Diagnosed last week

[Incognito2010]

What a journey......I have had issues since I was a teen. I thought, it was food allergies.....almost two years ago I had a fissure so my pcp referred me to an awesome colorectal surgeon. He took care of it but I did not heal well at all....in march I went back to him for a hemroid, but found out it was an abscess.....he did surgery and it went well.....in my recovery I had issues with pain, pressure and mucus. Last week, he did a colonoscopy and found crohns.........

A new reality that makes sense of my history. Saw my gi for the first time today. We talked for almost forty five minutes. Starting pentassa and encourt tomorrow and we will see what happens......indulged myself one last time tonight and immediately felt it.......oh the big d, but it tasted good, so with the meds, starting a multivitamin, calcium and vitamin d tomorrow. Hope to get it under control quick..... Btw, just turned 30 so been suffering unknowingly for at least 12 years...thought it was normal......wrong on that one says my bowels

 

[butterfly]

Hope you get better, soon. Crohns can get serious so its good that you're taking it seriously now. It seems like your symptoms weren't too severe over the last 12 years because you've never had to go to the ER. I guess that kind of sucks because you had to suffer and didnt know why for 12 years! I got dxed when I was about 9, which was 10 years ago. I also had a perianal abscess recently, boy did it suck! I feel your pain. I'm actually still dealing with the pain. Does the mucus thing happen often/has been happening for awhile? I've been dealing with that for over a year now. I also felt pain, and pressure. My doc had me on painkillers. What about you? I had to have 4 surgeries for the same thing you have. Please keep a close eye on yourself!! I hope it ends quickly for you. My abscess was caused by a fistula, so if it does not heal well (continues draining, or reoccuring) you must take that seriously have be checked for that. It took 3 surgeries, a colonscopy, and an MRI to finally realize I had small fistulas there. I unforunately do not understand how an abscess develops really, if it is caused by fistulas or not. Pentasa is what they started me off on too and I'm not sure how effective it is honestly. I've been off of it for years. Never personally have had encourt, I think!

Anyway I really hope these meds work quickly. Make sure you keep an eye on your abscess site. I felt pressure a week later and returned to ER. Then two weeks later the same thing happened. 5 months later had a surgery to remove the "infection" that was continuously draining. Now 1 year later and I'm finally starting humira to shut down the fistula I've had this whole time.

I feel for you. Even if stomach pain is not bad enough to have gotten you diagnosed earlier, dealing with it for 12 years is a horrible thing. I hope it wasn't always so bad - I hope you had times of comfort. I have had my life negatively impacted by the constant stomach pain, so I hope for you it wasnt always so bad and that these medicines get you well soon. Good idea with the vitamins, its something I still really need to implement in my own life.

Hope you feel better soon.

 

[Incognito2010]

Butterfly, thanks for the reply.....there were times that I should have gone, but I chalked it up to food allergy or flu.... Abscess is now ten weeks gone and surgeon looked at it again during the colonoscopy and was quite happy with it....Thank you Lord!
On the mucus, it really started after my surgery. I never really paid attention in the past so who knows how long it was present.....I got concerned in my colonoscopy prep when after initial clean out, I then started putting out tons of mucus.....so I knew something was up and they took note of it at the intake time.
I am definitely monitoring everything and I hope the meds will work, if not we will change it up to find something that does....my blood work will be in at some point and see the gi doc in almost four weeks so he will see what else test wise he wants to do. Meanwhile, I take my meds and continue reading and learning....

 

[butterfly]

I never really paid attention in the past so who knows how long it was present.....I got concerned in my colonoscopy prep when after initial clean out, I then started putting out tons of mucus.....so I knew something was up and they took note of it at the intake time.

Does this occur at the site of your abscess surgery and for how long? (I am sorry if this is personal, however, I do not understand if this mucus is coming from the same place as the surgery site is, because you say that your surgeon was happy with the progress of your abscess. Mine was....too..) I wanted to really know if this kind of thing has been happening to anyone else. I really don't bother with it usually, I usually don't have to keep a bandage there or anything because it doesn't drain that much. But I have to be so careful that if I start feeling pain and pressure at the site...the wound needs to be opened to let the mucus/infection come out again. I had to cauterize myself occasionally even to let it open again. At first it did seem like a big deal, but it's been quite an annoyance since its been going on for over a year. Has yours stopped draining yet? I really would love to get it to stop sometime soon, even if it isnt the worst of my problems right now. I am curious because if yours hasn't stopped either, you might have the same thing I have, which has not gone away for longer than I would have expected. I wonder if what your describing is what is going on with me? If it is, I hope it works out, and if it isnt, I am glad that you don't have to deal with that and hope your other symptoms are alleviated ASAP!

 

[Incognito2010]

From what I can tell, mucus coming from farther up the colon..... abscess was right at my exit where the original fissure was and have very mnor pain every once in a while, but no more drainage here....they believe all my stuff flowing out of small intestine

 

[butterfly]

I see I see...well I am glad that you do not have to deal with excessive drainage. It is something I NEVER envisioned having happened to me! The abscess side swept me unlike stomach pain which I was fairly fimilular with for many years. I feel like the same was with you. Good luck - I hope your crohns goes into remission asap!

 

[lj3]

sounds identical to my story. i am still in the process of being fully worked up and i want to talk to the gi about the food allergy stuff. i skin tested positive years ago so always thought that was the problem now that i have a crohns dx i am trying to figure out if i tested positive bc of the crohns or bc i have food allergies too. i know a lot about immunology and this sort of perplexes me esp since starting meds and implementing other dietary changes my main food allergy wheat doesnt seem to trigger me. its all so complicated just wondering if your gi said anything about the allergies?

 

[Incognito2010]

Lj3, I have not talked to my gi about food allergies yet. I will be talking with my pcp this week to see if going to an allergist could help figure out or rule out food allergies and whatever else I am allergic to.......good luck and hope you get better soon......