Hi Manitourose,

Yes thanks! All healed up thanks! Still get some pain tho but apparently that's just the scar tissue! It's been 4 months now! How did yours heal? Did you still get any pain etc once wound healed?
Thanks
Alex

October 2014 - Under immense stress finishing up grad school I notice things don't feel great. Seemed like hemorrhoids, don't recall bleeding or that sort of issue. Booked an appointment with a new CRS due to yet another move. She says its small internal hemorrhoids and a "deep internal fissure". She suggested that she could see the fistula scar and no issues were present with that. Given hemorrhoid cream and diltazem for the fissure.

Before my fistula surgery in June 2014, I recalled issues here and there in my life with what I now know are fissures but out of the 2 CRS's that saw me for the fistula neither noted a fissure. So the actual diagnosis of a fissure came 5 months post-fistula surgery.



Jan- 2015 - Feel fairly healed up. No issues.

June/July 2015 - Notice bleeding and soreness again. Resume diltazem treatment, goes away again.

October 2015- Have a horrible bout of IBS issues starting in late Sept. See my new PCP regarding it. No issues at the time of doctor's appointment with the bum, but had lots of alternating bowel patterns loose then straining (worst plan ever with a fissure).

Mid-late October notice fissure bleeding and first time muscle spasms (random when it happens). Possibly increased anxiety with everything I recognize I am tight and tense all the time.

Beginning of November - Start probiotics which has helped the IBS tons. Still some straining.

November 14th - bleeding again, for some reason frightens me more than normal perhaps my anxiety it getting the best of me.
November 15th - Start Miralax
November 19th - Week had been good, feeling less tense and sore. Miralax helping a lot with morning BM, now predictable and soft. No bleeding until today when I had a more urgent 2nd morning BM :-(

Continuing to eat very well (always have), increase water and try to decrease stress. See my PCP again Monday. Going to get a referral to Dr. Feingold and see if we can continue with conservative methods for awhile. So overwhelmed,scared and disappointed after recovering from a fistula surgery.

Saw my PCP today. Brought along my fiancé who probably knows more than me as far as what is going on having been through my many CRS appointments and fistula surgery.

Well he'll write a new script for the diltazem until I can get into a CRS. He highly recommended someone, but I can't get in till Dec. 18th. Thanks my fissure for continuing to screw with the holiday. ;)
I also left a VM with Dr. Feingold's office to see if I could get in sooner.

PCP said he was concerned that I have had a random fistula, which was surgically repaired, now an on and off fissure. He's the nicest guy but my sense of hope for a normal life is continuing to fall apart.

Still having to strain (trying so hard not to) with some BMs due to cramping and every other day bleeding. I give up! Boo!

Hard to believe it's been so long since I began this journey. More frustrating that I am still on this journey with ever changing issues. It began with a fistula and possibly previous to that undiagnosed fissures. Fistulotomy which healed well. But the ever present stomach and bowel issues.

After a parade of doctors I finally was diagnosed in Dec. 2015 with celiac disease. It is unknown how long I have had it, whether it be the last 5-10 years or a lifetime. In any case, it is an autoimmune disease which stops my body from being able to breakdown the proteins found in gluten (in the forms of rye, wheat, barley --its in SO much --sigh!!--). It was discovered through a blood test that indicated I was making an insane amount of antibodies because my body was attacking good cells. A gastroenterologist confirmed it through an endoscopic biopsy of my small intestine which showed significant damage and flattening of the villi that help process and digest food.

Celiac disease answered a lot of bowel issue questions -- alternating bowel patterns, undigested food, no major changes no matter how healthy I ate or how much fiber I got.

I am STILL dealing with a fissure. I did see Dr. Feingold and he indicated the fissure was likely being caused because of my scar tissue from my previous fistulotomy. Softer skin I suppose? At any rate he was anxious to suggest surgery and this was before I knew I had celiac. Given that I am not ready to hop into jackknife position in an operating room again anytime soon I'm living with the fissure instead. I'm also hopeful that giving myself a few months of treatment for celiac may help. I am already having normal BMs for the first time in about 10 years.

However, the new dilemma I face with this dang fissure. The itch! Seriously, I've been on and off with a fissure and had a fistula. Why is it in the last month I'm facing this new issue?

I'm over it, exhausted and tearful. There have been days I get spasms (also something newer but not often) that are so painful and happen about 2 hrs after the BM that I nearly jump... while driving. NOT GOOD!

I hope there is an end. For now I am just grateful to finally have 1 piece of solid information about why my bowels have been so messed up. The next step is a colonoscopy to rule out IBD and other issues. Fingers crossed. My life has changed so drastically in the last 2 years and I have barely had a chance to truly live. My engagement is on hold, my job as an occupational therapist. I don't have a solid group of doctors b/c of where I have moved to and insurance being so crazy where I am. I need stability... don't we all?
Hope everyone is hang in there. I needed to vent.

Updating again but not with much news.

Finally got some of my insurance sorted and can get the colonoscopy done April 1st. I just want it over!

My fissure which is on the scar tissue where I had my fistultomy had felt like it was healing. No pain and no blood, then had a few days of 2-3 BM's and the burning began again. It's as if it gets retorn and then takes another 1-2 mos to make progress in the right direction. I'm at my emotional end lately and in tears so often. This ongoing saga has really impacted my life. So many days I can't sit or stand long periods, I need ideally to be in a place where I can do what needs to be done (bath, heating pad, sit/stand).
I can't begin to tell you the devastation it has had on my confidence in my new career which I haven't been able to start due to all this drama.
Because also have had some right pelvic area pain and the ongoing fissure and random fistula back in 2014, they want to screen for Crohn's. I know people live with it and I know we've had members diagnosed. I know mentally I'm drained and with my age (37yrs) and the impact this has had on my career and relationship that I'm extremely emotional (anxious and depressed). I am still seeing a counselor and just feel like I can't get a leg up on life lately.
Right now I am sitting here with the typical stinging pain that lingers after a BM that happened hours ago. I use the prescribed creams. I'm having normal BMs. Ugh why is my body going against me!

Ok guys, I needed to vent and if I could I'd have a good cry and accept hugs. We have low points and this stuff really take it's toll. I'm scared, overwhelmed, exhausted and more. I can't see a healthy bum or tummy anymore because this has gone on for SO LONG.

Thanks for letting me virtually cry. :-/

Sending you huge virtual hugs and tons of support. I am so sorry to hear how difficult and painful things have been for you of late. I can fully understand the complete mental and physical exhaustion of it all.

Don't prejudge your outcome -- the past is not necessarily and indication of the future. I really know how hard it is to see a bright, pain free future when you are in the middle of it...but you owe it to yourself to take this one day at a time and one moment at a time.

I know this is not a fix -- but have you checked out the book "You are not your pain"....it was somewhat helpful to me in my extreme pain days. Some times changing perspective is helpful...I know it is sooo hard when you are confined because of pain...but if you can simply get out of your house/flat and breathe deeply in a different location a couple times a day and tell yourself that you are healing and repairing and getting better each day....as you know, you will not be able to measure your progress on a day to day basis -- but week to week and month to month you will get a sense of your progress (specially if you keep a journal of sorts to help you monitor progress).

Bottom line -- i am very sorry to hear that things right now are not good....we are all here for you...so let us know how you are doing and know that you are not alone in this struggle.

Canadabum

You are so right Canadabum and boy do I appreciate your response!
I am going to look up the book now. Dealing with my new autoimmune disease I have been hoping to find something to keep me in a better mindset as I await more tests and adjust to the fact that giving up gluten does not magically heal me.
I think a journal is a good idea too because we only know what is present at times or the fear of the future, it's hard to see the small progress.

Thanks again. I needed this support!

Hey Manitourose...I hope your lack of posts means you are focused elsewhere. I just wanted to check in and say hello...see how you are doing.

-CB

Update -- 2 years and 2 months post fistulotomy.
I can't believe it's been 2 years since I first came to these boards! 2 years later I FINALLY have an answer and what I find frustrating is that it was not an answer anyone was looking for. I saw the best of the best doctors in my areas and what I had going on was not widely documented.
I was living with seeing a CRS every few months. Had a few deep anal fissures (after having a fistula surgery) that would NOT heal. I would bleed without even using the restroom when I'd wipe. Frankly, I was terrified. The only suggestions were more and more surgery.
Finally, I saw a gastrointestinal doctor. Like everyone else he said in the room "I think this is Irritable Bowel Syndrome" but let's run blood work. Result was - Celiac Disease.
Had many tests run and an intestinal biopsy to confirm it. Also had a colonoscopy to rule out/in Crohn's and other items.
Nothing else showed up. Turns out celiac disease was not only destroying the villi in my intestines, the lack of being able to break down food the same way as everyone else was causing damage on the other end.
I'll be going to Columbia University down the line to share this information, as they have one of the most world renowned celiac clinics and research centers. As well as speaking to Dr. Feingold, the well respected CRS, who also saw me to help them link this information. Because not enough data is present, it's not a connection that was seen, known or considered.
I wouldn't advocate that this is the course for everyone. I was unique perhaps in how my body was responding to celiac disease. So this is not advice to go gluten free and your concerns will be gone. It's a reflection from me that the answers may not be what they seem. They had to look at me as a whole person I'd say to figure things out -- detective work I suppose as no one was really sharing information or linking things.
I've been diagnosed with celiac disease for nearly 9 months! Which means I've had to be gluten free for that time and for the rest of my life. With celiac, even sharing the same knife or toaster as someone who has gluten makes me ill. There are a number of other health issues that I end up with that were previously tossed into the kitchen sink pile that come up when I do get "glutened" as they say.
BUT 9 months later, I am fully healed on the anal fissure/fistula end of things. It's slightly shocking to me actually. Though I still content with scar sensations and winces of pain with skin stretching, it's crazy. With the scar tissue I am likely to experience issues again under the right circumstances (childbirth, pregnancy, food poisoning/stomach flu).
I'll always do my best to check in here because I will never forget this journey. This board saved me honestly and was a friendship through the interwebs I desperately needed.
So here's hoping my next diary update is still about good health! :)

Hi Manitourose
How are u going now? Any new issues or ongoing ones since your last post?

I had my simple fistulotomy 2 days ago. And just reading up on this forum now about how ppl are dealing with the post op BMs and cleaning.
Did u find there was still some stool particles stuck on the wound after sitz baths? Im having sitz baths after BMs but it doesnt seem to clean the area completely... im very worried that it may result in an infection. .. any advice is appreciated. Thank you