Share your experiences with diverticulitis in the comments below.
Share your experiences with diverticulitis in the comments below.
As most of you who follow the United Colon Vlog know, we have been collecting new, unused, and unopened medical and ostomy supplies for quite some time. We began the donation drive back in early 2010, and it has grown so much over the past years. This last week was the biggest ostomy supply drive in our three year history; topping our numbers by leaps and bounds! This last count of supplies came in at 1,334 assorted adult ostomy bags, 1108 wafers (flanges), 171 infant ostomy bags w/ wafers, and 3,752 miscellaneous medical supply items.
Over the past several years, I have moved a couple of times. When I began, the ostomy supply drive started in my home in De Pere, WI. Not knowing how the drive would go, or how others would respond, I took a chance hoping that this idea would catch on. Having gone through two temporary ostomies and now living with a permanent one, I was surprised by how many samples I had accumulated, how many different brands I have gone through to find the right fit, how many appliances I have tried to find that did not irritate my skin, and so on, and so on, and so on. I stored these supplies in my bathroom cupboard.
In 2010 the news came to us that a horrible earthquake had hit Haiti. I felt moved by the overwhelming destruction and devastation and needed to feel like I could help in some way. So, the idea began to form and slowly became reality; I cannot be the only one who has accumulated various medical supplies over time. There must be others with supplies willing to ship them to those in need. I announced that the United Colon Vlog would start an ostomy and medical supply drive in hopes that we could send these supplies initially to Haiti after the Haitians were left with little and their needs were so great. Well, we asked and our incredible followers listened, and I was blown away by the generosity shown by many! It was one of those WOW factor moments in UCVlog history. Our first donation drive was a great success and our collection was sent to Haiti through a faith organization going down to help following this disaster. But the story did not end here.
Once the ostomy supplies started pouring in I saw a great need to keep this going. So that is how it all began. One box at a time, one bag, one wafer, donated, each donation coming from someone with a different story of their journey with an ostomy who wanted to help. It grew and grew. As evidence in all the pictures you can see the progression of how our donation drive grew. Proof positive that you are all making a difference! So with careful research and relationships we have made, our donations are sent to countries all over the world. Places such as Algeria, Vietnam, Guatemala, Chile, Haiti, Bosnia, Bulgaria, just to name a few.
From my move to Texas and now back in Wisconsin, our desire to continue this has never wavered.
And your donations pour in with such openhandedness and a willingness to help in any way you can. Each of you have entrusted me to make this possible so others less fortunate can benefit from these supplies. I never want to let you down. As long as there is a need, I am hopeful to keep the ostomy supplies coming in order to provide those in developing countries with the resources you have made possible through your donations.
I recently had contact with some of the hospitals and organizations in need of these supplies and the stories out of these nations were heart wrenching. I was told of ostomates not having proper supplies and using plastic bags as well as having to wash out their ostomy appliance bags and reuse them for months at a time. Think about that for a moment. Many times they are ostracized from their communities because of odor or superstition. This is after surviving surgery and complications that arise in areas that struggle with the ability to provide proper medical care.
Many times I hear about the children and babies, and it tears at my heart strings to think of those little ones that suffer and endure circumstances that are unimaginable to us. Whatever the case is, these people continue to be in great need and our organization wishes to continue to be a resource to provide supplies on an ongoing basis.
“I am only one; but still I am one. I cannot do everything, but still I can do something; I will not refuse to do something I can do.” ~Helen Keller
Kelly recently made a video about a topic we haven’t discussed much on UCVlog, rheumatoid disease. There are many different rheumatic diseases, including rheumatoid arthritis, and sometimes people with IBD have this disease as well. It can cause extreme pain in the muscles and joints. Kelly’s video provides a demonstration of what it’s like living with this disease, particularly the sleepless nights.
Unfortunately, autoimmune diseases often go hand in hand. Many people don’t just have IBD, but one or more related autoimmune conditions as well. Many of these diseases go through periods of remission and flare-up, and it’s hard to get all diseases in remission at the same time.
Question: Do you have a rheumatic disease in addition to IBD? Please share your story with us!
Kelly has a great video here describing her (bad) experience with Humira. This is a drug that many of you take, or might take in the future. Before I had surgery, I don’t believe this drug was yet approved for ulcerative colitis, so I have not tried it.
Even though she’s had a really bad experience, she stresses that not everybody will react like this: far from it. It’s still good to know, though, that things don’t always work out the way we have planned with chronic illness.
Question: Have you had any really bad reactions to any of the medications you’ve taken? Please share your story with the rest of us!
Question: Have you had a diagnosis of FAP? If so, please share your experiences about this rare condition.
“A relationship is not based on the length of time you spend together, but it is based upon the foundation you build together.”
When you fail to take time to build that strong foundation things are bound to fall apart.
I have an ostomy; it is permanent; a ‘never going to go away’ ostomy. It has been with me for over a year. I have been dealing with this tumultuous disease for more than 5 years. I have lived with it, been coping with it, and trying to come to terms with it for a very long time. I feel like I have begun to fully accept the reality that I will no longer get cured. Nothing about this journey has been easy but I always thought that when the time came for me to find a life partner and get engaged, that part of my life would be the happiest and it would balance out some of the hardship handed to me by this illness. But unfortunately, just like so many other best laid plans, it doesn’t always work out the way you hope. In fact this experience has dealt a resounding blow to my self-esteem and I am left with trying to pick up the pieces of a temporarily once happy heart.
As part of Pakistani culture I am not allowed to traditionally date, but I had met a man at college a couple years ago and had developed a brief friendship. During the early stage, we had no designs of having a long-term relationship, but about 10 months ago, we had reconnected and begun a long distance correspondence after his return to his home. He had developed a deeper level of friendship that he finally revealed. When he decided to come to the USA for us to meet again, we found to have a lot in common; similar goals and dreams, and we had a great connection. He exhibited a lot deeper feelings than I had, but I felt I could catch up and, in time, reciprocate the same feelings in return.
I wanted to, I wanted to fall fully in love and have the real-life romance everyone talks about – and the dream of marriage and family was right before me within my reach. No one could be happier than me. He decided to ask me to be his wife and I accepted his proposal with the heart of a 21-year-old woman that has all the fairy tale beliefs of finding their prince charming.I thought I could have the storybook romance I longed for. I was happy; I felt that he would fill the place inside me that was so lonely. There was someone here who would accept me, would love me, wanted to be with me, and I thought, understood the depth of my illness and the scope of what I had been through. I felt we had such a strong compatibility.
There were some issues and challenges that the two of us faced from the start and because of that we had a plan for a long engagement. Distance, finishing education, timings, culture, and some family issues played a role in putting off a wedding for a couple of years. I had every intention to work on whatever issues and overcome the challenges to make this relationship work and had the time to make our plans for the future. One of the challenges I faced was making him fully understand the entire gamut of all I had been through health-wise. Make it known, that as my husband, I needed him to understand how this disease could affect our life.
Since his strong interest in me began only 10 months back, it was a challenge to bring him up to speed on the facts of inflammatory bowel disease, how I deal with my Crohn’s disease, all the medical and health issues, all the doctors, all the surgeries, and most of all trying to make him understand about my ostomy and the changes that my body has undergone. He knew some but from a distance one cannot know until you are in it, what it truly is like. I know it is overwhelming to take it all in. He is an incredibly intelligent individual, but even the most educated person sometimes cannot fully grasp the concept of this disease and what it can do to your body. It is one of those things that you have to live it to truly understand it, but without a doubt your loved ones can make every effort to try and empathize, and most do well trying to understand.
I remember sitting in our sunroom, staying up until 2 a.m. one night just talking with him about what I have been through, what has happened to me, answering question after question; I felt so light after telling him everything. I said to myself, “I think he gets this.” I even think he is entirely ok with this! I even took out an ostomy pouch and demonstrated to him how it all works. He took a great interest in everything. We talked about my website, talked about what I do to build awareness. I covered everything all the important parts of my journey, but later on questions would surface and he would ask randomly, “Can you take off the bag at night when you sleep, Nadia?” or, “Will you have a bag on your stomach forever?” or “You are going to get cured, InshaAllah, I am sure of it, the doctors can fix your ostomy right?”
I would realize he might not understand and it would occur to me he was confused, but I settled it by patiently answering him again and again. I should have thought more why these questions reoccurred and thought about the fact that he may not have fully absorbed all this information about my ostomy and especially Crohn’s disease, but I didn’t. Maybe I failed in educating him to the extent I should have, or maybe I just assumed he knew more than he truly did, or, that he could educate himself. Hindsight is always 20/20. Maybe I failed myself as well by not fully realizing my delivery of this information did not penetrate or possibly confused him. I gave full disclosure and maybe it was information overload. I should have asked more, talked more, and shared more. But I thought I had done all that and furthermore, I didn’t think it mattered when someone says they love you.
Several weeks ago, I had asked if he could help promote some information about my website. I didn’t think it would be an issue. I really wanted to generate a lot of activity to get the word out there about UCVlog with awareness building posts. I was met with a resounding NO WAY from him. I asked why not?? And right then and there in that one moment everything all came to a screeching halt. His response: “Because I don’t want any of my friends or family here to know you have a disease or an ostomy.”
I could not believe what I was hearing. The blood rushed to my head and surged to my ears. I think my face turned completely red and hot. That stinging feeling you feel in your nose when you are about to cry started, and I could not stop the tears. “But you told me you were ok with all of this” I said. He told me “I am ok, but why do you want everyone to know!?” We argued intensely and his response, “If you respect me Nadia, you would not put any of this ‘stuff’ on Facebook because I don’t want people that know me here to know about this. It’s none of their business.”
Suddenly it hit me. He told me he was comfortable because it was what I wanted to hear and maybe he himself had no issue personally, I don’t know, he insisted he was ok with this and I BELIEVED HIM, but if he were truly comfortable he would be comfortable with people knowing. I know in certain cultures it is important to some that you choose a partner who is healthy, so maybe that weighed into his reasons not to have others know because from all outward appearances, I look healthy. It wasn’t like I was going to parade myself in front of his family flashing my ostomy pouch. I just needed to know he was ok with his family knowing and still stand by my side-PROUDLY.
I asked him “Why don’t you want them to know” and if one blow of this magnitude wasn’t enough I had to receive another when he responded “It’s for your own protection, Nadia.” For my protection??!!? What am I being protected from? What were they going to do to me? I didn’t need protection, I just needed acceptance. I just NEED acceptance…there is nothing wrong with me that you need to protect me from or to hide me from. He was so persistent trying to convince me he had a valid argument of why it had to be this way!
At one point I actually lost myself in the argument and started to think momentarily the problem was with me! Suddenly the fragile hold I had on my self esteem crumbled from his words. I felt ashamed, ugly, hurt, angry, destroyed, heartbroken, embarrassed, sad, and most of all I felt like there was something wrong with me. For weeks I withdrew inside myself. I only participated or did things that helped me feel good about myself once again and spent endless hours talking to my mom, crocheting, and listening to music. So much went wrong with us we were probably doomed from the start but my hopeful heart refused to believe it. I just wanted the dream; the fairytale. Doesn’t everyone?
After a few weeks of “the silent treatment” he contacted me again for the last time by saying one line to me: “How does it feel to see me online and you are online and I don’t talk to you” and by the end of that conversation he completely broke off any contact with me saying I was not a good person for him–it was that swift and harsh as if nothing about me truly mattered. He deleted and blocked me from his Facebook account.
In trying to make him understand my position about my feelings, I was told that I did not respect him and my place was to respect him. That this was my entire fault because I did not respect his position, I dishonored him, and I best learn to listen to him. HOW did this happen to me and how could I be so naïve and stupid. Somehow he managed to turn this around and make this my fault and I had such difficulty getting a word in to make my argument. He could not accept any culpability of how he made me feel.
I am a good person but through this ordeal I started to feel less. However, I had enough inside of me that I would not lower myself by accepting this treatment. In the end I realize this was for the best and he can go on thinking he is right and I don’t care…I WAS wrong, very wrong to think that I could have settled. I think I just wanted to feel loved. Instead I just ended up feeling broken.
For the past several weeks I have been trying to put the pieces of my life back together. And step by step I am coming into my own self again. The stress of this has very much affected my health in many ways. I have a couple of amazing friends that have been instrumental in helping me cope with everything (especially my amazing Mom). I think I rushed into this and I was not ready to handle someone with such a strong and dominant personality insistent on putting me “in my place.” It really did shake my confidence. It made me question if there is anyone out there who is unconditional and will fully accept me and my body someday. I cried until there were no tears left.
My best recourse would be to take this ordeal and learn something positive from it. This disease or having an ostomy does not lessen a person’s value. There is nothing to feel ashamed of or to hide from and one should NEVER allow another individual to make them feel like it does. I realize now there are people who exist who are not fully comfortable with this disease or with a person having an ostomy and the full impact of this hit me right in my heart.
(I ask for compassion and understanding having disclosed a very private and vulnerable part of my life to you. I ask for your respect if you choose to comment. If you wish to respond, please refrain from anything hurtful and negative).
“For every dark night, there is a brighter day.” Tupac Shakur
1 Tbsp Butter
less than 1/3 cup non-lactose milk
pinch of salt
2 pieces provolone cheese
pinch of pepper
Let butter melt on fry pan on stove set to medium heat, wisk together eggs and milk, pour into pan, cover, add salt and pepper, cover, let cook, put cheese in center of omelette, trifold and serve with avocado.
“I think one of the things that saved me is that I never put all my eggs in one basket.” ~Rick Schroder
Created by: OnlineNursingPrograms.com
A special thank you to all the contributors that put the time into this statistical image. Please see the bottom of the photo for a list of all the sources.
Out of the four contenders, which toilet is the most viable option? The Dutch, the British, the Canadian, or the U.S? Why??
“To waste, to destroy, our natural resources, to skin and exhaust the land
instead of using it so as to increase its usefulness, will result in undermining in
the days of our children the very prosperity which we ought by right to hand
down to them amplified. . . ” ~Theodore Roosevelt
Since my recent permanent ostomy surgery, I have been thinking a lot about living the rest of my life as a permanent ostomate and how that will impact all the things that I want to do. Honestly, the way I have been doing for these past 2 months since surgery has made me feel that nothing can hold me back now. I believe that having this ostomy gives me the freedom to do so much more than I thought that I ever could, and it poses no interference to all that I can see myself doing. I am very sensitive and tuned in to so many other people that are on a similar journey and have watched as they, too, have made similar improvements with their health since their ostomy surgery or going through the challenges of this disease. Putting myself out there and sharing my story has given me the rare opportunity to meet others and hear their stories as well.
Many people share their history through their illness, accomplishments, challenges, photos, videos, and through all I am inspired by their tenacity and strength as they persevere. Often, I receive something that inspires me to share with others. There are many such stories that need to be told and this is a great arena to share…this is one such story.
Recently, I met Kate (from Australia) through the United Colon Vlog. Kate does not have inflammatory bowel disease, but she has been challenged for more than a decade with a prolapsed bowel or full thickness rectal prolapse at the age of 18. Although not the same, her symptoms very much mirrored that of a person suffering from IBD. After 5 major surgeries, she now has a temporary ileostomy. She told me recently that she will probably face permanent ileostomy surgery in a couple of years, as there is no quick fix, and her surgeons believe that a reversal will probably be unsuccessful.
Kate has not allowed this to hold her back. Not that long ago, she traveled to Canada from Australia with her husband. During her trip, her husband photographed her in various places showing her ostomy. She sent me a message in my inbox with the photo gallery attached, and with every photo, I just kept getting the goosebumps as I saw her accomplishments in every portrait. My heart connected with her immediately and I kept saying to myself “Oh my gosh, Kate, look at you!!” I actually felt the stinging of tears as I was so proud to see this because for some time now, I have been communicating with her, and I know parts of her journey and how hard this has been for her. To see these photos is so incredibly liberating. As much as she says that I inspire her, she inspires me–so much that I wish to share some of her photos and will be displaying additional photos on the United Colon Vlog fan page on Facebook. Her husband did an amazing photographic depiction to give the feel of strength and remarkable accomplishment for someone who has been through so much.
Kudos to you, Kate! May you continue to inspire. Thank you for having the courage to share these photos and your story and allowing me to show them. And thank you for being my friend. I know this may have been difficult, but your willingness to open yourself up to others will touch the hearts and lives of so many people across the world. It did for me! You rock, Kate!!
Instead of saying, “I am woman hear me roar” we can restate it to say “I am ostomate, watch me soar.”
If you have photos to share, proud moments of you overcoming the challenge of your disease, a huge accomplishment, please email me (Nadia@UCVlog.com) or message me on Facebook so that I can share your story with others. We can all inspire one another. Let me tell your story.
This morning while I was having my tea, I happened to catch this story on CNN about Hans Rueffert. He is a 6 year gastric cancer survivor. The cancer, along with secondary complications, nearly cost him his life, but he persevered and survived. This is an inspiring piece showing how, despite serious health complications, one can overcome and accomplish great things!
When I watch videos like this, it lights a fire in me that I too can overcome all my obstacles. There has to be something better out here, and I want to find it.
“We must accept finite disappointment, but never lose infinite hope.” ~Martin Luther King, Jr.
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