Support Nikki's Battle with Crohn's Disease

My name is Jason Flowers.

I'm setting up this Gofund me for my wife, Nikki.

She has been battling Crohn's disease for the past 16 years. The last two years have been especially challenging and hard for her and has unfortunately, gotten much worse since this January.

After some discussion, Nikki and I have decided to reach out for help -financially, towards her extensive ongoing treatment at home and hospitalizations bills.

Nikki's Medicare doesn't fully cover these new treatments she's been sent home with and in June she had to have a chest port implanted so she can receive TPN at home as well as antibiotics through IV daily, for sepsis and a abdominal infection that keeps re-occurring.

(TPN nutrition is a life saving treatment. It is a way for you to receive nutrients by bypassing your digestive system because it can no longer absorb nutrients, fats etc.... So she receives nutrition intravenously now through an IV catheter in her chest that runs for 19 hours a day.)

Her Medicare only covers 80% of the TPN treatment. (That's just for the meds and supplies. It will not cover to have a nurse come to do at home visits or dressing changes, etc...)

So I was taught in the hospital by the doctor how to setup and mix her meds as well as to administer them to her.

The at-home care for the TPN, which includes all the supplies like needles, lines, medicine and pump is running $800 a month. They have her on this for the next four months and depending on her labs, it could possibly be extended longer. They also want her to be given IV antibiotics at home as well, but again, her insurance will only cover 80% and for the cost of antibiotics, its an additional $820+ a month on top of the $800 for TPN.

As of now, Nikki is currently hospitalized, again.

She had to go to the ER Sunday, July 7th because of chills, night sweats and bad abdomen pain. Her CT scan showed that her abdomen has another large abscess and even more fluid build up again. So the infectious disease doctor placed another drain in and is switching her antibiotics to something stronger once the culture results come back.

She will be needing at home IV antibiotics twice daily once she is discharged from the hospital.

I know a good amount of you follow me and my wife on social media and have an idea of what's been going on.

As much as my work brings in the majority of our income, these additional challenges out weigh anything we can financially handle on our own. We are grateful for our support system and any amount you can give is very much appreciated. If you are not able to provide financial support at this time, please consider sharing this with your network.

Thank you from the bottom of my heart if you are able to help.

Nikki is my life. I would do anything for her.

~Jason~

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"Here is some of Nikki's story that brought us here to this situation."

If you are interested in more details of her journey.

My wife Nikki has been battling Crohn's for 16 years. She is an incredible Mother and Wife. She has a beautiful sculpting talent and is very creative. She's the strongest person I have ever met. She has been through so much and I wish I could take away all this for her.

She's unfortunately been in a Crohn's flare for over a year now and she also has been dealing with a blockage for the last two years.

Her Gastroenterologist (GI doctor) was trying different biologics to help with the blockage and inflammation. They have been holding off on surgery since she has little of her small bowel left from her first colon resection in 2014. Having little to no small bowel comes with all sorts of possible complications. Just like what we are having now.

With this flare we've had a lot of complications. She's been in the hospital now nine times since November of last year.

While hospitalized this past February, the doctors wanted to do a colonoscopy with a balloon dilation so they can get a better look at her blockage and how to handle it. They found three strictures and fistulas, but during the colonoscopy procedure the doctor perforated her and "supposedly" didn't realize it.

Once she got back to the room she was in a ton of pain. I felt helpless. She was complaining that there was pressure everywhere and she felt like an elephant was sitting on her chest. She also had an insane amount of pain in her lower stomach. They did a abdominal x-ray to see what was up and that's when they noticed the perforation. That was extremely scary to watch her go through.

So she went into emergency exploratory surgery. While they were fixing the perforation she had two colon resections and fistula repair. We weren't prepared for such a major surgery and she had a really hard time recovering from it. She was also septic from the perforation, so they placed her on heavy IV antibiotics.

(Sepsis is a life-threatening complication of an infection. It is a condition resulting from the presence of harmful microorganisms in the blood or other tissues and the body’s response to their presence, potentially leading to the malfunctioning of various organs, shock, and possible death.)

A few days after surgery she had to have a drain placed in her abdomen because her follow up CT scan showed an infection.

After a couple of hours of having her drain placed Nikki said she felt something warm running down her side. Apparently they placed the drain in wrong. By this time it was already 9 pm so they couldn't get a hold of the doctor who placed it.

The floor doctor ordered for it to be pulled out since they couldn't see why it was bleeding so much. The charge nurse started to pull on the drain but it was getting caught. Nikki said it made her scream so loud. The charge nurse was unfamiliar with the drain Nikki had. After consulting with a couple other nurses they literally YouTubed a video to see what kind of drain it was and how to remove it. (Yes. YOUTUBE) After almost 40mins of them trying to figure out the drain removal, Nikki was still bleeding and crying. The drain she had was called a piggy line. You have to cut a suture and tube to be able to remove it properly. She ended up having two blood transfusions as a result of all the blood loss.

So from the perforation Nikki got septic. She was placed on antibiotics for two months after her discharge. Between her mother, Patti and I, we drove her every day to the infusion center because we couldn't afford to have nurse care at home therapy.

After a few weeks, Nikki seemed to be doing slightly better. She could walk a bit longer and almost stand straight up. I even got to take her to the Aquarium for Mother's Day and she didn't even need a wheelchair.

Things seemed to be getting better until the middle of May. Nikki got super sick with a fever and her incision got infected and had a golf ball size lump. She was having lots of tingling in her hands and feet. Usually, that's a sign that she needs a blood transfusion. This time is was different. Her hands curled into themselves and and locked up. We headed up to the ER. At one point, she couldn't walk or talk or open her hands. After they ran labs she had no electrolytes, no Calcium, Magnesium or Potassium.

They put her on some oral antibiotics for the infection under her incision. They gave her fluids and everything she was missing through IV. She was told to follow up with her surgeon and GI.

Things got worse the follow week. She was so weak and fatigued and could hardly eat. Her hair was falling out and she had horrible pain. We were so hopeful that she was healing.

After a really bad night her mother took her to the ER because I was working at a convention. Of course, this had to happen while I was out of town and couldn't be with her.

Thank goodness she went because she was septic again and had no electrolytes. This ER visit was in June and she was hospitalized for two weeks. All her Electrolytes, Potassium, Calcium and Magnesium was once again none existent and she was told she was also severely malnutrition.

They did a CT scan and saw that the same infection had come back in her abdomen and spread .The infection in her abdomen is from a new fistula. It caused her incision to re-open and abscess. She had another drain placed again to drain the fluid build up.

They also placed a chest port in and explained to her that her body can't properly absorb nutrition anymore so she needed to be put on TPN. (Which is life saving nutrition.)

Unfortunately they couldn't do anything about her crohns flare while she was there. She is unable to start a new biologic until she is done with the antibotics. Thankfully, she was stable enough to come home at the end of June and celebrate her 40th birthday. The house isn't the same without her. The kids and I always feel lost.

The doctor explained that we needed to do at home care this time.

After all the paperwork etc... Is when we found out about the cost. Nikki was devastated. She already tells me she feels like a burden. She could never be a burden to me. I would go to the end of the earth for her. I told her this is important and we will figure it out.

We are still getting used to this new routine and daily hour drives to the infusion center for antibiotics.

The nurse taught me how to set it all up for her at home. I setup the lines and pump and do the injections for her. I've got the hang of it now. It makes me feel good that I can help and take some of the stress off her. Its so hard to see her so sick. I feel incredibly helpless, but my girl is strong.

Nikki has lost 37 lbs. in the last three months. She is currently 94 lbs.

We've noticed a small difference with the TPN but it will take time. Her fatigue is better but she's still dealing with the Crohn's flare.

I know this TPN is going to work. It has to. Once she is done with her antibiotics she can be placed back on a biologic. Her New GI wants to try Skirizy. Fingers crossed these new injections will stop this flare. The biologic takes 8 to 12 weeks to start working. So we still have a bit to go.

All last week she had been having night sweats and chills with crazy abdomen pain. So Sunday we decided that she really needed to go to the ER. The CT scan showed even more fluid and a large abscess had formed again.

They hospitalized her Sunday night and started her on a broader antibiotic. They also placed a drain in to drain the fluid and send it off to be cultured.

Colon and rectal surgery are supposed to have a consultation with her to see if another surgery is needed for this abscess/fistula.

I really hate this for her. I'm hoping this new antibiotic will do the trick and she will finally have some relief and maybe get to come home early next week.

We will continue to stay positive in this situation.

I appreciate you taking the time to read Nikki's story.

If you can help support, thank you so very much. It means the world to me.

Nikki means the world to me.

~Jason~