All began with an abscess...or so I thought

[MeLee38]

Hi, I am a female in my late 30's. In December of 2014 I was misdiagnosed with internal Hemorrhoids, until the pain became so bad I landed in the ER. From there I was rushed into the OR to have an abscess drained and removed from my rectum. When I woke up I was told they had cut through my sphincter muscle to get at the abscess, but surgery went well and I should heal fine. One week after surgery, I developed what I thought was a cyst at the base of my vagina which burst, massive amounts of awful smelling infection drained from it, and I ended up being put on both Cipro and Flagyl for 6 weeks. From there it was determined I had a recto-vaginal fistula. I went in for an advanced flap repair surgery in Dec 2015, once in there they discovered a massive hemorrhoid in the way, so I ended up with a Hemorrhoidectomy and flap repair at the same time. This left me in excruciating pain for almost 2 months. And once again I was put on the Cipro and Flagyl for 4 weeks. The flap repair helped some, it stopped fecal matter from draining, but I still pass gas through there, and fecal liquid if I have diarrhea. Now I have developed another fistula, this time external, but painful and draining infection all the same. Surgeon now thinks I may have Crohn's and has scheduled me for a colonoscopy and an exploratory exam (under anesthetic) where I may wake up with a seton. I already suffer from general anxiety disorder (diagnosed and managed well for almost 10 years now), and I find this whole thing has made my anxiety flare up again. Just reaching out for some online support while I have a crappy day.

 

[smt]

Have you had any other diagnostic tests till now? If so, what are their results?

 

[my little penguin]

Please know that crohns sounds bad on the Internet
Once you get the right meds ( which are different for everyone)
You can go back to normal
It just takes time to get there
Ds was dx at 7 and the first year was very rough figuring out what meds would work
But now at age 12 he does normal kid stuff

It does get better and hopefully the colonscopy will get you good results with a good plan

They may want to do imaging as well ( mre and pill cam)
Since much of the small intestine can't be seen in a scope

 

[ronroush7]

Sending support.

 

[leloupaccroupi]

Hey McLee,

I too had a perianal abscess drainage about 2 years ago, which was shortly after the time i started feeling Crohn's - like symptoms, which i had associated with food intolerances at the time. Alas here we are 2 years later and I'm going for a CT scan this weekend and a colonoscopy in April to determine whether or not I have Crohn's/colitis.

The whole ordeal was challenging at first but since late January the inflammation in my system has been ramping my anxiety up to levels i've never felt before. I hate it. It's terrifying and relentless. But we too remain relentless in our fight. No End In Sight.

You're very much not alone Hope this helps and you feel better hastily!!

 

[MeLee38]

Thank you for your responses and support. I have had a long history of on again off again digestive issues (indigestion, stomach cramping randomly, acid reflux, hemorrhoids etc), and had no clue what a "normal" bowel movement was for years. But it was always dismissed as poor diet, stress, lack of exercise etc (Since being diagnosed as having General Anxiety Disorder several years ago, it seems to be the only thing the doctors ever focus on, often dismissing my concerns). It wasn't until I landed in the ER with the anal abscess that the ball started rolling on getting an actual diagnosis, and that was because I literally lucked into having a Crohn's specialist perform my emergency abscess surgery and do my follow up when the fistula appeared. He then took me on as his patient and did my Flap repair, but at that point, we still thought the fistula was a rare instance of bad luck stemming from the abscess surgery. It is only now that another fistula has formed that my digestive issues started being questioned and the possibility of it being Crohn's has been given. Really hoping the colonoscopy and exploratory exam (under anesthetic) reveal a true diagnosis. At least I will know where to go from here, right now I am just very confused and frustrated. The last surgery put me in bed for 2 months, and on Dilaudid for the extreme pain.

 

[MeLee38]

Have you had any other diagnostic tests till now? If so, what are their results?

SMT I have had scopes, blood work several times and a CT scan. The CT scan done Feb 16/16 revealed air pockets where there shouldn't be, and signs of further infection. They put me on another round of Cipro and Flagyl following the CT scan hoping to clear it up, but then the second fistula (which was just a lump at the time of the CT scan) became larger and burst out through the skin. I had a Rigid sig this morning to check on the advanced flap repair surgery site (reason for my crappy day). Now I wait for the colonoscopy and exploratory exam to get further information and hopefully a diagnosis.

 

[leloupaccroupi]

That's just it, there's no one test for crohn's, the combination of the CT scan and colonoscopy will be extremely helpful in actually coming to a conclusion. I hope the wait isn't as bad out there on the East coast as it is here in the prairies!!

 

[MeLee38]

My Colonoscopy is scheduled for May 27, I hate the waiting times!! Was told in February it would be a 2-3 month wait. But considering some people are waiting 6 months or more I consider myself lucky

 

[ronroush7]

I like your attitude.

 

[leloupaccroupi]

I like your attitude.

^

Indeed!

The waiting and the anxiety that comes with it is the worst part (aside from colonoscopy prep, which is not terrible, but not pleasant either)

Waiting for the actual day of the procedure gets easier and easier, and time wil pass more quickly as it approaches. Just keep that fantastic mind state you're presently in rolling!!

 

[MeLee38]

A year and half later and I am preparing to go in for another surgery next week. I have undergone multiple tests (colonoscopy, endoscopy, Ct scans, MRI's) with still no diagnosis. Tests always reveal inflammation but no Crohn's in the biopsies. This surgery is to remove my 3rd perianal cyst. I have been diagnosed with hidradenitis suppurativa by the dermatologist and have begun the prep and tests to possibly be put on Humira. I continue to struggle with joint pain, fatigue and skin rashes/irritations. MY GI specialist is amazing and determined to figure this out, but it takes so much time - and waiting for answers is truly draining. Anyone else suffer with recurring cysts/abscesses? Any suggestions on prevention?

 

[ronroush7]

I had an abscess that was drained. They only kept me overnight. A week and a half later, i was back in the hospital in the same situation with the abscess. They drained it again but this time they kept me in the hospital and gave me antibiotics by iv for a week. That took care of things. I hope the best for you.

 

[MeLee38]

Mine do not respond to meds, and they are deep so they always have to excise the entire cyst and any damaged tissue surrounding it. They than leave the wound open to heal from the inside out. I say recurring cysts, but really it is a new one in a different location each time, they don't keep recurring in the same spot.

 

[Lady Organic]

hello Melee38,

which test revealed inflammation and where? colonoscopy in your colon/rectum? Did the dr confirmed Indeterminate Inflammatory bowel disease? This is when the GI is not sure if the colitis is UC or CD. A lot of people can remain indeterminate for a long time.

abscess/fistula can be first manifestation of IBD.

I think there is a good chance the Humira can take care of your fistulas as well! Humira is used for IBD.

Also something very interesting about HS from Mayoclinic:
https://www.mayoclinic.org/diseases...-suppurativa/diagnosis-treatment/drc-20352311

''In an informal study, 47 people with hidradenitis suppurativa gave up dairy products and processed sugar and flour. Of those, 83 percent experienced reduced symptoms. Also, a study reported on 12 people being treated for hidradenitis suppurativa who avoided beer and other foods containing brewer's yeast or wheat. They all saw their symptoms clear up within a year.''

 

[MeLee38]

Thank you! I have made drastic changes to my diet over the last few years. I also suffer from food allergies so some things were eliminated a long time ago anyway. I can not have tree nuts or tree fruits, seeds, raw anything (fruits or veg), yeast or lactose. I only drink alcohol maybe 1-2 times a year and when I do it is a clear distilled alcohol (vodka or white rum). I have cut out all processed foods and carbonated beverages. And although these changes reduced my cramping and diarrhea they did nothing to improve my skin irritations and recurring cyst problem.

 

[Bufford]

[QUOTE

Also something very interesting about HS from Mayoclinic:
https://www.mayoclinic.org/diseases...-suppurativa/diagnosis-treatment/drc-20352311

''In an informal study, 47 people with hidradenitis suppurativa gave up dairy products and processed sugar and flour. Of those, 83 percent experienced reduced symptoms. Also, a study reported on 12 people being treated for hidradenitis suppurativa who avoided beer and other foods containing brewer's yeast or wheat. They all saw their symptoms clear up within a year.''[/QUOTE]

When I cut out dairy and refined foods that are loaded with flours and sugars I get a very quick rising angry flare. I usually eat a gluten free one piece of bread with honey along with my egg at breakfast. But if I have a stack of pancakes and syrup along with say macaroni salad at lunch I flare up with in 24 hrs.
But if I stay on my diet symptoms go away and I can feel Crohn's free.

 

[eleanor_rigby]

Just want to add as well - the majority of people with Crohn's do not have "positive biopsies" from their colonoscopies. I did not have positive biposies but my GI was able to diagnose me based on her visual appearance of my bowel during the colonoscopy (she saw ulcers and inflammation) and because of my history.

 

[Bufford]

[QUOTE

Also something very interesting about HS from Mayoclinic:
https://www.mayoclinic.org/diseases...-suppurativa/diagnosis-treatment/drc-20352311

''In an informal study, 47 people with hidradenitis suppurativa gave up dairy products and processed sugar and flour. Of those, 83 percent experienced reduced symptoms. Also, a study reported on 12 people being treated for hidradenitis suppurativa who avoided beer and other foods containing brewer's yeast or wheat. They all saw their symptoms clear up within a year.''[/QUOTE]

When I cut out dairy and refined foods that are loaded with flours and sugars I get a very quick rising angry flare. I usually eat a gluten free one piece of bread with honey along with my egg at breakfast. But if I have a stack of pancakes and syrup along with a rich fatty sandwich at lunch I flare up with in 24 hrs. One small burger is okay, two are too much.
But if I stay on my diet symptoms go away and I can feel Crohn's free.

 

[MeLee38]

Talk about frustrated, my surgery on Monday was cancelled after I registered, was prepped and sat waiting for 5 hours! Apparently there was complications in the OR which forced my surgery to be bumped. So now I have to wait another 3-4 weeks for them to get me scheduled back in.

Since my surgery was cancelled my specialist got me in for another colonoscopy - done yesterday, and this time they found 6 ulcers in my ileum and a polyp in my rectum. So now I wait for the biopsy results.

 

[ronroush7]

Talk about frustrated, my surgery on Monday was cancelled after I registered, was prepped and sat waiting for 5 hours! Apparently there was complications in the OR which forced my surgery to be bumped. So now I have to wait another 3-4 weeks for them to get me scheduled back in.

Since my surgery was cancelled my specialist got me in for another colonoscopy - done yesterday, and this time they found 6 ulcers in my ileum and a polyp in my rectum. So now I wait for the biopsy results.

Hoping the best for you.