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hello, i have had crohn's for 24 years

randynoguts
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if anyone need some info or has a question i would be glad to help. i think i have successfully tackled most problems that come with the disease. so ask away! randy

Explore topics in this discussion:

Exercise Surgery Crohn's disease Imuran Irritable bowel syndrome Acid reflux Ulcerative colitis Pregnancy Vicodin Digestive health Chemotherapy Lupus Prednisone Flagyl Endometriosis Stress Gallstones Fever Physical therapy Anemia Constipation Pain Diarrhea Prilosec

39 replies

Kim1975

Hello Randy,

My sister was diagnosis with Crohn's three years ago. After she had her second child, she got really sick. She was unable to control her Crohn's with oral medication so now she is on the infusion drug. How do you deal with your Crohn's on a daily basis?

randynoguts

hi kim, sorry to hear of your sisters diagnosis. i have met a few women who were diagnosed during pregnancy or right after. must be a hormonal trigger? as for the day to day, you just have to deal with it. i will assume by infusion drug you may mean remicade? if so i am getting ready to resart it myself after a 8 year break. seems i have a new fistula . i have had no luck with most oral meds either, only prednisone works for me but i have taken so much over the years it is not really an option unless its an emergency. let her know she is not alone and there are lots of us out there. :0) randy

Kim1975

Hello Randy,

Sorry to hear you are having to go back on Remicade. Yes, that is the infusion drug she is taking, every eight weeks.
My sister was told that once she committed to taking the Remicade, she would never be able to come off of it due to her body building up ammunity to it.
Can you fill me in on what your experiences have been with the Remicade? I was strongly against her started the drug. She is only 30 years old.

I will keep you in my thoughts and prayers.

Take to you soon,

Kim

randynoguts

well i have been on and off remicade twice. you can stop it oviously if its not working for you, or if you get an infection etc.. i really dont see why some drs feel you can never stop it.. try going to the company web site and read the info there. i think its "centocor" . she will have to watch any cuts or other injuries as it does mees with the immune system. i would not worry too much many thousands of people have used it. randy btw, if you want check out my crohn's website, it is www.randynoguts.com. dont let it scare you though. my time with it has been very unusual..

TinaIrena

Hi Randy,
My sister was dianosed with crohn's about three years ago also, she had an allergic reaction to remicade so that wasn't an option for her, she has been on steroids many times, at this point she has just started using humira "sp" so far so good, however she is constantly plagued with terrible rectal absesses , which she has to have lanced, "ouch" any suggesstions?
Thanks,
Tina

randynoguts

thats too bad, i am currently going through an abcess myself. (ouch). i hope she can get some relief, i know they are a pain.

mariec22

MY 13 YR OLD GRANDSON WAS JUST DIAGNOSED WITH CROHN'S. HE TAKES THESE HUGE BLUE PILLS, FLAGGLE AND PRICOLEC. HE JUST CAME OUT OF THE HOSPITAL BECAUSE OF A INFECTED FISTULA, HIS SEEMS TO BE UNDER A LAYER OF SKIN. I KNOWN WHAT THE DISEASE IS BUT DON'T KNOW WHAT THESE MEDS DO. HE IS ALWAYS GETTING BROKEN BONES OR SPRAINS. IS THIS COMMON. HE GOES TO THE BATH ROOM ALOT BUT DOESN'T HAVE A,LOT OF PAIN. HE HAS BEEN MISSING ALOT OF SCHOOL AND IS SINKING FARTHER BEHIND. CAN U PLEASE ADVISE THANKS

randynoguts

hi marie.. well i think you mean flagyl, and prilosec. first oof im sorry to hear he is having this problem so young, very unfortunate.. the Flagyl is an antibiotic, that has shown some promise in helping to heal the Fistula's we may get.. they don' tknow why, but it seems to help along with killing some bacteria in the gut and body as a whole.. he must continue to take it untill he is done and the dr says stop, or it wont do any good.. as for the Prilosec, that is an anti stomach acid pill. this also may help with healing and acid reflux and maybe even some vomiting of bile and acid from the stomach. as far as i knoe i have never encountered anyone with Crohns that has problems with broken bones or sprains.. that sounds like a whole differant problem.. what does his dr say?

srebecca79

Hi Randy..I'm not sure if I have Crohn's disease yet. I have been sick on and off for the last 3 yrs and it all started happening after I had my daughter. So far, Pancreatitis, Gallstones, and Endometriosis have been ruled out. I saw a GI specialist 2 wks ago and he wants me to get a colonoscopy and upper endoscopy and thinks I have symptoms of Crohns but I can't get them until January. Until then I have to wait and feel crappy! I just wanted to tell you some of the symptoms I have had and see if it sounded like what you've had over the years with the disease. I sometimes get diarrhea but more constipation-I have had blood in my stool. I also get frequent heartburn/indigestion which I never used to get, it seems like no matter what I eat I get it. I will also get horrible crampy abdominal pains and feel like I have to poop and then I can't! I don't vomit often, but will get extremely nauseous and lose my appetite. I sometimes will be fine for days/weeks at a time and then I will start having the symptoms again. Throughout these last 3 yrs that this has happened, I've also gotten migraines and very frequent UTI's ( I don't know if it's totally a seperate issue or not) but considering you've lived with the disease this long I figured you may know. I'm just really sick of feeling sick! And not knowing what's wrong with me..and I also feel very fatigued. I get plenty of sleep and some days I feel like I still need to sleep more. I'm young, I eat well, and do exercise so I don't know why I should feel this way unless something is wrong with me...Please give me your input. Thanks

randynoguts

hello rebecca, well it sure sounds as if thats what may be wrong.. just remember i am not a dr! some of our fellow crohns sufferers complain of constipation although that has never occured with me. the nausea after eating is classic. the blood is also a telling sign.. the indigestion is also a good indicator, the feeling well for periods and then feeling bad again follows the pattern, im curious , how did you feel during your pregnancy? many of the women i know who have crohns have almost a complete absence of symptoms while they are pregnant, but sometimes get much worse after. they dont know why but it is suspected that the hormone change has something to do with it.. i would like to caution you about a couple of things. a colonoscopy and an endoscopy CANNOT see all the intestines therefore if your disease is farther than the reach of the scopes then it will not be seen. if they dont see anything, i would ask for a camera pill exam.. you swallow a small camera in a pill and it takes photos all the way down and out.. also if they tell you you have IBS "irritable bowel syndrome" find a new dr.. ibs does not make your bleed.. IBD or "inflamatory bowel disease" like crohns or ulcerative colitis does.. another subject you may consider is health insurance and life insurance.. if you dont have either now it would benefit you to do so before being diagnosed.. it will cost you alot more after. or if you can get it at all. if you have anymore Q's just let me know.. randy

srebecca79

Thanks Randy. I actually have Medicaid since I'm a single mom and nursing student. I'm lucky since I get covered but unfortunately there is the politics to it as well, hard to getting specialists. During my pregnancy, I had constipation, but I didn't really start having these other problems until after my daughter was born, until end of 2005, a lot more into 2006 and they just gradually getting worse. I just recently got a fash rash and got a test done to check for Lupus (ANA) and it was negative so now they just want to wait for the GI appt to see what happens. Thanx for the suggestions, I will let u know what happens. Sick of waiting :(

networkmom

Hello, My husband has crohns and right now only taking endocort. He also is on an injection called enbrel, this is suppose to be for his joint pain, he also takes vicodin for the joint pain. Is joint pain a normal symptom of crohns? Also the tiredness, my husband is tired all the time. The Dr.s wanted to try humira but our insurance co. said we had to try the enbrel first before they would approve the humira. Does anyone know about these meds. and also if my husbands symptoms are normal? he sometimes just feels so hopeless and is depressed alot and cranky.

Denise

randynoguts

hi denise, i have had some joint pains over the years.. enough that i neede physical therapy for a while.. Crohns, seems to affect some of the large joints like hips , knees and shoulders occaisionally. not everyone .
tiredness? yes that seems pretty standard.. dont really know why.. has he been checked for anemia?

humira is very expensive , so i could see the ins. co. wanting to try something else first.. if its not working though i would not let it go on too long. write the ins . co. if you have too and file a protest.

hopeless and depressed? yeah, some.. chronic illness and pain can do that to ya. has he discussed this with his dr? and has his dr suggested anything? like anti depressants? good luck

networkmom

Hi Randy, We are not sure if the enbrel is doing anything or not, since my husband has been out of the vicodin they have him on he has more joint pain than before. They had him start the injections and the vicodin around the same time which I thought was stupid, so we are wondering if maybe the vicodin was the thing that was actually helping with the pain, who knows though? Yes Dr. prescribed my husband anti depressants but he will not take them. He also smokes which from what I read does not help the crohns any, well he says he did quit since New Years but I am not 100% sure that he did.

randynoguts

well denise, if he wont take them, what can you do? i know lots of us that take them to get by.. well as you and he know smoking is never a good thing whether you have CD or not.. hopefull he can lick it. i wish him luck!

srebecca79

I finally had a colonoscopy and EGD done 2 days ago. They found very bad inflammation in the stomach, esophagus, and duodenum. I had a polyp in the sigmoid colon. I remember the dr telling me I'm young to have a polyp. Are all these typical of Crohns? I have a f/u appt with the GI dr in 4 weeks. A few hrs after the procedure I was having horrible cramping where they did the colonoscopy and they made me go back to make sure there was no bowel perforation. It was fine, however my white blood cell count was slightly elevated and I had a low grade fever. I also have had my liver enzymes elevated many times and they have never figured out why? Have you had any experience with this?

randynoguts

hi rebecca, never had a polyp. i dont remember ever reading that polyps and Crohns go together in any way. as for the inflamation in the duodenum stomach and esophogus, yes lots of us have that.. that may be as simple as using a prescrition strength acid reducer or preventer.. the cramping after a colonoscopy is pretty normal as the fill your colon up with air when doing the scope.. and being manipulated the intestines tend to shut down for a bit.. so the combo of slowing down and being full of injected air can be quite uncomfortable. liver enzyme tests being elevated also seems to be "normal" often without a dicernable cause. your dr should have the pathology results from the polyp and any other biopsies before you go back to see him/her. be sure to get these results when you go .. randy

NickandKaty08

Hello I believe you talked to my husband a couple of months ago when I was first diagnosed with CD. Well there for a couple of weeks after my hospital discharge things seemed to be getting better. But now everything is acting up again I cant keep from being nauseated and the suppositories dont have a chance of staying in due to the diarea and thus I cant keep my meds down most days ?!?!? I am so confused and at a lost I dont know what to do anymore!!!! I just want to be normal again any advise on how to cope would be great!!

GI_dysmotility

So does the Remicade help or stop the fistula from progressing? Or are they just treating you again because the fistula is a sign of activity?

In '98, mine progressed from a pea size to a horseshoe fistula (the bottom of one butt cheek to the other bottom cheek).

GI_dysmotility

I think at some point, constipation is normal during pregnancy.

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