Scar tissue question

[Zeppy321]

I have a question about scar tissue. I asked my GI if I had scar tissue from my Crohn's and he said he didn't know! He said if my inflammation improves with maintenance medication then it is not scar tissue. Well I've been diagnosed for over 3 years now and have been on pentasa and remicade and now aza with no relief or remission. I am currently in a bad flare. Are there any tests that can tell if I have scar tissue ? I don't know why I am taking these potentially dangerous drugs if I have scar tissue . I believe that surgery is the only way to get rid of scar tissue- am I correct on that ? Also I've had muliple scopes and blood tests and countless xrays and ct scans. Please let me know if there is a test I should ask for like a pill cam or something . I don't know. If you were told you have or had scar tissue how did they find that out ? Please advise I'm feeling hopeless.

 

[Axelfl3333]

Hi Zeppy I think you need to go back to your gi or clinic nurse and get a proper explanation of your treatment plan as they,ve obviously left you worried and don,t let up until you fully understand your treatment options,they are the hired help!consultants you,ve gotta love them,not!good luck all the best.
P.s stay away from doctor google

 

[shamrock15]

While remicade can't work on scars, it can prevent the new ones. If you have a case of crohn's which creates a lot of scars it will help you out tremendously. You may still need to have the scar tissue addressed though.

 

[kiny]

There are less invasive treatments than surgery to treat scar tissue. But they are only used if the scar tissue is actually causing issues like constipation and obstructions.

They're .. balloon dilations and the use of a temporary stent to widen the lumen of the intestine.

If it's scar tissue or inflammation is often really hard to tell, even with an endoscope, it is often both.

The scar tissue is a direct result of the inflammation, inflammation causes small wounds, those wounds need to heal, when healing happens too slow or fast, there are irregularities in how the wound heals, often too much collagen tissue is generated, and the result is scar tissue in some people.

There are many labs looking at how you can treat scar tissue, not just bc of crohn's disease, scar tissue happens in other diseases, like the lungs. But all of these potential treatments have other issues, wound healing is extremely important. Transforming growth factor is involved in the deposition of collagen, if you block TGF-b you might be able to influence the amount of scar tissue, but the other side of the coin is that this can be extremely dangerous since TGF is essential for a wound to actually close.

The best thing is controlling the inflammation, it will result in less scars.

There is some cell turnover in scar tissue, in theory scars without the presence of inflammation will eventually improve, but it happen really slowly.

The best thing to do is to listen to your doc and to make sure the inflammation is under control, so you don't get more scars. If your inflammation is not under control, tell your doc, if he doesn't listen, try to find one who does.

 

[Zeppy321]

While remicade can't work on scars, it can prevent the new ones. If you have a case of crohn's which creates a lot of scars it will help you out tremendously. You may still need to have the scar tissue addressed though.

I tried Remicade a few years ago it didn't work for me but Thank You . I'm going to see if my GI will add Humira.

 

[Zeppy321]

Hi Zeppy I think you need to go back to your gi or clinic nurse and get a proper explanation of your treatment plan as they,ve obviously left you worried and don,t let up until you fully understand your treatment options,they are the hired help!consultants you,ve gotta love them,not!good luck all the best.
P.s stay away from doctor google

I don't do a lot of googling but I do read this forum alot lately. I do not have a good GI doctor. I feel that he dosen't listen or explain things to me. I have tried to find a new one but have had no luck because of insurance issues.

 

[Zeppy321]

There are less invasive treatments than surgery to treat scar tissue. But they are only used if the scar tissue is actually causing issues like constipation and obstructions.

They're .. balloon dilations and the use of a temporary stent to widen the lumen of the intestine.

If it's scar tissue or inflammation is often really hard to tell, even with an endoscope, it is often both.

The scar tissue is a direct result of the inflammation, inflammation causes small wounds, those wounds need to heal, when healing happens too slow or fast, there are irregularities in how the wound heals, often too much collagen tissue is generated, and the result is scar tissue in some people.

There are many labs looking at how you can treat scar tissue, not just bc of crohn's disease, scar tissue happens in other diseases, like the lungs. But all of these potential treatments have other issues, wound healing is extremely important. Transforming growth factor is involved in the deposition of collagen, if you block TGF-b you might be able to influence the amount of scar tissue, but the other side of the coin is that this can be extremely dangerous since TGF is essential for a wound to actually close.

The best thing is controlling the inflammation, it will result in less scars.

There is some cell turnover in scar tissue, in theory scars without the presence of inflammation will eventually improve, but it happen really slowly.

The best thing to do is to listen to your doc and to make sure the inflammation is under control, so you don't get more scars. If your inflammation is not under control, tell your doc, if he doesn't listen, try to find one who does.

I find this disease very confusing. Sometimes I am constipated other times I have the D. I'm not sure that my inflammation is under control or ever really has been. I am currently in a flare and know I have a lot of inflammation right now. As for my GI -he stinks but I am stuck with him due to my insurance.

 

[Axelfl3333]

I find it frustrating as well,I do the diahorrea thing and constipation thing as we'll I personally find the being unable to go to the toilet the worst symptom 7 days without going is no fun.its a ball ache.

 

[Zeppy321]

I find it frustrating as well,I do the diahorrea thing and constipation thing as we'll I personally find the being unable to go to the toilet the worst symptom 7 days without going is no fun.its a ball ache.

Yes I agree - it is no fun at all

 

[4peace]

Zeppy-You're my twin!
My GI always says: The only way to tell scar tissue from inflammation is to see if meds help. If for example, with me, my MRI shows LESS narrowing than a previous MRI, then we know it was inflammation. Unfortunately I have both and at this point I just want my old over achieving bowels back! I hate this "unable to go" situation! 17 years of going all the time and then BAM! Worsening inflammation plus scar tissue from old surgery=C.
The only tests for scar tissue would be a colonoscopy because then he can SEE the tissue and know if it's inflammation vs. scar tissue or a combo. For me, I had to have both a scope and MRI (frequently) because my stricture is so narrow he can't get past the stricture even with a pediatric scope, so he never knows what's going on beyond the stricture, hence the MRI.
I didn't mean to make this post about me.......! Can you request and MRI and scope? If it's scar tissue you just live with it until it gets bad enough to do dilation or another surgery. Just don't eat super fibrous stuff of you think you have narrowing!
You must be frustrated, a good DR makes ALL the difference!
Hang i there!

 

[4peace]

ps- as you know, the point of medication is to keep it status quo and not allow more inflammation which eventually can lead to more scar tissue, but I agree, they are scary drugs and when nothing is working it feels pointless and disheartening to take these medications with their risks and no benefits!

 

[Zeppy321]

4peace - I'll be your twin crohnie
I have had 2 colonoscopies with biopcies. My GI never says anything about scar tissues just there is a lot of inflammation. I am on 20 mg pred and 100 mg aza right now and am currently flaring. I see my GI on the 28th and I think it's time to add Humira. I've been on the aza for 6 months and it does not seem to be working. I've been on Remicade and Pentesa in the past with no luck either so I'm afraid if the Humira doesn't work surgery will be all that is left. I will ask him about a MRI though . Thank you for your response. You hang in there too.