• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New Guy

Hello. I am a lurker here, but finally decided to register and say hi. I was diagnosed with Crohn's when I was 16 and I am 31 now. When I first got diagnosed it took them a long time to figure out what was wrong with me. I ended up so sick I had a fistula, was malnourished, my feet swelled up and I had open sores all over my shins and knees. I had to be carried to the hospital because I could no longer walk. I recovered rather quickly with Prednisone and Asacol. I later went on a 6-MP and Asacpol and one short cycle of Remicade. I stayed on Asacol and 6-MP for about seven years without a flare up.

Being a bit of a rock and roll kid I lived by the live fast die young principle in my early to mid 20's with a lot of booze and partying, eating and drinking anything I wanted.

At about 29 I started to feel sick again and started with Remicade on an 8 week cycle, and the Asacol and 6-MP. At 30 my insurance changed and I started to see a new doctor (supposedly one of the best gastros in San Diego). Since seeing him I have only been on Remicade, now every 4 weeks and a double dose. Unfortunately, I am not really responding anymore and my CRP blood tests are not improving. I have had two colonoscopies this year. I have a family history of colon cancer so I really stay on top of getting checked. Really if it was not for pain I would be OK. I can deal with the rumbling intestines and diarrhea. 15 years of that it is old hat now. They recently gave my some Hydrocodone to the pain, but really it does not do much, so I will probably be seeing a pain management specialist. I am staying at the 4 week dose of Remicade until February when I will have another colonoscopy to see if there has been any improvement.

My doctor is also referring me to the IBD Clinic at UCLA to have a second opinion and see what my surgical options are. There has been talk of removing my colon but I am not to keen on having an irreversible procedure done at 31 years of age.

I am also running the Las Vegas Marathon in December for the Crohns and Colitis foundation (not asking for donations, already reach my goal).

One thing I have learned through all of this is that you just can't get to bogged down with all of the tests, hospitals, Dr.'s, lousy insurance companies, etc. I always say there is people out there that have life worse off than me, and I should be thankful for what I do have, not harp on anything else. Getting down about Crohn's is no help to yourself.

Cheers!

Chris
 
hi Chris, welcome to the forum... what a lovely positive post, despite the troubles you're having right now. i hope things do settle down and the next colonoscopy shows an improvement. looking forward to seeing you around the forum :)
 
Thank you for the welcome. There really is a wealth of information on these forums. I have often found myself reading topics here when looking for help.
 

Crohn's 35

Inactive Account
Hi Crohnshobo, and welcome to a place where you are helped with some wonderful people who have the same problems and medications as you. You have a healthy attitude and that will help you get throught the rough patches. I lost an uncle with intestinal cancer and I have CD and a brother with UC and a sister with both. Cancer is not a problem I worry about, it doesnt mean you will get it either. It is tougher I think with younger people because outsiders dont know what to think or say. Booze is a no no for Crohns and smoking too. You have to treat your body differently or you will pay the consequences down the road. I had symtoms when I was younger too and wine would hit me and I would be praying to the porcelain God, and trust me I learned. Take care, let us know what the outcome of your scope is.
 

imisspopcorn

Punctuation Impaired
:welcome: Hobo,
It's always good to see another West coast crohnie join. I'm glad you found this site.:)
Your very fortunate to be close to specialists at UCLA. I hope you are able to keep the surgeons at bay for as long as possible
I've said many times that I can handle all the D as long as the pain is gone. I hope you can get some satisfactory relief soon.
I'm in aw of anyone who does the marathon.....Good luck and welcome again.
 
Jettalady said:
Hi Crohnshobo, and welcome to a place where you are helped with some wonderful people who have the same problems and medications as you. You have a healthy attitude and that will help you get throught the rough patches. I lost an uncle with intestinal cancer and I have CD and a brother with UC and a sister with both. Cancer is not a problem I worry about, it doesnt mean you will get it either. It is tougher I think with younger people because outsiders dont know what to think or say. Booze is a no no for Crohns and smoking too. You have to treat your body differently or you will pay the consequences down the road. I had symtoms when I was younger too and wine would hit me and I would be praying to the porcelain God, and trust me I learned. Take care, let us know what the outcome of your scope is.
Ya I did all the drinking and smoking for a long time. Never had a porcelain god problem. Hardest part of all that stuff is running in a circle that spends most of their time at seedy dives. Know I just avoid the same stuff, also helps that my girl friend that I know live with does not drink. She also does not eat the fast food and junk food that I love oh so much. So on the straight and narrow.

I never really kept my Crohn's a secret from anyone. I have always said "I have no shame" so I usually tell people up front. I don't let much get to me or get me down, so I am usually pretty willing to put it all out there. If people can't deal with something so trival then they really are not worth my time. Surprisingly, many people know people with the disease. This is especially true in San Diego because of Rolf Benirschke (http://ibdcrohns.about.com/od/ulcerativecolitis/a/rolf.htm).

Though I do remember when I first got sick in High School and I was in the hospital. When I came back to school there were so many rumors about my absence; from HIV to Cancer.

Again, thank you for the welcome.
 
Thanks Peaches!

The Remicade worked for me for a few years, but this year not so much. Not feeling terribly bad (outside of the pain), but I have lost a fair amount of weight. Two colonoscopies this year, both pretty bad. CRP tests with every Remicade and the inflammation is still pretty high.
 
Peaches said:
Ugh!!! Sorry to hear that buddy. Have they talked about putting you back on the 6MP at all? I can't remember if that helps the efficacy of Remicade or if it just reduces the possibility of creating the anitbodies and having infusion reactions with it.

My current Dr. actually took me off the 6-MP and Asacol when I first started seeing him. He said I should not be on the 6-MP the same time as the Remicade. About half way through this year he had me on a high dose of Flagyl and Cipro for about three months and those made me really ill.

He is very reluctant to put me on any Prednsone. I have not taken steroids in about 10 years. He does not see the point of treating me with steroids when I will just flare up again as soon as I am off of them.

So it seems his plan now is to keep me on the 4 week large dose of Remicade for six months and to send me to UCLA Inflammatory Bowel Disease Consultation Group: http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=307&action=detail&limit_department=15&limit_division=1015&limit_program=5141

He wants to see if they can do a partial removal of my colon, or what my other surgical options are, and what trials or suggestions they have. Partially since I have been very reluctant to consider surgery I think he want's me to talk to some more experts.
 
Hello Chris!

Welcome to the Crohn's Forum!!
Good to hear you have been reading in here and hopefully the forums have been of some help to you.

Sorry to hear you are going through such pain right now..
I'm sure you will get some answers from the UCLA Inflammatory Bowel Disease Consultation Group.

In the meantime keep up the positive attitude...
I find it has done wonders!

Again...welcome!!
Hugs~Nancy
 
Short update.

Doing a bit better pain wise now. Thanksgiving my Dr. gave me a prescription for Percocet which has helped dull the pain.

Remicade seems to not being doing much now. See my Dr. in about two weeks, so need to see about some sort of treatment until they can get me in at UCLA.

The big news is that tomorrow morning I leave for Las Vegas for the Rock and Roll Marathon for the Crohn's and Colitis Foundation. I have raised almost $4000 and as a San Diego team we have raised over $125,000. The race is at 6:15 AM on Sunday.
 
Hi Chris.

Thanks for keeping us posted as to how you are doing.
Please let us know what your doctor has to say after your appointment.

CONGRATULATIONS on the fund raising effort!!
Wow! That is really heartwarming!

Good luck on Sunday! :)
 
imisspopcorn said:
Have a great time at the marathon.....I'll be looking for you on the news;)!
There will be a lot of us running for the CCFA.

We have shirts that say:

I've Got the Runs for Crohn's and Colitis

and

Let's Leave the Craps in Las Vegas
 
Well I finished and made it home in one piece. It was a really great experience. I really urge people with Crohn's or Colitis to get involved with this.

With this marathon the CCFA raised 3.5 million dollars.
 
MAN - that is GREAT buddy!! I had to catch up on this thread - so glad you were able to get there and raise some money. The t-shirts were hilarious!

Well - I'm sorry that the Remicade isn't working for you. I really hope they can bridge you over to something that will do the trick!!
 

imisspopcorn

Punctuation Impaired
CrohnsHobo said:
Well I finished and made it home in one piece. It was a really great experience. I really urge people with Crohn's or Colitis to get involved with this.

With this marathon the CCFA raised 3.5 million dollars.
That is fantastic...It was so cold that day. People don't realize how cold the desert can get...Just not enough moisture for snow....Thankyou for taking part in the marathon and helping to raise money...GOLD STAR for you!!! I hope you had fun In Vegas as well.
 
Update

Got an updated CRP yesterday after they took blood before my Remicade infusion.

My CRP was at 85.6

Not very good. :( But not really surprised. It has been lousy all year, just didn't realize it was that high.

I see my Dr. on Monday, 12/21. Remicade is just not doing anything for me anymore. So need to see about getting on something else.
 
Sorry buddy - keep us posted - it may be my time to switch soon too - would love to know what you pick and how it works.
 
Well I saw my Dr. yesterday.

I am now taking 40 mg of Prednisone a day until my Humira gets approved and going and I am no longer taking Remicade. They said it would probably take about two weeks to get me going on the Humira. They gave me this huge box that had a bunch of info, a dvd on how to inject yourself, practice pen, and travel kit.

Honestly, the stuff scares me. The material is just littered with side effect warnings, but I wonder how worse it is compared to the 10 mg/kg every four weeks of Remicade.

On January 12th I go back to my Dr. to check in and on January 13th I go up to UCLA's IBD Clinic to meet with their Crohn's specialist to see what my surgical/treatment options are.

I made the mistake of coming home and taking the first dose of Prednisone last night. What a sleepless night, I forgot how crazy that stuff makes me feel. I have not taken any Prednisone in close to 14 years. Will stick with taking it in the morning from now on. Curious to see how long before it kicks in, but excited to get off it as soon as possible.

After my appointment at UCLA I will let you all know what they say. Really curious to know what my surgical options are, but it is really not something I want to do.
 
My Gastro also referred me to a Lipid Dr. to get my cholesterol under check, it wasn’t overly high, around 230-240. The CRP was always high, in the 29-30 range. Interesting that is one of the items the lipid panel also pulls. The Lipid dr said that the CRP can also make plaque in the arteries unstable. I am not sure what your cholesterol levels are but you may want to check that also.
 
krahsdnal said:
My Gastro also referred me to a Lipid Dr. to get my cholesterol under check, it wasn’t overly high, around 230-240. The CRP was always high, in the 29-30 range. Interesting that is one of the items the lipid panel also pulls. The Lipid dr said that the CRP can also make plaque in the arteries unstable. I am not sure what your cholesterol levels are but you may want to check that also.
My primary care physican just did a big overhaul of tests and my Cholesterol was really low, my blood pressure, liver function, other blood levels, etc. are all perfect.

Just have a bad gut lol

(I have also never had a cavity or braces and have perfect teeth and vision)
 
Just a quick update.

I am on 20 mg a day of the Pred until I see my Dr. again at the end of March. I have also done the first two doses of Humira (6 shots) and four Metho Injections.

I go back to the Dr. at UCLA the last week of March.

I feel great! I don't know if it is the Humira/Metho or the Pred. But I have not had D since the week of Christmas. Solid everyday and I have put on about 11 pounds since Christmas. My gastro said I look fat! I am only 5'8''/160.

Been trying to watch what I eat. Not on a specific diet like SCD. Just really paying attention to what I eat and how it comes out/cramps. I kept a food diary for a month.

My CRP has greatly improved, my blood work looks great, got my Hep vaccinations and pneumonia shot. Been trying to get into a softball league, spending lots of time at the batting cages and out in the warm San Diego weather.

Only minor set back is that I chopped the the tip of my left thumb off chopping veggies with a new knife. Getting that patched up hurt like crazy, couldn't believe they didn't give me anything for pain. At least I eventually passed out, but I also threw up on myself when I got nauseous from them digging around in the wound with Silver Nitrate.
 
OMG CH - You are bringing flashbacks for me! My Dad chopped the tip of his thumb off on a table saw and I went to the same clinic as he when he was getting his bandages removed (I had to get an xray for scoliosis). I remember watching him soak his finger/bandage off and I just sort of slide down the wall and passed out! It's funny now - I have seen so many things, but it was awful back then. I can't imagine the pain you were in - I would have been screaming for some pain meds.

Well...I am sooo glad it seems to be working for you. I'd take fat and happy any day over skinny and sick! At least I tell my husband that in the hopes he will agree ;)


CrohnsHobo said:
(I have also never had a cavity or braces and have perfect teeth and vision)
Like *ever* never had a cavity?? I'm sooo jealous - my teeth are lousy - always have been!
 

imisspopcorn

Punctuation Impaired
We need to start a Fat and Sassy Club.....I am glad you are doing so well. I love San Diego Hobo, we were there for New Years. Thanks for the update.
 
I did OK soaking my thumb in the iodine. I have a high threshhold for pain. But when they stuck that silver nitrate on there that was brutal. I told the Dr. that it really hurts, then things got dizzy, I got really sweaty and then passed out. I woke up with a thing of surgical gelatin on my thumb and puke on my shirt. lol

As s for the teeth I have never had a cavity. Surprising since candy is a staple of my diet. Just lucked out in the dental department.
 
My vote is the Humira helping the pred along :) I started to notice the difference about 4 days after my 4 loading doses. I had more energy, almost felt like waking up after a looooong sleep. No change in my BM's but I was only going about 2 to 3 times a day at that point.

2 months in I'm now doing what my GI would call 'formed' and usually just once a day.

Humira, a bloomin miracle drug!
 
Crohns Hobo--So glad you posted. I really am watching you! :) I hope those drugs work for you! I am happy to hear the new regime may be working...got my lfingers crossed righjt npow. Yeah, I remember my grandma chopped off the tip of her finger trimming lawn...my mom had to go digging for it to bring it to the hospital...Ewwww.....Glad to hear your on the mend.--What diet are you on? Sue
 
Not on any particular diet. I just eat what does not bother me. I do all of our cooking so I can control what we eat easier. Have found that pasta and pasta sauce do not sit well with me anymore, so I will cut that out. I don't eat a lot of bread either. Usually just an English muffin every morning with an egg for a little sandwich.
 
The left tip of me left thumb went adios! Chopped off with part of the nail. On Super Bowl Sunday morning. Was chopping a big bushel of Parsley for soup.

So no stitches, since nothing to stitch on. They use surgical gelatin to over the wound to create an artificial scab. It hardens into a white foam type barrier. Said it should heal up in about three weeks or so. Said I might have a little divit in the future, but my hands are already scared up so I don't care much.
 
Short update.

I saw my gastro yesterday and my CRP was fantastic. On the value scale used by the lab that drew my blood 8 is considered normal and I was a 1. So really no inflammation. I feel fantastic and I lowered my Prednisone down to 15mg. I will stay there for two weeks, then down to 10mg for two weeks, then down 2.5 mg a week until I am off it entirely. Woohoo!

Tomorrow I drive up to UCLA to see the specialist there. Will update again once I hear what he has to say.
 

Astra

Moderator
Yay Chris

CRP 1, that's fantastic news, when I was infected in hospital 2 months ago, mine was 261 !!
I've been watching you too, still pondering over Remi

Humira here I come!?
 
I am surprised to see such a quick turn around as my CRP the week of Xmas was really high like yours.

I am hoping that the trend of feeling good continues.
 
That's great to hear! I am interested to know how my blood work will turn out next month (probably more so from a starting point since I just started Humira). I got really excited today when I scheduled my blood work appointment and found their online library that explains all the tests they can do. Finally understanding simple things like lab work makes me interested to keep track of what's going on in my body instead of just relying on my docs to translate it for me. :) I hope you continue to feel good!
 
Update from the UCLA Dr.

I don't need to see him anymore unless I am feeling crappy. Which is nice not have to drive all the way up there from San Diego. He said to stay on the Humira and Metho for at least a year. After a year I can try to go off one of the two.

For the Pred. I am to stay at 15 MG for two weeks, then 10 mg for two weeks, then go down 1 mg a week until I am off it.

When I last saw him he did some serum test to see if I had Crohn's or UC. For all my colonoscopies only my large intestine showed disease. So he was unsure if I actually had UC and not Crohn's.

After the test it is Crohn's but what he called Intermediate Crohn's. He said it is a good thing meaning I am likely to always have it in my large intestine with no disease in the small. So he felt if I ever needed surgery I would be a could candidate to have the surgery and totally eliminate the Crohn's.

But good news all around. Just need to work on cutting out the carbs, watching my diet and staying healthy long term.
 

Crohn's 35

Inactive Account
Good stuff Hobo lol... so glad you are doing well. There is hope for me yet on the Methotrexate. So far so good... tomorrow is my next shot. I am really hoping I start to feel like you, long term! You are my Crohns' hero ;).
 
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