Lyfestories: Ijmal’s Outlook on Battling Ulcerative Colitis

I am Ijmal Haider, and I have Ulcerative Colitis.

I was diagnosed in November 2015, and prior to my diagnosis I knew very little about the illness. In a very short period of time, summer of 2015, I had lost a significant amount of weight; I was dealing with a lot of cramping and bloating. I went and saw my family doctor, and he said most likely it was stress related but just to be safe he recommended me to a gastroenterologist. Around that time I was dealing with a lot of stress, I was at the peak of my career in Real Estate development, working on the biggest project of my career, I was writing nationally for publications and newspapers, and I was dealing with lots of personal stress as well, so I believed it to be pressure related.

When I met with the GI she asked the pressing questions regarding my lifestyle, my workload, my self-care routines, and all the questions related to my symptoms. Based on the information she had she said it was important we set up a colonoscopy, she said she was suspecting it to be colon cancer. My scope wouldn’t be for another three months from that time. I didn’t want to worry anyone, so I kept her suspicions to myself until my scope. For three months I kept that information to myself and naturally stressed in silence.

In November of 2015 when I had my first colonoscopy I found out I had ulcerative colitis, not colon cancer. In a groggy state, post scope, I struggled to ask the proper questions to understand what the diagnosis meant, I was overloaded with photos and literature and prescriptions.

This allowed me to understand the severity of what I was dealt with, painting a vivid picture of the research I would need to do and the alterations I would need to make to my life. I quickly learned researching diseases on the internet was a trap that seemed to always lead to the darkest corners.

For two years I was consumed with my illness, what it meant for me. I was skeptical to make plans or have fun. My biggest fears were always what if I eat the wrong thing, what if I need to use the bathroom while out, what if I show any sign of weakness amongst my friends,family, and peers. So, I became a bit of a recluse. My illness had taken over my life, all plans revolved around ulcerative colitis. I had put my career, my passions, my creativity and dreams on the back burner.

Spring of 2017, when nothing seemed to be working to reduce inflammation or to make me feel better; I decided to explore Naturopathic medicine, in conjunction with my regular medications. I wanted to try every possible option, so I would have no regrets. In this process I learned so much, I learned the importance of diet, the importance of stress management, understanding what ulcerative colitis actually was and how it affected the body.

I was put on plans to reduce inflammation, create proper diets without irritants, and reduce stress. This definitely helped with many aspects of how I was feeling.

During this time someone close to me gave me one powerful piece of advice, he said “Ijmal, you are not ulcerative colitis,” which really resonated with me. My naturopath had mentioned to start journaling to help reduce the shame, anxiety, stress, and the isolation that the illness brought to my life. When I was diagnosed there were very few outlets I came across that assisted in tackling the psychological effects of having an invisible illness. This is where I decided rather than keeping a private journal I would create a public blog. My blog garnered attention and lead to many people around the world reaching out to me to share their own stories, or to thank me for sharing mine. I was uncovering a community, eliminating shame and stigma, and breaking down the isolation I had felt for the first two years of my diagnosis.

Fall 2017, a friend and I decided to start a web series, called ‘Help Us, YYC’ to tackle the stigma of living with gut issues and invisible illnesses. A tool to educate and help people feel connected and allow them to feel less scared about what they are going through.

In 2018, I find myself having increased inflammation and preparing to start biologic treatments, but I have also found my individuality, my creativity, my career, and purpose again. Through the community I stumbled upon and the stories I have heard I have never felt more prepared to tackle the next step in this journey. I found my peace through the idea of helping others in turn they have ended up helping me.

Advice From Mothers of Children Living With T1D

Happy Mother’s Day!

In our last post, we shared some thoughts from mothers who are living with Type 1 Diabetes. Today, we turned the tables around and asked two mothers of children living with Type 1 Diabetes the same questions. Read their answers below!

What is the biggest challenge you’ve faced being a mother of a T1D?

The biggest challenge I’ve faced being the mother of a child with Type 1 has been getting other people to understand how all-consuming it is. I don’t think anyone can truly grasp how it takes over a family unless they live it.
– Cassie

The biggest challenge I find is that I can’t consistently be with her to make sure she’s eating, or her numbers are okay. The worry when she isn’t with me is very hard.
– Erin

What have you learned from being a mother of a child with T1D?

Being the mother of a child with Type 1 has taught me to treasure every smile, every hug and conversation I have with my children. I’m much more empathetic because I realize everyone is going through something. On the flip side, I’m very direct with people now, I don’t have the patience for any BS.
– Cassie

I’ve learned how to be a stronger person. I’ve learned to fight. This isn’t an easy battle and there are also things in the way, I’ve learned that I need to not let those things stop me from giving my daughter what she needs!
– Erin

What are some adjustments your family has had to make once your child was diagnosed?

The biggest adjustment my family had to make at first was to be patient. Will was so fragile and his care made everyone take a back seat, at first. They had to get used to me crying anytime, anywhere. (That has improved though) We have made every cut we can in our budget. Diabetes happens to the entire family and we are in it to win it.
– Cassie

We really haven’t made too many adjustments.  We have tried to keep life as normal as possible.  For her and our son.
– Erin

What is your piece of advice for mothers of children living with T1D?

I would tell the other mothers of children with Type 1, especially newly diagnosed families, it is NOT your fault. Allow yourself to grieve. It’s ok for your child to see you cry as long as they see you laugh too. Seek the online community and get involved in any way possible. Oh, and the laundry can wait!
– Cassie

My piece of advice is don’t be afraid to ask for help and don’t be afraid to let yourself cry every once in a while. Crying truly helps. You can’t keep it in.
– Erin

We hope every mother out there has a wonderful Mother’s Day!

Why We Are Launching a Diabetes Innovation Fund – T1D Capital by Lyfebulb

Lyfebulb, the company I co-founded with Dr. Steve Squinto, Venture partner Orbimed and Riccardo Braglia, CEO Helsinn, three years ago, is about to launch an early-stage Diabetes Innovation Venture Fund focused on breakthrough opportunities in autoimmune, insulin-dependent diabetes and other associated autoimmune diseases. Our goals are to deliver a superior return on investment and to remove the burden of autoimmune diabetes.

With Lyfebulb, we have created a community focused on chronic disease, and we are relentless in articulating the voice of the patient to bring forward better products, improve compliance and put pressure on industry to listen to the consumer.

Type 1 diabetes (T1D) is my particular problem, but I am not alone.

There are millions of people like myself, and even more who care about someone who has the disease. Most people have heard about diabetes, but many ask me, “isn’t this just a disease of the Western world, a disease that if we only ate better and exercised more, we would not have to worry about?” Most people perceive diabetes to be a less ”severe” disease than for example cancer.

Here are some facts:

  1. There are 29M people with diabetes in the US, and another 86M with pre-diabetes, of which 90% are Type 2 Diabetes (T2D), a disease of inflammation and insulin resistance, which initially can be treated with diet, exercise, and oral medications, is often diagnosed mid-life and in people who are overweight. 5-10% are T1D, a disease of the immune system, always requires insulin injections, and is most often diagnosed in young people
  2.  Both T1D and T2D present with elevated blood sugar levels, and are leading causes for blindness, kidney failure, amputations, and increase the risk for stroke and heart disease several-fold, are the 3rd leading cause for death in the US, and accounts for over $250B/year in spending. The burden T1D has on society, is disproportionate to its prevalence vs T2D

How has industry and the public reacted to these data? Well, the large and growing numbers of T2D patients have attracted multinational companies, scientists and media to spend large sums of money and time on solving the T2D problem. The reality is that the numerous drugs available for T2D are both insufficient and ineffective to keep people in range. There is a very large behavioral component to T2D, and without human as well as electronic help, patients do not take their drugs, do not change their diets, and do not exercise more. 

In my opinion, in T2D, we should focus more on incentive models to keep T2D patients in control and let the drugs that are on the market become easily accessible and less expensive. This brings about a shift for the pharmaceutical industry, which historically has led with an expensive new drug and cared less about the behavioral programs that must go with them. New models are emerging, with companies such as Fitscript (exercise), Wellth (employer-driven behavior modification) and Fit4D (force amplifying nurses to add the human touch), as well as companies, such as Livongo and Glooko, where the sugar levels are explained to patients and prompts are given so that people have a diabetes guide with them all the time. Community-based support is another way to go, and here OneDropToday has a great model, where the glucose strips are unlimited and the support comes from fellow patients.

For T1D, the body is no longer making insulin. Treatment may improve with behavior modification, but this is far from enough. Although insulin saves lives, it is not a Cure and causes major side effects such as hypoglycemia (low blood sugar), weight gain, and cannot completely remove the risk of late-stage complications such kidney failure and heart disease. No one wants to think about their disease all the time, but for a person with T1D that is the only way to stay in control. Some people argue that this control forces them to change their life for the better, allows them to focus on health, but I don’t think anyone would say no to a break from diabetes management if offered.

Companies such as BetaBionics and Bigfoot, as well as large companies such as JNJ, Dexcom and Medtronic, are working on fully automated systems that combine insulin dosing with glucose measuring, which theoretically could remove some of the burden of disease from patients with T1D and keep them safe. This has been called the “artificial pancreas project”, an effort that has been driven hard by the JDRF, and now has triggered multiple financial rounds and start-ups.

This is great for the T1D space, but it still is not a Cure.

I have already mentioned how the two types of diabetes are different. Now let us compare T1D to other autoimmune diseases, such as celiac disease, Hashimoto’s thyroiditis, Addison’s disease, MS, Rheumatoid Arthritis (RA), and Inflammatory Bowel Disease (IBD). In all these diseases, the immune system attacks part of “self”, i.e., part of the person’s own body, instead of attacking only foreign objects such as virus, bacteria, parasites or even transplants.

The difference between some of the autoimmune diseases, such as RA, IBD and MS, vs T1D, is that they have apparent relapsing remitting symptoms, i.e., the person gets worse and then better again, since the cells that are being attacked manage to regenerate. Over time, there is often a progressive nature to the diseases, but with new drugs, there may be some recovery and even fewer episodes going forward.

In T1D, the beta cells seem to be completely lost and except for a period in the early stages of T1D, often described as the honeymoon, one can never get off insulin. New studies, including those of JDRF’s nPOD project (led by Mark Atkinson), for example, have shown that we may have been wrong in many of our beliefs about the disease. For example, the amount of loss at diagnosis is much more variable than one thought. It is still difficult to show the dynamic nature of the disease since biopsies of the pancreas are not done readily.

What is next, I believe there are at least 3 main scenarios for T1D, where we could complement insulin therapy, even if we cannot Cure the disease immediately. A prerequisite for these scenarios is the earlier diagnosis of T1D. It is already possible to measure autoantibodies in healthy individuals and accurately diagnose beta-cell autoimmunity. It is possible to predict the decline of beta-cells and give us a timeline for the full-blown disease. In certain geographies, this method is already in place, for example in Southern Sweden led by Professor Ake Lernmark, Lund, and through TrialNet in the United States, led by Professor Carla Greenbaum in Seattle. Screening school children for beta cell autoantibodies has began in Colorado. The aim is to diagnose T1D at an early stage to have a better chance to develop preventive measures.

  1. Supplementing beta-cells with either embryonic stem cells, adult stem cells or transdifferentiated cells (autologous cells that have been converted to beta cells in the laboratory). The proof of concept has been shown through transplantation of cadaveric beta cells and pancreata, which renders the patient free of insulin. That option is not a viable one for all people, due to the requirement of immune suppressants, limited supply of beta-cells and pancreata. However, there are a number of laboratories and companies working on alternatives: Viacyte being the leader in embryonic stem cells, with academics such as Professors Doug Melton (Harvard), Bob Langer (MIT) and Camillo Ricordi (Miami) following. Orgenesis (ORGS) is a public company that is about to test its transdifferentiated (liver) cells in clinical trials.
  2. Addressing the immune system through combination therapies that halt the attack before a majority of cells are gone. This pathway can also be used in established diabetes to allow for lower insulin doses and thus an easier managed disease through reduced glucose volatility. There have been some failures here, but the field has moved forward through these experiences. Thought leaders include Professor Jeff Bluestone, UCSF, Professor Kevan Herold, Yale, and Professors Lernmark and Atkinson. Interesting approaches also include Dr. Alan Lewis’ DiaVacs and Professor Santamaria’s Parvus. We should learn from oncology and not be afraid of combination therapies!
  3. Through above mentioned studies of nPOD pancreas, it has been shown that beta-cells might be subject to waves of immune attack (much like other autoimmune diseases), with the time of diagnosis being a period of pronounced destruction. Beyond nPOD, studies of human islets suggest that regeneration of beta cells appears possible, in that at least three drugs have been found capable of inducing such actions. Professors Mathias Hebrok, USCF, Klaus Kaestner, U Penn, and Doug Melton have all ventured into this space.

Taken together, novel understanding of the disease pathology and the comparison to other autoimmune disease, suggest with earlier intervention and the right drugs (or cell therapy), we may be able to prevent the absolute dependency on insulin and even Cure T1D, and insulin-dependent T2D.

An absolute must, is to continuously improve our understanding of the human immune system. We need to explain why and how our immune system gets the signal to attack our own beta cells. It will be necessary to study people not rodents. This is where disease foundations such as the JDRF and government (the NIH) are doing incredible funding work.

I have a personal interest in making sure that we find a Cure for this disease in the not too distant future.

I had a pancreas transplant that “Cured” my T1D in 2010, and since then I have not dosed insulin. However, I am on very toxic immune suppressant drugs that have already caused several serious infections, they render me more vulnerable to certain kinds of cancer, and they cause minor side effects such as hypertension and nausea. I do not ever want to go back on insulin, but the prognosis for my transplanted pancreas is uncertain. At some point, my autoimmune disease will break through and kill my new cells. I also risk rejecting my pancreas since my body does not fully accept it as my “own”. The very drugs that reduce my immune response to this organ are also very toxic to my pancreas and each year, it develops more scar tissue.

I won’t give up until there is a Cure. I have seen what diabetes can do to people – as a medical doctor I have taken care of patients with wounds that won’t heal, eyes that do not see, and kidneys that require dialysis. I have seen young and old people who are depressed due to the constant monitoring and the loss of control and I have known people who died from the disease.

This is why we have decided to create a new kind of Venture Fund – T1D Capital – focused on T1D but solutions will be applicable in associated autoimmune diseases and insulin-dependent T2D. We will identify, invest in, and manage companies that are in the regenerative medicine and immunology space that will deliver breakthrough solutions for people like myself and so many others.

When Life Is Not Kind To You, Be Kind To Life

Sometimes you feel like life is not kind to you, but if you are kind to life, it makes it a better place.

I was 21 years old in 1999 when I was diagnosed with IBD / Chrons disease. I had my first bowel surgery in January 2000. Since then, my life has been crazy with surgeries.

I have been through 15 big bowel surgeries and one of them went so wrong – they put an epidural in the wrong spot-  that I had nerve damage and a part of my leg became paralysed. I also had a lot of fistulas and surgery for that.

In 2010, I had to have an ostomy bag, and at the same time they found out I had diabetes. They believed it was a type 1.5 also called LADA Latent Autoimmune Diabetes Adulthood. But after a fail blood test, where they were not sure, they decided it was a Type 2.

I struggled a lot with way too high blood sugars because of my IBD, and I could not control it. Then in 2014, a new doctor thought it was strange for a type 2 to have such high blood sugars, so he took another blood sample and it showed up as Type 1.5, so now I had to inject insulin, like a Type 1.

I have 3 autoimmune diseases now. IBD, Type 1.5 and mild psoriasis. It’s often that if you have one, you can get more. BUT! Life is great after all. I am happily married and I have a great and beautiful daughter who is 14 years old now️. I have an electric small scooter that I totally blinged, that’s just me. BLING makes me happy every day and everywhere I go.

When I had to start injecting insulin many times a day, I decided to make “Bling Your Pen,” a small case for your insulin pen. I loved it! And so did a lot of others. Especially children, teens and women! Lyfebulb has made such a big difference for me, loving the “Bling Your Pen” just as much as me, and choosing to help me make it real on the Market Place. I am so HAPPY!

I choose to make it a good day every day, even though I am very sick now, and in the hospital almost 20-30 % of my life for pain treatment.

 I will continue to try and make a positive difference in the world as long as I live. So far, the world is also giving so much back to me.

My motto is: Don’t worry be happy! And “Bling Your Pen!”

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