Wait and see approach for treating Crohns

[Malice67]

sorry this is a little long -- will have followup in 4-6 weeks and wanted to stated formulating questions...

Just had polyp near end of stomach, beginning of small intestine removed and biopsied, as well as multiple other biopsies within the upper GI. The polyp was benign, but very inflamed, clearly one of the sources of bleeding which caused my severe anemia. (GI says no longer problem since removed).

The biopsies to rule out celiacs did, as expected by blood test results.

The watermelon stomach biopsies showed inflammation which is likely a second source of bleeding. He can treat it, but it isn't a permanent fix. Since my iron levels are now normal, he'd like to hold off treating it as it is somewhat invasive.. Has to use argon laser and during healing time it is like having an ulcer. Since it will eventually come back (years not months) and has to be treated again, he wants to hold off until it is really necessary to help decrease the total times I need the procedure.

He says that the treatment for the crohns would involve immunosuppressants, which have worse side effects than my current symptoms. So he will monitor it and only treat if symptoms get worse or blood tests indicates inflammation or anemia.

so... what concerns would you bring up if you were me? thanks!

 

[theOcean]

I'm on both a biologic and an immunosuppressant. Even when I was on the mildest Crohn's medication -- a 5-ASA -- they warned of side-effects that totally mirrored Crohn's. I had none of them. Same with immunosuppressants: no side-effects. Biologics: no side-effects. Side-effects are listed as liability, not as a guarantee you will get them.

Something else to remember is that Crohn's left untreated is more dangerous than any of the medications to treat it, and can even be fatal at worst. So I definitely wouldn't just wait it out. I've almost died twice because I was wrongly diagnosed and then treated improperly, and being on immunosuppressants and biologics has honestly saved my life.

 

[Malice67]

So is the inflammation itself a problem even if it isn't making you anemic or dehydrated?

 

[theOcean]

Yes. You can be asymptomatic but still have inflammation but that's actually even more dangerous because it's harder to track. It can cause stricturing, fistulas, and other extremely dangerous complications which can be lifelong and won't ever heal.

 

[Orchid]

So is the inflammation itself a problem even if it isn't making you anemic or dehydrated?

Yes, the inflammation is rotting your guts, for lack of a better term. Sometimes silently until suddenly you're in the worst pain of your life and vomitting up stool and blood and wishing all the pain would go away.

 

[jjk308]

Definitely get treatment. The inflammation, scaring and strictures will just get worse until you really get sick. I had a bowel resection in 1987 because the diagnosis and treatment was so uncertain back then. That operation removed a total obstruction but wasn't a cure by any means. If I could have avoided it by non-surgical medical means I'd be a LOT better off today. If I were you I'd see a gastroenterologist who has a substantial number of Crohn's patients.

General immune suppressants like Azathioprine have pretty bad side effects. I got a couple infections and squamous cell skin cancer. Switched to Pentasa/Lialda and Humira and those problems disappeared.

Pentasa or Lialda (just a longer time release version) do cut water absorption in the colon so bowel movements may be loose, but that's it. I've been on Pentasa or Lialda for about 24 years with no problems.

Humira side effects are well down in the single figure percentages relative to placebos. The most common is nasopharyngitis - the symptoms of a cold, like a runny nose and sneezing.

I've been on Humira for almost 8 years - was in the study - and unfortunately I'm developing an immunity to it, its been slowly loosing its effect over the past year plus. One of the effects of this developing reaction to Humira is more sneezing and a clogged nose. This took a while Humira is based on a human antibody, unlike the mouse/human chimera antibody of Remicadee, the first TNF inhibitor. My immune system reacts so strongly that Remicadee lost its effect after one infusion.

I've been trying to get a new drug, Entyvio, but its so new its not on my insurance formulary yet. Probably be 3 months or so until its affordable for me. There's also more non-TNF drugs for Crohns in the pipeline so my increasing discomfort will have a solution regardless.

 

[Malice67]

Definitely will bring all this up at appointment next month. thanks!

 

[Daisy123]

I am on Aziathropine and Pentsa with no side effects. I don't understand why your GI doesn't want you on treatment. Crohns unchecked is much more dangerous.

 

[Malice67]

I am on Aziathropine and Pentsa with no side effects. I don't understand why your GI doesn't want you on treatment. Crohns unchecked is much more dangerous.

I have had mild IBS symptoms for 20+ years, only after severe anemia this winter did they test for IBD. Definitely found inflammation at ileum and end of stomach, but only a couple locations and not very large. Some thoughts that it might be due to NSAID use - which I have completely eliminated since beginning of Feb, but still saw inflammation in June, so now not so sure.

Inflammation has caused no symptoms other than the anemia. Full test showed the anemia was due to deficiencies in iron (hemoglobin of 4.6 g/dL at the lowest, with ferritin of less than one), folate, and B-12. Now all the numbers are normal (after seven iron IVs, monthly b12 shots, and daily folic acid).

I think part of the wait and see is to see how the levels stabilize now that I am off the iron and B12... from what I have read, 5ASA would be the starting point for most with Crohns. But since 5-ASA is an aspirin related drug and I have been taken off aspiring and NSAIDS "for life" (my GI's phrase) and since 5-ASA is know to shorten the lifespan of red blood cells and reduce absorption of folic acid (bad idea with recent anemia), we didn't start there.

After comments here, I am wondering if maybe I am being kept on folic acid so that once they confirm anemia is no longer an issue, he can start me on 5-ASA without worrying about depleting it right away.

does that sound logical? (starting 5-ASA next month if blood levels don't drop again)

 

[LodgeLady]

Well I'm not " bad enough" for the classic Crohn's diagnosis according to my specialist. So..... I'm being treated for IBS ( the same as the last 20 years) until my symptoms warrant revisiting Crohn's. So while I am glad not to start any of the harsh drugs, I don't want to end up in the hospital before they say " Jeez, you are diseased now enough to start you on Crohn's meds"... I say this as I'm totally cramping with D weaning off this Entocort....

 

[Orchid]

What a nasty man, I'd tell you to find a new GI but I'm going to assume there are complicating factors to that prevent that.

 

[LodgeLady]

What a nasty man, I'd tell you to find a new GI but I'm going to assume there are complicating factors to that prevent that.

If this was meant for me, yes I am not seeing this specialist again. I see my reg GI in August. I'll be telling him I'll be willing to give this a try ( no meds wait and see approach) for only so long. If my pain comes back once off this Entocort he'll be hearing from me sooner than that.

 

[Axelfl3333]

Hate the mild description I,ve just had 2 days of hell and I,ve got a mild case

 

[Malice67]

Hate the mild description I,ve just had 2 days of hell and I,ve got a mild case

so how are you being treated? If you don't mind me asking

 

[Malice67]

What a nasty man, I'd tell you to find a new GI but I'm going to assume there are complicating factors to that prevent that.

Actually like him, and I feel he would be willing to try something mild if I asked (which I haven't yet but am now leaning towards).

It doesn't help the decision making process that my DH really doesn't want me on any type of immunosuppressant... which he considers even the 5ASA (I think of them as anti-inflammatory). He at least agreed to do a Medline search at work tomorrow... sometimes he thinks PhD means MD and I have to remind hmi it DOESN'T.

 

[LodgeLady]

Did you end up going on Pentasa ( or another 5-ASA?) I've been on it for a month and it is working great! My GI was reluctant but now going back to the Crohns diagnosis he put me back on it. No side effects !

 

[Malice67]

Did you end up going on Pentasa ( or another 5-ASA?) I've been on it for a month and it is working great! My GI was reluctant but now going back to the Crohns diagnosis he put me back on it. No side effects !

Actually couldn't get scheduled to see GI anytime in August... even though I called in early July... have appointment in September. They do have a few urgent spaces open but I felt I should leave those for patients who were truly urgent.

so glad the Pentasa is working for you, and NO side effects is awesome!!!!