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11-28-2012, 08:15 PM   #1
Sparkle2012
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Question re "stricturing" Crohns

Hi all - hoping you have answers for me. If you read my signature you will see it's been like a yoyo with this disease. I was diagnosed today with Crohns based on surgical labs. I did not have diarrhea, bleeding, weight loss or any of the classic symptoms. Ulcers were discovered with pill cam so I took Entacort 4 months ago and recently had a full blockage that required emergency resection. My strictures caused me pain and occasional bowel blockages that generally cleared up with hydration but no other symptoms. I have suffered with severe constipation which caused "hemmy" surgery. My absorption of minerals and vitamins is an issue.

My question - these blockages have been giving me issues for 25 years and just now, I have had my first surgery. This seems to be NOT the norm and in fact seems rather a slow progression (I'm not complaining). Has anyone else experienced these types of symptoms with their Crohns? In my eyes this seems mild especially now that the strictures are removed. Yet one of my former docs wanted to start me immediately on Humira. That seemed extreme to me and I don't want to go there unnecessarily. It has been implied by a respected professional that "there is a lot of money to be made with those infusion treatments" and he gently steered me in a different direction. I took a lesson from that.

Does anyone have any feedback that might be helpful? I have not met with my new gastro #3 yet. Just want to be informed when I go there.

Appreciate this forum!!!!
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Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
Longterm Prilosec/Antibiotics
Chronic C&D, blockages
Doc:"chubby=not Crohns"
GI #1: Pillcam, DX Crohns Humira ordered
GI#2: NOT Crohns; cancel Humira. pillcam stuck X6 wks! RX Entacort!
11/2012 ER SM bowel stricture resection/GB
GI#3: End Entacort. RX Pentasa! Flu symptoms. joint pain follow-neg RA
4/2013 Prometheus Positive/Crohns
Markers flat post surgery
Chronic Arthritis
No Crohns symptoms
On Pentasa
12-01-2012, 01:41 AM   #2
Jennifer
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Hi Sparkle2012, sorry for the late response. Glad the surgery went well and that you got the strictures removed.

I have some questions. How many strictures were removed? Was it just one long section taken out or do you now have multiple cut up and reconnected spots? Do you have any symptoms now? Its common for the disease to come right back at the resection site so I'm hoping you don't have multiple sections to deal with.

Many people have done really well when treated with the "top down" approach, meaning given the more "hard core" drugs like Remicade and Humira before heading towards the meds that treat or block inflammation. All medications have possible side effects, there's no way around that. The reason why they want to use stronger meds in the beginning is to try and get the disease under control as quickly as possible to avoid chronic inflammation that builds up more and more scar tissue making you need surgery again and again.

I started from the bottom with medication and have been working my way up. I tried Humira recently while still in remission (because I want to stay in remission) because the 6MP I was taking started to affect my liver so I had to stop it and needed to switch to something. Since the Humira didn't work out for me though I'm waiting to start Remicade in January. Taking these medications seems strange to me because I'm so used to taking meds in pill form but many people have had great success with them.

Keep us posted on how your appointment goes.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
12-01-2012, 09:39 PM   #3
Sparkle2012
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Hi Crabby - nice to hear from you again. You are always so helpful. I had one section removed and the doctor said he was going to aim for "never having to have another surgery again" so he took the entire section that contained the 2 strictures approx. 2 feet of lower small bowel. Do you follow any particular diet such as SCD or is there anything you might advise regarding diet wise to avoid (or ingest)? Gallbladder came out too so I'm off alcohol. And stopped sodas and processed/fast foods based upon what I've read. Seems like complex carbs/sugars are not too good from my reading. That'll be a toughy.. I'm taking Align probiotics and Omega 3.....liquid minerals and gummy vitamins. I don't seem to have symptoms any longer. My symptoms were actually just bloating, pain and/or bowel blocks/partial blocks after eating....I didn't have the traditional Crohn symptoms as I struggled with chronic constipation. Although my stomach is gurgley growley now which makes me a little nervous, nothing that I have eaten has offered any blocking-bloating type symptoms. I seem to be digesting healthily and feel "really really normal.". I had my first attack in l987 --- partial blockage ---- they generally clear up eventually with hydration --25 years later I am diagnosed via the outcome of the emergency surgery from full blockage. Prior to that, the physician gave me entacort (steroids) and I've read that sometimes if you have active ulcers, steroids can make the scarring worse. Or am I getting that mixed up with Humira...? Do you have any input on that? I felt really good with the probiotics and Myralax, B12 shots and healthy eating/weight loss for months through all the testing etc. Then they gave me a camera pill which seemed to have stirred something up....another attack.....blocked and it ejected X 6 weeks later, I was put on the steroids and I ended up with a full blockage just weeks later. I wonder if there is some relation or perhaps it was it just my time?

Appreciate your input. I see the new gastro on Monday. I hope she has some sense. Gees these doctors.....although I must say my surgeon was the REAL DEAL. And he actually cared....
12-01-2012, 09:50 PM   #4
Sparkle2012
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Many people have done really Since the Humira didn't work out for me though I'm waiting to start Remicade in January.
I see you were in remission 13 years!!! That was a blessing....I hope your body tolerates Remicade well and it does right by you. I've heard a lot of positive feedback about Remicade. I was so surprised when I read you acquired Crohns at age 9? Wow - I hate this hateful disease.
12-01-2012, 10:27 PM   #5
David
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Crabby already had some great questions and advice and I'll add to things a little.

With two feet of small bowel removed, you do not want to have any more removed. As Crabby said, Crohn's loves to come back at the site of the connection.

Not only is Humira likely a good idea, but I'd hit the disease from every angle. Utilize the Humira, dietary changes, stress reduction techniques, and everything else under the sun in an effort to make sure you don't need surgery ever again.
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12-01-2012, 10:43 PM   #6
Jennifer
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13 years and counting still (resection was 13 years ago). I'm not in a flare yet. I'm trying to find a medication I can take to keep me in remission since the 6MP gave out, it did its time. I'm not a fan of going med free as I've had problems in the past doing that.

I've heard talk about how Humira or Remicade can cause more scar tissue but I haven't researched it myself. We'll get scar tissue no matter what. Its just part of the healing process. Perhaps those meds just force a quicker healing response which maybe causes more scar tissue but I'm skeptical. I've never heard that steroids caused more scaring. Yet they do the same thing, they force the inflammation away. If there was inflammation there then there will be a scar. There's no way around that so its best to try and keep chronic inflammation from happening in the first place.

As far as diet goes I've honestly never stuck with a diet unless I was in a flare. I usually go on the Low Residue diet then. Staying away from soda is good and processed foods in general. Best thing to do really is to grow and cook your own food all the time but its hard for most people to do that. If I had the land and the know how I'd definitely grow my own because then you don't have to deal with possible pesticides and you know where your food came from etc.

If I were to truly follow a diet (but wasn't able to grow my own) it would be similar to the low residue diet and a diabetic diet. Honestly I think those are the healthiest diets out there. Lots of veggies (steamed if you can't handle them raw) with minimal fat along with a small amount of protein (usually the lighter the meat the better) with limited carbs (unless its from fruits and vegetables). Currently I eat rice, pasta and bread as filler and I do like them all but I don't think they're meant to be eaten in large quantities or everyday. There's no one diet out there for Crohn's though so eat what you can tolerate and make sure you're getting enough nutrients from whatever you're eating. If you're still dealing with strictures than softer foods may be better like from strews and soups that you make yourself and drink the broth as it contains a lot of the nutrients when the food gets cooked down.

Edit: I also wouldn't do diet alone. As mentioned above, hit it from all angles if you can. I'm med free for Crohn's right now only because I'm having my tonsils removed this week and have to wait 4 weeks after surgery before I can start Remicade. If I wasn't having my tonsils removed I'd already be on Remicade.
12-01-2012, 11:13 PM   #7
Sparkle2012
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David and Crabby - I will take your advice. Appreciate your quick responses.
12-01-2012, 11:27 PM   #8
Sparkle2012
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David: afterthought....the surgeon's partner told me that my surgeon removed "an insignificant length of bowel" and it sounded that it's hard to accurately measure bowel because it's stretchy...? It might have been 1 1/2 foot of small bowel and they didn't take a valve..........does that seem like a lot of bowel to take for 2 strictures? Just curious --

Also the surgeon referred me to a GI who "wont give me anything I don't need" and left me with an impression - without really stating it - that there is money to be made giving people infusions and going to the known "expert" in Humira might not be such a great idea.....he referred me to someone he trusted (who I find out sends all their Crohns patients to the "expert" in Humira. It's like a horror movie.

This is a confusing business. Depending on who you talk to, you get different schools of thought. I've been diagnosed differently by 3 different doctors.
12-02-2012, 10:26 PM   #9
David
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Strictures can be any length. Really short to really long, so it's impossible for me to say, sorry.

There are indeed different schools of thought regarding how to properly treat Crohn's disease. And it IS confusing business. After reading literally thousands of first hand accounts, studies, papers, and everything I can get my hands on, my personal school of thought is do everything you can to get the inflammation under control as fast as possible and promote mucosal healing. And keep it that way. I call it, "The Shotgun Approach". Crohn's isn't a conservative disease and shouldn't be treated that way in my opinion.
12-02-2012, 10:54 PM   #10
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i too don't have any symptoms at this moment, had a resection in 1995 (removed 10 ins. of large and 2 ins. of small) and been in remission for 16 years (not on any meds during that time either), july 2012 doc saw inflammation back where the resection was, put me on Pentasa, and they had me to stop Pentasa and just waiting for blood work to get back and will be starting Remicade.
12-03-2012, 09:13 AM   #11
Sparkle2012
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i too don't have any symptoms at this moment, had a resection in 1995 (removed 10 ins. of large and 2 ins. of small) and been in remission for 16 years (not on any meds during that time either), july 2012 doc saw inflammation back where the resection was, put me on Pentasa, and they had me to stop Pentasa and just waiting for blood work to get back and will be starting Remicade.
Appreciate your story. How did they determine inflammation was back - blood tests or scope? I hope the Remicade puts your back in remission - 16 years - what a great run with no scary meds. What course of treatment brought you to remission - just surgery?

Last edited by Sparkle2012; 12-03-2012 at 09:49 AM. Reason: Adding question
12-03-2012, 09:21 AM   #12
Sparkle2012
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Strictures can be any length. Really short to really long, so it's impossible for me to say, sorry.

There are indeed different schools of thought regarding how to properly treat Crohn's disease. And it IS confusing business. After reading literally thousands of first hand accounts, studies, papers, and everything I can get my hands on, my personal school of thought is do everything you can to get the inflammation under control as fast as possible and promote mucosal healing. And keep it that way. I call it, "The Shotgun Approach". Crohn's isn't a conservative disease and shouldn't be treated that way in my opinion.
My 2 strictures looked like 2 big fists clenching the bowel. He removed the entire section between them as well about 1 1/2 feet. I plan to take your approach and ask questions, read the forum, and study everything I can get my hands on to help understand and feel comfortable with the doctors' decisions.
I'm a little scared after reading about anaphalactic shock experiences with the infusions. I see my GI for the first time today. Thanks for all your kind responses.
12-03-2012, 09:30 AM   #13
Scaryman
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I have three structures and they are treating it aggressively with Humira aggressively. So I can't say I've had surgery yet. Humira isn't that bad considering you'll still need treatment going forward. Good luck and glad to hear it went well.
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Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
12-03-2012, 09:47 AM   #14
Sparkle2012
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I have three structures and they are treating it aggressively with Humira aggressively. So I can't say I've had surgery yet. Humira isn't that bad considering you'll still need treatment going forward. Good luck and glad to hear it went well.
Hi- are you taking the shots or infusions? Any anaphalactic issues ever?
12-03-2012, 10:45 AM   #15
Scaryman
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I'm taking the shots with the humira pens. I'm also on methotrexate to increase the potency of humira as well as my prior history rejecting remicade. Methotrexate breaks down the antibodies as well my GI says. I've not had any injection problems as of yet with humira. Some people have pain or issues at injection site. But like everything with this disease its individualized.
12-03-2012, 10:58 AM   #16
Sparkle2012
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Thanks for that info. My strictures are removed and for the first time in years, I can eat without painful cramping. When you say rejected remicade --- did you have an episode of something?
12-03-2012, 11:06 AM   #17
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I had an infusion reaction, I turned beet red, shortness of breath.
12-03-2012, 12:13 PM   #18
Sparkle2012
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Great God. Unfortunately that sounds common. ((( Glad you're still here!!!!
12-03-2012, 12:25 PM   #19
Scaryman
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It is a common reaction when you build up resistance to remicade which is 1 reason why there is nurses supervising the infusion. They call a doctor in if they have complications.
12-03-2012, 07:11 PM   #20
Sparkle2012
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Update: new GI isn't sure I have Crohns. The labs for inflammatory bowel don't support it. The tissue from the surgery is "consistent with Crohns". I don't have the usual symptoms - just strictures from ulcers. Ulcers can be caused also by medications -- and aspirin and antibiotics have been copious with me for years (migraines and rosacea). So I'm back on Entacort again this time for 3 months --then they are going to do another barrage of tests including the Prometheus genetic test for Crohns and a special xray for Crohns in that area with other specialty labs. Hopefully in March, I'll have something definitive. Meanwhile if there are ulcers, the Entacort should be taking care of that. The physician's plan is Pentasa and 6MP if it's Crohns. I imagine it's going to be Crohns at some point and I'm going to continue researching it and working on eliminating known offenders in my diet. I sure appreciate the info I have gotten from a lot of nice people on this forum. Thanks again!
12-03-2012, 10:45 PM   #21
David
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What, "labs for inflammatory bowel" are overruling tissue biopsy?
12-04-2012, 03:27 AM   #22
Scaryman
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Sparkle sounds like you need consultation from my GI in the university of Chicago. I know it sounds extreme but they've proven to be at the forefront of this disease. What they say usually is not only correct but the gospel going forward. To me it sounds like your getting jerked around by your local GI. Something similar happened to me and I actually ended up doing a AMA discharge from a hospital to get on a plane from Atlanta to midway to meet with the IBD team at the university of Chicago. It kept me from having stricturplasty. But I'm not out of the woods yet as I've got to taper from pred yet. My point is another GI says surgery I said "whoah, hold up I want a outside second opinion."
Just something to think about if you get GI frustrations like I did.
12-04-2012, 11:18 PM   #23
Sparkle2012
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My point is another GI says surgery I said "whoah, hold up I want a outside second opinion."
Just something to think about if you get GI frustrations like I did.
Oh the GI frustrations! This is my 3rd one. She is extremely smart and board certified in 3 areas. I had a plan in my head before I went in there and she mirrored it which made me feel better about seeing another GI. My last GI was a no show/no call/no care when I was in the ER writhing in pain and they were about to wheel me into surgery. I was extremely lucky to pull an excellent surgeon who does care....who recommended me to his GI because she also cares. If I have any further discomfort or feel another surgery coming my way, I may just consider a trip to Univ of Chicago for a consult. Can you recommend a good physician? Mayo Clinic is in my town and are supposed to specialize in Crohns --- I would have to drop down to a lesser coverage in military insurance to see them which I'm not comfortable doing. For some reason, the military insurance that is the "primo" and most expensive is harder to get doctors to accept. They like the lesser one. Haven't figured that out yet. Appreciate your feedback Scaryman.

Last edited by Sparkle2012; 12-04-2012 at 11:20 PM. Reason: spelling
12-04-2012, 11:23 PM   #24
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What, "labs for inflammatory bowel" are overruling tissue biopsy?
The labs they took and biopsy prior to the surgery during the scopes are negative inflammation, cancer and crohns. The tissue biopsy from the surgery said "consistent with crohns" but she wants to test more before she hits me with the Crohns treatment. The last GI - a well known Crohns expert - did not think it was Crohns but caused by some medications I have taken for many years. Meanwhile I'm starting Entacort. She says there are more specialty tests to identify -- and an xray that is specific for Crohns in that area which will be read by their inhouse expert in radiology. I'm looking at orders: ESR, Iron, TIBC and Ferritin Panel, CBD including diff/pit, C-reactive protein, prometheus IBD, CTE scan Enterography. But not until after the 3 months on Entacort.

Anything else I should look for? I've had about 20 tests prior to the surgery but if there is something really important, can you advise so I can make sure it has been done?

Last edited by Sparkle2012; 12-04-2012 at 11:30 PM. Reason: adding
12-05-2012, 02:47 AM   #25
Scaryman
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Oh the GI frustrations! This is my 3rd one. She is extremely smart and board certified in 3 areas. I had a plan in my head before I went in there and she mirrored it which made me feel better about seeing another GI. My last GI was a no show/no call/no care when I was in the ER writhing in pain and they were about to wheel me into surgery. I was extremely lucky to pull an excellent surgeon who does care....who recommended me to his GI because she also cares. If I have any further discomfort or feel another surgery coming my way, I may just consider a trip to Univ of Chicago for a consult. Can you recommend a good physician? Mayo Clinic is in my town and are supposed to specialize in Crohns --- I would have to drop down to a lesser coverage in military insurance to see them which I'm not comfortable doing. For some reason, the military insurance that is the "primo" and most expensive is harder to get doctors to accept. They like the lesser one. Haven't figured that out yet. Appreciate your feedback Scaryman.
Any doctor at the univ of chicagos ibd team will suffice. Personally I'd see dr. Stephen hanauer. But I'm biased in that opinion since he is in the top 1% in the field. Dr. Rubin is good as well. I'm not sure I can help with the ins. Coverage as I paid out of pocket to get emergency consultation with dr. Hanauer. But he is really one of the best if not the best in the country. I fear that I might end up in his capable hands if this drug combo can't keep me off prednesone. Let me know if you need any other info.
12-05-2012, 07:59 AM   #26
Sparkle2012
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Thanks Scaryman - best of luck to you.
12-05-2012, 08:22 PM   #27
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I'd be interested in results from a fecal calprotectin test.
12-05-2012, 08:27 PM   #28
Sparkle2012
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Now that's NEW. I'm adding it to my notes for next visit. Thank you David.
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