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Crohn's Disease
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Posted 8/28/2010 12:28 AM (GMT 0)
 

so my doctor says i have a "crohns stricture" and we need to treat it.  i have a stricture in the duodenal part of the intestine, which he says is caused by chronic inflammation, which is probably caused by crohn's.  he has confirmed this by doing 2 scopes.  i have done a little research, and i don't really follow any of the other "symptoms", besides an occasional discomfort in my stomach that lasts for only a minute.  this discomfort happens in random spots of the stomach, and maybe happens once a day.  but its the stricture that brought me to the GI, since i was having some discomfort in the same spot a cpl hours after every meal.  he has blown the stricture up with air, but says this is only a temporary fix, and we need to treat the cause; the chronic inflammation thats around that part of the intestine.

so, he has suggested humira or remicade.  now upon googling these things, i was terrified, as most probably were at first too.  he says he feels treating this from the "top down" is the better route, than "bottom up" which will contain many drugs that "don't really do any good." confused

so i just wanted to throw this out there and see if there was anyone else in this community that has the same stricture problem that i have, or maybe the inflammation problem, and see what drugs they are taking, and what type of improvement they have noticed.  also wanted to discuss other drugs out there with him, but didn't know what all was out there.  so any input would be greatly appreciated. i will be checking back daily, so thanks for your help.

matt

Posted 8/28/2010 1:03 AM (GMT 0)
New 2 this, Sorry we need to meet this way but welcome to healing well. here you'll meet knowledgable and caring people who have experience with this disease. I too have a stricture and I'm on Remicade to keep it kinda under control. I don't know which Dr.s theory is right use the 'big guns' or start with the weakest and work up. I went through the list from weakest to strongest and it was a very frustrating 5 years. The only drugs that worked for me were Prednisone and Entocort, both steroids that you can't stay on for long periods of time. Both have very serious side effects as well.My quality of life was bad throughout these 5 years and I think I'd have been better served to have started at the top right away. If you start at the top and it puts you in remmision that would be great but I don't think a stricture will go away without surgury. My personal opinion is, if your quality of life is good, I'd suggest asking your Dr. to start in the middle or even the bottom as you have the time to experiment with what will work for you. Plenty of people here have had good results starting with 5-asa's. maybe you should start there.
Posted 8/28/2010 1:19 AM (GMT 0)
yeah, i don't really have any complications, other than the occasional discomfort from the stricture, and the occasional "poking" in my side, that im guessing is the crohns. i meet with him weds, so im trying to gather the info for the follow up to the scope he did last week.

as for surgery, he said the stricture is in the lower duodenal part of the intestine, and you don't really wanna operate in that area unless you absolutely have to. something about having to bypass a part of the intestine.

what are these "5 asa's" you mentioned?

thx.
Posted 8/28/2010 2:25 AM (GMT 0)
hi,
the asa's are asacol, salofalk, and pentasa, all 3 work the same but dissolve in different areas of the intestine.. Ihave been on salofalk and asacol and both did nothing at all. I think for moderate to severe crohn's they are a total waste of time. But, with your symptoms I agree with pp. I would not go with the big guns right away...
Posted 8/28/2010 2:30 AM (GMT 0)
oh and the SCD is the specific carbohydrate diet, by Elaine Gottschall (sp?)
ITs quite strict, no grains, homemade dairy.. you can make breads and stuff with ground nut flour. Many people swear by it. I know I do better when I ditch the sugar and grains,, but somehow I keep eating them. WHat makes it hard to stay away is that I can eat anything (except copious amts of popcorn) when I'm not in a major flare.

I don't have strictures that I know of but you may want to be careful you don't get a blockage. Might want to go easy on the fiber and roughage.
Posted 8/28/2010 2:39 AM (GMT 0)
I went to a crohn's presentation two nights ago. the young GI doctor said that the thinking is begining to shift to the "big guns" first routine. I have to wonder whether this is in any way driven by the big pharma's trying to improve their bottom lines $$$$$$

But on the other hand; years of impotent drugs allowing damage to build up in your GI tract may not be a great idea either. I am on remicade. The dangers and side effects are NOT all that bad. Here is a video discussing it that I highly recommend
http://programs.rmei.com/CCFA139VL/start.html

You don't seem to have very severe disease as you describe it but then how did you end up with a stricture??? If your disease is moderate though what could be the harm in starting with the milder medications?
Posted 8/28/2010 2:49 AM (GMT 0)
i guess its the inflammation around the intestine that he wants to try and get under control. is this "inflammation" common with crohnies?
Posted 8/28/2010 2:53 AM (GMT 0)
yes- signature.

fun guy- exactly

Dear Doc:
Patients + Humira= trip to Caribbean!

Love,
Abbott Pharma
Posted 8/28/2010 3:13 AM (GMT 0)
" is this "inflammation" common with crohnies?"

 

 Inflammatory Bowel Disease yeah

As far as getting your inflammation under control; I wonder if the doctor plans to give you a course of steroids? 

Post Edited (FunGuy) : 8/27/2010 9:16:28 PM (GMT-6)

Posted 8/28/2010 3:34 AM (GMT 0)
i didn't know crohns was considered IDB. oh, and that video was great funguy.
Posted 8/28/2010 3:39 AM (GMT 0)
i was checkin your sig Tara, but unfortunately, i don't know what any of those are, or what they relate to..... cry
Posted 8/28/2010 3:43 AM (GMT 0)
FunGuy said...
You don't seem to have very severe disease as you describe it but then how did you end up with a stricture??? If your disease is moderate though what could be the harm in starting with the milder medications?

i guess i didn't know that ending up with a stricture was considered severe. i guess i thought maybe it was just common among crohnies. i guess thats the lack of experience with this disease talkin tho............
Posted 8/28/2010 5:01 AM (GMT 0)
I don't know what's better, bottom up or top down --- to be honest, NONE have worked for me except Pred which sucks.

Sorry to sidetrack the conversation, but Tara28, it looks as though you're on the Anti-Map therapy. Does that work for you? I am strongly considering it, but it seems like a big hassle to fight with my doctor to try to get it. Thoughts?
Posted 8/28/2010 8:24 AM (GMT 0)
Mesalamine, 5-aminosalicylic acid , 5-ASA, Pronunciation: me-SAL-a-meen are a group of asprin like medications that reduce inflamation in varing areas of the digestive system. Your Dr. would prescribe the correct one for the area of your crohns which is the duodenum. 5-asa's are usually well tolerated by patients without serious side effects and are often the first choice of Dr.s starting treatment from the bottom.
Posted 8/28/2010 8:35 AM (GMT 0)
Here's another reference article from the Crohn's and Colitis foundation of America that you should read that will better explain the drugs used for crohn's.

http://www.ccfa.org/info/treatment/maintenance
Posted 8/28/2010 1:34 PM (GMT 0)
The following link takes you to a description, with pictures, of the traditional medications...for where your Crohn's is located, the 5-ASA med you woud use is Pentasa.  Also shows a pyramid identifying the progression from  the least to the most aggressive meds.    

http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_id=AF793A59-B736-42CB-9E1F-E79D2B9FC358&GDL_Disease_id=291F2209-F8A9-4011-8094-11EC9BF3100E

Dietary interventions that can be tried are the SCD diet www.breakingtheviciouscycle.info and the Maker's Diet http://www.makers-diet.net/

Nontraditional medications include LDN (low dose naltrexone) http://en.wikipedia.org/wiki/Low_dose_naltrexone and anti-MAP therapy http://www.crohns.org/treatment/index.htm

Because you have a stricture, you do need to start treatment right away, maybe with Pentasa. Especially if you have no symptoms, you will need to check your sed rate and CRP (markers of inflammation) in your blood after you have introduced the med, to make sure it is working. With the right medication, there's every chance the stricture will disappear when the inflammation is gone...the goal is to treat the stricture before it gets worse.

The risk is that it could built up scar tissue, which never goes away...if there's too much scar tissue, the only way to remove it is through surgery. You might already have some scar tissue...so you would want to avoid building more.

My daughter, when she had a stricture, felt fine with nearly no symptoms until she suddenly landed in the hospital. The problem with a stricture is that as soon as there is a flare, it can cause partial or complete blockage: very painful and might require a trip to the emergency room for IV hydration. Also, there's a risk of perforation during blockage.

My daughter's stricture disappeared with meds and diet. 

Posted 8/28/2010 2:20 PM (GMT 0)
wow, thanks to all for the great info. i will start researching the links provided........
Posted 8/28/2010 11:48 PM (GMT 0)
I'm like you, new.2.this, I hardly had any symptoms at all until suddenly I was lactose intolerant and passing blood & mucous.

I've heard over the years that some people have "stricturing" disease, and some people have "fistulizing" disease. I don't think I've ever seen both in one person's story, but maybe I don't pay that close attention. I've had a stricture in my esophagus (opened with a balloon). I'm pretty sure I have some stricturing in the small bowel, but without swallowing a pill camera I don't think I'm going to ever know for sure. I do know that my bowels are awfully slow sometimes, and I can feel the stool backing up in my belly - I've massaged a big lump on my upper right belly more times than I can count.

Anyway, my GIs have stuck with the bottom up approach, although I've been playing with the idea of moving up the pyramid for the last few months. My symptoms have seemed to be managed pretty well with Pentasa and mesalamine enemas, but I've been struggling with joint pain and arthritis that stem directly from my inflammatory bowel disease. I would prefer not to be immobilized by arthritis in my spine as I age, so I think it's time to pull out some bigger guns for me. I meet with my GI on Monday.
Posted 8/29/2010 2:57 AM (GMT 0)
^With regards to the last post, Crohn's can be classified in various ways: location, age at time of diagnosis, behaviour, etc. For behaviour, there are 3 main categories: stricturing, fistulising, and inflammatory (non-stricturing, non-fistulising inflammation). It is possible to have both strictures and fistulas, but only if your disease is coded that way; if you lack whatever genes it is that cause fistulising disease, then you won't ever (rare complications aside) develop fistulas.

Fistulas/strictures can appear from the beginning of the disease, or develop after years of slow-burning but chronic inflammation. Again, it appears to be genes which decides how fast-acting your disease is. I have a chronic, simmering form of Crohn's, where bowel narrowings (strictures) took years to appear.

Moving on to treatment approaches, I have come around to the "top down" way of thinking. It would have benefited me almost certainly. But there is no "one-size-fits-all" model of drug treatment. For some people a top down approach will be overkill for mild-to-moderate disease which is never going to turn severe, while for others a bottom up approach will be undertreatment for them. At the moment, there is no way of knowing. That might change in the future, but for now doctors are really working in the dark with Crohn's.

@new.2.this - You are definitely doing the right thing by finding out everything you can. Don't worry about not knowing a lot. You start off with any new subject by not knowing a thing about it. Then you learn stuff and start to know things. And at least you are starting learning at the beginning of your disease. I left it until over 9 years since diagnosis had passed; not the best idea ever really. Although I don't think it would kill doctors to explain a few things to newly-diagnosed patients. Like "your mild disease may remain mild for the first few years, but that's just to lull you into a false sense of certainty that it will never get any worse..."

Good luck :p
Posted 8/29/2010 3:54 AM (GMT 0)
Welcome new-2-this. This is probably all very confusing but you will learn as you go. Yes, getting the inflammation under control is probably the main priority. Some people suffer a lot of symptoms for years but never require surgery. (Do you call that mild or severe?) I had basically no symptoms but ended up requiring surgery for a stricture in my colon. I was referred to different GI's and had many tests to determine that my stricture was made up of scar tissue and no medications were going to get rid of it. I believe that I had inflammation for many years that healed itself by forming scar tissue thus a stricture. I knew nothing about Crohn's when I was diagnosed and it came as a shock as I was feeling so good.

I did take methotrexate (in a class of drugs known as immunosuppressants) before my surgery and there was some improvement but surgery was recommended for different reasons and I agreed. I am still taking weekly injections of methotrexate and my ESR (an inflammation marker) on my last bloodwork was 2 (the lowest it's ever been). And I continue to feel very good.

I am supposed to be having another colonoscopy in September and that will be the real test.

Good luck,

Posted 8/29/2010 10:24 PM (GMT 0)
what is fistulating and (non-stricturing, non-fistulising inflammation).

thx to all for the helpful insight.
Posted 8/29/2010 11:20 PM (GMT 0)
Hello & welcome to HealingWell! Sorry you have to be here though..
I wonder why they would be so aggressive with you, since you don't seem to have much distress with the stricture. Most of my flares of "mild" crohn's are much more painful in general..
IBD includes Ulcerative Colitis & Crohn's disease. I don't know why that Acutane lawsuit mentions it like its a third disease. The only thing I can think of there is to cases where you cannot really classify it as one or the other. I'm in that category, technically, by the way.

Sincerely,
Matthew
Posted 8/29/2010 11:24 PM (GMT 0)
Its exactly what it sounds like. Some people get fistulas which are small tunnels between places where there is active illness to other organs or even to the skin outside. Its basically HOLES in your guts.
Other people don't get them. Some get fissures, which are small ( They don't EVER FEEL SMALL!!!!) rips & tears in & near your rectum.

Matthew
Posted 8/30/2010 2:51 AM (GMT 0)
^Pretty much what Matthew said. And non-fistulising, non-stricturing inflammation is what it says on the tin: inflammation without any fistulas or strictures.

I'll dig out a couple of links tomorrow if you like, but for now bedtime is calling. Again :-/
Posted 8/30/2010 9:46 AM (GMT 0)
kazbern.. i got both.. strictures were my main problem but fistulas have cause many troubles as well.had more than a few. both loop to loop and to the skin.
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