Hi Everyone,
A lot of people have inquired as to my health since surgery. Surgery went really well - and for the most part had an easy recovery (minus a minor setback of tearing below my incision 2 days after being discharged. I felt good - the pain and nausea I was experiencing before the surgery was GONE.
They mostly removed a lot of scar tissue that had formed over the course of years from previous surgeries. This scar tissue was causing bowel loops to adhere together causing bowel obstructions - and the ridiculous pain and nausea.
Over the course of the month following surgery started to feel generally unwell. I was experiencing extreme bloating and distension - as well as a lack of appetite that got worse over the last few weeks. I also began having trouble urinating. What I was taking in was not coming out - and an analysis showed a lot of protein in my urine.
My general physician ordered a CT scan (for this past Friday Oct 1st) to check for anything - and they found something. I got an urgent call Saturday morning from him saying the CT scan showed a build up of fluid in the abdomen. The build up of the fluid is called ascites and I was full of it. In the ER they had to do a procedure called a Perentecious where they stick a large needle/catheter through my skin into the bowel and suck out as much as possible. They were able to remove 2.5 liters of fluid - not all of it but enough to keep my kidney's from shutting down. I had so much fluid it was putting pressure on the bladder making it hard to urinate, pressure on my lungs (was wheezing bad) and chest pressure.
NOW Ascites?!?! you may ask - what causes it? After being admitted and the battery of tests they performed and ordered (an ultra sound, tons of blood work to check for nearly everything, and this morning I had a scan which checks the blood flow from the spleen to the liver) Strange sounding right?
The ultrasound confirmed why I needed to be sent to the ER immediately, and why I am having all this fluid being formed and building up (lost 13lbs in fluid alone from Saturday to this morning) - I am currently experiencing liver failure and cirrhosis of the liver. The question is now WHY does a 30yr old who never drinks having cirrhosis and liver failure?!?!??! The doctors have started the puzzle - getting pieces - and are putting together the puzzle.
I am scared - not gonna lie. For years I have been dealing with Crohn's and it's joys....this is out of left field unknown territory for me. Until I knew some specifics and saw the Liver doc I didn't wanna publicly say anything. Thank you for all the concern, questions, and well wishes. I will keep updated - the next step looks to be a liver biopsy tomorrow or the next day.
HUGS to everyone - and all my best,
Jason
UPDATE 6:34pm
Literally right after I posted this the Liver doc came in. I have Hepatitis B - I am pretty shattered right now. Liver biopsy tomorrow plus endoscopy. Plus talking about treatments. I just right now am scared ...but I know I have incredible people in my life.
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Good bye.
4 years ago
Hi Jas,
ReplyDeleteI'm so sorry about your new diagnosis and I imagine you are feeling pretty lousy physically and emotionally. You are probably saying to yourself "Oh, come on, Gimme a Break or Gimme Strength". That is why I called my blog "Gimme Strength" because it always semms that when one thing is over, another creeps up on you.
It sucks I know. I have Liver problems too. I went to a Transplant Hospital to have a round of tests, and the damage they found is all attributed to Crohn's.
Alot of people don't realize that the Pancreas, gall bladder and Liver are apart of the digestive tract, and that since that is what Crohn's attacks, they get attacked as well.
I have to have blood tests every month for my Liver problems and have been told that I may need a transplant within the next decade. I was terrified, but realized that this is my path, this is why I am on this planet. To write my book and to help others. You have the same purpose and you use CDSN to help and reach out to those who need it.
I'm here if you need to chat. BIG HUGS! xo
Oh my gosh, Jason! I'm so sorry, that must be so awful to deal with. I really feel for you. You are a very inspirational person and I know you will be ok. Just keep your head held high as best as you can. Hold on as tightly as you can to the ones around you, they will be your greatest support. Never give up, never surrender, never say die. My heart goes out to you and I only wish you the best in your recovery and treatment and I hope you can get back on your feet as soon as possible. Nothing is impossible! Love ya, man. *hug* :)
ReplyDeleteLizzie
Jason I am so sorry to hear this new diagnosis. I have liver disease as well (PSC) and I know how scary unknowns are! You think you can get comfortable at least in the knowledge of your chronic illness, and wham, back to the drawing board. I will keep you in my thoughts and watch for updates!
ReplyDeleteShawnee
I was really hoping to hear better news! At least we know what it is now and there are options. I am fortunate so far to not have ended up in the hospital, but still having liver issues with no explanation. My guts have started to flare again as well, so u arent alone in pain, discomfort, or confusion.
ReplyDeleteIf illness is a boat I have to be in, I'm so grateful I have not had to be in it alone and want you to know I'm thinking of you, sending healing energy and love, and am always here if you need to talk.
Hang in there! We love you!
(Planet Narcolepsy, aka LivingWithEGE aka Jess)