1. Myself :
Myself, Neeraj Srivastava, aged 54 years, a native of Kanpur city, Uttar Pradesh, Banker by profession. I am a Patient of Ulcerative Colitis (UC) since 1998.
2. Purpose of this Blog
To provide a platform to the patients suffering from ‘Ulcerative Colitis’ for experience sharing aimed at enabling better existence for the UC community through exchange and sharing of accumulated experiences.
A click at any of the search engines throws up numerous websites relating to UC. However, most of these sites offer the views from the perspective of the Doctors or Research scholars. The objective of this platform is to provide the UC Patient a platform for giving his/her perspective. They are the ones who undergo the actual pain.
3. About Ulcerative Colitis
a. What is Ulcerative Colitis?
Ulcerative colitis (UC) is a chronic disease of Colon (large intestine) characterized by bloody diarrhoea and an inflamed colon. UC is relatively common but remains poorly understood. Diagnosis must be made by a healthcare practitioner—typically a gastroenterologist. A completely unrelated and less serious condition was sometimes called mucous colitis in the past. As a result, the general term “colitis” is still sometimes used inappropriately to refer to irritable bowel syndrome. It is critical that people who are diagnosed with “colitis” find out whether they have irritable bowel syndrome or ulcerative colitis.
Conventional treatment for UC is often essential in emergency circumstances. However, conventional treatments for UC frequently offer only a partial solution and in some cases are accompanied by significant side effects. Because of the limitations of conventional therapy, many people with UC look to natural medicine in an attempt to deal with their condition.
b. Symptoms
UC can give trouble on and off throughout life. Most of the time, sufferers feel well with no symptoms this means the disease is inactive (in remission). The disease flares up from time to time and becomes active (relapse). The frequency and reasons of relapse are not well understood as of now. In fact the reason for occurrence of UC itself is not known. At each flare-up the symptoms can be better, worse or the same as the time before. The main symptoms are:
Ø Frequent and urgent need to pass blood and mucus, there may be some stool as well;
Ø Diarrhea in more severe cases;
Ø Abdominal pain, often just before a stool is passed;
Ø General feeling of tiredness
If only the final part of the bowel (rectum) is involved, the disease is called proctitis and the usual symptoms are passage of blood and mucus with or without diarrhea. UC involving the full colon is known as ‘pan-UC.’ When only the left wall of the Colon is effected, it is Left Sided UC- just like my case.
4. My Experiences
a. Initial Phase of the Disease
My first encounter with UC was in 1997. However, at that time diagnosis had not been concluded and I was not aware that I was suffering from UC. This is one of the frequent dilemmas faced by most UC patients. This is due to the symptoms resembling Piles and Ulcers. To start with the Doctors treat the patient for Piles and or Ulcers. It is only when the symptoms persist and the treatment does not respond as desired, further probe is resorted to. It so happens, that many a times natural remission occurs while one is being treated for Piles etc. This results in confusion. The same happened with me. I was treated for piles for few months in which time natural remission occurred. I thought I was cured. But, in December 1997, I went on an official tour to Bulandshar, a town in the north Indian state of Uttar Pradesh. After my return from tour I started passing lots of blood with and without stool. Once again, I visited the doctor who had treated me for piles. But, this time the bleeding was copious and it persisted for more then a month without any let up. I became quite weak. Finally, my uncle, Dr. Navin Chandra, MD, a renowned medical practitioner from Gorakhpur, advised me to visit Sanjay Gandhi Post Graduate Medical Institute at Lucknow. I visited SGPGI on January 13, 1998- Gastroenterology Department OPD. After listening to me, Dr. Saraswat, Gastroenterologist, SGPGI advised Colonoscopy and Biopsy (CB). Also, he straight away put me on medicines for UC based on his clinical diagnosis. Colonoscopy and Biopsy were performed on January 13, 1998 itself. UC diagnosis is confirmed through Biopsy of Colon (large intestine). Diagnosis was confirmed in my case after 3 days on receipt of CB report. I was suffering from left sided UC involving the rectum up to sigmoid colon. That day I learnt that UC has two variants – left sided UC when only the left side of the colon is involved and Pan UC when the entire colon (all four sides) is involved.
Once the diagnosis was confirmed, Doctors at SGPGI put me on Steroids (Wyslone 60mg) to be administered locally. It was my first encounter with steroids. Steroids were in addition to other medicines, namely, Mesacol (5-Aminosalsylic Acid), Folvit, Pentodac 40mg (for preventing medicine induced acidity), Isabgol (at bed time) which were advised by Dr. Saraswat during my first visit to SGPGI. As days went by, bleeding and the number of stools came under control. But, steroid therapy started showing its side effects. To counter some of the side effects additional medicines, Shelcal (for Bones), Ativan 2mg (for insomnia) were added. Steroid therapy takes about 3/4 months to complete as the dose is gradually tapered from 60mg to 5 mg- there is a co-relation between the body weight of the patient and the dosage of steroid administered.
b. Evolving Situation
I have had many relapses thereafter. But, the major one was in January 2003. This time the local administration of steroids was not able to arrest bleeding from the colon. Faced with such a situation, doctors put me on Oral steroids. The side effects in case of oral administration become more pronounced- insomnia, mood swings, bone density depletion, skin rashes, ‘Moon’ face, mouth ulcers etc. Another complication, a major one that I developed was ‘Steroid Dependency (SD)’- SD is a state in which relapse occurs as soon as the Steroid therapy is stopped. This situation persisted for nearly 2 years. Given the SD condition, it was decided by my doctors to put me on ‘Azoran,’ apart from other regular medicines. Azoran is a very strong medicine involving major side effects- it is to be taken strictly as per medical advice. The side effects Azoran include, medicine induced jaundice, reduction in Blood Platelet and TLC count – regular blood test had to be conducted, every 15 days, for keeping a check on various critical parameters. The idea is to ensure that the Blood Platelet and TLC count do not fall below the threshold limit and also to monitor the level of jaundice. When the doctors started Azoran, their understanding, based on available research information was that 1 in 500 patients develop jaundice – unfortunately I was 1 of the 500 patients who developed jaundice and Azoran had to be stopped. The situation became really complex. Doctors at SGPGI, Lucknow were of the opinion that I was left with no option but to undergo surgery.
c. Surgical option (as I understood it as a layman)
In case of UC, surgery is a complex multi- stage process. In the first stage, entire colon is removed, leaving only a small part of the rectum. In the second stage, the colon is reconstructed from the Small Intestine and it is connected to the rectum that was left in the first stage. I was told that the gap between the 2 stages can vary from 3 to 6 months depending on the response of the body- faster recovery, lesser gap. Faced with the threat of loosing my colon, I had to explore the subject further. After all, the very idea of loosing any of your organs is a dreadful experience. I have always believed in the manifest Divinity, but, this encounter made my conviction in the manifest divinity stronger. Various organs of our body are nothing but Divine Blessings. During my explorations, I learnt the importance of the Colon for our body and the role it plays in keeping us healthy. More importantly, I learnt that after the removal of the colon, I will have watery motions through out my life as the artificial (constructed) colon is not able to perform the ‘absorption’ function like the natural colon. The most important point, relapse is possible even after surgery - the small portion of the rectum that is left in the first stage, can start bleeding. The doctors at SGPGI were sure that I had no option but to undergo surgery as the sustained administration of oral steroids was poisoning my body. It was a very difficult decision for me and my family. My father was not at all in favour of surgery as he was fully convinced that surgery was not indicated in my case. His conviction was based on his astrological knowledge.
d. Clinical Remission
I once again consulted my uncle Dr. Naveen Chandra. He advised me to consult gastroenterologists at New Delhi for a second opinion. He suggested 2-3 doctors; the senior most doctors he suggested was Prof. (Dr.) B. N. Tandon, MD, FNA, retired head of Gastroenterology department, All India Institute of Medical Sciences (AIIMS), New Delhi. Dr. Tandon is one of the leading gastroenterologists of the country and is popularly referred to as ‘Father of Gastroenterology’ in medical circles. I went to his clinic at Lajpat Nagar, New Delhi alongwith all my past papers- prescriptions, CB reports etc. I was still on oral steroids when I visited his clinic. He examined me clinically and went through my reports. After detailed examination he explained to me about the disease in a very comforting manner. The best part, he gave me hope and confidence that clinical remission is possible and surgery, which was looking inevitable, can be averted. He replaced Mesacol with Colorex. Steroid was to be tapered as usual. Colorex did the magic for me. I was able to sustain remission this time even after the completion of the steroid schedule. Subsequently, Dr. Tandon stopped Colorex and advised Sazo EN to be taken on an ongoing basis in place of Mesacol. The change of salt did the trick for me. I was able to stabilize remission. The medicine schedules returned to the normal state- basic medicines are to be taken on an ongoing basis by UC patients.
e. Role of Family and colleagues at Workplace
Family support is an essential pre-condition for recovery from relapse and also in maintenance of relapse. I am lucky. I have got the best family in the universe. My father, Shri R.C. Srivastava, H.J.S., is the pillar of my life- he is my biggest strength. He is the best father one could dream of. A perennial optimist, he is able to provide solace every time you need it. His words act like a balm- immediate soothing effect. He has a solution for the most difficult of the circumstances.
My life partner, Manisha, a perfect homemaker is the ‘love healer.’ Her pure, sublime and divine love provides magical healing. I am blessed to have her as my companion in the journey called ‘Life.’ She had to encounter with UC in the very early phase of our marriage. To her credit, she has withstood the test of time and helped me regain my health with her unflinching love and never ending prayers. We are blessed with a son Manas.
True to his name, Manas is a very caring and understanding child. He is now 17years old. He never fails to pray for me and family. Children are a source of ‘Divine Delight.’ Even in this tender age, he is able to understand my problems and helps me uplift myself whenever I am down and out. He is a cool talented dude pursuing 11th at St Francis Lucknow.
My younger brother (uncle’s son), Shobhit, is an amazing Youngman. He is always there when I need him. Always willing to help, he has traversed the journey of UC with me holding my hand. He is the implementer- problems vanish with him around.
I was also lucky to have wonderful bosses during the most difficult phase of SD. Their co-operation and empathy was crucial for recovery and they provided the same in abundance. Co-operation of colleagues is equally important- I got it when I needed it most- sounds magical, rather divine. But, at times things can be difficult, after all individuals have individualized perceptions.
No hesitation in proclaiming that I have the best family in the universe- Thank you God.
f. Present Day
My job is like any other All India Public sector job involving all India transfer liability. I was transferred in July 2007 from Kanpur (native place) to Ludhiana. Subsequently, in March 2008 I moved to Jalandhar for a brief stint, from April 2008 to Sep 2011 in Jammu. Thereafter, I move to Mumbai from Oct 2011 to June 2013.
All this while, due to some pressing circumstances I have to move all alone, my wife and son have to stay back at Kanpur. I was fine in Ludhiana. Jalandhar was bad . My body found it difficult to adjust in Jammu and Mumbai - it was really painful. The change of climate and water coupled with mental stress, distance from the family, situation in J&K, seems to have had an adverse effect. I suffered a relapse somewhere around July 2008. During that time the Amarnath agitation was also going on in Jammu covering the entire state subsequently. Entire Jammu was closed for nearly 3 months. Due to official exigencies, I had to be stationed at Jammu, practically under house arrest. All the above factors put together triggered the relapse. I had to go back to Oral steroids as the local administration (Entofoam) was not able to help achieve remission. The oral regime started from September 2008. Finally, I had to proceed on leave during October – December 2008. The leave helped me achieve remission. The factors once again responsible for achieving remission were: 1. Proper treatment (my regular gastro Dr. Khanduri is based at Kanpur). 2. Back at home I was able to get the support of my family thereby releasing the mental stress. 3. Healthy and hygienic food.
Steroids were gradually tapered as usual and finally stopped in January 2009. Regular medicines continue. I am much better now and the side effects of steroid therapy (ST) are gradually disappearing. Apart from other side effects, one of the side effects of ST is skin problem- especially in the neck region, abdomen and back which is stubborn and persists long after the stoppage of steroids, kind of permanent accomplice. Mumbai again was difficult. Water is a big issue in Mumbai- one has to depend on Bisleri cans.
Solitude may be bliss, but loneliness is a curse, especially for a UC patient. Family, regular checkups, friends and helpful colleagues form the essential support system needed for keeping UC in check. Depressed state of mind is sure to precipitate the disease. All in all, my present state of existence is not very conducive for my health. But it’s a professional hazard and I have to live with it.
g. Lessons
The major lessons that I learnt from my now more then decade old experience with UC are:
Ø UC cannot be cured, but it can be treated.
Ø One has to learn to live with UC
Ø Do not think about UC as a disease- treat it simply as an state of existence which can be improved more by one’s own will and determination with the support of competent Doctors, family and colleagues.
Ø Self pity is an absolute no. Depression has no place- one has to be mentally tough.
Ø Support of family members, colleagues at workplace, plays a very important role in the recovery process and also in prevention of relapse.
Ø Regular visit to your Doctor, following his advice in all sincerity, support of family & colleagues and a positive frame of mind are the essentials for a UC soldier.
h. Treatment (s) tried by me
In the initial phase, I tried homeopathic. But, it did not work. Once, UC was confirmed I have been undergoing Allopathic treatment. Subsequently, as I probed further, I came to know about Dr. Harish Verma, BAMS, an Ayurvedic practioner, initially based at Chandigarh, has since shifted to New Delhi. In fact one of my colleagues, gave me a paper cutting carrying an article published in a news paper (Hindi) way back in 1999 (or ’98)- the article was by Dr Verma and his research work on UC. Since, allopathic does not offer any cure I decided to consult Dr. Verma. He went through my reports and advised his medicines- one powder and one capsule to be taken 3 times a day. The best part was that I could take his medicines alongwith the Allopathic medicines. Sometimes in 2006, baba Ramdev, was in Kanpur for one of his camps. He was staying in IIT campus. I was able to get an appointment with him. He taught me 5 Pranayams. I added these to my daily routine alongwith the medicines.
To summarize, no system offers complete cure for UC as till date the cause of UC remains unidentified. One has to try different treatments – I am practicing the Pranayams, taking both, allopathic and ayurvedic medicines and observing dietary restrictions as advised.
i. Diet- Ulcerative Colitis- Dietary Observances
1 Drink Boiled / Filtered Water
2 Mineral Water can be taken
3 Food should be FRESH and cooked with proper HYGIENE
4 Homemade Food should be taken.
5 Restaurant / Hotel / Fast Food / should be avoided. It may lead to infection.
Milk is one food item that is restricted by all doctors. Besides, milk, allopathic doctors advice the policy of ‘observe and avoid’ based on individuals response to different food items- for instance I have found that ‘Soya’ is harmful for me.
j. Doctors
I am undergoing /undergone treatment under following doctors:
1. Prof. (Dr.) B. N. Tandon, MD, FNA, retired head of Gastroenterology department, All India Institute of Medical Sciences (AIIMS), New Delhi.
2. Dr. Arun Khanduri, MD, DM (SGPGI, Lucknow), Consultant Gastroenterologist, Kanpur- he is my regular doctor.
3. Dr. Harish Verma, B.A.MS., Sushruta Ayurvedic Therapy Centre, E-54, Ist Floor, Vikas Marg, Laxmi Nagar, New Delhi.
Doctors at serial number 1 and 2 above are Allopathic doctors and Dr. Verma is an Ayurvedic doctor now based at New Delhi.
Note: The details of all the doctors shared in the Blog pertain to the doctors under whom I have undergone/ am undergoing treatment. The mere mention of their names is not a recommendation/ suggestion to take their treatment. One must choose his/ her doctor based on one’s own experience and requirements.
k. Mental Make-up
The power of mind is amazing. One may not realize it in the day-to-day flow of life, but the mind has a direct bearing on the physical health of an individual. That has been my experience. Since UC is a life long friend, one has to condition his/her mind to live in harmony and peace, especially with self. An ever positive mindset full of hope and optimism is something one has to inculcate. Prayers do help a lot. Talking to self once a day is of great help- try it you can even talk to your organs. This also helps in identifying the symptoms at an early stage- body gives signals, one has to learn to receive them and understand them. Sustained practice is the key. Good friends in whom you could confide fearlessly and who are compassionate is a real boon.
ü Condition your mind for eternal optimism. Do not loose hope.
ü Pray on a regular basis.
ü Talk to yourself on a daily basis. Share a lot
ü Try to listen to your body and respond accordingly.
ü Use the power of mind to treat yourself.
5. Disclaimer
a. The experiences shared, views expressed, are based on my understanding of the disease and it is not necessary that any or all of my experiences may be the same as of other individuals.
b. The Blog is meant for sharing of experiences, ideas etc. only. Any treatment must be taken under the guidance of a qualified Doctor as per individual needs.
c. Medicines mentioned above are very strong medicines and should be taken under strict medical supervision of a competent doctor. Please do not take any medicine without proper medical advice.
d. Inclusion of the names of various doctors in my experience narrative is one of the ways to express my gratitude – no recommendations. One must choose her/ his doctor based on one’s needs/ requirements. Choice of a particular doctor is an individual decision.
My Blog welcomes all. Anybody having some information/ experience to share, especially regarding UC, not necessarily a UC patient, is welcome to this Blog. Even those having nothing to do with UC are also welcome to this open space with open heart and mind.
Myself, Neeraj Srivastava, aged 54 years, a native of Kanpur city, Uttar Pradesh, Banker by profession. I am a Patient of Ulcerative Colitis (UC) since 1998.
2. Purpose of this Blog
To provide a platform to the patients suffering from ‘Ulcerative Colitis’ for experience sharing aimed at enabling better existence for the UC community through exchange and sharing of accumulated experiences.
A click at any of the search engines throws up numerous websites relating to UC. However, most of these sites offer the views from the perspective of the Doctors or Research scholars. The objective of this platform is to provide the UC Patient a platform for giving his/her perspective. They are the ones who undergo the actual pain.
3. About Ulcerative Colitis
a. What is Ulcerative Colitis?
Ulcerative colitis (UC) is a chronic disease of Colon (large intestine) characterized by bloody diarrhoea and an inflamed colon. UC is relatively common but remains poorly understood. Diagnosis must be made by a healthcare practitioner—typically a gastroenterologist. A completely unrelated and less serious condition was sometimes called mucous colitis in the past. As a result, the general term “colitis” is still sometimes used inappropriately to refer to irritable bowel syndrome. It is critical that people who are diagnosed with “colitis” find out whether they have irritable bowel syndrome or ulcerative colitis.
Conventional treatment for UC is often essential in emergency circumstances. However, conventional treatments for UC frequently offer only a partial solution and in some cases are accompanied by significant side effects. Because of the limitations of conventional therapy, many people with UC look to natural medicine in an attempt to deal with their condition.
b. Symptoms
UC can give trouble on and off throughout life. Most of the time, sufferers feel well with no symptoms this means the disease is inactive (in remission). The disease flares up from time to time and becomes active (relapse). The frequency and reasons of relapse are not well understood as of now. In fact the reason for occurrence of UC itself is not known. At each flare-up the symptoms can be better, worse or the same as the time before. The main symptoms are:
Ø Frequent and urgent need to pass blood and mucus, there may be some stool as well;
Ø Diarrhea in more severe cases;
Ø Abdominal pain, often just before a stool is passed;
Ø General feeling of tiredness
If only the final part of the bowel (rectum) is involved, the disease is called proctitis and the usual symptoms are passage of blood and mucus with or without diarrhea. UC involving the full colon is known as ‘pan-UC.’ When only the left wall of the Colon is effected, it is Left Sided UC- just like my case.
4. My Experiences
a. Initial Phase of the Disease
My first encounter with UC was in 1997. However, at that time diagnosis had not been concluded and I was not aware that I was suffering from UC. This is one of the frequent dilemmas faced by most UC patients. This is due to the symptoms resembling Piles and Ulcers. To start with the Doctors treat the patient for Piles and or Ulcers. It is only when the symptoms persist and the treatment does not respond as desired, further probe is resorted to. It so happens, that many a times natural remission occurs while one is being treated for Piles etc. This results in confusion. The same happened with me. I was treated for piles for few months in which time natural remission occurred. I thought I was cured. But, in December 1997, I went on an official tour to Bulandshar, a town in the north Indian state of Uttar Pradesh. After my return from tour I started passing lots of blood with and without stool. Once again, I visited the doctor who had treated me for piles. But, this time the bleeding was copious and it persisted for more then a month without any let up. I became quite weak. Finally, my uncle, Dr. Navin Chandra, MD, a renowned medical practitioner from Gorakhpur, advised me to visit Sanjay Gandhi Post Graduate Medical Institute at Lucknow. I visited SGPGI on January 13, 1998- Gastroenterology Department OPD. After listening to me, Dr. Saraswat, Gastroenterologist, SGPGI advised Colonoscopy and Biopsy (CB). Also, he straight away put me on medicines for UC based on his clinical diagnosis. Colonoscopy and Biopsy were performed on January 13, 1998 itself. UC diagnosis is confirmed through Biopsy of Colon (large intestine). Diagnosis was confirmed in my case after 3 days on receipt of CB report. I was suffering from left sided UC involving the rectum up to sigmoid colon. That day I learnt that UC has two variants – left sided UC when only the left side of the colon is involved and Pan UC when the entire colon (all four sides) is involved.
Once the diagnosis was confirmed, Doctors at SGPGI put me on Steroids (Wyslone 60mg) to be administered locally. It was my first encounter with steroids. Steroids were in addition to other medicines, namely, Mesacol (5-Aminosalsylic Acid), Folvit, Pentodac 40mg (for preventing medicine induced acidity), Isabgol (at bed time) which were advised by Dr. Saraswat during my first visit to SGPGI. As days went by, bleeding and the number of stools came under control. But, steroid therapy started showing its side effects. To counter some of the side effects additional medicines, Shelcal (for Bones), Ativan 2mg (for insomnia) were added. Steroid therapy takes about 3/4 months to complete as the dose is gradually tapered from 60mg to 5 mg- there is a co-relation between the body weight of the patient and the dosage of steroid administered.
b. Evolving Situation
I have had many relapses thereafter. But, the major one was in January 2003. This time the local administration of steroids was not able to arrest bleeding from the colon. Faced with such a situation, doctors put me on Oral steroids. The side effects in case of oral administration become more pronounced- insomnia, mood swings, bone density depletion, skin rashes, ‘Moon’ face, mouth ulcers etc. Another complication, a major one that I developed was ‘Steroid Dependency (SD)’- SD is a state in which relapse occurs as soon as the Steroid therapy is stopped. This situation persisted for nearly 2 years. Given the SD condition, it was decided by my doctors to put me on ‘Azoran,’ apart from other regular medicines. Azoran is a very strong medicine involving major side effects- it is to be taken strictly as per medical advice. The side effects Azoran include, medicine induced jaundice, reduction in Blood Platelet and TLC count – regular blood test had to be conducted, every 15 days, for keeping a check on various critical parameters. The idea is to ensure that the Blood Platelet and TLC count do not fall below the threshold limit and also to monitor the level of jaundice. When the doctors started Azoran, their understanding, based on available research information was that 1 in 500 patients develop jaundice – unfortunately I was 1 of the 500 patients who developed jaundice and Azoran had to be stopped. The situation became really complex. Doctors at SGPGI, Lucknow were of the opinion that I was left with no option but to undergo surgery.
c. Surgical option (as I understood it as a layman)
In case of UC, surgery is a complex multi- stage process. In the first stage, entire colon is removed, leaving only a small part of the rectum. In the second stage, the colon is reconstructed from the Small Intestine and it is connected to the rectum that was left in the first stage. I was told that the gap between the 2 stages can vary from 3 to 6 months depending on the response of the body- faster recovery, lesser gap. Faced with the threat of loosing my colon, I had to explore the subject further. After all, the very idea of loosing any of your organs is a dreadful experience. I have always believed in the manifest Divinity, but, this encounter made my conviction in the manifest divinity stronger. Various organs of our body are nothing but Divine Blessings. During my explorations, I learnt the importance of the Colon for our body and the role it plays in keeping us healthy. More importantly, I learnt that after the removal of the colon, I will have watery motions through out my life as the artificial (constructed) colon is not able to perform the ‘absorption’ function like the natural colon. The most important point, relapse is possible even after surgery - the small portion of the rectum that is left in the first stage, can start bleeding. The doctors at SGPGI were sure that I had no option but to undergo surgery as the sustained administration of oral steroids was poisoning my body. It was a very difficult decision for me and my family. My father was not at all in favour of surgery as he was fully convinced that surgery was not indicated in my case. His conviction was based on his astrological knowledge.
d. Clinical Remission
I once again consulted my uncle Dr. Naveen Chandra. He advised me to consult gastroenterologists at New Delhi for a second opinion. He suggested 2-3 doctors; the senior most doctors he suggested was Prof. (Dr.) B. N. Tandon, MD, FNA, retired head of Gastroenterology department, All India Institute of Medical Sciences (AIIMS), New Delhi. Dr. Tandon is one of the leading gastroenterologists of the country and is popularly referred to as ‘Father of Gastroenterology’ in medical circles. I went to his clinic at Lajpat Nagar, New Delhi alongwith all my past papers- prescriptions, CB reports etc. I was still on oral steroids when I visited his clinic. He examined me clinically and went through my reports. After detailed examination he explained to me about the disease in a very comforting manner. The best part, he gave me hope and confidence that clinical remission is possible and surgery, which was looking inevitable, can be averted. He replaced Mesacol with Colorex. Steroid was to be tapered as usual. Colorex did the magic for me. I was able to sustain remission this time even after the completion of the steroid schedule. Subsequently, Dr. Tandon stopped Colorex and advised Sazo EN to be taken on an ongoing basis in place of Mesacol. The change of salt did the trick for me. I was able to stabilize remission. The medicine schedules returned to the normal state- basic medicines are to be taken on an ongoing basis by UC patients.
e. Role of Family and colleagues at Workplace
Family support is an essential pre-condition for recovery from relapse and also in maintenance of relapse. I am lucky. I have got the best family in the universe. My father, Shri R.C. Srivastava, H.J.S., is the pillar of my life- he is my biggest strength. He is the best father one could dream of. A perennial optimist, he is able to provide solace every time you need it. His words act like a balm- immediate soothing effect. He has a solution for the most difficult of the circumstances.
My life partner, Manisha, a perfect homemaker is the ‘love healer.’ Her pure, sublime and divine love provides magical healing. I am blessed to have her as my companion in the journey called ‘Life.’ She had to encounter with UC in the very early phase of our marriage. To her credit, she has withstood the test of time and helped me regain my health with her unflinching love and never ending prayers. We are blessed with a son Manas.
True to his name, Manas is a very caring and understanding child. He is now 17years old. He never fails to pray for me and family. Children are a source of ‘Divine Delight.’ Even in this tender age, he is able to understand my problems and helps me uplift myself whenever I am down and out. He is a cool talented dude pursuing 11th at St Francis Lucknow.
My younger brother (uncle’s son), Shobhit, is an amazing Youngman. He is always there when I need him. Always willing to help, he has traversed the journey of UC with me holding my hand. He is the implementer- problems vanish with him around.
I was also lucky to have wonderful bosses during the most difficult phase of SD. Their co-operation and empathy was crucial for recovery and they provided the same in abundance. Co-operation of colleagues is equally important- I got it when I needed it most- sounds magical, rather divine. But, at times things can be difficult, after all individuals have individualized perceptions.
No hesitation in proclaiming that I have the best family in the universe- Thank you God.
f. Present Day
My job is like any other All India Public sector job involving all India transfer liability. I was transferred in July 2007 from Kanpur (native place) to Ludhiana. Subsequently, in March 2008 I moved to Jalandhar for a brief stint, from April 2008 to Sep 2011 in Jammu. Thereafter, I move to Mumbai from Oct 2011 to June 2013.
All this while, due to some pressing circumstances I have to move all alone, my wife and son have to stay back at Kanpur. I was fine in Ludhiana. Jalandhar was bad . My body found it difficult to adjust in Jammu and Mumbai - it was really painful. The change of climate and water coupled with mental stress, distance from the family, situation in J&K, seems to have had an adverse effect. I suffered a relapse somewhere around July 2008. During that time the Amarnath agitation was also going on in Jammu covering the entire state subsequently. Entire Jammu was closed for nearly 3 months. Due to official exigencies, I had to be stationed at Jammu, practically under house arrest. All the above factors put together triggered the relapse. I had to go back to Oral steroids as the local administration (Entofoam) was not able to help achieve remission. The oral regime started from September 2008. Finally, I had to proceed on leave during October – December 2008. The leave helped me achieve remission. The factors once again responsible for achieving remission were: 1. Proper treatment (my regular gastro Dr. Khanduri is based at Kanpur). 2. Back at home I was able to get the support of my family thereby releasing the mental stress. 3. Healthy and hygienic food.
Steroids were gradually tapered as usual and finally stopped in January 2009. Regular medicines continue. I am much better now and the side effects of steroid therapy (ST) are gradually disappearing. Apart from other side effects, one of the side effects of ST is skin problem- especially in the neck region, abdomen and back which is stubborn and persists long after the stoppage of steroids, kind of permanent accomplice. Mumbai again was difficult. Water is a big issue in Mumbai- one has to depend on Bisleri cans.
Solitude may be bliss, but loneliness is a curse, especially for a UC patient. Family, regular checkups, friends and helpful colleagues form the essential support system needed for keeping UC in check. Depressed state of mind is sure to precipitate the disease. All in all, my present state of existence is not very conducive for my health. But it’s a professional hazard and I have to live with it.
g. Lessons
The major lessons that I learnt from my now more then decade old experience with UC are:
Ø UC cannot be cured, but it can be treated.
Ø One has to learn to live with UC
Ø Do not think about UC as a disease- treat it simply as an state of existence which can be improved more by one’s own will and determination with the support of competent Doctors, family and colleagues.
Ø Self pity is an absolute no. Depression has no place- one has to be mentally tough.
Ø Support of family members, colleagues at workplace, plays a very important role in the recovery process and also in prevention of relapse.
Ø Regular visit to your Doctor, following his advice in all sincerity, support of family & colleagues and a positive frame of mind are the essentials for a UC soldier.
h. Treatment (s) tried by me
In the initial phase, I tried homeopathic. But, it did not work. Once, UC was confirmed I have been undergoing Allopathic treatment. Subsequently, as I probed further, I came to know about Dr. Harish Verma, BAMS, an Ayurvedic practioner, initially based at Chandigarh, has since shifted to New Delhi. In fact one of my colleagues, gave me a paper cutting carrying an article published in a news paper (Hindi) way back in 1999 (or ’98)- the article was by Dr Verma and his research work on UC. Since, allopathic does not offer any cure I decided to consult Dr. Verma. He went through my reports and advised his medicines- one powder and one capsule to be taken 3 times a day. The best part was that I could take his medicines alongwith the Allopathic medicines. Sometimes in 2006, baba Ramdev, was in Kanpur for one of his camps. He was staying in IIT campus. I was able to get an appointment with him. He taught me 5 Pranayams. I added these to my daily routine alongwith the medicines.
To summarize, no system offers complete cure for UC as till date the cause of UC remains unidentified. One has to try different treatments – I am practicing the Pranayams, taking both, allopathic and ayurvedic medicines and observing dietary restrictions as advised.
i. Diet- Ulcerative Colitis- Dietary Observances
1 Drink Boiled / Filtered Water
2 Mineral Water can be taken
3 Food should be FRESH and cooked with proper HYGIENE
4 Homemade Food should be taken.
5 Restaurant / Hotel / Fast Food / should be avoided. It may lead to infection.
Milk is one food item that is restricted by all doctors. Besides, milk, allopathic doctors advice the policy of ‘observe and avoid’ based on individuals response to different food items- for instance I have found that ‘Soya’ is harmful for me.
j. Doctors
I am undergoing /undergone treatment under following doctors:
1. Prof. (Dr.) B. N. Tandon, MD, FNA, retired head of Gastroenterology department, All India Institute of Medical Sciences (AIIMS), New Delhi.
2. Dr. Arun Khanduri, MD, DM (SGPGI, Lucknow), Consultant Gastroenterologist, Kanpur- he is my regular doctor.
3. Dr. Harish Verma, B.A.MS., Sushruta Ayurvedic Therapy Centre, E-54, Ist Floor, Vikas Marg, Laxmi Nagar, New Delhi.
Doctors at serial number 1 and 2 above are Allopathic doctors and Dr. Verma is an Ayurvedic doctor now based at New Delhi.
Note: The details of all the doctors shared in the Blog pertain to the doctors under whom I have undergone/ am undergoing treatment. The mere mention of their names is not a recommendation/ suggestion to take their treatment. One must choose his/ her doctor based on one’s own experience and requirements.
k. Mental Make-up
The power of mind is amazing. One may not realize it in the day-to-day flow of life, but the mind has a direct bearing on the physical health of an individual. That has been my experience. Since UC is a life long friend, one has to condition his/her mind to live in harmony and peace, especially with self. An ever positive mindset full of hope and optimism is something one has to inculcate. Prayers do help a lot. Talking to self once a day is of great help- try it you can even talk to your organs. This also helps in identifying the symptoms at an early stage- body gives signals, one has to learn to receive them and understand them. Sustained practice is the key. Good friends in whom you could confide fearlessly and who are compassionate is a real boon.
ü Condition your mind for eternal optimism. Do not loose hope.
ü Pray on a regular basis.
ü Talk to yourself on a daily basis. Share a lot
ü Try to listen to your body and respond accordingly.
ü Use the power of mind to treat yourself.
5. Disclaimer
a. The experiences shared, views expressed, are based on my understanding of the disease and it is not necessary that any or all of my experiences may be the same as of other individuals.
b. The Blog is meant for sharing of experiences, ideas etc. only. Any treatment must be taken under the guidance of a qualified Doctor as per individual needs.
c. Medicines mentioned above are very strong medicines and should be taken under strict medical supervision of a competent doctor. Please do not take any medicine without proper medical advice.
d. Inclusion of the names of various doctors in my experience narrative is one of the ways to express my gratitude – no recommendations. One must choose her/ his doctor based on one’s needs/ requirements. Choice of a particular doctor is an individual decision.
My Blog welcomes all. Anybody having some information/ experience to share, especially regarding UC, not necessarily a UC patient, is welcome to this Blog. Even those having nothing to do with UC are also welcome to this open space with open heart and mind.
