My Surgical Journey With Crohn's

Surgery is hard. With my Crohn’s I have lost track with the number of times I have had to have some sort of surgery. Whether that be major, life-threatening or secondary surgeries, I have had many and with each and every one of them there is either a short or long recovery.

Sometimes recovery didn’t work and I’d be back in for more surgery. Having said that, I have eventually recovered from them all, but some took longer than others. The scars on my body are a roadmap of my surgical journey.

My first surgery

My first was a life-threatening bowel resection only a year into my Crohn’s diagnosis. My small intestines had abscessed and had also adhered to each other. I should have gone to the doctor sooner thinking that the pain and a large lump on my abdomen would “go away”, but after the surgery my doctor told me that it was close to bursting.

A nurse told me something while I laid there recovering that I have used as a mantra for the better part of 34 years, “sooner you are up, the sooner you are out”, meaning the sooner I can get up out of bed after surgery, the sooner I can get out of hospital. This was good advice, except that just 11 days later I was back in for more surgery as I had developed a grapefruit-sized ball of pus at the surgical site.

Bowel resections

On the plus side, the surgeon cut along the same 8-inch line as previous and future resections have been used on the same site making recovery easier. One thing I remember is sitting up for the first time after resection how it literally took my breath away as I sat up.

I have had 6 bowel resections over the years (a total of around 60 days in hospital) and each one was easier than the last, though with each one, new scars emerged from cuts, tubes and drains.

Surgeries related to Crohn's

Other surgeries related to my Crohn’s have included perianal abscesses, fistulas, and fissures where simple incision and drainage was needed (while under sedation thank God) but sometimes led to having to have a seton placed so it could heal from the inside out. It was already uncomfortable and painful having perianal disease but add a seton placed there on top of that just added to it.

I found that of all my surgeries, the perianal ones, were the hardest to recover from I think simply because of the location and the fact that no matter what I did, sitting, standing, walking or lying down, there was no way to be comfortable.

Kidney stones removal

Kidney stones became a problem (dehydration, malnutrition) which led to surgeries to have the stones removed. A couple of times I needed to have stents placed inside from the kidney to the bladder.

While recovery for these were the easiest, having the stents removed were uncomfortable as they were just pulled out through… well you can guess where.

Ostomy and proctectomy

My latest, ostomy and proctectomy (rectum removed) surgery I thought would be the hardest to recover from and I did lots of research in the recovery process. It turned out not to be so bad, for me.

I advise others NOT to go by what Google tells you but to talk with your doctor and others who have had the surgery instead. Google has some scary results which are not the norm.  

In the last three years, I have had three ostomy surgeries, one temporary (to heal the perianal disease before proctectomy) and two revisions but all have healed nicely. Except for going into kidney failure soon after the temporary ostomy as I was losing too much fluid and did not realize it was affecting my kidneys. Luckily my kidneys bounced back enough to have the permanent ostomy and proctectomy surgery (I was in hospital for a month) and it took two years to get them back to “normal”.

I still need to have blood work to check them every 6 months, plus I drink around 96 ounces of water every day. It was difficult for the proctectomy to heal properly mainly because of its location, but it eventually completely healed after about 6 months.

The toll of surgery

A total of around 25 different surgeries over 15 years I think. Some were “easier” than others and some were difficult and long but I eventually recovered. Mentally it took its toll at times and sometimes recovering mentally was/is harder than the surgery itself. Sometimes I just wanted to give up.

Thankfully much of the surgeries done today for inflammatory bowel disease (IBD) can be done laparoscopically and you will not have to be cut open like I was multiple times. My ostomy surgery was done laparoscopically but because of adhesions my talented surgeon took 6 hours to complete it, carefully and painstakingly separating my intestines from each other millimeter by millimeter, so never had to slice me open.

Relief, but not a cure

Many with IBD may never have to have surgery and can manage symptoms with medication or a combination of medication and other factors. Thankfully though there is a surgical option. The surgeries helped relieve the longstanding pain but it is not a cure for IBD.