Posts Tagged ‘ibd’

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C3Life Blog: Understanding your treatment in light of today, not forever

April 25, 2012

When my doctor diagnosed me with autoimmune-associated pouchitis, a chronic condition that has not gone away, she prescribed me immunosuppressants. This wasn’t entirely surprising, as she had hinted before that this would be the likely treatment.

The question I had, and my family and friends had, was: how long would I have to remain on this medicine?

The answer: indefinitely. That’s the word my doctor used, and the more I’ve thought about it, the more I prefer that word. Indefinitely sounds less threatening than “forever,” which is usually the way we interpret our treatment plans in our heads. But the word choice is more than just semantic preference: indefinite is really the best word to describe treatment for IBD.

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Keep fighting,
~Dennis

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Lauryn, 14, and her battle with ulcerative colitis

April 20, 2012

Lauryn, a brave young 14-year-old, shares her story of ulcerative colitis and the ups and downs she’s experienced the past couple years. She’s very inspiring and we could all learn something from her attitude.

Keep fighting, Lauryn!

~Dennis

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C3Life Blog: Would I consider ostomy surgery again?

April 19, 2012

This last month I’ve been talking about my recent diagnosis of autoimmune-associated pouchitis (see previous entries for more details). I know I’ve been talking about this a lot, but people have many questions and concerns about this.

One question I’ve been asked several times now is: would I consider ostomy surgery again instead of going back on medicine? I find this a fascinating question as usually surgery, especially ostomy surgery, is something people try everything to avoid.

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Keep fighting,
~Dennis

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Dynamic proctography

April 16, 2012

Ostomystory posted this video about her dynamic proctography experience. This is a test done for people with J-pouches right before takedown surgery to see if the J-pouch is healed and ready to be used.

Her experience is very similar to mine (my video posted second), but different in a few ways. Her experience doesn’t sound nearly as traumatic as mine was, which is fortunate for her. She actually said this was one of her “favorite” tests of all the procedures she’s undergone with IBD so far: I found it one of the worst procedures.

One cool thing about her procedure was she got to see the dye being injected into her pouch as it was happening. I saw no such thing, so I’m a little jealous! I post her video and mine side by side like this so that you can see how a very similar procedure can be interpreted and experienced in vastly different ways depending on the person. That’s why it’s always good to get multiple patient perspectives before making any new treatment decisions.

Keep fighting,
~Dennis


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C3Life Blog: Did my surgeon mislead me before my colectomy?

April 13, 2012

Since being diagnosed with autoimmune-associated pouchitis (see last two blog entries for more info), many people have been concerned, perhaps more concerned than I am. Some have asked me about the discrepancy between what I was told before surgery—that surgery would cure my ulcerative colitis and I no longer needed medicine—and what I am experiencing now—a return to IBD medicine.

Some have wondered, perhaps rightfully so, how I feel about this. Do I feel like my surgeon misled me? Do I feel betrayed? Am I angry that I was told one thing and now live another?

While I would rather not take medicine, truthfully I am not upset at all. Surgery always includes risks, and just because something didn’t work out the way we planned doesn’t mean it was a bad decision

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Keep fighting,
~Dennis

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C3Life Blog: Coping with the return to IBD medicine after surgery

April 10, 2012

Last week I wrote about my recent diagnosis of autoimmune-associated pouchitis. For those unfamiliar with this diagnosis, I suggest reading that blog first before this one. Basically, I’ve had chronic pouchitis (an infection of my J-pouch that causes symptoms similar to inflammatory bowel disease) for months, and am now treating it with IBD medicine.

People with Crohn’s disease often continue taking IBD meds after their colectomy: even if their disease was primarily in their colon, it can appear elsewhere in the digestive tract. IBD meds are necessary to keep the disease in remission.

However, people with ulcerative colitis often don’t need to take IBD meds after their colectomy. Ulcerative colitis only happens in the colon, and if the colon is removed, the disease is removed along with it. Thus, IBD meds are not necessary.

And yet, I was diagnosed with ulcerative colitis—not Crohn’s disease—and I am back on IBD meds, even though my colon is missing.

Several people have asked me how I feel about this. In this entry I hope to provide some perspective on coping with such an unexpected diagnosis.

Read more

Keep fighting,
~Dennis

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Ashley on being newly diagnosed with IBD

March 30, 2012

Ashley from Gut Inspired provides tips for those newly diagnosed with IBD.

Keep fighting,
~Dennis

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Working hand in hand: Ostomy supply donation send-off

March 24, 2012

Have you ever felt that defining moment when you know you are in the right place at the right time? I know it doesn’t happen for me often, so when it does, I can recognize the feeling right to the core of my being. That feeling came to me when I went to Houston a few weeks back to deliver all the ostomy supply donations I had collected into the hands of Project C.U.R.E.

The past weeks have been very difficult for me–I lost my Grandma, and my daddy left immediately for Pakistan; my mom and I were in Texas alone to handle life here. Besides that, I have been undergoing more testing and had to undergo another abdominal cat scan (with barium) to see why I continue to have issues, and doctors have concluded that my disease has moved into my bones and joints–so this blog is long overdue, but there has been a lot of emotional upheaval preventing me from writing. However, I had made an appointment long back to make this delivery of our supplies so the course was set, and although the nearly 5 hour drive to Houston was going to be a long one, my mom and I decided rather than postpone the appointment, we would just follow through. I am so thankful we did.

On the road

The night before we left, I felt so tired and lazy, but a friend called me, and she had a donation to add. We planned to meet so I could pick-up these additional supplies. A large supply of dialysis supplies were added to our donation from a family who lost someone to kidney failure. For some reason, this donation impacted me so much. Maybe it was the generosity of the donor to think of us at this time, coupled with their loss, and the feeling of hurt that I am feeling in my own life. In any case, it was such an amazing donation.

We woke up early to head out to Houston, packed the back of the truck with all the boxes–full to capacity; we left before 6:30 a.m. to head to Project C.U.R.E. The drive was uneventful, quiet and contemplative. While we listened to music the entire way, we thought about what to expect when we arrived to the facility. What happened was completely unexpected. When we drove up, the very first thing I saw in the window is the flag of Pakistan. I don’t think there could have been a more prominent sign for me than that. I felt my Grandma smiling down on me. It was as if I was supposed to be there at that moment, at that time, doing exactly what I was doing. I know it may seem insignificant to some, but to me this was a sign, and suddenly my spirits were lifted.

The Pakistan Flag

The Pakistan Flag

Philanthropy in action

Upon entering we were quickly greeted by the director Sandra, and we instantly connected and felt very welcome as she took us on a tour of the facility. We walked through the entire warehouse as she told us the story behind Project C.U.R.E. and how they operate. The Houston site sends out three to four 40-foot containers of medical supplies per month. They are volunteer-driven, having approximately 20 regular volunteers plus a variety of groups that come in to help each month bringing their volunteer number up to 200. They have bio-med engineers who aid in examining the donated electric machine equipment–ultrasounds, baby warmers, x-rays, etc.–to make sure all items are in good working order before being sent abroad. If they are not working, the item is disassembled; good parts are saved and used for non-working items so they can reassemble to make them viable for use. Nothing is wasted here. It was an awesome thing to see the amount of work and effort that is put into keeping things running in such an organized fashion. Each person or team does its part.

Bio-Med Engineer Work Station

Bio-Med Engineer Work Station

Baby Warmers

Baby Warmers

Next, she showed us an area of surgical equipment that was organized into categories and bins. Each month the Association of Operating Room Nurses comes in to assess the surgical supplies and organize them. Each item donated has to go through assessment. There are different electrical requirements as well and when a country requests items, the facility has to determine if the item can even be used based on the ability to run the machinery in that particular country.

Surgical Equipment Assessment

Surgical Equipment Assessment

From our hands into theirs

When a container is shipped, the items arrive to the country with no additional taxes or tariffs tacked on to it. The items get into the hands of those that need them. Project C.U.R.E. works with the health minister of the recipient country to ensure supplies arrive at the hospital or clinic in need. An average container can value up to $400,000.

The items are carefully and methodically packed to ensure safe shipping. Each box is labeled with specific inventory. Each step of this process makes the operation run smooth. Boxes and supplies are loaded onto the container with the help of volunteers. Hospital beds, when needed, are also sent. When a bed arrives as a donation, if the mattress is soiled and unusable, the padding can still be used for packing material. The resourcefulness of this facility was incredible!

Donated Hospital Beds

Donated Hospital Beds

Project C.U.R.E. also organizes special requests for countries by working with the proper contacts to ensure that items are able to be sent directly to them. For example, I was contacted by a hospital in Egypt: by informing Project C.U.R.E. and providing them the contact information, they would be able to facilitate a shipment of the requested supplies to the hospital in need. That was nice to know since I often do receive requests asking for our ostomy supplies to be sent abroad to specific countries in dire need.

The Warehouse

The warehouse that holds all the supplies before they go out for shipment. AMAZING!

I asked Sandra about ostomy supplies specifically since that is our donation drive focus, and she responded that it is a common request for ostomy supplies from developing countries. I was thankful that our supplies will go to helping other ostomates across the globe. Supplies are sent to areas ravaged by war, field hospitals in remote tribal areas, developing nations, and areas hit by natural disasters. The hospitals and clinics set up to aid the people are in extreme need for medical supplies and are able to use that which we no longer or can’t use here in US. At the time of my trip, there was a container leaving for Vietnam, and plans for three containers to be shipped to Indonesia, Swaziland, and Nigeria.

World Map

World map marked with recent shipments

Because of you

After an hour-long tour and then unloading our supplies, I left Project C.U.R. E. with a little spring in my step and had such a good feeling that we together are doing something to make a difference. I want to thank everyone who makes this possible.

Unpacking our donations

Unpacking our donations

To each of you that sent in a donation, there are no words to describe your kindness and generosity. A simple thank you would not suffice. For each of us that is taking a difficult situation and turning it into something positive, it is a testimony to your strength and ability to overcome this obstacle life has put in your path. Everyone that has made this gesture of goodness, please know that we are, and will forever be, grateful. Your donation will be put to good use and someone out there in this world is having an easier time on their own journey because you thought to do this. And a special thank you goes out to Project C.U.R.E and Sandra for working hand in hand with us to help get our supplies to those in need. United we stand.

Sandra and Me

Sandra and Me

Anyone wishing to donate unused new ostomy supplies or any medical supplies can read more. This is an ongoing donation drive. Email if you have any questions: Nadia@UCVlog.com.

“You must be the change you wish to see in the world.”
~Mahatma Gandhi

~Nadia

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Colon or rectal cancer diagnosis: Should I get a second opinion?

March 15, 2012

The Swedish Medical Center Seattle has a great video here about the issues one should consider when seeking a second opinion. Though the video is talking specifically about colorectal cancer diagnoses, I think these physicians’ advice could apply to other areas of medicine as well. I know I sought a second opinion when I was first diagnosed with IBD (and we were looking into the possibility of primary sclerosing cholangitis as well). Some of you have other diagnoses in addition to inflammatory bowel disease, and like these physicians say, if the disease or complicated, unusual, or the doctor doesn’t have much experience with it, a second opinion can be helpful.

Keep fighting,
~Dennis

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Pregnancy and breastfeeding with IBD

March 2, 2012

Animated IBD Patient is a new project that provides solid medical advice on various IBD topics. Two videos here might be relevant to the ladies: pregnancy and breastfeeding with IBD. The videos are short, and probably don’t cover every possible issue associated with pregnancy, but these videos might start your education on the issue if you are thinking about getting pregnant.

Many of you have more health issues than just IBD, so it’s obviously important to talk to your doctor if you are thinking about getting pregnant. Your doctors want to help you live the life you want, so it’s crucial to work closely with them.

Keep fighting,
~Dennis


Question: Have you gotten pregnant since being diagnosed with IBD? Did your pregnancy pose any challenges to managing your disease, or vice versa? Reply to this post with your story!

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