New here and need avice please

Best to go on the meds before things go down the pan, as once they do it can be much harder to treat medically. Humira is a better choice than azathioprine and not any riskier from the point of view of side-effects. You don't sound like you're 100% in remission, so I'd go for it.

I agree with the Humira. I went on Pentasa and ended out with a bowel obstruction and needed surgery. I'm in remission now, but if my Crohn's comes back, I'll probably go with biologics

Well, this is unusual - I'm normally the one saying for people to go on the stronger meds, but in this case I'm not so sure I agree with the others.

They may very well be right that you should start Humira, but I'd like to get a little more info first.

I'm in a somewhat similar boat as you - capsule endoscopy positive, somewhat elevated fecal calprotectin (not always elevated), upper endoscopies ok, colonoscopies show inflammation in biopsies but nothing visible with the scope. And I've been like that for almost 30 years without it progressing and without taking anything other than occasional rounds of Entocort.

So, let me ask some questions:

1. How long had you had any issues before you had the tests done and were diagnosed? Is this all new for you, or had you had symptoms on and off for years and only recently figured it out? I'm wondering if you've had Crohn's simmering for a long time, or if this is all recently onset.

2. Have you had any small bowel MRI's or CT scans? The best test is the small bowel MR enterography or CT enterography. They can see thickening of the bowel wall, if that is occurring, plus any thing else that can happen outside the inner lining of the small intestine (all the capsule can see is the inner lining, but Crohn's can affect more than just that inner lining).

If you've had on/off symptoms for years, and were just recently diagnosed, it's possible your case is mild and Humira is overkill. On the other hand if this all came on pretty quickly, it might be the beginning of a tougher course, in which case Humira (or similar med) is more appropriate.

And if the MRE/CTE shows thickening of the bowel - early signs of narrowing or stricturing - it's more appropriate to get on a stronger med sooner rather than later. On the other than if the MRE/CTE doesn't show much of concern, you could do like I do - I have an MR enterography every couple of years to check for any disease progression, and I have occasional colonoscopies too to check for progression. When/if I have symptom flareups, I go on Entocort for a few weeks.

Well I have to chim in.

I started out with severe symptoms overnight. Within a year and a half I ended up with a colostomy. I had hoped to have an outcome more like beave. My tests all showed a mild case...until suddenly there was a fistula and then all heck broke loose. I knew that 75% of Crowns patients ended up having surgery but I felt oh so lucky. I put off the Remicade to the bitter end.

Did I mention I felt lucky?

Did I mention I have a colostomy?

I am lucky to be alive. I am lucky the Remicade is working. I can't help wondering if I had started Remicade earlier if perhaps all the damage would not have occurred and if I wouldn't have had soft tissue strictures which caused the colostomy.

But I am grateful. I was lucky. I beat sepsis over 3 times.I survived a dilated colon that was so bad they could not operate on me for 38 days. I survived a stricture. But if I had started Remicade earlier could I have avoided that?

I was lucky. I just wish I had been smarter. So I am biased. I think you should err on the side of caution....BUT everyone's experience is different. You could be like beave, or anyone else on this forum. You have to do what you feel is best for you.

I really do hope you get lucky like beave though.

Clo

I hope I don't offend anybody with this, but it's funny to me to be called 'lucky' in regards to health issues. In terms of Crohn's, yeah, I think you could say that. Certainly compared to the rough course some of you have had with Crohn's. But I've had so many other things, not-Crohn's-related, including 8 sinus surgeries, three of which led to severe post-operative bleeding, one of those being life threatening. So my good luck with Crohn's is evened out by some really bad luck with other health issues.

No offense to any of you. I get what you're saying. It just seems funny to me, because I don't think of myself as being 'lucky in health' by any means. I guess it all depends on one's perspective.

If you've never had an MR enterography, or haven't had one since being diagnosed, I think it's entirely appropriate that you have one. People with Crohn's in the small bowel get them pretty regularly - depending on your situation, could be a couple times a year, once a year, once every couple of years, once every 3-4 years, etc. But getting at least ONE is a great way to really characterize where your disease is at, and then getting more in the future will be the best way to track any changes to your disease.

I'd say get the MR enterography done and then make the decision about Humira depending on what is found there.

Dmarks said...
Thanks for all the replies and now I'm even more confused! I know there's no right answer and it's a gamble. I feel it's a bit like Russian roulette. After the first few posts I thought that's it, I'm going on it but now I'm not so sure again! I had an MRI a few years ago that was clear. I would say I started having symptoms about 3/4 years ago which have got progressively worse. I'm not very good at making decisions!

Good gosh, things can change within a few weeks, never mind years.

Please get some up-to-date tests (MRI scan, colonoscopy), and have a talk with your doctor about going on Humira - maybe she can set your mind at ease. If you are 100% in remission, then I would say you can consider not going on Humira and monitoring your disease. If there is any active inflammation, then I would strongly recommend Humira personally. It's not a good idea to let Crohn's inflammation just simmer there for years on end. One, it eventually irreversibly damages the bowel, and secondly, active Crohn's can have knock-on effects on the rest of the body, i.e. anaemia, fatigue, joint pain, skin problems, eye problems, etc.

NiceCupOfTea said...
@beave - My brother, from what I can make out, has proctitis. He's always called it Crohn's and his docs seem to call it that as well. Whether he's ever had it any higher than the rectum I dunno. But I know in the past he was taking mesalazine suppositories. He also has taken oral mesalazine and azathioprine. It's mild in the sense that: he's never been hospitalised; he's never been on biologics; he's never had surgery; and he's never had (I'm pretty sure!) fistulas or abscesses. He's had his diagnosis for nearly 20 years now, so I don't suppose it's all that likely to take a severe turn now. Although ironically enough I thought his disease was worse than mine when I first got diagnosed: he had bloody diarrhoea and I had bogstandard non-bloody diarrhoea.

Thanks for that info. Like I said, no problem, I'm not offended at all so don't worry.

Crohn's in the rectum can be very different from small bowel Crohn's. It's as if they aren't even the same disease. While my disease is considered mild, I have been hospitalized twice - both in 2006, for a full week each time. I generally don't have diarrhea, but I've had a few times in the last 30 years where suddenly I will, pretty bad, for a few days or even a few weeks. Then it goes away, sometimes on its own and sometimes with the help of Entocort. My most consistent GI issue is that I just have no appetite in the mornings. I eat very conservatively earlier in the day, but usually by evening I can eat anything I want with no problems.

My small bowel Crohn's is weird in that it's almost more like how celiac disease can affect a person. Gastrointestinal issues aren't my primary issue. But I have really bad allergies, have had 8 sinus surgeries as mentioned, probably 100 sinus infections over a 15 year period; and I'm allergic to several antibiotics; and I have seborrheic dermatitis; and cholinergic urticaria (I get itchy and break out in hives anytime I get warm, including excercise, eating hot soup, laughing hard, being in a warm room, etc); and I have a sun sensitivity like people with lupus sometimes have, where I get sickly feeling with nausea and headache and fatigue if I go out in the sun. I also have bad panic attacks. And three ruptured discs in my back leading to chronic back pain. And I sleep about 12 hours a night. So it's like my intestinal issues are mild but my "extra-intestinal" issues are a huge burden.

It's not clear which of those, if any, are truly a result of having Crohn's, but I kind of feel like they are.

Post Edited (beave) : 2/18/2017 11:52:23 PM (GMT-7)

Hi there! just to comment on the original post, (not feeling so good tonight so cant read through what everyone else has said) I was fearful of the "big drugs" when i was first diagnosed. I am on them now because I developed complications which you never see coming until you have them. I still am glad I waited because I feel content now with my decision but it wrecked quite a few years of my life because I would have flares about once a year. I cant say the wait and see if it gets worse route is for everyone though, so its something you need to educate yourself on pros and cons. Get a lot of doctors opinions before you make a final decision. I also have issues with joint pain, body aches, etc. See a good rheumatologist. there is a drug called plaquenil that has very few side effects and is used to combat these symptoms in other auto immune diseases. My rheumy gave it to me and it seems to help. I have still had periods of aches but they don't last as long so it might be worth looking into. Humira worked exceptionally well for me until it caused side effects. Id still recommend it though because it gave me my life back. Im on Remicade and 6mp now.

clo2014, thanks for the apology - but it's truly not needed. You haven't offended me at all. You had no way of knowing that I've had so many other issues (whether Crohn's related or not). I'm fine with what you've posted. In terms of traditional Crohn's, yes, I am lucky. If my Crohn's was bad on top of the other issues, I'd be in deep doodoo (so to speak). With my sinus issues, I might not ever be able to try any of the anti-TNFs, so I hope I never need them.

You are completely right that there are different outcomes for different people and that it's hard to predict. As I mentioned before, one of the hot topics at research conferences is trying to look at a person's current disease, along with their gene profile, and their levels of certain antibodies, to be able to predict with some accuracy who is likely to get worse quickly and who is likely to stay mild for a longer time. That way they'll have a better idea who should jump to biologics quickly and who doesn't need to.

A couple of researchers who presented felt this could be coming in the next few years. Might not help most of us, but it may help the 'next generation' of people with Crohn's a lot.

Dear Dmarks,

Your situation sounds very similar to mine: for me the capsule endoscopy has also been the main factor in establishing a diagnosis.

Like you, I was also started on Budesonide, but unfortunately that did not work for me. I was then started on Prednisone 30mg at the end of June 2016. I have had to take this dose for over a month and was then allowed to drop to 25mg, a dose I stayed on for well over two months. During this time 6mp was added as my maintenance drug of choice. I started at 50mg and doubled the dose after a month. I must say I found it a hard drug to get used to as it made me miserable for weeks. Just when I was about to taper my prednisone from 15 to 10 and add the final 50 mg of my 6mp dose I got really, really sick and ended up in the hospital for 10 days. My 6mp stayed at 100mg at the time and my prednisone was temporarily increased to 40mg. This all happened in december.

After feeling absolutely terrible for the first weeks of January, my GI decided to get my bloodlevels checked begore upping the dose of 6mp. Good thing she did, as it turned out I was not metabolizing this drug well at all. I have had to drop my dosage to 50mg and add allopurinol to restore the balance. I have been doing this since Friday a week ago and I feel tons better already. I am also tapering my prednisone, currently at 7,5 mg and hoping to be free of it in five weeks.

The moral of the story for me is: yes, I do think that in general it might be a good thing to try the stronger drugs to prevent further damage and increase chances of achieving remission. However, I must admit for myself that I have really underestimated the effects of these meds on my body and general Health. I am currently under strict supervision (many bloodtests) and the definitive test will be done in three weeks to see if my metabolism has improved. If not, the GI wants me to consider remicade. I do not know if I am willing to go down that road, because this has already been quite a ride so far. Having said that, if there is no feasible alternative I would probably do it anyway, because in the end my Crohn's symptoms were way worse. In the end I think you should evaluate your symptoms and risks without treatment against the (possible) side effects and positive effects of the drugs that are recommended to you. I hope this helps you somewhat.

Post Edited (Nikki83S) : 2/19/2017 6:47:26 AM (GMT-7)

I have had a lot of other tests indeed: sigmoidoscopy, colonoscopies, upper endoscopy, ultrasounds, ct scan, and a double ballon endoscopy. Biopsies from the latter showed signs of chronic inflammation, which, together with my bloodwork and the visuals from the capsule endoscopy were enough to give me a diagnosis. The fact that the prednisone helped tremendously was considered the last piece of evidence, so to speak.

I find it a quite challenging road indeed, but I am an optimistic person by nature and I see this whole process as something I just have to go through to feel better in the end. And I already do feel better, I have to say. Despite all the meds screwing with my system, I do think they help with my symptoms. I am just very curious to see to what extent I am able to recover.

FYI: my main problems on 6MP were feeling completely lethargic and getting up with a feeling of the flu every single day. Although eventually I kind of got used to it;)

I have read a lot of posts by people on this forum that really seem to get the short end of the stick since they are not able to either achieve or remain in remission. While I onviously feel for them (truw warriors they are!), I do believe that there are indeed lots and lots of people living relatively normal lives despite suffering from this disease. They are probably just too busy leading their lives to visit these forums. Which should be a very good sign!

Keep making informed decisions and make sure tou have a GI that you feel comfortable with. I really like my GI and I feel O can diacuss anything with her, which makes it much easier for me to share my concerns. Take care and hang in there as I am sure things will get better!!