ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

My discovery of Crohn's as underlying cause of my chronic fissure.

Do you suffer from Crohn's/Colitis or IBS. If you are looking for info on how to deal with an anal fissure with these ailments, or just wanting to share your experiences, then this is the place.

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ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby ruffledtailfeather » 22 Jul 2016, 13:41

Hi! I have been referencing this forum for a long time as I've struggled with a chronic anal fissure. Many of your thoughts, experiences and suggestions have been so reassuring and helpful for me as I've slogged through this situation. After 8+ drs, and many many appts, I finally am on a path to a fissure solution so I want to share in hopes this helps others.

I've found we each have to be our own warrior champion for our health, and it can be really disappointing to get seemingly endless no's, dismission, or general lack of thought/attention towards your medical situation. So hopefully this will encourage you to keep pushing your doctors, don't give up on healing, and maybe useful for one or two ppl to explore Crohn's.

If you want any details on my earlier experiences that I won't go into detail about here, I am more than happy to share. Just post a question and I'll answer as soon as I can.

BACKGROUND:
- I've had my fissure for over 3 years now. Have had 2 botox injections and 1 Kenalog injection. Have worked with 4 colorectal surgeons in NYC (Alex Ky-Miyasaka, Mt Sinai | Daniel Hunt, Parul Shukla, Weill-Cornell | Daniel Feingold, Columbia)
- Separately, I've been struggling with gastric issues (extreme bloating, manageable constipation) and am now on my 4th Gastro Dr in NYC. (usually the drs are either initially or reach a point of dismissiveness. I refuse to give up so I keep pushing forward which has required new drs)
- I became vegan 9 months ago, and have worked with a nutritionist testing a strict low FODMAP diet for impacts. The diet was a non-factor. Being vegan has tremendously helped with constipation and thus anal fissure pain during exits.
- I add in a few over the counter pills daily: ~3x daily I take 2 Citrucel pills for fiber (even though I eat basically only vegetables I've found these pills make a positive difference). Every night before bed I take 2 400mg Magnesium pills and 1 Colace. This vegan/pill combo works for me extremely well. (you can even increase Magnesium pills if you need to)

THE LAST 5 MONTHS
I had the Kenalog procedure with Dr Feingold in March.

At my next gastro appt with Dr Oneto of Concorde Medical Group, (at the time this was only my second visit with her, she was highly recommended to me by my nutritionist at Weill-Cornell) I mentioned to her that I'd had a Kenalog injection for a chronic fissure, and Feingold had discovered and fixed a fistula. She was very responsive on this, wanting detailed info on where the fistula was. And then she told me that in her understanding of chronic fissures (with the caveat she's not a colorectal specialist) that there are really 2 causes. Either you have the worst luck in the world, it's a ton of scar tissue or just not healing, or, it can be related to Crohn's. And that you'd need a colonoscopy to determine.

2 MONTH KENALOG PROCEDURE FOLLOW UP WITH FEINGOLD
At my 2 month follow up I felt like my fissure was healing. But I did ask Feingold for details on the fistula location and mentioned my gastro dr had raised the very minor possibility of the chronic nature of the fissure + a fistula being an indication of Crohn's. He was very adamant that I did not have Crohn's, the fistula had been located near the fissure, rather than in highly-typical 'Crohn's-type' locations. He was very opposed to me having a colonoscopy, literally saying that gastro drs only make money if they do colonoscopies, so they're just recommending this for me and it was almost certain post procedure they say 'well, great news, we didn't find anything so you don't have Crohn's' and yet I would be left somewhat annaly devestated with a much worse fissure and extreme pain that he'd then have to fix. So in consideration of that, and the fact that I still was only 2 months out from the Kenalog procedure and should continue the healing process, he said at that time he would not give his approval for the procedure. If the fissure had healed at the 4 month checkup he would approve a colonoscopy if I still wanted to do it.

GI DR FOLLOW UP
Shortly after I had another appt with Dr Oneto, and relayed the fistula location, the topline that Feingold did not believe it indicated Crohn's, and that right now with an active fissure he didn't approve of a colonoscopy.

Oneto agreed with his assessment that the fistula was not in the location the location typical of Crohn's. However, her opinion was a 3 year fissure is extremely abnormal and if my fissure was not healed soon then at minimum I should rule out Crohn's as a factor. (by this point I was seeing blood so I was pretty sure the fissure had not healed) Apparently if a fissure is caused by Crohn's you (most likely) have to address the Crohn's in order for the fissure to heal. She said if it hadn't healed by my 4 month follow up with Feingold she highly recommended we do a colonoscopy.

At this point, feeling completely overwhelmed and extremely sick of battling this fissure situation, I asked her if it was really that big of a deal, if some ppl just say 'forget it!' and live with a fissure. She was very firm in her absolutely not response. And then asked if I'd be open to getting another opinion from a Colorectal surgeon she'd worked with who had a great track record. This Colorectal surgeon is loosely associated with the nickname Anal Whisperer.. I said sure, figured it'd be worthwhile to hear this dr's opinion before my 4 month with Feingold.

So I made an upcoming appt with the new (my 5th) Colorectal Surgeon, Dr Marsha Harris, affiliated with NYU.

5 ULCERS
About 3 weeks later, and before either Feingold or Harris colorectal appointment, I had an instantaneous onset of severe abdominal pain. (I think for at least a month I'd been ignoring really minor feelings of nausea, but it was no big deal at all) This pain was absolutely unbearable for about 36 hours, then went away more or less. After blood work, a contrast CT scan were negative, I had an endoscopy. Unfort this all happened right when Dr Oneto started maternity leave, however her colleague at Concorde, Dr Morganstern, picked up my case immediately and was incredibly attentive. He communicated with me constantly and was very proactive. The endoscopy discovered I had 5 ulcers in my stomach. Over the next week they ruled out all normal causes of ulcers and put me on meds for the time being.

NEXT COLORECTAL APPOINTMENTS
The next week I had my second opinion consultation with Dr Harris and the 4 month with Dr Feingold on the same day.

My July 4 month follow up with Dr Feingold confirmed my opinion that the fissure had not healed. After the typical spread cheeks and look examination his feedback was the fissure was partially healed, and just had a bit more of a way to go to fully heal. (basically confident it was in the healing process) He recommended I have another Kenalog injection to finish the job - he had had several patients do this and fully heal as a result. When I asked what percentage had healed, he couldn't answer specifically but just said it looked a lot better. Now, to be totally transparent, I found that unreassuring. He has had to see dozens/hundreds of fissures and anuses from March to July... I don't believe you remember mine enough to judge healing by memory recall. And, you don't have notes on initial size to compare it to at least give me some reassurance you know what you're talking about..?

I presented my post op papers from the endoscopy and asked if he felt like the ulcers, my crazy bloating, constipation, and fissure could all be related. Feingold was pretty dismissive of this, saying definitely the ulcers were unrelated, and again reiterating that I'd be in severe pain if I had a colonoscopy, and again saying it was highly unlikely I had Crohn's. He did mention that there are many ways to evaluate for Crohn's and the drs should try other methods than a colonoscopy. We ended with a strong recommendation for a new Kenalog injection.

Meanwhile right before Feingold I had seen Dr Harris. First we met in her office and I talked her through all of my fissure-healing pursuit, plus had all my records. She said it sounded like I'd done everything patient-possible to promote healing, and so we needed to do an exam. Her exam is different than any other doctor's I've experienced. Comparatively, it's much more in depth, you're in that knee-chest position elevated on a table, and she's looking at multiple things internally and externally. Despite the fact she used a speculum (I think that's what it is) and her hands, my fissure did not tear further (evidence is just 1.5 hrs later Feingold saw it and said it looked good) and I experienced nearly no pain.

Dr Harris is very comfortable to deal with in the exam and in her office. Net net of her exam was she saw zero evidence of healing tissue, and thus had no indications that this fissure would heal on its own. For all the same reasons Dr Oneta mentioned, she highly recommended I have a colonoscopy to rule out Crohn's as the reason the fissure would not heal. She was strong in her opinion that it was negligent to do any further surgeries or procedures without ruling out Crohn's, as they'd be in vain should I be positive for Crohn's. If Crohn's was negative then her recommendation was I'd need the skin graph surgery to heal this due to lack of tissue. She had worked with Dr Oneto and Dr Morganstern several times and we left it at she was going to follow up with Dr Morganstern and discuss her thoughts on my case.

COLONOSCOPY
Dr Harris & Dr Morganstern's collaboration was so unusual and reassuring. The following morning Dr Morganstern called me to recap his convo with Dr Harris; he agreed with her assessment on the fissure and determining if Crohn's was the cause. Plus said we hadn't been able to determine a cause of the ulcers so at that time he recommended we do a colonoscopy and follow up with a capsule endoscopy if needed. I shared my experience with Dr Feingold (his opinions and my extreme concern about further damaging the fissure). Dr Morganstern responded patiently, logically, and ultimately balanced out that a colonoscopy was the best next step. It's interesting to note that Dr Morganstern, Dr Oneto and Dr Harris all said they had done many many colonoscopies on patients with fissures. As long as the dr is careful and gentle the fissure shouldn't worsen.

I was pretty anxious about further pain, but weighing my gut instinct I decided ultimately I trusted these drs enough to move forward with the colonoscopy. The prep was moderately painful as it always is for me prior to any of the procedures. Dr Harris and Dr Morganstern happened to overlap at the Kips Bay Endoscopy Center where I had the colonoscopy done, and had discussed their thoughts/needs just prior to my colonoscopy. Despite the fact my colonoscopy lasted nearly an hour I experienced nearly zero increase in pain and discomfort after the procedure. The colonoscopy results were all negative, visually and biopsies.

CAPSULE ENDOSCOPY
The last step was to do a capsule endoscopy for visualization on the small intestines and evidence of Crohn's. The prep was again uncomfortable fissure-wise. However I had no trouble with the pill exiting the following day.

Two more ulcers in my small intestines were discovered. As a result of the chronic fissure, the fistula, and 7 ulcers I am diagnosed with Crohn's as of yesterday.

CURRENT STATE
I passionately sharing my story on this forum because for 3 years the only external sign I had of Crohn's was an awful, chronic, anal fissure. Maybe it's atypical, but still I went through every prescription, many procedures and many many doctors at seemingly some of the best hospitals in the country before a great set of new doctors probed the possibility of Crohn's. I am so lucky I never gave in to recommendations for some of the irreversible fissure treatments like a sphincterotomy.

Re the ulcers, there's no telling how long they've been there. Might be recent, or I may have had them a very long time. Other than one 48 hr period I have experienced no pain or ulcer symptoms. I would have never known I had them if the pain hadn't flared up once. (and even when I did have them a colorectal surgeon thought it was irrelevant)

I am now beginning my journey on dealing with Crohn's and selecting a treatment, herbal options and diet. I am very hopeful this will heal my anal fissure. I will continue to update this thread if this is helpful for you. For now all i can say is don't stop questioning, pushing and championing for your own health!
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby Canadabum » 25 Jul 2016, 15:29

WOW -- What an awesome post. Thank you so much for sharing your incredible, difficult, challenging, confusing and empowering journey with all of us -- there is no doubt that many will benefit a ton from your experience and your willingness to document and share it - so thank you!

Sounds like you have been on quite a challenging path for a while -- your perseverance and attitude is commendable -- many (including myself) would not have been able to chug along as aptly as you did...thanks also for reminding all of us that a big part of this condition is our mental attitude and our mental approach to our own healing -- a huge thank you!!

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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby helpme » 30 Aug 2016, 23:29

I'm glad to hear that you feel you've made some progress RF. Perhaps I'll give these doctors a try. I've had 5+ colonoscopies in the last five years and am doubtful that I have Crohns. But there might be value in seeing people who have treated another post-kenalog patient before.

I hope that you're doing well and that the diagnosis gives you some measure of peace. Let me know if you ever decide to go back for the kenalog touch-up.
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby Savaici » 01 Sep 2016, 06:28

A truly great post, ruffledfeather! So glad that you have at least an answer now. :huggies: Your topic is now also in the Crohn's sub-forum, with a 'shadow' post in the General Anal Fissure Discussion, so it can be written on in either sub-forum. Thanks again for a truly informative post and hope that things will soon improve for you. :sunny:
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby ruffledtailfeather » 06 Sep 2016, 14:07

@helpme The very best of luck to you. The last set of docs have been so encouraging and thorough with my symptoms, so I'd highly recommend giving them a shot. My physical examination and experience with Dr Harris was very thoughtful and thorough so it might be worth considering to hear her take. And FYI Dr Oneto is now back from mat leave and the wait period for an appointment doesn't seem to be more than a few days. Let us know if you do go & if she or any of the other doctors are helpful.

I'll keep you posted on if I pursue kenalog again. I think I'll have to tackle healing after nailing down a treatment for the Crohn's.

@savaici & @Canadabum really really glad I can contribute. Hoping this helps someone else.
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby pita2016 » 21 Sep 2016, 09:54

Hi @ruffled tail feathers. Thank you for you post. It has helped me a lot. I was hoping for some some feedback from you since I'm going through something similar and struggling with my docs at this time. I've been dealing with moderate stenosis and multiple chronic fissures for 6 months now ( result of a hemorrhoid surgery). I had an LIS done with my hemorrhoid surgery but my original fissure healed only to reoccur in a diff spot.

I've seen Dr Kiran at columbia and have tried Kenalog injections and dialations twice already; However, my fissures always come back and i seem to be fighting a losing battle. I've coincidentally also had a consult with Dr Harris for my condition and she wanted me to opt for a flap surgery for stenosis but since this is a complicated procedure, I've been looking at alternate options.

For a few months now, I've been wondering if I have Chrons since i seem to be suffering from bloating and mal-absorption alongside my fissures. Since my colonoscopy was clear all the CRS's I've met have ruled this out. However, i'm wondering if i should request my GI for an endoscopy as well. I am not sure what else could be causing reoccurring fissures and bloating otherwise..
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby helpme » 28 Sep 2016, 09:05

@pita2016. Does that mean you had kenalog with Dr. Feingold and then had the touch-up procedure but still have not resolved your fissures permanently?
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby ruffledtailfeather » 28 Sep 2016, 19:03

@pita2016 that sounds so tough! Sorry to hear it's been such a concentrated, aggressive situation. I'm so glad what I've shared has been helpful.

I'm not sure medically I can give you advice, but I did feel personally that Dr Harris was a thorough and thoughtful doctor. Did she not mention anything along the lines of Crohn's? It may because you've been dealing with it for 6 months as opposed to a longer term (mine is over 3 years), I think for both Dr Harris and Dr Oneto that was the factor that really caused them to look into Crohn's. That said, it doesn't mean you don't have an internal issue. Perhaps you could ask for a capsule endoscopy - that gives them a look at the whole digestive tract to evaluate for Crohn's and other possibilities. I am very confident that you've got to develop some course of action to address the fissures, you can't live like that indefinitely and it shouldn't think otherwise. (Dr Oneto told me that exact thing months ago and it was really encouraging for me - I was on the brink of throwing in the towel).

Another interesting thought I want to mention is the idea of gut health since you mentioned the bloating and malabsorption. I have no idea where you are with these issues, but for me the bloating is unbearable beyond anything else. I don't have answers, but I do believe that what we ingest + our individual microbiomes plays a big role in many aspects of our individual health. The field of gut health is huge, and there are numerous blog posts by ppl across the spectrum, and often it's really difficult to know who is actually an expert, or successful, and what theories are legit. I did a low FODMAP diet for 4 months last year, it didn't work for me but I know it does work for a lot of people. I've just started the Elemental Diet last Friday and then will transition to the Specific Carbohydrate Diet after Oct 13th. I have just read the book on these 2 diets, Breaking the Vicious Cycle, and it definitely has compelling thoughts. Apparently within one month you can tell if the SCD diet is working for your body or not, so if you're really miserable, it's worth a shot. (I've tried so many things and have been unbelievably miserable for so long that I am starting at the extreme with the Elemental Diet. It's not as hard as I thought and if you want more details on this let me know). The SIBO website has a lot interesting content and links to videos.
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby pita2016 » 06 Oct 2016, 09:24

@help me- that is right :(
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Re: ANAL FISSURE 3 YRS >> NOW CAUSED BY CROHN'S

Postby pita2016 » 06 Oct 2016, 09:32

@RuffledFeathers- Thank you for your post. I am encouraged to try asking for a capsule endoscopy from my Gi this time around. What has been most frustrating for me in this process is the attitude of the doctors that I am dealing with. My CRS actually told me to deal with my issues because things could be a lot worse. While I get the philosophical meaning behind that statement, it is not encouraging because living with a problem you cant understand or fix is not reassuring from a patient perspective. Of course, things could always be worse (or better) so i've been avoiding meeting my doctors for that reason. My Gi is attributing all my issues to stress (including the bloating) without performing any diagnostic procedures. I definitely need to find an empathetic physician because without that the process of recovery is harder. I am currently on a diary/Gluten free LOW FODMAP diet. Currently, it is doing nothing for me but I hope things get better. I will keep posting. Perhaps my posts will help others just like yours did. Thank you for reading.
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