Are there long term effects of inflammation?

[Entchen]

Hi, all

Jessica's post and Nica's reply in another thread brought to mind a question that I have been working through recently. I welcome your info and advice.

I understand that some forms of inflammation are quite serious and dangerous. However, when thinking about moderate level inflammation in 15 cm or so of terminal ileum: if it is treated with mild meds (Pentasa), and the inflammation continues although most pain episodes and the worst of the other symptoms are kept in check, is there still a danger or a reasonable level of potential for long term problems?

My GI strongly suspects that I will be on Imuran by January because of continued inflammation, even though we are, at present, both pleased overall with how my quality of life has improved thanks to Prednisone (and maybe the vitamin supplements, too). Imuran carries more potential for side effects relative to Pentasa. But, could Imuran potentially prevent future problems that Pentasa could not prevent? Or should I consider leaving well enough alone and not moving to stronger meds as long as my symptoms stay improved compared to the past year?

My frequency of bathroom trips hasn't changed at all since last spring (5-8+/day), but I haven't had much D since a round of Cipro and Flagyl last spring, the pain finally decreased at the end of my 3 months on Pred (after some 55 weeks straight), and my other symptoms seem to be holding their own since starting Pentasa in October.

Thank You!

 

[kattystock]

Hey Kelly, I'm not sure about your specific inflammation but my inflammation over time started to scar and even when the inflammation went down the scarring was still there. I'm not saying this will happen to you at all but if you start to get nauseous all the time I would strongly recommend trying a stronger med. I am sure that your doctor can also tell if things aren't going well even with just the poking and prodding they always seem to do. I would hold off on the stronger meds until you have to though because it seems easier to go onto stronger meds than going the other way.
I am happy that things are evening out for you so I'll keep my fingers crossed that things only improve for you.
Hope any of that was helpful and good luck

 

[DustyKat]

Hey Kelly,

I reckon I'm with Cathy on this one. My concern would be scarring and I would imagine the longer inflammation is present the higher the degree of scarring. Since your terminal ileum is involved, the narrowing it will cause won't need be huge, with inflammation thrown in, to have the potential to cause a blockage.

I hope things continue to go well and it doesn't lead to Imuran but then I don't want you to have a blockage either! I guess thinking more on it, it may also waylay your chances of needing planned surgery due to strictures.

Good luck!!!
Dusty

 

[Entchen]

Thanks so much for this info. I didn't realize that long-term inflammation could be responsible for those things. VERY good to know. I understand now why GI doc is concerned about inflammation even though my symptoms are on the level at present.

Much appreciated!

 

[Jennifer]

Malabsorption and a higher risk of colon cancer is a large concern (ileum being so near the colon and all).

 

[Mountaingem]

My hesitation to move up to Remicade led to the developement of scarring and fistulas, as well as early stage colon cancer. My thought process was "It isn't that bad, why should I take such strong drugs?" The reason is to avoid the chronic inflammation causing complications later on...it's easier to prevent them then stop them once they get started.

 

[Jenny06xx]

So I'm due to go on either imuran or 6 mp when I see my gi on the 29th I read all the info they sent me about these drugs but.....
Do I take them with the pred or still taper off pred? Are they better for decreasing inflammation or preventing long term problems?
What exactly do these drugs do ?

 

[Rebecca85]

They dampen down your immune system (the theory being thatyour immune system is overactive and attacking your intestines). I believe they both decrease inflammation and prevent long term problems, I am not sure but I think sometimes you can be on a lower dose once the inflammation has gone (I have put weight on but not increased the dose to match because my symptoms are under control, I think Dusty's Roo is the same). And you will still taper the Pred, as you come off it the Imuran or 6mp will be starting to work and prevent your symptoms returning.

 

[DustyKat]

Generally you would commence taking Imuran or 6mp prior to completing the course of Prednisone and then continue with just the Imuran or 6mp. It takes a while for the immunosuppressants to reach therapeutic levels hence the reason to take both meds for a period of time.

Imuran and 6mp modify the immune system by suppressing it. They aren't anti inflammatory's but they do have the ability the heal. These drugs are used when other milder drug treatments have failed and/or to maintain long periods of remission.

Dusty.

 

[DustyKat]

I'm a bit slow on the old keyboard Rebecca! :lol:

Spot on Rebecca. Roo has been on 50mg daily for 4 years now despite going through puberty. She has remained in remission so they have had no need to adjust the dose.

Dusty.

 

[Rebecca85]

Forgot to answer Kelly! I went on the azathioprine (imuran) because although my symptoms were pretty mild, the docs and I felt we should go for total remission to try to avoid problems down the line. Also while just on Pentasa my diet was just low residue, any attempts to add other foods ended badly. Which obviously wasn't good for my overall health. But so far the aza's been great! Less minor annoying little symptoms, and I am eating a wider range of foods. And I haven't experienced any scary side effects after 3 months. Since the pentasa worked reasonably well for me before, I am hoping thatafter a period of time I can come off the aza and stick with pentasa again, to hopefully avoid the long term side effects.

 

[Nica]

Hi Kelly,

If you have continued inflammation serious d and pain you are prolly going to have to eventually move up to a Dmard (Immuran Methotrexate) or a biologic. Prednisone itself has ALOT of side effects that usually take time to catch up with you. I refuse to take pred for crohn's at this point because of all the other issues. IMO getting off pred is a major goal for crohn's patients.

Chronic inflammation can cause lots of other issues in your body, like joint pain, Higher possibility of cancer or if you are like me my whole immune system is out of wack at this point. Is that just from the inflammation or just the course of the disease? I don't know for sure. Others have made really good points in this post about bowel obstructions from inflammation, you can also get into strictures which can cause obstructions and lead to surgery. Considering surgery isn't a fix for crohns just a temp feel better thing IMO surgery should be a last ditch option.

Lastly, I feel it comes down to a quality of life issue. If you are functioning at a somewhat normal level without dangerous drugs, why go there... if you are not then you have to go there and try to be as informed as possible with what one you try. Many people have gotten full remission from these drugs for many years.

If I had the options available now to me when I got sick I would have opted to go straight to humira when I had been on Pred for a few months. Humira is the one I have reacted to the least with the best outcomes. But we are all different. I think thats part of what makes this disease so hard, no one is the same.

 

[Entchen]

Wow, I so appreciate your insightful responses.

Nica, how did you know about the joint pain and the constant coming down with virus this and infection that? As you say, though, quality of life is fairly good -- do I want to risk losing this currently "pretty good" state?

Rebecca, I see similarities here -- feeling pretty good but the inflammation continues, and what you've said makes good sense.

And it's nice to hear that others have been on Aza/Imuran and have done just fine over the long run.

Am feeling better prepared to start doing some decision making now.

 

[CDDad]

It takes a long time, but years of chronic inflamation can lead to dysplasia, which is a precursor to cancer.

I had Crohns for over 20 years before this happened to me, and I had many years where I unknowingly let the inflamation fester because it was not causing me pain. I just dealt with the usual bathroom symptoms.

So, bye bye colon, rectum and anus for me. But, life goes on and much better in many ways now.

 

[Nica]

Kelly,

I have had Crohns for 12ish years now and going to different doctors, hospital trips, etc taught me how much was actually related to crohns (or the immune system in general) and the meds that are prescribed for it. I wish I knew when I was Dxed what I know today. I guess my bottom line is that my immune system runs in hyperdrive..if I dont have a real illness to fight my body makes one up, allergies, asthma, crohns and now I am getting chemical allergies.. My husband jokes he wants to put me in a bubble!!

I suppose my best advice is balance, make sure the benefits are worth the risks, make sure you stay on top of your disease, and don't just take what a doc says as 100% truth, they don't know everything...
Also, find a GI you trust. My doc will argue with me, and flat out tell me I am doing something wrong.. I need that.. I also know when he is at his wits end trying to fix me he calls crohns specialists all over the country looking for something that might help.. He even suggested LDN for me and has no problems prescribing it but with my joint pain I can't come off opiods for any length of time before my quality of life is gone..

 

[StarGirrrrl]

I've has a raised CRP in the 20's for 4 years now and not dead

 

[fateful_one]

Everyone is a bit different, but..

Over the last five years I have struggled to control the inflammation in my terminal ileum. Even during periods where I felt well and had normal blood work ups, I still had ongoing ulceration and inflammation (seen in colonoscopy).

This has resulted in severe fibrosis (scar tissue) and a stricture. I am now scheduled to have 20cm over bowel removed just after xmas.

Ug, stupid Crohn's!