• 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 WITH CROHN'S, scared and angry

I was diagnosed in March 2012 but doctor said I probably had it for years. I guess I am one of the lucky ones with a very mild case.. after many many tests (because I asked them too, mainly because I couldn't / didn't want to believe so I wanted to rule out everything else) my doctor (who is super great and her sister has also crohn's so she is very sensitive with the subject) wanted me to start with imuran. After reading about it I refused and got scared so I did my research and found out two of my friends also had Crohn's and they were taking PENTASA for years and they were great.

After mentioning this to my doctor, she wants to give this a try. My question is: how long till it starts working (if it starts working)? I have been only for a month and doctor says it will take a bit so I just want to know if I should wait or just give it a chance..

My friends also take a different pill (it is pentasa but in different format, not the blue pills) and they say it works better because of absortion.. so I don't know..

I am really scares, angry, and of course many days in denial...but I have to admit I have it and try to live my life the best I can... I was/ am very very active, always traveled, exercised, and now everything is like "on hold"... I just hope this works and I can go back to an "almost normal" life..

today I saw for the first time maroon stool ( not red... but I am guessing this is blood?) so I freaked out. I don't know if Pentasa is doing that, if it is not working, if I should wait for it to work a little longer... but I called my doctor and appointment in two days. I am nervous.

thank you all for "listening"
 
Hello there - I have had Crohns for 25 years now and I have learned to deal with it. I am very active at 49 years old. I play soccer, coach, and referee and work out 3 times a week. I refuse to give in or give up.

I have been on Imuran for over a year now with zero problems. The only time you run into an issue is when you don't follow the Dr's orders with blood work.

Please look at my facebook page and see other active people who continue with their activities with Crohns or other IBD's.

Contact me if you need someone to talk to
 

JDTM

OMG LDN BBQ
Hi goyoh -- like yourself, I was diagnosed as a mild case back in February, and I've been on Pentasa ever since. I initially took budesonide to knock the inflammation down, and the Pentasa acts as a maintenance med -- a mild topical anti-inflammatory for the gut, so to speak. It took a while for the whole deal to kick in, but I've been only on Pentasa for a Crohn's medication for a while now and I'm doing OK. Not 100%, but most days I feel anywhere from 75-95%, depending. Life is manageable, but I sometimes wonder about whether I should be on a more heavy-duty med like Imuram -- I'll never know if it'll get me to 100% unless I try it.

Anyways, I just wanted to chime in and let you know that you're not the only mild case out there. It doesn't always feel mild, I know! Anyways, it's sort of a weird spot to be in, in my personal opinion, because the medications out there are usually geared towards the more moderate-to-severe cases, whereas we are in this gray-area-state-of-limbo or whatever.

Please feel free to utilize the forum if you have more questions about medications, or send me a PM if you like! Hang in there.
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community :) I can understand your being scared and angry. You may want to give this thread a read when you have a chance.

I'm glad that your friends are doing well with Pentasa. But be very careful if that's the only medication you're on. Pentasa is for Ulcerative Colitis, not Crohn's disease. This is because it only works on the mucosal layer of the intestines as it is a topical medication. So it can help with Crohn's disease, but the problem is, Crohn's affects every layer of the intestines. Let me describe it as you having a broken bone AND burns and only putting a lotion on to help the burns. There's a chance that broken bone might rear its ugly head one day.

I don't mean to scare you more, I think the more educated we are the more proactive we can be so the real scary stuff is much less likely to happen. This thread provides some data on Pentasa/Mesalamine for Crohn's disease if you're interested.

I wish you well :)
 
Hi goyoh,

Sorry to hear that you are having such a rough time. Your experience and emotions sound a lot like mine since I was diagnosed in June. Prednisone and imuran were the first drugs I started and thankfully the diarrhea stopped and I have started taking humira. I too think I have had it for a long time but was in denial that anything was wrong with me (I thought the diarrhea was from eating the wrong things and being stressed). But the pain in my gut is now a constant reminder. Thankfully that has gotten a tiny bit better but I am still on strong pain relievers. After my doctor diagnosed me--and I am thrilled your doctor is so great--I didn't tell anyone for days, except my mom who has been living with me and taking care of me (I am 32 years old, no longer as independent as I always have been). Joining the forum was a huge step for me because it was complete recognition that I have the disease. BUT it does NOT define who I am. I find a great deal of distractions, like cooking and baking when I have the energy. Like you, I was very active--I climbed a 14,036 foot mountain in May and hike and bike all the time. I am also very close to finishing my dissertation for my doctorate in history; I was slated to graduate in December. Now I've applied for a leave of absence from the university--total blow to me. But, I am optimistic that I will feel better and find comfort in family and friends and now the forum.

Sorry to ramble so much about myself, I hope it kind of helps you feel better? From what my doctor and other folks say, we can get back to our active lives and learn how to take care of ourselves so we don't feel this terrible again!

Let me know what you think and how you are feeling :)
 
thank you all for the support..I was/ and still think am scared especially since joining this forum makes it real: I HAVE CROHN'S. I have been in denial since I was diagnosed and somedays I still am...

I say that I don't have those painful symptoms many of you have: no pain, no blood, only the occasional D. My doctor took a while too to say the word CROHN's, but I guess I am one of you now...

@Michael. Thanks one of the possibilites is Imuran, but I refused since I heard the secondary effects are bad: skin cancer and Lymphoma, but my doctor said her sister has taken it for 7 years and she is very glad she did. So, yes please tell me more about it.

@JDTM and David.. I hear you and the Pentasa effects. My doctor told me that it doesn't work in all cases and that yes it is not a medicine for CD, but that since I am so "nervous" about Imuran, that we should give it a try and wait three months when she will do barium xray to see if the inflammation is under control.. I will mention to her budesodine and see what that does. My Crohn's is in the Ileum by the way, and she did tests for everything: vitamin, minerals, absortion and a month ago for inflammation and she said there was not even trace of Inflamation any where.. so she was very happy about that and that's why she decided to go ahead and try pentasa... claversal is what my friends took, which I believe is the same thing but maybe more specific to Ileum.. not sure.

@Amanda. thank you. I was scared of Pred and my doctor said that I am not a case for it, but I know that i had some ulcers in Illeum when my colonoscopy. I just don't know if they are gone. I have an appointment in three days. I will for sure ask millions of questions.

I just miss going out with friends, having a beer or a glass of wine (I was never a heavy drinker at all, just a beer or a glass of wine), traveling, exercising, and all that. Certainly MICHAEL gives me hope for all this so I am more relax about Imuran. Let see.

THANK YOU ALL. This fight just started for me and I thought I was a fighter, but I am 40 now and I never expected to have CD at the age of 40.
 
I am also a mild case and like you, I was very athletic and active before my diagnosis. I was in denial for awhile as well. Accepting the diagnosis can be a hard thing to cope with. My doctor started me on Lialda (another form of mesalamine). I was on the medication for about 30 days before I decided to stop it. It exacerbated symptoms for me and at the very least, it wasn't helping at all. From the research I've looked at, some forms of mesalamine can take quite awhile to start working though. For me, it wasn't worth the misery to keep taking it and waiting to see what would happen. I'm currently in-between GI docs, as I don't trust the doctor that I was previously seeing. She wanted me to keep taking the Lialda, even though my symptoms were drastically increased. Since coming off of it, I'm feeling much, much better. In fact, the last few days have almost been completely "normal" for me. I am trying a variety of alternative treatments. If you haven't looked into dietary changes yet, please do consider it. Diet may not be a magic bullet for you, but it could help to at least decrease symptoms. It has helped me tremendously. My plan is to start low dose naltrexone-- this is something else that you may want to research. It can be difficult to find a doctor to prescribe it, but I finally found one and my appointment is tomorrow. I'm very hopeful that it may help me. Because it's such a low dose, there are essentially no side effects after your body adjusts to it. I've always been a person that wanted to avoid medications as much as possible. I realize that I may someday get to the point where stronger medications are needed. But until then, I will exhaust all of the alternative treatment possibilities. Good luck to you.
 
Top