GUEST POST :UC
Meet Lyndsey! She is n Ulcerative Colitis warrior and is bravely sharing her story with us. From UC, to Jpouch, to ileostomy, she covers it all and with a smile on her face. Thank you for sharing Lyndsey!
Hello y’all! My name is Lyndsey and I was diagnosed with ulcerative colitis (UC) in 2012. Ulcerative colitis is an Inflammatory Bowel Disease (IBD) that is focused strictly in the colon and rectum, unlike with Crohn’s Disease, which can be found anywhere from mouth to anus.
Lyndsey’s Battle with UC and C.Diff
My story has had many ups and downs since diagnosis. I was hospitalized for a week right after the colonoscopy that diagnosed me with UC because I couldn’t keep anything down. I was put on a high dose of steroids, cue the moon face, and was given two medications, Balsalazide & Azathioprine, to take regularly to help with my UC. After 6 months of doing well on my medications, my GI finally had me taper off the steroid. I maintained remission on the two medications for about a year and a half until I got Clostridium Difficile (c.diff) from an antibiotic that was helping clear up an infection from an ingrown toenail. That story is crazy in and of itself because I got the ingrown toenail from a 32 oz can of tomatoes busting out of my grocery bag and falling directly on my big toe! The force of the hit caused my nail to change direction in growth. I can’t make this stuff up y’all!
Unfortunately c. diff is very hard to get rid of. I was on an antibiotic called Flagyl to help clear it up and ended up back in the hospital a few more times because it sent my body into a flare-up. My GI told me they had to treat the c. diff first before they could manage my flare. After two rounds of Flagyl and no relief, I was switched to a stronger antibiotic called vancomycin. This stuff was expensive but took care of the remaining c. diff that was still hanging out in my rectum. Once the c.diff was taken care of I was prescribed a biologic called Humira to take along with my maintenance medication because my GI didn’t want me to be on prednisone if he could help it.
I got a new job, moved, and saw a new GI in my city that my old GI had recommended since he knew him. After a year on Humira, my GI had me stop the medication as I was having some side effects from it.
For the next two years, I would flare off and on, but thankfully not so bad as to be hospitalized since my GI jumped at getting me on prednisone fast to get my colon calmed down. Frequent and continuous usage of prednisone is not good for your body. I hated how I felt on the medication and didn’t like what it did to my body. Sure, it helped my colon calm down and got me out of flare-ups, but it was starting to not be worth it in my opinion.
At the end of 2017, I felt like my body was no longer responding to the maintenance medication I had been taking since diagnosis in 2012. My GI had me on prednisone for a flare-up and every time I tried to taper off I would start to have flare symptoms. My GI agreed that my medication didn’t seem to be working effectively any longer. I was put on another biologic called Entyvio. After a few months of getting everything approved by my insurance, I had my loading dose of the infusion. After a few doses, I started feeling good and was able to successfully taper off prednisone.
Things seemed to be going well for the year I was on Entyvio. I enjoyed not having to take medication every day. The infusions were only about 30 minutes long and were every 8 weeks. However, just a little over a year on the medication I started to flare. I was put on prednisone again but noticed that the steroid didn’t seem to be pulling me out of the flare like usual. My GI had me switch and try a different steroid, but things just progressively got worse. Finally, after I felt like my body couldn’t keep going on like this and was ready to ask about surgery, my GI suggested surgery seemed like it was my best option.
I cried after that appointment. I cried because I wanted relief so bad and was just ready to feel better again. I cried because I was also scared. Surgery is scary because there’s always a risk of complications.
I was scheduled to see the colo-rectal surgeon the following week for a consult to discuss surgery. However, my little ole body was done. I started throwing up and unable to keep hardly anything down for several days, on top of having diarrhea 20+ times a day, that my surgeon, who I had yet to see, went ahead and admitted me to the hospital. I met him for the first time in the ER with a vomit bag to my face. He discussed his plan for me to do the surgery in 3 parts. The first surgery he would do while I was in the hospital and remove my colon, giving me a temporary end ileostomy. After I was healed he would do the 2nd surgery to remove my rectum and form my j-pouch, giving me a new temporary loop ileostomy. After healing from that surgery he would do the final reversal surgery and hook everything up where I didn’t have an ileostomy anymore.
I was in the hospital for about 2 weeks with that first surgery. The surgery went well, but boy, you do not realize how much you use your abdominal muscles for the littlest things. I was so sore trying to get up and move around. My surgeon had a stoma nurse come by every day that week after my surgery to give education about my ileostomy and to teach me the basics as far as emptying and changing my bag. A stoma is an artificial opening allowing output from the intestines to pass and is made from a part of your intestines. An ileostomy is a stoma that brings either the end or loop of the small intestines out onto the surface of the skin where output is collected into a pouching system adhered to the skin.
A few days after surgery I ended up with what is called an ileus. An ileus can happen after surgery where your intestines haven’t fully woken up to do their job. I was having some output in my bag but not nearly as much as I was supposed to be having and I was having terrible abdominal pain from the trapped gas from surgery. Walking was the best prescription to help the trapped gas move, as well as help, get my intestines waking up. After a good day of being sick and trying to walk and not throw up, my small intestines finally woke up and I started feeling a lot better!
A few days later I was finally released from the hospital and was recovering at home with the help of my mom who was able to stay with me. It was a learning process getting used to my ileostomy, which I named Moaning Myrtle for all you Harry Potter fans out there. I had a few meltdowns when it came to figuring out what clothes I could wear and feeling like I was never going to get my strength back.
After 6 weeks I saw my surgeon for my checkup and was told we could start talking surgery #2. I was excited to jump on that train because while I was getting used to my ileostomy, my stoma was very long and it was uncomfortable having anything press on it. We got the date set for a month out.
I was more nervous with the second surgery than I was with the first. Partly because I knew what to expect this time around and wasn’t looking forward to the soreness after surgery. Recovery after the second surgery was a breeze. My surgeon had already said while the surgery was another intense one since he would be removing my rectum and forming my j-pouch with some of my small intestines and giving me a new ileostomy, the plus would be that I would be feeling good going into surgery. I was only in the hospital for a few days and was so surprised the difference between going into surgery feeling so sick versus going in feeling well.
Unfortunately, just two weeks later I was back in the hospital for emergency surgery due to adhesions that were obstructing waste from coming out my stoma. I now know what it would feel like to have a food blockage and gotta say, it’s not something I want to experience again. It was extremely painful and caused so much vomiting. My surgeon wasn’t even sure what he was going to see when he opened me up for surgery since they couldn’t really do any scans on me, they tried but I couldn’t keep any contrast down. I woke up from surgery learning that my surgeon had to actually cut me open and staple me up, instead of going in laparoscopically like with the other surgeries, because he was afraid of tearing my intestines while he was in there. He was able to remove the adhesions and he revised my stoma, making the opening a little larger. After a week and a half in the hospital, I was released. This last surgery has been the hardest recovery. My middle wound through my belly button had some issues with trapped fluid and I had to cut my bag around it while it healed. I spent a week after surgery having an off and on 103 temperature for a week. After getting some tests done, my surgeon saw a small spot that could be an abscess but too small to justify opening me up to drain it so he had me taking an antibiotic to help.
I finally feel like I’m slowly getting my strength back now, after 3 months. My j-pouch is looking good from the scope I had in December and I can have my final surgery essentially whenever I want. I want to give my body some time to heal though. It has been through the wringer these last 6 months. I want to gain back some strength and some weight. I want to be feeling better mentally and physically. Right now I’m perfectly fine with my little Moaning Myrtle. Things are going very well with her and I’m honestly not in a big rush for the last surgery.
I see my surgeon in March for a checkup and we’ll probably discuss the next steps but I know that I can wait a long time if I want. My surgeon had even told me at one of my checkups that he has a patient that has had their ileostomy with the j-pouch formed for 20 years now and finally decided to let my surgeon do the reversal.
I want anyone out there that may be deciding on if surgery is right for them to know that while yes surgery is scary, life with an ileostomy has been such an improvement to life in an off and on a flare-up. It takes some getting used to and sometimes can be a challenge, but it is well worth how much better I feel. I wish that surgery wasn’t presented with such a negative connotation. I get that surgery for some people is a permanent thing and the decision shouldn’t be taken lightly. I just wish that surgery wasn’t looked at so negatively. My life isn’t over since having surgery. My life has just gotten better!
If you’d like to follow me on social media, my Instagram handle is @lyndzerella and I have a blog talking about my UC and ileostomy at: lyndseyvsuc(dot)com.
Thanks for letting me share my story with y’all!