back from the gi ...

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dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/30/2007 8:56 AM (GMT -7)   
i was written a script for 6mp and sent off to have blood work done. should have blood work back in about a week to make sure i can go on 6mp. he also ordered an endoscopy and that will be done on thurdsay. he wants to make sure i am not having pain from something else going on in my belly. my next follow up is on dec 7th. if the 6mp does not kick in over the next few months i will be talking to a surgeon. at this point i don't care what i have to do to have one freakin pain free day. and i told him that! he thinks i am too young to start with the surgeries because it can come back at any time. but he told me i will need surgery, he wants to prolong the time before i do have to have a resection. i don't understand that. he even said, "you will probably feel a whole lot better after surgery". and that made me feel SO much better about trying a new med that is going to take months to kick in. he was pressing on my belly and said he can feel the thickened part of my ileum. what does that mean? that all the steroids i have been on haven't made a lick of difference? i am so not trying to be negative right now. anyone got some positive 6mp stories they want to share?

</rant>
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 20mg prednisone, 4000mg pentasa daily & vicodin for pain


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 10/30/2007 9:23 AM (GMT -7)   
no stories, but i'll be on that shortly...the thickening sounds like scar tissue/inflammation. Since you've been in pain for so long I don't understand why you wouldn't opt for the surgery?! That's ridiculous, I swear docs don't know what the hell they're talking about sometimes. They just go by the textbook, I think, and don't consider how much pain we're in. I hope that you get relief soon, and let us know what you choose to do. I think you have every reason to be irritated. I'm so sick of this pain I'm constantly in that I'm losing my marbles!
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs.  Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet for pain; Protonix 40mg---was on Flagyl/Cipro for two weeks,(a few weeks ago), was supposed to be on it for three weeks but the cramping and diarrhea it caused made me stop


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 10/30/2007 11:05 AM (GMT -7)   
I understand your frustration, but I also can appreciate your physician's point of view. Sure you will probably feel better after your surgery and hopefully you will have many, many painfree years, but ... what if you, like me, suffer a full relapse less than six weeks after your resection? We know the crohn's is going to come back and it can happen that quickly. So your GI would not be doing his/her job if he didn't try to manage your disease medically for as long as possible and if 6-MP can open up the diseased segment of your bowel and get the inflammation under control you will likely gain at least another couple of years before having to undergo the knife.

Ultimately, whether or not to take a surgical route is going to be your decision. If you are determined, you can ask your GI for a referral to a surgeon, and it will be arranged. But you have a lot of life left and you don't want to run out of life before you run out of bowel -- that's what your GI is concerned about and he is following best practice in doing so. Maybe you will decide that the best standard of practice isn't working for you, and that's ok. Only we ultimately know how much we can tolerate. So if you have really decided that enough is enough, then communicate that and ask for a referral.

But you may find, if you are prepared to give the 6-MP a few months to work, that things will settle down and be at least tolerable.
Belleenstein:

30+ years living with Crohn's.


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/30/2007 11:50 AM (GMT -7)   
hey jenny - thanks so much, i will definitely keep you guys posted ..sure i will have more questions/complaints/rants/comments/etc SOON! :)

belleenstein - always with sound advice! 6 weeks, that is terrible. i do hope that if i do go in for surgery that i will have a longer remission than that. i hope that your case is not too common, i wouldn't think so? i am defintely willing to give the 6mp a try, just a little worried about more side effects from more meds. really i am just frustrated and being cranky i think! thanks for the reply, i really appreciate it :)
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 20mg prednisone, 4000mg pentasa daily & vicodin for pain


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 10/30/2007 12:08 PM (GMT -7)   
stephanie....on the postive side, your doc is considering all options for your care. I had surgery right away, but not by choice...that was followed by years of limited to no care. I was lucky. They are finding more and more now that surgery is not likely the best first plan of attack. I was lucky that they "got all" of the infected area in the surgery and that I did not get another affected area for a long time. Now I am in the same boat as far as meds 6mp/Imuran is next for me...see my GI 11/8 to finally surrender to the "big meds".

Waiting is hard, but if the meds work and surgery is postponed for a long time wouldn't that be good too!
Best of luck!
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/30/2007 2:33 PM (GMT -7)   
habs - thanks for your support :) yeah i totally hate the waiting game but i am going to try and be positive here and give it a shot. well, next week as long as i am cleared to take it. good luck at your appointment!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 20mg prednisone, 4000mg pentasa daily & vicodin for pain


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 10/30/2007 3:01 PM (GMT -7)   
There seems to be two schools of thought: early surgery improves quality of life and USUALLY delays recurrence, start on 6MP or Imuran IMMEDIATELY after surgery - the other school of thought being saving as much bowel for as long as possible. After all we don't have an infinite amount of bowel to play around with.

They are trying, at least in Europe, to determine and catergorize different subsets of Crohn's disease: stricturing, fistulizing, etc. and relating that to the best surgical candidates for long term remission and those who most need to hold on to as much bowel for as long as they can.

I'm thinking it was PB4 who has posted some links to articles about this categorizing of Crohn's disease.
 
And, by the way, I've had wonderful results w/6MP's "sister" product, Imuran, for 9 years now. Its kept me in symptomatic remission and/or full remission all that while so far. knock, Knock, KNOCK!!!


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 10/30/2007 4:03:49 PM (GMT-6)


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/30/2007 7:36 PM (GMT -7)   
crohnietoo - interesting stuffs! see, coming from my point of view and not a dr's, i would think the younger you have surgery they easier your recoup would be. but i guess it makes sense if they are trying to break down the catergories. great to hear you have done so well with imuran, too! thanks so much for the reply!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 20mg prednisone, 4000mg pentasa daily & vicodin for pain


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/30/2007 7:48 PM (GMT -7)   
Stephanie,

You and I often seem to have similar things going on. I saw the GI today too. Had a long talk about Remicade vs. 6 MP. Started 6 MP today. (Did bloodwork but he told me to start anyway...interesting that you have to "wait" for your results first.)

I'm not having as much pain as you are -- so surgery is still not being discussed in the short term. But, I am having trouble getting out of this "flare" (D, C, mild to moderate pain, bloating, etc.) and much to my dismay, am sticking to the current 20 mg dose of steroids. His plan is to wait two months and then consider Remicade which sort of surprised me since I thought you had to be much "sicker" to consider Remicade. He said that more and more doctors are going to Remicade before 6MP now, and using it as an early treatment, but he still wants to be conservative, which is fine with me.

Good luck with all your decisions -- I truly hope you feel better soon,

Jeanne
44 years old, newly diagnosed in September 2007 but symptoms for several years before that.
Medications: Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
Single working mom to three wonderful kids, ages 9 to 15.


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/30/2007 8:12 PM (GMT -7)   
jeanne - that is some pretty freaky coincidences we've got going on! before my gi even talked about prednisone he had mentioned remicade or humira but after discussing my case with some other gi's he decided to go the pred/6mp route. as far as the blood work goes, i want to say he was checking my tmtp levels, or something like that. i am still confused what exactly a flare is. i seem to not be able to get out of one if that's what i am experiencing. my bm's have been a lot better since i have been on steroids. i do tend to get bloated a lot and sometimes only have bm's every other day. it's mostly gut wrenching pain in my upper abdomen and occasionally on my right side. the pains on my right side are not nearly as bad as my upper abdomen pain. still, it's every day. and i am sick of this low residue diet :p

good luck with your new meds, hope you are feeling better soon too!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 20mg prednisone, 4000mg pentasa daily & vicodin for pain

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