Earlier this year, I was seeing my dermatologist because my ostomy scar started to form keloids and became hypertrophic. To reduce some of the overgrowth of scar tissue, I began receiving steroid injections in my scar. But that treatment can only be done 3-4 rounds and additional treatment is needed. So, my doctor suggested I use silicone patches to reduce some of the scar tissue growth. I started using them on May 5th, 2010. The treatment is supposed to take approximately 12 weeks. After a few months, I stopped using the silicone scar patch. My scar started showing improvement, but it started to atrophy, so it stopped. Be sure to see my other video on this scar issue.
“A really strong woman accepts the war she went through and is ennobled by her scars.” ~Carly Simon
~Nadia
QUESTION: HAVE YOU HAD NON-IBD RELATED SIDE EFFECTS FROM ANYTHING YOU HAVE ENCOUNTERED WITH THIS ILLNESS? (I.E. SCAR PROBLEMS, JOINT PAIN, SKIN PROBLEMS, HAIR LOSS ETC.) WHAT ARE YOU DOING ABOUT IT? SHARE HERE!
When I had my reversal surgery to open my J-pouch, the surgeon sutured my ostomy scar but did not close it fully. It was supposed to grow closed on its own and just have a small line of a scar. However, that did not happen. Instead, it formed a large rather oblong patch of purple and red on my tummy. Underneath and on the surface of the scar it started to get hard and formed keloids. On the surface it began to become malformed, red, swollen, bumpy, and growing a.k.a. hypertrophic scarring.
I began to take rounds of steroid shots in my scar to reduce the hardness and the abnormalities. The first round of several injections worked pretty well. The doctor injected the steroid and I repeatedly massaged it so the hardness would go away. I have gone through with these steroid shots about 4 times per round. I have done 2 rounds of treatment, but nothing seems to be working. So, I have a new plan with my doctor to try a silicone patch. I must wear it 24 hours a day for 12 weeks. Hopefully, this will reduce and fix the problem for good. I will have you follow me through my 12 weeks and give an update along the way with before, during, and after photos at the end.
Wish me luck!! I’m going to get rid of this abnormality once and for all!! I’m really proud of my scars as they represent everything I have been through, I call them my battle scars because of the fight I have endured, so I wear them proudly. However, I don’t want the scar to become another problem, hopefully this will do the trick. If you are having an issue with your scar, consult your physician before trying any treatment. My video is not an endorsement for any product.
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~Kahlil Gibran
~Nadia
QUESTION: HAS AN OUTCOME OF A SURGERY NOT GONE THE WAY YOU PLANNED? WERE YOU ABLE TO SOLVE THE COMPLICATION? SHARE YOUR COMMENTS BELOW OR EMAIL ME AT: Nadia@UCVlog.com TO SHARE YOUR STORY.
This past Monday 4-26-10 I had a scare. I had a sharp pain in my abdomen for 2 days and by Monday evening, it was becoming unbearable. On a scale from 1-10 it was an 8 or a 9. It was like an intermittent sharp pain that felt like stabbing sharp pain on my right side near my ostomy scar. Initially I thought something was happening to my scar but after a CT scan of my abdomen, during my ER stay, the doctor found a small kink in my small intestine, kind of like a kink in a hose. Gas built up near the tangle and made everything very discomforting. GAS HURTS PEOPLE!! You all probably know! Maybe it wasn’t necessary for an ER visit, but it’s better to be safe than sorry, and for everything I have been through, I have to live by that mantra. I’m glad it turned out the way it did. This is the first time in 3 years that I got to leave the hospital the same day I entered. That’s an improvement! See?? Baby steps!
“An ounce of prevention is worth a pound of cure.” ~Benjamin Franklin
A couple weeks ago I went into the pharmacy to get my Coumadin refilled, you know, the blood thinning medicine. As I was taking my medicine a couple days ago, I noticed that I had a bonus mystery pill in my bottle!
I have never seen this type of pill before, and had no clue how it got in the bottle. So, I went back to my pharmacy to do some investigating.
“Umm, last time I was here I somehow ended up with this extra pill,” I told the pharmacist as I put the pill on the table.
“Oh. This was in the bottle?”
“Yes.”
She took it over to her computer, and searched through her pill identifier program.
“This is oxycodone,” she said after a few minutes.
“Okay.”
“Are you on this medicine right now?”
“Uhh, no. I haven’t been on it for two and a half years.”
“Oh. Well…do you want it back or do you just want me to throw it away?”
“You can throw it.”
And that was the end of that. Has anybody else ever had a mix-up from the pharmacy? With all the medicines I’ve gotten because of ulcerative colitis, I’m surprised I haven’t had a mix-up before. This was the first time.
About a month ago my arm suddenly went numb for a couple days! Thinking that I may have had a blood clot, or something else bad going on, I went to the doctor for a test. Turns out, the nerve in my elbow is pinched slightly. So not a real big deal, more of an annoyance than anything.
However, my caution to you: if you ever suspect you have a health problem, get it checked out right away! There’s no sense worrying about it and praying that it will go away.
Prior to my illness, most of my body functions were pretty normal. I always struggled with skin issues and asthma as well as a few minor obstacles. Once I became ill with Crohn’s Colitis, I found it amazing how that disruption in my body sent off a chain reaction that caused so many other problems. Sometimes I feel for every step forward I take, I take 2 steps back. Interestingly, biologically my menstrual cycle became extremely disrupted. I am not entirely sure if it is related to the disease or if it is related to medication or possibly both.
“One recent study took a look at the relationship between menstrual cycles and digestive disorders. This study included women with IBDs like Crohn’s disease and ulcerative colitis, women with irritable bowel syndrome (IBS), and women with no digestive conditions. While 93 percent of all the women experienced premenstrual symptoms, the women with Crohn’s disease were among the most likely to report these symptoms. The women with Crohn’s disease were also more likely to report severe gastrointestinal problems during their menstrual period, the most common being diarrhea.” -An Everyday Health Property 2010.
Every woman’s experiences are different, my video describes how my menstrual cycle has been effected. Just as a side note, this was a difficult video to film. I am not comfortable talking about such issues because I am very private. However, I’m not alone, I know it. So, I felt it needed to be discussed. Excuse the ending.
(JUST A REMINDER! WE ARE STILL COLLECTING DONATIONS FOR HAITI! IF YOU HAVE EXTRA OSTOMY SUPPLIES PLEASE FOLLOW THIS LINK TO DONATE! THE PEOPLE OF HAITI REALLY NEED YOUR HELP!!!)
Everybody who has spent just a little bit of time on this site know that I went through surgery to have my colon removed and I have generally been pleased and satisfied with the results. However, I don’t believe that everybody with IBD needs or should have surgery. There is something to be said for controlling IBD with medicine as well.
So which is better, medicine vs. surgery? I get asked this sometimes and really, it depends on what kind of lifestyle you want to live. There are risks and benefits to both options. Hopefully through this vlog you will get the information you need to make a better decision.
It’s clear to anybody who’s spent even a small amount of time on this vlog that I know a thing or two about colon surgery. I know many of the reasons why people need surgery, how they change the body, and what effect surgery has on life afterward. But one area I know very little about is how the surgery is actually performed. How do they actually cut out and remove part or all of the colon or intestine?
I found this little animation about the basics that go into open colon surgery and laparoscopic colon surgery. This video has no sound apparently, but you should get the idea. It doesn’t cover J-pouches but it does help explain what those little tiny scars on my abdomen are from.
When you look at videos like this on YouTube, it’s very easy to stumble across actual medical videos of bodies being cut open and worked on. I won’t show any of those as yet since they are still a little gross for me to watch. But they are out there for all who are curious.
Our friend Nadia has a new set of videos up about her recent trip to get a Remicade infusion. For those who have never been on Remicade, her videos show the basic procedure for getting set up and infused with the medicine. Particularly interesting, yet frustrating, is the nurses’ attempts to start an IV with her small veins. How many of you have been in a situation where you were stuck multiple times with a needle just to get an IV started? Apparently, this is a regular occurrence for Nadia.
I wish her all the best luck and hope that this Remicade keeps her Crohn’s under control.
The Crohn’s and Colitis Foundation of America recently posted an updated guide on complementary and alternative medicine, outlining many of the practices people with IBD sometimes engage in as a way of keeping their disease in remission. The guide is available here for download.
The guide is short and just gives a brief overview of the options available. It doesn’t go into any detail of how to actually engage in these treatments; that’d take some more research on your part if you are actually interested in this sort of thing. I, myself, never tried any of these techniques as I didn’t know about them. Most of these practices haven’t been studied the same way medicines are studied, so positive results for one person does not necessarily imply positive results for everybody.
Question: Have you tried any complementary or alternative medicine and if so, did it work for you? Reply to this post.
Many of us have ostomies only temporarily. And many people around the world are in need of supplies. So if you have any extra unused, new, and clean supplies, send them our way!
We are collecting supplies to send to Haiti with a medical team!
Current progress:
1114 bags and flanges
2108 medical supplies
