The difficulties in making long-term plans with UC and trying to meet thesis deadlines while in a flare
I am beginning to feel much better and I’ve recently accomplished some big goals in other areas of my life, despite some UC planning realities.
UC Planning Realities
As you may know, I’m a graduate student trying to earn my Master’s thesis. Ever since I was diagnosed with ulcerative colitis, my timeline for defending my thesis and turning it in has been pushed back because my health keeps relapsing.
My experience so far has taught me that planning in advance is really hard. Although I like to remain positive, making judgment calls about deadlines based on how my health might be three months from now is impossible.
My longest period of health was four months where
- I was symptom-free
- Had normal energy levels
- Was unafraid of being away from a bathroom
The Best Laid Plans Often Go Awry
The second flare that hospitalized me in October 2014, occurred after turning in the first draft of my thesis. In my program, once the first draft is turned in, you are on a really fast timeline for:
- Getting a second draft turned in
- Defending your thesis
- Turning in the final version
Obviously, I was unable to accomplish this. I took the advice of my committee members and forgot about my thesis for a while and focused on getting better. And boy did I need that, because the first time being on Prednisone made me crazy.
I focused all the excess energy on this blog because it was all I could do. I really did try to direct some of that energy into my thesis. But my brain and body were moving too fast. The complexities of my thesis eluded my Prednisone soaked brain cells.
Once the new semester started in January and the effects of the Prednisone were waning, I re-contacted my thesis advisor. And I began the process of editing and preparing for my thesis defense.
But I was already feeling the physical effects of a flare and was not getting a lot done. It is extremely difficult to maintain a train of thought and argument when you keep having to carefully toss your computer aside and rush to the bathroom.
When February rolled around, I realized I might be at the start of another downturn. I contacted my thesis advisor again and confessed to her that I was beginning to accept some of the harsh realities of living with this disease.
Harsh Realities of Living with UC: Planning Ahead is Impossible
I told her I couldn’t say what my health would be like on a month to month basis and that making long-term plans and deadlines for my thesis was extremely difficult, if not impossible. We decided that the new strategy was to take advantage of my good health NOW.
I would defend my thesis in mid-March and use the feedback to generate another draft. Luckily, my advisor felt that my first draft was good enough for my other committee members to read. They usually only see the second draft.
And then BOOM. Within two weeks of this decision I was extremely ill, in the ER, and on Prednisone again. I forgot all about the looming defense for the first two weeks of March. Especially since my advisor still hadn’t contacted me with an actual date and time for my defense.
If possible, my body was even more traumatized this time and healing was extremely difficult. By March 15 though I was making good progress and began to devote time to making small level edits to my thesis.
And then I got the e-mail on March 21st. My defense was on Tuesday, March 24th at 2:00. I panicked. But then I considered my options. Should I post-pone again? Or should I make the jump and work really hard for two and a half days to prepare and practice a thesis defense PowerPoint presentation?
I decided that the stress of a few days would be better than delaying again and having the burden and stress of an unfinished thesis hanging over my head.
Powered by Prednisone
This time, I made the decision to use the security of being on Prednisone to get things done. While I am on it, I am safe from suffering from an extremely bad flare. The side-effects aren’t as bad this time. Although as I write this at 3:00 in the morning I realize they might just be delayed.
But in the end, my decision paid off. My thesis defense was very successful, I got great feedback that will make the larger level edits to my thesis easier, and I received a new deadline to work towards. Now I have about 20 days to turn around another draft so that my committee members can take one last read and get their comments back to me before I turn in the final version on May 1st.
I judged right. An incredibly heavy pressure has been lifted and even though I am still struggling with my health, I have managed to accomplish some great things.
Learn more about UC planning realities in Making Travel Plans with UC
Read more about how I finished my thesis in Post UC Flare Routine
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