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Dx'd 21 yrs ago; now possible stricture...

Hello....

I've read a few posts doing a search on scar tissue and I realize I am very blessed...but I feel that my luck may be running out.

I was diagnosed in 1988 at the age of 26, after having D for several weeks that didn't respond to anything and losing 20 pounds. Had colonoscopy and endoscopy and could hear thru my drugged state the Drs calling in residents to check out my films b/c I was one for the textbooks: had Crohn's in colon, ileum, AND stomach!

Took prednisone for years. Had two successful pregnancies (although hospitalized for IV steroids to prevent early delivery). Breastfed both babies (now 20 & 16). Had flares several times a year, but knew how to handle with diet and meds.

Last few years, I went off all medications, went natural....bought prednisolone to use for very mild flares.

But 3 years ago had serious enough flare to go back to Gastro doc (my original from 21 yrs ago who is a gem!). Had D, cramps, and felt pain in lower right side but nothing was detected on colonoscopy. Took Entercort for several months, things calmed down.

Over the past 3 years, would swing from D to C, but managed things with diet. Got worse this spring, with every few days back and forth between the two. Then had horrible pain with the C....I mean HORRIBLE, like razor blades inside my insides... but after I had a BM, I was a little tender but fine. After trying to deal with it on my own, I finally went on clear liquids Mother's Day weekend after having major D, the day after having C and horrible pains.

I called doc the Monday after Mother's Day and he started me on Entercort 2 weeks ago and ordered blood work. I felt great, until this past Monday when I was awakened during the night with a BM and major pains. Saw him today, he said blood work was fine. And as he was examining me and discussing symptoms, he said he thought I might have scar tissue in the ileum causing my problems based on my "non-normal for me" symptoms. He said if it was inflammation from Crohn's it would show on blood work, thus his thinking it was scar tissue. And he said it couldn't be treated with drugs, just surgery.
I am having a CT scan tomorrow because he said colonoscopy won't show it.

I know I am blessed to have had a relatively mild case of Crohn's and been able to treat it for 21 years with only medication....

And I've read the statistics that said about 2/3 to 3/4 of all Crohn's patients will have to have surgery at one time.

But I really hope I don't have to have surgery!

I had major surgery on my neck two years ago and am really just now starting to feel well!

Has anyone used alternative supplements to keep scar tissue from causing problems?

Has anyone had surgery to remove scar tissue and not need additional surgeries later?

Thanks to those who've read my novella....I appreciate in advance any info.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi and welcome to the forum! :D

Unfortunately the only thing that can be done for scar tissue is to either stretch it out if possible (but its not permanent and it depends on the location, severity and amount affected) or have that section removed via resection. No amount of meds, diet, supplements etc. can fix scar tissue.

I have had a resection before (about 8 inches removed). It wasn't scar tissue but it would have turned into it if it ever healed (which it wasn't doing even with all the medication I was taking). Since then I haven't had a flare and its been over 10 years now. My GI told me that 10 years was the max he knew of at the time for someone to go without another flare but some people have another one right after surgery or a couple of years later. It all depends on the person and their disease. So far I'm past the 10 year mark and still no flare. ;)

Staying on medication is recommended to keep the disease under control even if you are not in a flare. Remission does not mean no medication needed unfortunately. It is possible but who's to say how long it would work for or who it would work for. If you go off medication you basically chance getting sick again and having to go through the whole process all over again and no one wants surgery more than once if at all.

I'm glad you were able to go so long without surgery. Not everyone has to have it done and some people only have it done once. Most surgeries are laparoscopic now too which means less pain and takes less time to heal. You'll see the results of the test and go from there. If its needed then its needed. You don't want a blockage and wind up dying.
 
I have had a resection before (about 8 inches removed). It wasn't scar tissue but it would have turned into it if it ever healed (which it wasn't doing even with all the medication I was taking). Since then I haven't had a flare and its been over 10 years now. My GI told me that 10 years was the max he knew of at the time for someone to go without another flare but some people have another one right after surgery or a couple of years later. It all depends on the person and their disease. So far I'm past the 10 year mark and still no flare. ;)
That is so encouraging! Thank you for sharing....

Most surgeries are laparoscopic now too which means less pain and takes less time to heal. You'll see the results of the test and go from there. If its needed then its needed. You don't want a blockage and wind up dying.
So true Crabby..... I guess I'm still in the "in shock" phase since I always felt I had a mild case. And kinda scared b/c my 20-year-old son was just diagnosed last June. I was hoping that b/c my case has been relatively mild that means his will be, too, but my GI said no stats proved this theory....

But I have to be a role model for him, so if I need the surgery, so be it! What choice do we really have but to move forward?!?
 
Welcome!

I'm glad you seem like you have more of a positive outlook on the surgery now!

I'm kind of in the same situation. I've had crohn's for 18 years now and I've had strictures for the last 6 or 7 years. Originally it was just inflammation, although now they think there's scar tissue underneath it and they want to take it all out! It was a shock at the time as I'm feeling the best I ever have. But, like the dr said, it's better to have the surgery now while I'm feeling well and can recover quickly, to having it done as an emergency if anything bad happens.

My mum also said that she'd read that people with crohn's who have never had surgery usually need it after having it for about 20 years. I think we should just be lucky we've managed to put it off for so long and can have surgery while we are better emotionally and physically to deal with it.

I hope the CT scan goes ok!
 

xJillx

Your Story Forum Monitor
Hi allicat and welcome! I am sorry you are facing surgery, but as Crabby said, you could have years of remission thanks to a resection.

Try to think positive and that surgery is going to be a good thing. Crossing my fingers for you!
 
I did hear back from my GI doc. It's a good news/bad news situation. Good news is there's nothing that indicates a stricture. Bad news is there's a dilated area with fluid next to my fallopian tubes & uterus which could explain the pain, but wouldn't necessarily explain my continued diarrhea!

So I'm seeing my OB/GYN tomorrow at 1 for an ultrasound, and the GI doc wants stool samples to see if I have an infection.

So at least I don't need surgery in my intestines! And I didn't have pain yesterday, but then I only ate chicken broth and yogurt!! .....

And the saga continues.....
 
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