From colitis to kidney stones - A painful journey

I figured I'd do a post on my experience in case some unfortunate soul goes through the same experience. It is rather long so forgive me.

Back in 2010 I started having pain on the lower left abdomen. I wasn't quite able to describe the pain. I'm not sure I have a clear memory of the pain right now either but it was a mix of gnawing, throbbing and stabbing pain. It would come and go with no apparent triggers.

I generally ignored the pain as being stomach upsets, food-poisoning and the like because it always went away.

By 2012, the pain was lots more frequent and always at the same lower left quadrant. I took to the internet looking for information on lower left quadrant pain. SInce I'd had the pain off and on over  2 years I considered it to be chronic (at about the time I figured out the difference between chronic and acute pain).

In retrospect, I may have set myself up for this painful journey by first gathering information before vising a doctor. 

From my symptoms, I suspected that I had colitis and proceeded to book an appointment with a gastroenterologist who had me undergo a set of tests including a colonoscopy, urine tests and some blood tests.

The colonoscopy showed that I had what was termed as non-specific colitis. The urine and blood tests showed nothing odd.

I was started on a sulfasalazine regimen after being informed that the best I could hope for was to prevent any flare-ups and control inflamation of the colon. I started out with a one month prescription to see how I would respond to the medication. I was also put on low-dose Tramadol to control the inflamation pain.

After a month, the pain had subsided. I gradually weaned myself off the sulfasalazine and eventually forgot I had colitis. Until some time in late 2014 when the pain returned with a vengeance.

I immediately got myself back on sulfasalazine and Tramadol and repeateon the flareups and I became more dependent on Tramadol for pain control and eventually got addicted. 

It got to a point where my focus was pain management and less flare-up control. 

For most of 2015 and 2016 I quit bothering with visits to the gastroenterologist and instead spent time trying to find ways to battle pain and any remedies I could find to lengthen the time between flareups.

When reading through online forums, I always noticed that others with colitis seemed to be faring way worse than I was. My symptoms waren't so bad. It seemed all I had was mild colitis however horrid it felt to me.

Early 2017, the flareups became really bad. I was battling Tramadol addiction to boot. I was generally really sick most of the time with seemingly no breaks from the pain. I decided to switch Doctors in February.

Explaining my history to the Doctor, she decided to do a colonoscopy to check on the progress of my colitis. Surprisingly, she told me that while it seemed to cover more area than originally described, it was definitely not ulcerative and again, other than the pain, my other symptoms for colitis were rather mild - no diarhea, bleeding, rectal pain and the like. 

She decided to try Mesacol to control flareups after I explained that sulfasalazine had not, as far as I was concerned, not had any effect. 

For pain she said we should first try control cramping of my colon during flareups instead of pain meds like tramadol.

Mesacol seemed to work.The flareups reduced.

On April 15th, I woke up to one of the worst flareups I'd ever experienced. I couldn't find a position that would alleviate the pain. I was in agony. I found some tramadol I still had lying around and took 200mg.

I grabbed a bottle of water to wash down the tramadol. 

Then I just kept drinking the water.

After about 30 minutes (tramadol always took time to kickin for me) I could at least move around upright. I went and curled up in bed.

I woke the next morning once again in pain and asked a friend to take me to the doc after calling her and explaining the situation. I'd run out of tramadol so I just drank more water.

By the time I got to see the doctor the pain was a faint throbbing. She was a bit perplexed at the transformation. I basically seemed fine. The visit was pretty much uneventful.

Bless her heart, she ordered an abdominal CT scan. All these years I'd not had one. Blood and urine tests coupled with colonoscopies had always been my tests.Tunnel vision I presume.

I guess the fact that I sent myself to a gastroenterologist at the outset was in hindsight a huge mistake on my part due to the specialisation of the caregiver. Debatable.

Turns out, I had a huge kidney stone. A 4cm staghorn calculus they said. I'd say a kidney boulder!

The doctor told me she was alerted to the fact that I could be experiencing different pain but had become so accustomed to my colitis that I always assumed the pain location was lower left quadrant when it could be slightly higher. That my pain seemed to 'vanish' after drinking lots of water (something I rarely ever, unfortunately, did) convinced her that there could be something going on with my kidneys even if my urine tests hadn't picked anything up.

The CT scan showed that the Kidney stone was obstructing the ureter and causing swelling of the left kidney but allowing just enough space for incomplete blockage.

Her first assumption was that I had a struvite staghorn calculus that would eventually show to have been caused by kidney infection that people suffering from colitis were prone to.

I had open surgery to remove the Kidney stone last friday 28th March. The Urologist had planned for a PCNL surgery considered standard for staghorn culculi above 2cm. Instead, the surgery transposed into an open surgery because it turns out the stone was not struvite at all and was instead made up of a much harder composition that took more than 3 hours trying to break up. It was simply easier to expand the incisions and pull out the larger stone instead of trying to split it to 2 smaller sizes.

As I write this, I'm recouping from the kidney stone surgery. Unfortunately I had to go back for extra stitches today because I've had urine leaks over the whole week. 

The stitches seem to have fixed the issue. I had no need for a stent either.

I was worried sick that the flank sutures would have to be removed, then whatever internal issue fixed. I had thought that the Kidney itself would have had to be sutured and the leak was probably due to bad suturing. Turns out it is not a must to suture kidney incisions?? They heal on their own if small enough and that urine collection in the kidney is not under pressure??

Whatever the physiology I haven't trickled a drop in 10 hours. I'm happy.

Thing is, I've basically learnt to live with left side lower abdomen pain for over about 6 years. I has a certain feel to it.

Right now, all I can feel is the stitches as the meds wore off a while back and I'm trying to see if I can survive without taking anything else. I think I can.

I feel completely different. Obviously my pain has mostly been caused by the kidney stone that has been largely ignored and has been gradually growing into a boulder.

I'll go ahead and blame my gastroenterologist and take some blame too for not having gone to a GP first. If I had, I would probably have got rid of a tiny kidney stone years ago and dealt with what is most probably a case of very mild colitis.

Apologies guys for this long post. I felt I may help an unfortunate soul.

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