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Crohn's Disease
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Posted 10/30/2009 9:10 PM (GMT 0)
hello all, i would like to introduce myself to this forum. Let me give you a quick history on my condition. I was diagnosed with Crohn's disease back in march of this year. Ive been hospitalized twice in the last year for bad flare ups. the last time in the hospital i also had a c-diff infection. I also have a fistula somewhere in my small intestines. The last time i saw my doctor was back in april, and he put me on Pentasa 500mg, 3 capsules twice a day. The pentasa got me through the summer pretty good, only had a minor flare up every now and then..This last month has been somewhat hard though. ive been in pain alot more. The pain is not consistant though, some days i can be in alot of pain, and then ill have a day where everything is fine. My chrohn's is in the typical area where the small intestines meets the large intestines. Right now i can push on my right side, and feel a big lump there, and its painfull to push on. Sometimes i will get a sharp pain in that area that will llast from just a few seconds to about a minute. Also this past week ive noticed my energy level drop drastically. Ive been sleeping 12-14 hours a day.

 I still feel i fairly new to this disease so i thought i would ask a few questions. First off, is it normal that i can feel the inflamation on the right side, should i be worried?  Second, which medication do you recommend i try after pentasa. My doctor back in april said that if the pentasa didnt work, he wanted to put me on remicade. But i feel thats a big leap. Seems like there should be other things to try before going on remicade. Third, does everyone else have a hard time getting an appointment with their gastro doctor. I called at the begining of October when the pain first started, and they first told me Dec 18th was their first appt., after i said i was in pain they said they could squeeze me in on Nov 4. Still a long time to wait while im in pain. Does anyone have any advice on how to get into docs office quicker, or if anyone lives in the Detroit, MI area..do you have a good doctor to recommend.  Sorry to make this post so long, i just alot to get out.

Posted 10/30/2009 11:47 PM (GMT 0)
Welcome, JustCallMeD...
Hmmm...on the wait time thing...I usually don't have to wait, but I live in a large metro area (Phoenix, AZ metro area). This (rural vs. city) can affect your wait time, but so too can the quality of the doc and their staff. JMHO, but ask around and see what the std wait time for other docs in your area is, cuz to me, this seems like a long wait time for an established patient. You may have to look for a different doc.

The med thing...I know it is scary, but meds DO help if you are feeling lousy. Usually at this stage of yuckyiness, docs either go with steroid or biologic...both have pros and cons...Again, JMHO, given the choice of feeling like poo (and going poo too), or taking a med...you may wonder why you didn't do so sooner instead of feeling so horrid for so long.

BTW, your post wasn't too long. Understanding and information helps understand your disease and your body better. It also helps to know that you are not alone in your struggles. Again, Welcome...
Posted 10/31/2009 4:47 AM (GMT 0)
welcome to the forum D :) I also have inflammation on the right side, IDK if its normal or not tho, the scope and SBS say I have Crohnes in 2 parts of the colon and the terminal ileum so if its not normal - we at least have that in common lol. Also wanted to tell you, I just had my 3rd Remicade infusion (also been taking Pentasa for a few months) and its not in remission yet but I am finally getting control of the bowels again :) Remicade seems really scary, and I understand it does end up bad for some, but overall its a faster way to get better (in my opinion anyways - for what its worth being a newbie!!). Feel free to message me anytime - Best of luck to you~
Posted 10/31/2009 9:38 AM (GMT 0)
Hi, Welcome aboard! Sorry you are having a hard time at the moment and i hope you get it sorted soon i too would like to say although the remicade sounds scary it does work wonders for some people i had  two doses of it and felt great after the first dose had so much energy. then got a reaction halfway through the second dose and was taken off it. This hasn't put me off remi i would try it again i think you get to the stage where the pain is so bad you will do anything to get rid of it  good luck and let us know how your getting on Bev x smilewinkgrin smilewinkgrin
Posted 10/31/2009 3:53 PM (GMT 0)
Hi and welcome to Healingwell. Yes many Crohnies experience right sided pain as that is the most common location for Crohns. I personally think I would try 6mp first before the Remicade. Some docs start at the lower drugs and others start with the big guns. We have a longterm Crohnie member hear who has had success for over 10 years with 6mp. Yo might want to talk to your GI about that.

Also, for the cramps and pain you might ask your doctor for something like Librax or Bentyl. Those are anti spasmotics that really help with the cramps/spasms we tend to get.

Also, remember when first diagnosed it is usually the worst for most as it takes alot of time to get diagnosed and find the right treatment for YOU. Good luck and keep us posted on how you are doing.

Hugs
Gail*Nanners*
Posted 11/1/2009 4:36 PM (GMT 0)
Welcome :) I can only say what is "normal" for me but I also have CD in my terminal ilium and when I'm in a flare there is a huge lump on my right side. It feels like it is swollen and hard and you can see it just by looking at my stomach but its just the inflammation. Once they get your Crohn's under control, that should go away. Have you been under a lot of stress lately? I always flare at the beginning of the school year and then whenever I have a lot of stuff going on. I also have a lot of fatigue with my flares...there are days I can't stay awake or wake up to save my life lol.

I would definitely talk to your doctor about all of your options if you are hesitant to start Remicade so early in your treatment. Everyone responds differently to different medications but I know that I have been able to maintain (for the most part) on Pentasa for about 3 years. They originally had me on 2250mg a day but that wasn't cutting it and I flared really bad after a car accident so they put me on Prednisone for about 2 months to get it under control and bumped me up to 4g of Pentasa a day. That worked for me for about 2 years so maybe that is something they could try with you...maybe some short term antibiotics or steroids and increasing your dosage. I've been flaring a little again and they've put me back on steroids to get everything under control again. I figure that its not so bad for me to have to be on steroids for a month every now and again if it keeps my CD in check.

However, Remicade can work really well for some people. I was on it for a few months and it didn't do much for me but I didn't have any of the side effects that I was so scared of :) The number one thing that I will tell you is if you have any questions...ASK! :) That is what your doctor is there for. You have to be your own advocate to make sure that you are getting the care you need and deserve. It is so easy for us to assume that our doctor knows whats best and not bring up questions or concerns...or even find out other treatment options.

I think that is a really long time to wait for a GI appointment. If I'm sick, I fully expect them to see me within a week. In my opinion, if they really care about their patients...they will make time to see you for 10 minutes somewhere in their day. I've been to several GI clinics because I move a lot and I've never had to wait while in a flare...I even had one GI that called in a new prescription for me over the phone because I couldn't get in to see him fast enough.

Best of luck!! <3
Posted 11/2/2009 8:56 PM (GMT 0)
hi and welcome to crohns forum i am on pentassa 6 a day and take purinethol one a day
u will find as u go on u will get the right tablet to suit u well myself i was put on purinethol
about 2 yrs and i seem to be ok so please god u will get the right meds to suit u
mull
Posted 11/2/2009 8:57 PM (GMT 0)
hi and welcome to crohns forum i am on pentassa 6 a day and take purinethol one a day
u will find as u go on u will get the right tablet to suit u well myself i was put on purinethol
about 2 yrs and i seem to be ok so please god u will get the right meds to suit u
mull
Posted 11/2/2009 8:58 PM (GMT 0)
hi and welcome to crohns forum i am on pentassa 6 a day and take purinethol one a day
u will find as u go on u will get the right tablet to suit u well myself i was put on purinethol
about 2 yrs and i seem to be ok so please god u will get the right meds to suit u
mull
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