help me live fully despite Crohn's Disease and an Ileostomy
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Need Rs.30,000
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    Nikhil Jayswal

    from New Delhi, Delhi

Hi everybody. My name is Nikhil Jayswal and I am 24 years old. I have Crohn's Disease, a relatively uncommon disease in India. You might not have heard of it. It is a form of Inflammatory Bowel Disease (IBD) in which the body's immune system attacks the gastrointestinal tract and causes inflammation and ulcers. I was diagnosed with Crohn's Disease and Crohn's Colitis when I was 20, in September 2013. This disease affected parts of my small intestine and whole of my large intestine, the rectum and anus too. The main symptoms of this disease are - frequent diarrhea (can be bloody), fever, joint pain, vomiting, weight loss, debilitating abdominal pain and a lot of other extra-intestinal symptoms such as eye inflammation, mouth ulcers, liver damage, etc. This might sound similar to stomach ulcers or viral fever to you, but it isn't. It is not caused by food or any bacteria/virus. The cause is unknown and there is no cure for this disease. It means that I did nothing that can cause this disease. It's a lifelong, incurable disease and treatment is aimed to suppress symptoms and try to achieve remission (period of no disease symptoms) and prevent relapse or recurrence of this disease (similar to cancer treatment; many of the drugs used to treat IBD are the same as those used to treat cancer).

I have been suffering from this disease since 2013. When I was first diagnosed, doctors treated me with steroids and my symptoms vanished after 2 months. I resumed life with constant medications and dietary restrictions. I had achieved remission. But, unfortunately, my symptoms returned in October 2014, and I have been sick ever since. I have been on every drug used to treat Crohn's Disease, but none worked for me. Thus, I had to undergo a surgery on May 17, 2017, called "subtotal colectomy + end ileostomy" in which surgeons removed my large intestine leaving only 10 centimeters of my upper rectum. Also, the end of my small intestine is taken out of the stomach and sewn to the skin. It is called a "stoma", and a pouch is attached that collects stool from the small intestine. But surgery cannot cure Crohn's Disease because it can affect and cause inflammation anywhere from the mouth to the anus. But I hope that I am lucky enough that my Crohn's will subside for some time and I will have some relief after 3 years of constant symptoms.

This surgery changes your body and recovery is a very long process. It can take me at least a year before I can resume normal diet and active lifestyle. In the meantime, I have to take care of my nutrition and stoma. The stoma pouch is an expensive thing and I have to change the pouch every 4 days. In addition, I need special creams, powders, and other accessories to protect my skin around the stoma. I am severely malnourished (38 kgs, 5 ft 10 in). Therefore, I have to be on a high protein, high-calorie diet. But, I do not have any money to sustain the required diet and to take care of my stoma. In addition, I have developed hypertension after the surgery. So, I have to be treated separately for that too.    

I am from a low-middle class family. We don't have our own house and have always been living on rent. We have no insurance nor any savings. My father's income barely provided us meals, clothes, and education. I have a B.Tech in Mechanical Engineering from Delhi College of Engineering and I worked for Reliance Industries Limited at Vadodara for 6 months, hence could only save a few thousand rupees. I took a personal loan of 1 lakh rupees to spend on my treatment. In addition to that, my father absconded and left me, my brother and my mother with no money in July 2015. He did not want to spend his money on me. I and my brother borrowed heavily from friends, even for food and rent. Then, my friends and my batchmates collected 2.5 lakh rupees for treatment. I and my brother also took education loans to study, which we have to repay. I could not repay my loan, due to which my loan has been categorized as NPA. I got my doctor to request the bank to consider my condition and make a settlement. Apart from treatment, I need funds to get repeated blood tests, visit the hospital, special clothes, and medical accessories.

All our money has already been spent on previous treatments. I had to be treated with special drugs called biologics - Exemptia and Remicade. I have attached receipts showing their cost. I had some support from my doctor too, due to which I was given medicines at a lower cost. I even got some free doses. But even then, the combined costs of bi-weekly blood test, medications, pain medications, frequent hospital admissions, diapers and special drugs was too high. In my latest hospital admission, I spent about 1 lakh rupees. I have been admitted 5 times till now at AIIMS, each time for about a month.

Now, I don't have even money to take care of myself for a week. Thus, I need some help from you to survive this disease and return back to a normal life. I hope you will help me. You can contact me for any clarifications. I have put up all my medical records and doctor's note. I don't have a discharge summary for the surgery because the doctor has not given it to me yet, but I have uploaded the Operation Note. Please contact me in the case of any doubts.

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