Fistula questions

[Stacy0w]

I figure background is helpful. Diagnosed with celiac and Gluten-Free for 5 yrs. Dairy free for 3 years. In September I noticed a small hard lump in my butt cheek. Diagnosed cellulitis and antibiotics for a week. Felt better for a few days then worse. Ultrasound of lump in October. Mid-October was told it was a complex cyst and needed to be removed. Surgical consult the end of October decided to wait and see. Issues throughout November. December it went bonkers and was abscessed and on Dec 10 it was removed. Surgery was awful. Cyst removed and two drains were placed. Meds (tons more antibiotics and pain meds and nausea meds) didnt agree with me. Had to stay over due to low blood pressure. Here I am almost to February and still having trouble so now I have my third post op appt coming up next week. They feel there is a fistula they couldn't find during surgery due to the large amount of inflammation which would mean another surgery to repair that. Wondering about the possibility of Crohns or if celiac could make it more likely to have issues. Stool is currently sometimes thin or flat, loose and piecey. Was fine for a few weeks after surgery. sigh. Just looking for more info before I have my appt so I can go in feeling knowledgeable enough to know what I want to ask. You all are always so helpful. Thanks.

[cyclinglady]

I am sorry that you are going through this!  

Your stool?  Maybe due to your medications (allergies or side effects).    I assume you verified that everything is gluten free.  

Cysts?  I just had two removed from my tonsils.  Yep, super weird location.  Super rare!  Why?  No one knows!  

You probably heard my story about my tooth infection, rounds of antibiotics, the flu, and a cold all within weeks of each other.  All my autoimmune antibodies were off the charts.  I was a mess, especially after developing autoimmune hives which lasted over six months.  But with time, I healed.  

My niece who does have Crohn’s, did have an ovarian cyst this year that ruptured.  But she has other family members who had them and they  did not have Crohn’s or any other autoimmune.  Just genetics and the luck of the draw.  

I just chalk it up to Autoimmune in terms of my severe reactions and move forward.  

Hang in there!  

[Stacy0w]

That makes me feel a bit better. My mom and sister have had cysts too so maybe we are just a cysty bunch. Too many antibiotics (three rx and an IV) and the stress and infection (I left out the abscess part and edited above) are maybe just keeping me down physically and when I get down I tend to get down emotionally too. To the best of my ability it seems that my meds were Gluten-Free, but honestly the hospital was not knowledgable about celiac and gluten.

[cyclinglady]

Yeah, despite my going to five pharmacies trying to find a gluten-free antibiotic, I think it was the antibiotic that got me.  I choose one off the gluten-free pharmacist list only to find that my medication was not manufactured in Spain, but now Romania.  Further research this past year, I have found that ALL antibiotics (generics) are made in China or are fermented (raw materials) in China.  The US, Europe, Japan all no longer make the raw materials to make antibiotics.  (Yeah think this might be a National Security problem for us?)  Who knows if gluten was in my antibiotic?  I can not say for sure, but I did not go out nor did I change my diet and my antibodies were off the charts at the time).  It is another unsolved mystery.  

When my hubby was hospitalized, I had to work with the pharmacist who was helpful,  but surprised that verifying a medication for gluten is not easy and it is time consuming.   I looked up medications and re-verified them because the hospital changed suppliers while we were there.  Luckily, the nurse worked with us.  I hope the the Gluten Bill gets passed in the Senate!!!  Please!  

Edited January 31, 2020 by cyclinglady

[Stacy0w]

As soon as I got to the hospital I told everyone about no gluten and wrote it on everything, but post surgery they tried giving me crackers and none of my meals were ok. So odds are good something they gave me might have been gluteny. I was in no place to figure anything out. I was admitted and given some type of antiinflammatory, and IV for fluids, antibiotic (which I told them made me feel weird) and a steroid for nausea along with nausea meds and an ear patch for nausea as well. All that before surgery even started. I say all that to explain why I'd love a gluten free bill to pass. I have no real idea what any of all that mess was and during the surgery was more meds and post op was an additional antibiotic and pain meds. Who knows. I never take more than one tylenol at a time so all that really didn't set well with me. Follow up Wednesday and I'll try to update here. You've always been so helpful!

[GFinDC]

Fistula's are more associated with Crohn's than celiac.  So that would make me suspect you may have Crohn's as well as celiac.  My brother had that combo.  Fistula's can be deadly so they are something that shouldn't be ignored.  I hope your doctors come up with an answer soon.

[drdeb]

On 1/31/2020 at 7:40 PM, GFinDC said:

Fistula's are more associated with Crohn's than celiac.  So that would make me suspect you may have Crohn's as well as celiac.  My brother had that combo.  Fistula's can be deadly so they are something that shouldn't be ignored.  I hope your doctors come up with an answer soon.

Hello!  A newbie here after a recent diagnosis of celiac disease.  I was finally diagnosed with collagenous microscopic colitis in 2007 after decades of digestive misery.  I am responding here because when I was 22 (I am now 68), I developed a rectal fistula, and had surgery for its removal.  Wish I knew more but I have always suspected that there is a relationship between Crohn's, MC and a Celiac condition.

[Stacy0w]

Figured I'd update since I find it annoying when people vanish and you don't know what happed to them. Dr said no to the endoscopy because I've only had one fistula and he isn't treating me for celiac so no. I expected it, but the medical and insurance hoops you have to jump are ridiculous. They did surgery on Thursday to hopefully fix me up this time. Changed up my procedure from the one you slice the fistula to make it flat and instead used a plug. If you have any bad stories about those please don't share because it'll just freak me out and it is already done. Told anesthesia about how awful recovery was last time and she decided to have a consult with everyone in anesthesia and way scaled back my anesthesia meds so I was able to go home instead of spend the night. That was my win. 

Thanks to all who chimed in here.