Crohns Disease and surgical fistulas

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New Member

Date Joined Apr 2017
Total Posts : 1
   Posted 4/24/2017 1:14 PM (GMT -7)   
I am a 46 year old woman diagnosed with Crohns disease @19 years of age. I had a resection when I was 29 and @ 36 I presented with a twisted bowel (with bowel to bowel fistula). This surgery went badly, I got septecemia (unsure of spelling, apologies) and my organs proceeded to shut down. Long story short, in a coma on life support for 3 week, 11 weeks in hospital, a colonoscopy bag, a long road to full (such as it is) recovery. This was deemed medical misadventure.
In hindsight I had not managed my Crohns well nutritionally and while I wanted to heal myself naturally (I was the bane of my gastroenterologist's life) and this may (or may not) have helped, nutrition wasn't where it should have been in the list. This changed dramatically after this incident and as far as my Crohns disease goes I have been very well particularly in comparison to prior years.
When I left hospital I had an infection in my wound (breast to groin cut) and once the stitches came out, the wound opened back up in three places and took a good 8 months to heal.
I continued to have issues with the scarline becoming red and inflamed until 4years ago after months of internal pain, a sore risen scarline, and what appeared to be illness (high temp, vomiting) , one of the subsequent weak spots opened up (after forming a large boil like top), a black suture popped out and began to ooze. I was hospitalized and a blocked bowel (believed to be the case due to the pain and vomiting I was experiencing) wth subsequent fistula was diagnosed. An MRI was performed but I had so many surgical clips (10 counted) that pulled once inside and I had a panic attack at the space (have had claustrophobic issues since the coma) and they brought me out early and this was deemed an inconclusive scan. I left the hospital on an elemental diet and on Humira. The fistula expelled another black suture after helping and reopening along with a long clear suture that hung from the scarline and did not fall out for weeks. Eventually this healed. It's important to note at this time that my gastroenterologist wasn't convinced that it was Crohns related but the surgeon I was under disagreed and I had stated more than once that what I had Been experiencing didn't feel like anything I had experienced with my Crohns pain wise.
I had also been experiencing pain internally that I believed to be mesh that I was told when transferring hospitals was in place in my abdomen. I have since been told that this was all removed but have felt 'something' abnormal and uncomfortable, at times painful.
I continued to have issues with a sore scarline but have been extremely well re Crohns, feeding myself as such, with raw foods, putting on 9 kgs (something that does not happen for me when unwell with active Crohns). Once again the same weak spot opened and proceeded to expelled a suture, this continued oozing with subsequent healing and building up and opening again. The other two weak spots opened as well with the same occurring, surface healing, a building up and then pouring out of disgusting rotten meat smelling discharge. I was convinced I could feel something moving and then would have a show of fresh blood out of the holes. I sought GP advice and had months of differing antibiotics, specialist referrals (being told it's my Crohns and to live with it ), my new gastroenterologist though was not convinced as scans showed no chance in my Crohns and I was very well re weight etc. This went on for over a year with sooo much time off of work with sepsis to the point that I was hospitalized again two weeks ago. A fistula gram revealed no bowel connection, no fistula and a pouch that the pus was coming from through what became deemed as sinuses. At this point I had an extremely sore, hot to touch palpable 'lump' as such. It hurt to bend and pushing at one end felt like a sharp object pushing into the skin. I am convinced that this is 'something' retained from those past surgeries, a small piece of mesh perhaps.
I had scan after scan that proved no bowel connection but the surgeon was not willing to deviate from this view because as she blatantly stated, she did not know what was causing this if she could not prove it was Crohns related. Only in the last scan did they even look at the sore risen 'bump' and they came back saying that this was a small build up of soft tissue that may or may not hold a foreign body. Another (bowel) surgeon was brought in to look and while she promised fresh eyes still was talking Crohns related 'somehow'. She came back with the diagnosis (after discussing with previous bowel surgeon, so much for fresh eyes) that the sore spot she suspected was a developing fistula but they were not willing to do an ultra sound or another MRI under sedation (as previously discussed once the soft tissue was looked at) as it wouldn't show anything more. I left with a drain, no answers as to what is causing the now diagnosed sinuses and once again told that somehow (possibly, probably, maybe) this was my Crohns. I am seeking another opinion as I am far from convinced and felt that as soon as a possible foreign body was suspected I was told that it was my Crohns again. Once again important to note that this hospital was responsible for the past medical misadventure and I have been told that no surgeon there is willing to go into my now 'hostile' abdomen...
I am simply, after such a long background, wanting to know if there is anyone out there that has experienced similar symptoms and it has Bern found to be a for body or an abscess from retained Bacteria from the surgery infection and not at all a side effect of inflammatory bowel disease.I truly believe that this is something else....

Veteran Member

Date Joined Oct 2006
Total Posts : 2079
   Posted 4/26/2017 2:19 PM (GMT -7)   
Hi and welcome to the forum. I'm not here often anymore, but wanted to answer your post, though I don't know if it will help in any way.

I'm really sorry that you've been through the wringer with your disease. I know there have been incidents where foreign objects were left in the abdominal cavity after a surgery so I understand your valid fear. I think any metal object would clearly show in an x-ray, though I don't know about other things. I think a surgical tech (unsure of the correct title, but I once knew a woman who had that job) is supposed to count all instruments/objects before and after a surgery to make sure everything is accounted for, but obviously it's not always done the way it's supposed to be.

Now I know personally that adhesions that develop after a surgery can cause some very uncomfortable pulling and tugging sensations too.

Before I got properly diagnosed, I became extremely ill with a flare when I was in my mid-30s and did develop sepsis, but even my worst wasn't as bad as what you described - and still it was bad. No coma at least. It took me well over a year to get back on my feet. I have very mild aphasia due to it, but it's no big deal.

I experienced an infection with my colon surgery at the drainage port while hospitalized, but it resolved before I went home, thanks to a diligent head nurse who forbade anyone else touching my dressings after she discovered I was infected and the other nurses had not mentioned it.

I also had a niece whose C-section was infected from the get-go and she spent months going to her doctor's weekly where they would have to clean and drain the incision, basically letting it heal from the inside out. Your description also reminds me of her experience. Your speaking about the sutures coming loose and working their way out did make me also wonder if you were on any type of steroid for your Crohn's or another illness since I had a similar incidence with a surgery. I had been on steroids for over a year when I had gallbladder surgery and my sutures came loose and I developed holes where they were that wouldn't heal properly. Steroids interfere with healing, but I think other immune system depressants can too.

I know my experience is minimal compared to yours, but I just wanted to welcome you and say I can understand where you're coming from though I don't have anything particularly helpful to say. -Joy
Female, late 50s--CD over 45 yrs; Hemi-colectomy '01; spinal cord injury '01; fistulae since '97; enteropathic arthritis
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