Part III – UC and Severe Back Pain

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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.

Doctor Paranoia

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:

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