Hi everyone. Recently DX'd w/ Crohn's.

Hi everyone. My name is Josh, I'm 20 years old and I'm currently working towards my associates in computer science (kinda).

WARNING! long story ahead...lol

I started having problems May '11. I had severe abdominal pain, fever and a declining appetite. I saw Doc. A and he suspected a simple viral infection. He told me go home and sleep it off. A week later, I saw Doc. B since I hadn't improved. He suspected appendicitis, but ruled it out since I was actually feeling a little better that day.

Well, another week passed, and I showed no improvements. Then one night, I went to find something to eat, and I passed out from dehydration. I went to the E.R. and they performed a CT scan and told me I had a urachal cyst, and it needed to be removed. So, on June 6th, it was removed via surgery.

Everything was going fine for about a week. I had a follow up with Doc. C (the urologist who performed the surgery). The skin around the staples was red and inflamed and the wound was secreting this strange mucus, which he identified as fibrin. He decided to remove the staples and let the wound heal from the inside out, lol, which means I walked around with a gaping hole in my abdomen which has healed except for one small spot, which I'll get to in a moment.

About a month later, my wound started secreting this chunky brown stuff that had a horrible smell. I made an appointment with Doc. C the following week (he was out of town 'till then) but I felt like I shouldn't wait that long, so I got an appointment to see Doc. B the same day. I caught him up on everything and he told me to keep my appointment w/ Doc. C and he also prescribed some antibiotics. I started taking them, and I did notice an improvement. I saw Doc. C the following week as planned and he agreed with Doc. B. I finished the antibiotics and everything was good for another few weeks. I started the semester late august. Life was much better.

Then on the morning of September 11, I woke up and went to urinate, and out popped a rather large kernel of corn. Needless to say, I freaked out (fellow males can completely sympathize). I went to the E.R. once again and Doc. C came in to see me. After hearing what happened earlier, he immediately suspected crohn's and explained that I had 2 fistulas. One connecting my colon to my scar tissue, and one connecting my intestines and bladder. He handed my care over to Doc. D who is a general surgeon.

So, I started on TPN. I was on it for 3 weeks. The theory was that if there was nothing passing through the fistulas, they would close up. I went 3 weeks with no food or drink whatsoever. :eek2: Also, I withdrew from school, because I didn't know how extensive the home care would be. I did show improvement, and once I got off, I was able to start a liquid diet. A few weeks later I started on a solid diet. That's when the problems started again. I started oozing more stuff from my wound, which meant the fistula had opened back up. To this day, it's still oozing.

On Novemeber 15th, I had a colonoscopy performed by Doc. E who is a GI. I'm going to see him tomorrow to go over the results from the biopsies and make my diagnosis official. Doc. D explained his suggestion for moving forward which is to start on remicade, take it for a month or so, and then do surgery to remove the fistulas as well as part of my TI (terminal ileum, i believe). He said that hopefully, he'll be able to do it lyposcopically. The way it's looking, I might not be able to attend school in the spring, which would make a year outta school. After my last surgery, it took awhile before I could get around on my own. Almost 3 months. Hopefully, it won't take that long this time, since he might not have to cut me open. idk.

Well, that's it for the story. Now onto my questions.

1) Is remicade the best option to start with. I thought it was like a last resort in terms of medication. Although, it might be a good idea to start with the big guns. Thoughts?

2) Is addiction to painkillers that big of a concern? After my surgery, I took hydrocodone 5/50 for 2 months, and I was fine. I had no problems other that constipation. I had no mental or physical signs of withdrawal once I quit either. For the last 2 weeks, my pain has been steadily increasing. I have a fairly high pain threshold, but I was in tears last night. Yet, Doc. D refuses to give me anything. OC stuff just doesn't cut it. Also, I've adapted my diet to compensate for crohn's, but it hasn't helped.

3) Lastly, is it true that we don't know the exact cause of crohn's. I used to drink 2 energy drinks a day for like 3 years. I also took accutane late '09 and I've read plenty of stuff online about patients who took accutane that ended up with IBD a year or two later.
EDIT: My grandfather had mega toxic colon. That's it as far as family history is concerned.

Ummm... I think that's it. :ylol:

If you have any questions or advice, I'd be ecstatic to hear. I look forward to learning everything I can about my condition, and possible helping others once I have a better understanding of it all.

Cheers!

Welcome! Wow...you have been through a lot ... but this forum is here so we can all help each other!
1) It is becoming increasingly popular and shown to be effective to start with the big guns first. I know lots of people on here have been treated that way.
2) I also took plenty of oxycodone post surgery and had no issues whatsoever stopping it. I guess if you truly need pain management, you probably don't become addicted in the way that someone who has no pain and uses it recreationally would.
3) The specific cause of Crohn's is still under question. For example my mom has IBD so it could be genetic but Humira works for me, and it's a drug which treats autoimmune problems. About accutane...the whole thing is really confusing. Something like that couldn't have caused Crohn's for me, I was diagnosed when I was 7. Science is still out on the exact specific cause of Crohns.
Anyway, nice to meet you, enjoy the forum, it is amazingly useful!!:hug:

Thanks for the welcome Emily! :ysmile:

1) That's good to hear. I thought it might be overkill.
2)I guess I'll have to talk to him again(Doc. D). He wants to see me after I see Doc. E tomorrow.
3)That's unfortunate. If I did get it from the accutane or poisin drinks, I wonder if I can pass it on. Idk, too confusing.

And I'm glad to meet you too! I've been browsing through the threads and there is so much info. Looks like I picked the right forum to join after all.

[:

Hi Josh and welcome! Boy, you've been through a lot in such a short period of time. I sure hope you start to feel better soon. As far as your questions:

1) Remicade is the "big guns". As Emily said, there is a theory that it can be more effective to work from the top down. And, it is the best treatment for fistulas, so that is probably why your GI is suggesting it. I also want to add, if Remicade works for you, stick with it. I am not sure if I misunderstood this line "start on remicade, take it for a month or so, and then do surgery...", but it sounded like your GI may suggest to do a dose or two. Again, if it works, stay on it, otherwise there is a good chance you will not be able to use it again in the future as your body can build up antibodies.

2) There can always be concern for addiction to painkillers when serious drugs are being used, hence why your doctor won't give you any more scripts. But it sounds like you didn't have an issue, but your doctor is just being cautious it seems. And you're right, the OC stuff doesn't help.

3) Yup, no way to know the cause. My theory is there is a genetic predisposition, and something triggers it to present itself. But, again, that is just my theory.

Thanks for the info Jill. What Emily said makes sense. Hopefully it works. And just to clarify, he wants me to stay on it. I guess if I have it in my system during the surgery, there's less chance of more fistulas forming.

So, I met with my GI today. He had some good news and some bad news. Turns out that I am now a legit Crohnie. Which sucks, but is also kinda good since I now know what the problem is and I can work towards achieving remission.

Also, he said that if the medication works well enough, I won't have to have surgery after all. The main problem is the inflammation in my bowels. Because of this, part of my intestine is kinked up like a garden hose. Which explains the pain. I'm eating solid food, and it can't pass through. He did prescribe me some tramadol 50mg for the pain and some polyethylene glycol 3350 for the constipation. The tramadol is ridiculous. It got rid of most of the pain(which was no small feat), but I passed out like 10 minutes later. I've never been that sleepy.

In my intro post, I mentioned that my PCP suggested Remicade, however, my GI was pushing towards Humira. I guess it would be nice to take Humira instead, since I can give it to myself. But I'm still not sure. He told me to sleep on it and get a second opinion, and just let him know once I decide. He does want to perform an x-ray on my intestions to see if they're inflamed enough to not do the pill with the camera.

What do ya'll think? Is Humira a viable option? Or should I start with the big gun?

Humira is a totally viable option! It is a biologic drug like Remicade and is a "big gun" drug too. I personally don't know if I'd like Remicade. Infusions freak me out a little. I think Humira is good biologic to start with. Lots of people respond to it, and of course I like it cause it's got me in remission Good luck with your decision. Both are great biologics, but it's up to you if you want injections at home, or infusions at the infusion center!

Hey man welcome. I know what you're going through struggling with this in school. Everyone else has pretty much answered your questions for the most part, but you talked about drinking energy drinks. I drink a TON of energy drinks. I've got a weakness for Monsters (green, red or orange) and I was diagnosed very young so at the time I never drank energy drinks. Now, even with how many I drink now, I dont think it has made things worse. For reference, I once went on an overnight road trip with some friends and drank half of a 2-4 of monsters in that time. It really does turn your pee green after awhile lol.

I also have been on oxycodone for awhile and have had no problems stopping and getting back on when needed. But like I said in another thread, you really do have to let the doctor know you're in pain, and if he says no tell him you'll just find someone else who does care and wants to help you. You'll get your pain meds, trust me lol.

Hi Josh! I'm just now catching this thread. Welcome to the forum! :hug:

Our friends have done a fabulous job answering your questions. I just wanted to chime in and say that Remicade, as Jill mentioned, is the best biologic for fistulas. It actually closes them up! It's a miracle drug! Humira does get people into remission, too, but I keep thinking about popcorn kernels. And hey, if it were me, I'd be convinced to choose Remicade just because of that!! I've never been on Humira (as of yet), but I hear great things about it. Definitely sleep on it. Infusions kinda do suck, but it's not as often as the injections. I spend a lot of time living my life rather than dreading a shot every week or 2. It's a big choice. Good luck.

It may help you to read from the 2 sub-forums... Humira: http://www.crohnsforum.com/forumdisplay.php?f=59 and Remicade: http://www.crohnsforum.com/forumdisplay.php?f=58

@ Emily - I'm glad to hear it's a big gun as well. As for the infusions, I really don't mind. I've had so many IVs in the last 6 months, as well as the PIC line for the TPN. It's no biggie Do you use the regular needles or the spring loaded ones?

@ KWalker - Ooooh, green and red monsters were my favorite too. I'm glad I quit though. They're just too expensive, and they made my face break out.

@ Jessi - Hi Jessi! Thanks for replying. I'm considering both. My main concern is whether or not the Humira is the best option since I have fistulas, and the one is still open. My GI didn't mention anything about them. I'm guessing it does help, since he said that if the medicine works well enough, I won't have to have surgery. Is it safe to leave fistulas in?

Hi Josh and welcome!

Most have been said I believe, but, I can tell you that last year I had an enterocutanneous fistula going (I still have others going unfortunatly...) but, humira did close my fistula within 2 weeks. The GI told me to use it in monotherapy, which has been fine for 8 months, then... I started responding less and less so the fistula came back.
So I now have injections weekly and methotrexate to make sure Humira is working again. So far so good, the new fistulas have also closed and now they are disappearing... (there is something magic about fistula, anyone feels that way?)

But, yeah, my GI did not suggested that Remicade was better than Humira for the fistula, he gave me the choice between both at the time. I read quite a few time that remicade was really specifically indicated for it but I don't know if it is only a matter that this drug is better known than the humira. I guess it could be why, both works pretty much the same way technically.

Hi Jane!
What's an enterocutanneous fistula?
And that's great news. That was one of the big deciding factors.
And you said they were starting to disappear? Like dissolve? I thought they were permanent unless you had them removed via surgery.

Enterocutanneous is that they reach to your skin. Probably like the one connecting to your scar from what I understood, I may have got that part wrong though! And for the disappearing part let say, the fistula I have are maybe the size of a pencil eraser. In november 2010 I began humira and the visible part of the fistula disappeared and there was only a tiny depression on the skin's surface that was left. The "digestive/granular tissues" were somewhere back inside lol... I couldnt really explain that. It was fine until august, it kinda reoppened and another or two appeared too. Since they boosted the meds, one had "re-returned" inside and the others are getting smaller and smaller. I don't know if they remain existing but that the skin grow normally over them (that could be a possibility) or if they can simply not exist with the anti-TNF. I'll have to ask that to my GI next time cause it find this phenomenon quite interesting and I don't know exactly what is behind it. If no one comes up with an answer till then, ill try finding it.

Oh, okay. Then yep. I have an enterocutanneous fistula. :eek2:

I can't wait to start treatment. Fortunately, I have an appoinment on Monday to test for tuberculosis. I'm positive I'll pass. After that, I'll be able to start! I'm really leaning towards Humira after reading PsychoJane's comment about how it worked on her fistulas so quickly.
Well, that's it for today.

Cheers

It would be unlikely you would test positive
I hope you can start your treatment soon. Be prepared to get tired after the first few shots, but hey, its nothing when you have known the feeling of getting your skin eaten by your own digestive acid lol (thats how I like to illustrate the fistula concept).