For those of you who have been following along with my journey lately, here’s my latest health update!
Back to business as usual!
As I write this 5 months post-op, I am fully recovered and back to training at 100%! My life has picked up right where I left off before my health deteriorated. So I apologize for the postponed update as many of you have been asking how I’m doing.
I am pleased to say that the surgery was a success and I finally got my life back for the most part (more below). I am thrilled to live without the chronic pain I faced throughout much of 2017. I’m excited to move forward after one of the most challenging years of my life. (Check out a few of my previous posts for more on my journey leading up to surgery)
Following my surgery, I started a new position and relocated to a new city only a month after surgery. Starting a new career, relocating and moving all while recovering from a major surgery was stressful and a little crazy to say the least. Balancing a new job, city, diet and new intestines; along with various complications along the way have made my life rather chaotic.
A “whole” new diet
Over the past few months, I started reintroducing many new foods back into my diet with some success. I am now able to eat spinach, kale, lettuce and other greens that I have not been able to eat in over 6 years. Other foods include grapes, cherry tomatoes and apples. I also reintroduced nuts and seeds with no issue at all. I always have a bag of mixed nuts with me as an easy, go-to snack to keep the fat and calories up.
I have not tried broccoli or other cruciferous vegetables as they tend to give most people digestive issues, but I will consider reintroducing them if everything continues to go well.
Despite still having some limitations, I cannot tell you how liberating it is to be able to eat unrestricted for the most part. Unless you have IBD for yourself, it’s almost impossible to understand.
My life revolves around my disease. It’s the first thing I think about when I wake in in the morning, what constantly controls my thoughts and decisions, obsessing and stressing, trying to play every possible scenario out in your head. It’s mentally and physically exhausting. Being able to reintroduce more variety takes a huge mental burden off of me and reduces the stress caused by constantly worrying that the meal I just ate is going to send me to the bathroom or to the emergency room with excruciating pain.
I had my first steak in over 6 years and it was everything I dreamed about and more. Unfortunately, it will likely be my first and last. I was up all night in excruciating pain with severe abdominal cramping. For those who don’t have IBD, the best way to describe the pain is it feels like you’ve been stabbed in your lower abdomen. The pain takes your breath away and the fetal position is the only possible position.
I battled through the pain and luckily the pain subsided after several hours. Stupidly, I also tried a beef burger a few weeks later in hope that the ground patty would be easier to digest than a gristly steak. No luck either, I still had gut wrenching pains for hours following the burger. I will begrudgingly have to eliminate red meat again due to the internal scarring limiting the digestion.
Although the surgery went fantastic, I have had several complications that have not cleared up. Due to the invasive nature of the surgery, my ileocecal valve was removed. The ileocecal valve separates your small from large bowel and the primary function is to prevent reflux of colonic contents into the small bowel and to reabsorb bile salts. When bile salts are not reabsorbed, it accelerates intestinal transit time and leads to systemic, chronic diarrhea (Steiner & Morton. 1991). I am still suffering from inconsistent bowel function and I do not think my bowels will ever readjust to the normal frequency I had prior to surgery.
Thankfully there is a medication called colestipol (Colestid), it is a cholesterol drug that also works by removing bile salts from stool. This has helped tremendously but I found if I eat before taking the medication or forget to take it until after eating, I end up in the bathroom all day. It is a major inconvenience and a problem I never had before surgery. I have been managing it relatively well but I am very disappointed that fixing one issue just leads to another.
Another complication I’ve been experiencing is an infected wound. Although it has 5 months post-op, I still have an open sore where the main incision is. I have been to 5 separate doctors to get this cleared up but no luck. I finally went to the ER to see if I could get a surgeon to look at my wound and the ER Doc suggested that it may be a fistula. Another hospital, more doctors, a CT scan and stressful 10 hours of waiting later, I finally got some good news. No fistula just an infection.
I am unsure if this is a result of Humira or just being immunosuppressed due to my disease, but I am not healing. It sounds like I may have to have another surgery to reopen the wound and get it cleaned out. One physician suggested there might be an internal sack of infected tissue that will have to be cut open and cleaned. Not the news I wanted to hear.
Lastly, over the last month I have been getting abdominal pain and cramping coming back. I do not think this is an inflammatory issue but could be scar tissue build up at the surgical site or the other segments higher into the small bowel that was not removed. Either way, it is extremely discouraging getting pain again. Although it is nothing like the pain I experienced later this year, it is pain that is manageable so far with narcotic-free pain killers. Overall, I still think the surgery was a success compared to debilitating pain I was experiencing before.
• • •
I’ve had several messages from others currently recovering from surgery or waiting for a similar surgery. If I can help make someone’s recovery a little easier or educate/inform, it makes this all worthwhile for me.
If you found this post interesting, here are my other latest posts leading up to and following my surgery. A lot of information packed into these posts so don’t forget to check them out!
- HEALTH UPDATE JULY 2017 – ER visits, $1200 on the floor of a Starbucks bathroom, Surgical options and “the most well-nourished Crohn’s patient”
- THE BOWEL OBSTRUCTION DIET – Restricting my already restricted diet
- HEALTH UPDATE SEPTEMBER 2017 – En Route to my Second Surgery
- 6 weight gaining tips and intentionally gaining body fat?
- HEALTH UPDATE NOVEMBER 2017 – Recovering from Small Bowel Surgery, Job interviews in a hospital shower, losing over 20 lbs in 6 days, Fibrostenotic Disease and just another comical day in my life with Crohn’s