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remicade humira surgery OH MY!

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Crohn's Disease
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Posted 9/26/2007 4:45 PM (GMT -8)
ok, so i am a bit freaked out here. short history: i was diagnosed 8/8/07 with chron's in the ti and i have about 8 inches of diseased intestine with stricture. i have been on pentasa since then. it has definitely helped with the d and somewhat with the pain? been on entocort for just over 2 weeks now, my appetite is almost back to normal though i am having headaches and muscle fatigue. guess you gotta compromise some things, eh? i am still having pains from time to time, maybe 10 or so times a day that last a few minutes, right around the time i usually eat but, especially after i eat. they come and go and sometimes they happen at night and wake me up but, nothing anywhere near the hours of pain i would experience or the intensity. i explained all this to my gi today and he is thinking about maybe having me try remicade or humira. my other option is to talk to a surgeon. now, it seems these drugs are like the end of all crohn's drugs and given to patients with severe crohn's. it just feels too soon for me. i mean, what makes more sense, try these drugs or face surgery? is it too soon to try either of them? i have a stricture due to scar tissue and i assume that will need to come out sooner or later. is there a point to taking more drugs if i need to have surgery anyhow? if anyone has any insight, please share!! THANK YOU!!!
Posted 9/26/2007 5:13 PM (GMT -8)
Speaking as a fellow sufferer and not as a medical expert, there are several other meds to try. it sounds as though you're improving, and Entecort does take time to start working. IMHO surgery should be a last resort, becuase it's not a cure, and you risk complications any time you have surgery.

I've been on Pentasa, 6MP, entecords, Cirpo and Flagyl, and have been injecting methotrexate, which I'm probably stopping becuase the recent CT scan downed no improvement.

I had remicade with no improvement, I actually got worse. Also, remicare is an infusion that takes a couple of hours, and Humira is an injection you give yourself. Both can be very expensive (as are entecort and pentasa).

Bottom line, please consider a second opinion before you go further. I've done a lot of reading since being diagnosed 12/04, and it takes time to find what works.

What tests did you have to be diagnosed?

Good Luck!

Susan
Posted 9/26/2007 5:37 PM (GMT -8)
hi susan. testing i have done since july - ultrasound, upper & pelvic ct scan (showing narrowing), colonoscopy w/ biopsies and small bowel follow through (also showing narrowing). my gi is going to consult with another gi about my case and come up with what the next step is for me. he did mention maybe having me go in for another colonoscopy to look at my stricture. honestly, i am really afraid of taking humira or remicade. i for one, can not stand needles. i nearly pass out having blood work done, which i am going in for for tomorrow. EEEP. i have no idea how i would handle meds that require multiple injections :( and the side effects are frightful. thanks for your reply!
Posted 9/27/2007 5:18 AM (GMT -8)
I'm lucky, needles don't bother me.

I went to Mt Sinai and saw the surgeon last may becuase the CT Scan showed worsening after 4 Remicade treatments. I have multiple strictrures with proximal dilatation (think squishing a water balloon in the middle) plus a 12" inflamed section. The surgeon was not anxious to operate. neither was the former head of the Dept whom I had a two hour consultation with later that day. He increased my entecort from 9 to 12mg/day, added methotrexate (which I'm not recommending), and imipramine, a low does of an antidepressant which has pain benefits. What he told me was that he expected I would need surgery, but wanted to try more things medically before deciding that.

Alot of managing Crohn's is quality of life. if you can live with the symptoms and keep track of the "plumbing," that's helpful. Unfortunately it's not like diabetes where you can test your blood sugar and know how you're doing.

take a look at the CCFA website, there are a lot of good resources there, and if you haven't already, read Jill Sklar's book, Crohn's and UC, the first year. She's a fellow sufferer adn a medical writer.

Susan
Posted 9/27/2007 5:27 AM (GMT -8)
The key question with stricturing is the origin -- is it largely from inflammation? Then medications may reduce that inflammation and the narrowing. But if it's mostly from scarring that is permanent damaged and can't be helped by meds, except to prevent or postpone further inflammatory damage. With scarring, surgery is likely the best option. Hard call, eh?

Posted 9/27/2007 5:47 AM (GMT -8)
good morning susan. thanks again for your input :) i've done mucho research on the ccfa. i think someone else mentioned that book from jill sklar, i'll have to check it out! ty!
Posted 9/27/2007 5:53 AM (GMT -8)
Hi If your GI is recommending Rem. or Hum. what kind of improvement does he think will happen. There is possibility of CD returning to the same sight with operations. I know the drugs can be scarry too so I guess you and your Dr.s will have to work that out. Also is he going to ask you about the Rem and Hum. after surgery if you have it?What about dilation of the stricture can that be done? If you have the meds will it heal the area of bowel that is bad is it bad from inflamation? Hope you get things worked out soon. lol gail
Posted 9/27/2007 5:55 AM (GMT -8)
hi mike. i know i have scarring in my ti, from what my gi said. does scarring = stricture? maybe some of the narrowing is from inflammation as well as scar tissue? i am not opposed to surgery as i have read a lot of people have gone into long remissions after resections or stricturplasty. and i find that encouraging. it is hard weighing out the options. if i do go in for a second colonoscopy maybe that will give me some answers on the stricture. but i am totally dreading going through that again :/
Posted 9/27/2007 5:58 AM (GMT -8)
hi gail. those are all great questions i will take into consideration next time i talk to my dr. i have found no matter how much questions i have for him, 100 more pop into my head as soon as i walk out the door! this is all still so new to me, it's all quite confusing!
Posted 9/27/2007 9:45 AM (GMT -8)
***UPDATE***

went down to do my blood work today, my gi happened to be in. he discussed my case with another gi and showed her all my oh so lovely pictures. they feel the entocort may not be penetrating the thickened intestinal wall therefore i am going on prednisone tomorrow. starting with 40 mg for 2 weeks and decreasing over the next 3 months. after that he's decided he wants to try me on 6mp. and if all else fails, then i will be talking to a surgeon.

i have decided i officially hate the crohn's mad
Posted 9/27/2007 10:25 AM (GMT -8)
Have you asked the GI about starting 6MP after a couple of weeks on the prednisone? 6MP takes a couple of months to kick in. I flet quite good on it, but my iron went in the basement so I had to stop. However, the doc I went to in NY thought perhaps the iron was so low because of the Crohn's, not the 6MP. If your problems are mostly from inflammation, then definitely all of these things can help, but they're not going to change the physical things like strictures and scar tissue.

Susan
Posted 9/27/2007 11:24 AM (GMT -8)
i have to check in with him in a few weeks to let him know how i am feeling. i will ask him for more info about the 6mp if i don't see much of an improvement. thanks!
Posted 9/27/2007 12:19 PM (GMT -8)
Hi I see your starting the pred. hope it releaves your pains soon and you should notice your BM's getting better too. lol gail
Posted 9/27/2007 4:05 PM (GMT -8)
thanks gail! that is great news for sure :D little scared about the side effects, hopefully i won't have many
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