Since I had surgery at the end of February, things haven’t gone quite the way I planned or expected. Chronic Illness comes with an endless amount of curveballs thrown at you, especially when you are already down. I did post updates from time to time on Twitter and Facebook, but it wasn’t a priority for the obvious reasons. Today I will give you the short story and as I get back to blogging will dive into the meat of my trial and tribulations of 2019 and share with anyone who cares to know.
The surgery went well. It was a long surgery and my surgeon expected me to be in the hospital longer than I was. My recovery was predictable and uneventful and it took about 4 weeks for me to start feeling like myself. The weekend before I was returning to work things took a bad turn. Kevin was away for work and my mom was hanging out with me and I had this awful abdominal pain and it had nothing to do with my surgery. I was pretty much healed by then and shouldn’t have been in pain from my recovery. We went to the ER where they discovered I had an abscess.
The moment I heard the word “abscess”, I had flashbacks to my first surgery when all hell broke loose. That abscess nearly killed me so I wanted it taken care of right then and there. I was admitted to the hospital for 8 days and the abscess was drained. After a butt load (the official medical term, trust me) of antibiotics and fluids and CT scans, the abscess was gone and I was cleared to go home.
Then the next day, Crohn’s Disease said, “You know what, what if we do the same thing again, doesn’t that sound like fun?” The excruciating pain was back plus I was throwing up and Kevin took me back to the ER. Abscess came back with a vengeance and we did the same thing again, a butt load of antibiotics and drained the abscess. A week later I was still in the hospital and was losing my mind. I had an actual panic attack and I will devote an entire post about that down the road because that was awful and one of the scariest things I have ever been through. My GI doctor told me it was time to see an expert in Crohn’s Disease, he was out of options. I was transferred to a University hospital with doctors who specialize in Crohn’s Disease.
I was very hesitant to make the change, I like my hospital and doctors, but I understand what needed to be done (after lots of convincing). The new hospital and new doctors pretty much did the same thing. A butt load of antibiotics, make sure the abscess was gone and plenty of other diagnostic tests just to torture me. I was discharged after a week and ended up back in the ER the following day with another abscess.
It was setback after setback and it was awful, I wouldn’t wish that on anyone. I happened to see the top Crohn’s doctor the second time around at the new hospital and she had some different ideas. She believed there was a hole in my small bowel that was causing a leak that could create the abscess. She couldn’t find the hole during a scope, which meant it was small enough to heal on its own with time. That meant no solid foods and going home on TPN. She also decided to keep the drain in my abdomen, in case the abscess does return, it won’t sit in my abdomen causing problems and pain. I still have the drain, but it might come out in the next two weeks (YAY!!).
So I’ve been home the last month slowly building up my strength and I’ve started two new treatments. As of last week I was allowed to eat toast and rice, which was very exciting because all I’ve had since March is broth and jello, which gets old fast. I’ve been watching cooking videos on YouTube and calling it my porn. Last night we added chicken to my diet which called for a celebration. I’m still on TPN, but we are in the process of weaning me off as I am able to tolerate more and more food.
I have been on medical leave from work since February and that means no paycheck, so I’m not just sitting home enjoying myself. If everything continues to go well, I should be back at work in about two weeks, which is very exciting.
I’ve missed my normal. I know my life isn’t normal, but it was for me.
Wonderful to hear from you, sad it has been such a hard time though. And that photo of you with hubby to be is just the sweetest thing x.
Thank you!!
I feel so bad for you I really really hope that it will be fixed for good . My son has Crohn’s and I’m so grateful as I’m sure he is that it is nowhere near as bad as yours
I’m sorry that your son has Crohn’s, it sucks. Despite this very challenging year, I’ve had a lot of great times where Crohn’s didn’t get in the way and we have some great things happening this year.
Hi Julie, we miss you this summer. Can’t wait to have you back.
Julie you never seize to amaze me. Sharing your tribulations helps others facing Crohn’s Disease and others not facing Crohn’s Disease, too. You aren’t having a pity party and you reflect that there have been good times. I will continue to pray for your speedy recovery and for you to continue finding strength to get better so you can return to your normal life. Best wishes!
It is so refreshing, although unfortunate, to read about someone that has similar experiences to my own. I am 18 and was admitted twice so far in the past few weeks for abscesses and went through two drainages and a drain placement as well as a buttload of antibiotics lol. I also developed an enterocutaneous fistula and have been having an okay amount of abdominal pain everywhere since being home. And now the abscess is most likely coming back….but hoping to stay out of the ER a bit! It’s hard to find someone who has dealt with the same issues, I didn’t even know Crohn’s could cause this until it happened and I was not educated well on the topic of having fistulizing Crohn’s Disease. My hope is that others will become more educated on what this disease really is. Best wishes and I hope your days get easier to manage 🙂