The difficulties in making travel plans with UC
Making travel plans with UC is always difficult. And I’ve been a little off this past week and a half, which is worrying as I’m planning a trip to Las Vegas for a bachelor party.
For some reason, I have the beginning lyrics of a Dusty Springfield song stuck in my head. I feel like it’s really all I can do at the moment.
Wishing and hoping and thinking and prayingwishin’ and hopin’, Dusty springfield
Informing my doctor of my symptoms
This time I was very good and notified my doctor even though my symptoms are very slight and there is no pain or urgency yet.
Yesterday I spent the day getting my blood drawn for labs and dropping off “specimens” to be analyzed. I have also caught a cold and have a sore throat. I’m desperately hoping that it’s gone by Thursday before my Remicade infusion. I won’t be able to have it done with a cold, as Remicade compromises the immune system.
I’ve been off Prednisone for two months and am ambivalent about where I am right now, especially because of the last two weeks.
Two weeks ago I was running or doing hot vinyasa yoga every day. My knees were beginning to hurt a lot from the running so I added yoga back into my routine and it was helping. Running is great for keeping my gut regular and yoga has always helped me manage pain and stress levels.
While everything was going great with my gut and fitness levels, the one downer from coming off the steroids was my face. For my whole life, I’ve had a clear complexion. But I noticed the first time I came off steroids I had a little rash around my mouth and nose. It disappeared quickly and I forgot about it.
But this time, after coming off the steroids, the rash didn’t disappear and I couldn’t forget about it. Whenever I worked out it would sting and get worse. Also, let’s face it…when you’ve never suffered from acne before, permanent red bumps tend to stress you out. Why is it there? When will it go away? It looks so bad!
Apparently, while most people get acne and rash problems while on Prednisone, I get them after I come off. I was prescribed multiple topical steroid creams for my seborrheic dermatitis but the dermatologist said that it was unlikely to go away without a round of antibiotics. I expressed my concerns about being on antibiotics to her and she said we could try to keep it a short round.
Increase in Bowel Movements and Gas
Two weeks ago I was already noticing some changes in my bowel movements and then I had Indian food and ate way too much. Overeating is still one of the worst things I can do to myself. I felt pretty horrible until late in the evening.
The next day my bowel movements were…explosive. But I thought it was just from eating too much Indian food. However, unfortunately, the symptoms continued throughout the week.
I have extremely bad gas that causes my stomach to be constantly cramping. If my arms rest on my stomach it feels like there is something in there, moving around like a snake. Instead of 1 or 2 large bowel movements per day with a “normal” looking stool, I now have 4 to 6 small bowel movements with type 6 or 7 stools.
Look up the Bristol stool chart if you don’t know what I mean. It has really helped me explain my bowel movements to doctors. I know this sounds gross (and it is) but it is one of the most vital ways for me to communicate the state of my disease.
Antibiotics and Probiotics
When I started the antibiotics I was eating my homemade yogurt, which has a lot of probiotics in it. But it ran out fairly quickly and then I didn’t make some again for a while. I just got caught up and maybe a little lazy. Then I started noticing I had more gas and my bowel movements were changing so I bought some probiotic pills to take. I finally made the yogurt again and am hoping it helps.
And now I have a cold. It’s a small one but I definitely want my Remicade infusion tomorrow. Because here’s the thing: I never want to be sick but I’m furious that I’ve been sick every fall since being diagnosed with UC.
Learning to manage your expectations, especially when making travel plans with UC, is hard.
And this is ultimately my least favorite thing about having a chronic disease. You begin to hope and feel you have overcome the obstacles of your illness.
You make plans and buy that unlimited yoga pass, commit to plans made with friends, or plan on trying new things and going new places.
I know this may sound negative but I still have a lot of hope and determination.
But I also have to constantly gauge my plans and expectations with what is going on with my body.
Vegas is still on. I am confident I can get my UC under control in time. But I do hope that I have the courage to not go if I really am not up to it. Lying to yourself and others is so easy to do.
My Whole UC Story
You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:
- My UC Story: where and when my ulcerative colitis symptoms first started
- Part I – The Beginning of My UC Story: what my symptoms were and the struggles I had getting health care
- Part II – UC Diagnosis and Adjustment: how I was diagnosed and how I struggled to adjust to living with ulcerative colitis (including diet experiments, and getting frustrated with doctors not listening to me)
- Part III – UC and Severe Back Pain: my ongoing struggle with severe back pain + getting a new GI doctor that listened to me and who sent me to a rheumatologist
- Part IV – Sacroiliitis Diagnosis and UC Remission: getting diagnosed with sacroiliitis, getting on Remicade, and finally going into remission (with both my UC and joint disease)
- Part V – The Second UC Flare: my slowly deteriorating health, worsening symptoms, colonoscopy, and my first ER visit
- Part VI – First Hospitalization: my first hospitalization from my second ulcerative colitis flare and my experience with bowel rest and edema (swelling from fluid).
- Part VII – Being on Prednisone for My Second UC Flare Recovery: being on Prednisone for the first time and the various effects it had on my mind and body + adding mercaptopurine (6MP) and allopurinol to my daily routine
- Part VIII – Third UC Flare and Second ER Visit: my third UC Flare experience, symptoms, ER visit, and tests and procedures (CT scan, proctoscopy, etc.)
- Part IX – Recovering From Two Consecutive Flares: being released from the ER and the struggles of recovering from two consecutive UC flares (three months apart)
- UC Planning Realities: Trying to Write and Defend a Thesis: the difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
- Post UC Flare Routine: my post UC flare routine that helped me manage my physical and emotional symptoms
- Body Image and Mental Health with UC: Stop telling me I look great: the connection between body image and mental health and how my experience with ulcerative colitis has complicated my relationship with the two
- Making Travel Plans with UC: the difficulties in making travel plans with UC
- The Nightmare of Ulcerative Colitis: I compare a reoccurring childhood nightmare I had to the nightmare of ulcerative colitis
- Part X – Fourth UC Flare: My fourth UC flare experience, symptoms, hospitalization, tests, procedures, next treatment steps, and recovery
- Hanging Out in Limbo: waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds
- Part XI – How Losing My Colon is a Transformation and Not a Loss: I’m losing my colon soon. But read about how this is a transformation and not a loss and how I made the decision to remove my colon
- You’ve Just Crossed Over into the Prednisone: Being on prednisone is a lot like being in the Twilight Zone. Things aren’t always what they seem, it can be hard to navigate and understand your surroundings, and often times you feel like you might never come back. Or the even scarier thought: that you might not ever want to come back.
- Recovery Reads: a list of some of my favorite books to read while recovering from UC flares, hospitalizations, and surgeries
- Pre-Surgery Jitters: my pre-surgery jitters in the days leading up to my j-pouch surgery on May 20, 2016, and how I distracted and pampered myself
- Part XII – J-Pouch Surgery: what my j-pouch surgery (proctocolectomy with ileal pouch-anal anastomosis) was like, including prep, surgery, and recovery
- J-Pouch Surgery Recovery: j-pouch surgery recovery is a full-time job with lots of road bumps along the way including bladder problems, dehydration, exhaustion, healing stitches and scars, pain and emotions, and adjusting to life with a stoma and ostomy bag
- Stoma Life: what my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like
- Part XIII – Pancreatitis: my struggle with pancreatitis including symptoms, tests, my ER and hospital stay, pain management, post-discharge recovery, and pre-op prep
- Part XIV – Ileostomy Takedown Surgery: how my ileostomy takedown surgery went, including prep, the surgery, hospital recovery, and complications
- Part XV – Post Operative Ileus Complications: my painful and scary experience with post operative ileus complications left me very weak, under 100 pounds, malnourished, and very close to death’s door
- Surgery Recovery and Diet Problems: Physical and diet difficulties from post-surgery recovery and complications from pancreatitis, post-operative ileus, and pouchitis
- Everything is Shiny and New
- Hitting the Wall and The Privilege of Scars and Wrinkles
- Experiencing Loss and The Power and Comfort of Creativity
- Hauntings, Superstitions, and Giving Back: Reflecting on Being Hospital Free for 2 Years