New to the Forum - Crohn's Strictures

[Kennie]

I was diagnosed with Crohn's and had an resection (21" taken from the illium?) 3 years ago. The gastro doctor initially put me on Pentasa (500mg x 4) which I am still on today. The Crohns doctors wanted to put me on either Humira, 6MP, or Remicade which I did not want to go on since I felt I had a 'mild' case of Crohns (no symptoms or pain). The only reason I had surgery was they were trying to diagnose anemia and the mini camera I swallowed got stuck. To this day I have no pain. Over the last 3 years I have tried to determine if my Crohn's was getting better, worse, or staying the same. So I proactively had an MRI about 6 months ago which reflected a stricture had returned to the resection location. Here are my questions:
1. Do strictures keep forming at the surgical site?
2. If so, will I be having resections every three years?
3. Are there any medications or other herbal solutions to prevent strictures or inflammation?
4. How will I know if things are getting extremely worse if I have no pain (the only symptoms I have is stomach gurgling and occasional movement in my stomach like it's full of aliens)
5. I'm kinda freakin out to have to go on any stronger immuno suppressive drugs like 6MP, Remidade or Humira.

FYI - I have been anemic since birth and have had 'stomach' issues seems like forever.

Any other advice or personal experiences you can provide is very much appreciated relative to my situation.

Thank you

 

[lancek]

Kennie,

So sorry that your mini camera got stuck! I want my son's GI doc to try that camera, but he has been reluctant for that very reason. My son had a partial obstruction of the small bowel and was hospitalized for that nearly 6 years ago. From what I understand the same area can continue to be affected, but I am no expert on Crohn's Disease. I like this forum. Make me realize that there are thousands of people out there dealing with CD in their own best way. I just joined myself only a few months ago.

Cheryl

 

[__JK__]

Hey Kennie,

I had surgery in 2000, lasted me a good few years but then got a stricture at the site of surgery, had to go in last year to have it removed. They also did stricturoplasty in 3 other places where i'd had scared up crohn's. Was gutted to find out only 18 months later that I had more strictures. Had a c/scopy to see how bad they were and they couldn't get the camera through so they said they've gotta come out. They opened me up 5 weeks ago and found 7 strictures!

I asked the surgeon is this gonna keep happening all the time? He couldn't really give me a straight answer but said he doesn't want to seem me again for a long time. I guess it's just the nature of the beast, so unpredictable.

You'll know when they get serious! It's a blockage pain, kinda hard to discribe but feels like more of an ache than a pain. Get down the doc's straight away if you're getting that prolonged ache cos if you get a total blockage it's VERY serious.

 

[Angrybird]

Hi Kennie, it is very common to have a stricture return at the site of a previous incision over anywhere else in the bowel. The very nature of having had an op means you are leaving scar tissue behind.... I think it all depends on disease management and a bit of luck on how often this may reoccur. When I saw my GI doc I asked about an estimate on when/if I would need another resection and he has give me a time estimate of about 5 years. Now this was before the big flare up I have had since the middle of Nov so this may change depending on how much scarring this now leaves behind. On the flip side of this my step uncle had an op for his crohns over 15 years ago and hasn't had had an op or any meds since and only needs to watch what he eats. Symptom wise don't always look for the obvious like diarrhoea, I would say keep an eye out for ANY changes in your body and how you feel. Keep an eye on your skin - some pople get weird rashes that look like bad acne or in my case once bruising all over my legs, do you get mouth ulcers at all? This can indicate a run down body due to potentially active crohns. Have a look at out treatment forum as this will have lots of info on all the different meds and their pro's and con's, I personally cannot think of a med to advise that doesn't have it's own set of potential side effects. What is being done for the stricture found on the MRI?

NB Welcome to the forum :bigwave:

 

[Kennie]

Crohn's strictures...

To answer AngryBird's questions - I don't have any mouth sores. I do have several dry skin spots on the head, but the derm said there are pre-cancerous sun damage and has removed several (I'm assuming these are NOT due to Crohn's). As far as the stricture found on the MRI, the surgeon who performed my last resection wants to perform a colonoscopy so I have one scheduled this month. I have to talk more with him about the MRI results and why the colonoscopy as he is back from vacation this week (I have only spoken with his NP who relayed this request for a colonoscopy. Thanks for your reply. (since I am new to this forum, I am not sure if I'm replying correctly through this posting method..??)

 

[mnsun]

Hello. I had a resection, either 12 or 18 inches at the ileum in 2004, and I was put on Pentasa and Imuran(azathioprine) for a little over a year. I weaned myself off over a couple months. I didn't feel they were doing anything (the statistics based on the CDAI are rather dismal anyhow) but increase anxiety by remembering to administer 15+ pills a day. Personally, the thought of taking an immunosuppressant in the longterm wasn't very appealing. I think Pentasa can cause gall stones, hair loss and fatigue--definitely felt this one (though I still am working on an energy protocol). Imuran interfered with drinking and sun exposure, and who knows what else?

See my post called MY Supps for MY dis-ease. I quit going to the doctors for 5+ years and went a more food based route. I DON'T RECOMMEND EVERYONE PURSUE THIS ROUTE. My pathogenesis is similar. There were times when I felt unsure of myself, and my parents were indifferent but trusting. It just felt right for me. I too didn't have many symptoms. However, if you currently have a stricture, I would try to stabilize your symptoms first before dropping any medications--your just on Pentasa, right? I would recommend LDN as a go-to treatment for any cronnie without pain meds. I'm currently 6 weeks into my full dosage, and I do believe it's helping me tolerate more foods. Emotionally, I also feel more grounded and at ease, as well. (LDN boosts endorphins, in the brain and the gut, which regulates the immune system.) http://www.webspawner.com/users/howtoobtainldn/index.html

I've recently had a colonscopy and pill camera--ALWAYS INSIST ON A DUMMY PILL FIRST. Idiot nurses tried to tell me: if the camera gets caught, it's a good thing cause you'd need a surgery anyway! This kind of thinking doesn't register with me. Mucosal damage can reverse, to some extent. If you have a colonoscopy, LET YOUR GUT REST longer than the doctor tells you--especially if you have biopsies. Maybe add a few days to your low residue diet if biopsies are found and SUPPLEMENT WITH GOOD PROBIOTICS.

My results found a handful of colitis like patches, but no strictures, in the colon/large intestines. I did have 4-5 small polyps removed and tested but no problems. The doctor said I wouldn't need another colonoscopy for 20 years! What a moron!? Personally, I'm getting one at least every 5 years. No further inflammation was found on the large intestines side of my resection. I got a brief call, last week, concerning my pill cam and minor/insignificant inflammation was found in the small intestines. I gotta go back for specifics in three weeks. I don't claim to be cured.

Anyhow, don't let these doctors tell you that you are a statistic. The solution lies in equal parts diet, exercise, stress reduction, emotional expression and supplements. Avoid all sugar-added foods/drinks--including all fake sugars. Drink mainly clean water, herbal teas (ginger/peppermint/yerba mate--if you can handle it), 100% vege and, to a lesser extent, 100% fruit juices.

Best of luck!

 

[Angrybird]

Hi, the way you have replied is fine As the MRI was 6 months ago the colonscopy could be to assess whether things have gotten worse or not. About 5 years ago I had a colonoscopy and they found a narrowing but was actually able to treat it then and there - perhaps they are going to see if this is a possibility? Let us know how you get in with the call this week.

 

[Kennie]

Talked to the surgeon who reviewed my MRI and he is recommending a colonoscopy (and surgery). He stated that they (he and the radiologist) saw a narrowing at the resection site on the MRI but no other narrowings or strictures. He is recommending the colonoscopy now so he can see what things look like (i.e. inflammation, etc.) and to see if he can see any other indications of the Crohns beyond the colon (although I thought they couldn't see much of anything further than the large intestine). So I'm having the colonoscopy this week (moved up from end of January due to schedule issue). Regarding the surgery, he said that based on what he found in the surgery, he would either do another resection or a strictureplasty (spelling?) and he wouldn't know which one until he got in there. I guess the strictureplasty is a procedure where they don't have to resect but they can open the narrowing somehow (I need to research this one). So we'll see what the colonoscopy shows and go from there. Any thoughts or experiences with strictureplasty?? Thanks!!

 

[Angrybird]

Hi Kennie, thanks for the update. I think the strictureplasty is where they send a scope through the bowel with a balloon attached, when it encounters resistance (narrowing) a cut is then made lengthwise to widen the stricture and is then sown up in the opposite direction to the cut. This can be preferred over resection because no bowel is actually removed. I think my stricture was too narrow as this wasn't even mentioned as an option for me but in the future if I had another narrowing I would like to think this could perhaps be done instead. Despite all the grief it gives me I am quite attached to my bowel and would like to keep as much of it as I can Let us know how you get on.

 

[Kennie]

Well the colonoscopy went well - no signs of inflammation either in the colon or as far as he could get into the small intestine (about 8-9 inches) and no polyps. So the Crohn's is under control, however we still need to address the stricture due to the previous surgery at the resection location. This is just scar tissue but it has left a very small opening so we have decided to have the procedure to address this stricture. The procedure is scheduled for tomorrow 1/23 and the surgeon will either be resecting the stricture or performing a strictureplasty (won't know till he gets in there). So now I'm wondering whether they will recommend any new or different drugs?? Currently on Pentasa but as I mentioned there is NO inflammation. Curious how they will prevent additional surgical scarring / stricturing at this new site??

 

[Angrybird]

Hi Kennie, thanks for the update. Really pleased there is no inflammation, the Pentesa must be doing it's job To be honest I don't think they can prevent more scarring from the op, this will develope but as long as your bowel stays wide enough not to cause as issue then they will leave it? As long as inflammation does not then build up on the scar tissue it may stay fine for ages. I too am curious to see if any more meds will be mentioned to you. Sending lots of best wishss and hugs for the 23rd :hug: When you can let us know how things went.

 

[Kennie]

So I had successful surgery on Monday 1/23. They ended up resecting a total of 6 inches from the illeum (I had about 28" resected 3 years ago). There were two new strictures near (but none at) the last resected area. So he took out the 2 new strictures and also removed the last resected connection for a total of 6 inches. In the hospital for 4 days, on clear liquid for the first 3 and home now. The surgeon did a colonoscopy the week prior to surgery and it showed NO inflammation. Following the surgery this week, the surgeon is having me STOP taking the Pentasa because he said it wasn't doing anything. I thought that going off Pentasa (which is fine with me - so I'll be on nothing) for 6 weeks until I meet with a new GI doctor was weird? He also mentioned that when I go for a follow-up visit with the GI doc we will probably be discussing Humira or Remicade. I am going to put a new post in the drug section to see of others' experiences in switching drugs post surgery. Thanks for all your comments and suggestions!

 

[Angrybird]

Hello Kennie, thank you for the update. I am glad things went well and that you are home I hope you will be able get lots of rest and feel better soon :hug: