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My struggle with UC & severe back pain, getting a GI doctor that listened to me, and getting referred to a rheumatologist
Ongoing Severe Back Pain
By the end of April 2014, I had moved back to Vacaville and was still working on getting well. I also had an appointment with a new GI specialist. But now I was also struggling with my back.
In July of 2010, I fell down the stairs and landed on my tailbone. For two weeks nothing hurt at all. But then I started experiencing a sharp catch that would make me stumble and wince in pain. Soon it developed into constant pain and eventually, I couldn’t get up-it hurt too much.
Sneezing, coughing, hiccups, laughing, crying-everything hurt. It would make me sob but then I would have to try to swallow the sobs because it hurt too much to cry. A doctor referred me to physical therapy where they said it was probably SI joint dysfunction.
I was given exercises and I had a couple of sessions. But for the most part, I had to figure out how to deal with and prevent pain on my own. I took my first yoga class at a gym and it quickly became my best pain management strategy. However, those first three months were really hard.
Vicodin Side Effects
My doctor prescribed some Vicodin to me and I only used it occasionally. But I must have been super sensitive because I got so constipated that I couldn’t urinate. Vicodin is an opiate and can cause constipation. If taken on a regular basis, a stool softener is prescribed along with it to prevent constipation.
I didn’t know this, but in any case, it should not have been a problem for me as I was not taking it enough. I hardly made a dent in the pill bottle. This led to an ER visit where I had to get an enema. But while there, the ER doctor ordered x-rays to see how far backed-up I was and to look at my bones. There was nothing in the x-rays to indicate any damage.
After this, I developed a feeling, similar to paranoia, that doctors thought I was crazy and making up my symptoms. I felt such pain but every time I saw a doctor about it either:
- The pain was not as bad
- I couldn’t replicate my symptoms
- My symptoms were contradictory
- I could not properly describe what I was feeling
Eventually this led me to become very reluctant to see a doctor about anything.
Increased Severity of Back Pain After UC Diagnosis
Anyway, over the years I used yoga to manage my pain. Sometimes I only experienced dull twinges. Other times I had to take a day to ice it so I could walk normally and bring down the pain level. But it never was as bad as it was in the beginning-until I moved back home.
I had forgotten how terrible the pain was. And after experiencing that awful two week period of constant bathroom visits and abdominal spasms, I thought nothing else could be as painful. After I got stuck in the backyard on my stomach because I couldn’t get up, my parents shoved a phone in my hand and told me to call a doctor.
This time though I was armed with some new information. I had been doing some reading on ulcerative colitis and discovered that UC can affect other parts of the body, sometimes years before there are any signs of bowel disease.
Joints can be affected and in rare cases, there can be inflammation of the joints in the spine and pelvis. When I saw a doctor this time, I was still experiencing a lot of pain and he was able to better observe what I was going through.
Unfortunately, he could not prescribe me anything. All the stronger pain medications have anti-inflammatory drugs (NSAIDs) in them, which can cause bleeding in people with inflammatory bowel disease. I was referred to physical therapy, where I was told, once again, that it was SI joint dysfunction.
Finding a GI Doctor That Listened
Shortly after this I finally had my first appointment with my new GI specialist and it was wonderful because she listened to me. I brought my food journal along with me and described my symptoms in detail, along with my back issues.
She thought it sounded like I was almost reaching remission but that I needed a little push to help me along. Because all my symptoms were restricted to the lower colon, she prescribed me Colocort, a retention steroid enema.
She also thought it was suspicious that I had been having such bad back issues and referred me to a rheumatologist. The Colocort did its job and by the time I saw the rheumatologist, I was feeling great. But then my rheumatologist bluntly laid out the gist of the situation.
He told me that my options for treatment if it was discovered I had arthritis, were very small. All the medications patients normally start out on were out of the picture for me because they make ulcerative colitis worse. This would leave me with two options: Remicade and Humira.
Both drugs are biologics that block an inflammatory agent in the blood – TNF alpha – believed to cause chronic inflammation. Remicade is administered by nurses at an infusion clinic every two months and Humira is a self-administered shot taken every two weeks.
Both treat ulcerative colitis and rheumatoid arthritis at the same time. However, a lot of people do not want to resort to these drugs because they have a lot of possible scary side-effects. After the examination, I was sent to get x-rays and then I went home to await the verdict.
My story continues in Part IV – Sacroiliitis Diagnosis and UC Remission
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