fissures/hemorrhoids/skin tags - Perianal Crohn's?

[pomegranite14]

Very quick summary:

- 20 yr old

- have had chronic anal pain for 6 years

- been to many many doctors and had first been told there was no evidence of anything on my rectum. the next doctor said it was a hemorrhoid (telling me to eat more fiber and drink more water). the next, a thrombosed hemorrhoid. even one doctor said it was an inflamed varicose vein. then I went to see another doctor when the pain did not go away after years and years of this, and I was told it was an anal fissure. I then had the botox injection to heal the fissure (during which the doctor found 4) and because the area was numbed for days afterwards, I could not feel how hard I was straining to go to the bathroom and I developed a new hemorrhoid.

Today I am certain that same hemorrhoid turned into a skin tag which I have had for months now. The same doctor who performed the botox injection suggested I could have crohns because of all the fissures I had before. I did some research and think I could have perianal crohns. Most of my symptoms match up. I also have had very bad heartburn for years as well as constipation which I wonder could be a symptom as well. I take stool softeners everyday and have tried everything, (I am gluten-free and vegan for years) but still every time I go to the bathroom I am in excruciating pain.

I spend my summer in Colorado in the mountains and I think the altitude makes the pain worse. I recently ended up in the emergency room (my second visit just for fissure/hemorrhoid pain) because the pain after going to the bathroom was just too bad. They gave me a prescription for the pain killer norco to take after I go to the bathroom because the pain is too horrendous. That helps but constipates you which is even worse for fissures/hemorrhoids/skin tags. I do not know what to do, after I go I cannot move for hours, the pain lasts for as long as 14 hours.

I have tried everything, and have had chronic pain for 6 years now and just want to figure out a diagnoses. Every doctor has told me something different, I know crohns is difficult to diagnose, but I feel like this could be it.

Can anyone help me figure out what this is and if it does indeed sound like perianal crohns? I cant take it anymore


Thank you!!!

 

[rose*flo]

I'm so sorry you are going through all this. I know first hand how incredibly difficult it is to have pain in the rectal area. Have you had a colonoscopy? That should be able to help you get some answers as to whether crohns is involved. If you do have Crohns, your symptoms won't get better unless you get your disease under control. It took years of rectal pain for me to get DX. I had many abscess surgeries and I wasn't in any less pain after the surgery. no one knew what was going on. I didn't have other typical Crohns symptoms like D or C. When they finally DX me, the put me on 100mg IV prednisone in the hospital and within hours the pain I had for all that time was gone. I was feeling good with no meds for about 8 years after that until about 5 months ago. Really bad rectal pain again. Once again, the Doctors didn't know what exactly it was. No abscess, but I do have a fissure...but I knew it wasn't just the fissure creating all that pain. Got a scope and showed pretty active disease everywhere even though the rectal pain is my only symptom. I am on 60 mg prednisone as well as pentasa and the terrible brutal pressure started diminishing after the first or second day. I still feel a little pain from the fissure, but it seems more like "normal" fissure pain and not debilitating. We are talking Humira or Entyvio as the next step. So to answer your question, yes in my opinion it's a possibility that you have perianal Crohns, and I would definitely go to a GI and colorectal surgeon. The GI should do a colonoscopy asap if you haven't already had one. hope you can get some answers!

 

[pomegranite14]

thank you for getting back to me!!
No, have not had a colonoscopy yet. I did have an endoscopy for my chronic heartburn, which proved inconclusive. But I suppose I need a colonoscopy... I hve not had a fistula but my other sypmtoms seem to match Crohns. How long were you on prednisone and what happened when you went off of it?

 

[rose*flo]

Yes a colonoscopy should be the next step. There are other tests as well, but as far as I know the scope is the best. When I was dx and they put me on Pred, I was on prob for about 2 months or so. I don't remember the exact time. Started off at 100 mg. then I think they tapered me to 80 or 60 by the time I was out of the hospital. Then each week taper down like 10mg.
Then they put me on Remicadee but I was only able to have a few infusions because I had an allergic reaction. After that I was scared to get on more meds and I was feeling better so I stayed off meds all these years and I was fine. I don't know if I was in clinical remission because I didn't have a scope all those years, but I was feeling 99.9% normal.
Now this flare had been going on for months and I was finally able to start pred. I couldn't be treated right away because of recurring cdiff. Now that's cleared I have a few more days of 60mg then taper down to 40. I think GI is going to keep me at that for a bit. But I will talk to him next week.

 

[pomegranite14]

Was only definitive diagnosis through a colonoscopy? Or did you also take a blood test? I cant bear the thought of going through months of testing after how much I have been through after so many doctors. The only thing that makes me feel like its not crohns is I dont have fistulas or abscesses (only fissures/skin tags) though i do have a suspicious bump on my butt crack that has been there for 2 years and occasionally is very sore.

 

[rose*flo]

Yes the diagnosis was via colonoscopy. I had lots of blood tests, CT scans etc,,, but the scope was official DX. thats great you don't have any fistula or abscesses, but unfortunately if you do have Crohns, those things can develop

 

[pomegranite14]

Ok thank you! That is very good to know. I just want a diagnosis because every doctor tells me something else and it's very frustrating!

 

[buttER]

An MRI scan is also good for visualising perianal disease. I have had problems that weren't detected by colonoscopy but were seen on the MRI.