Newly diagnosed

Hi all,
This is my first time posting. I've been diagnosed with Crohn's about six weeks ago after developing a perianal fistula. Surgery for that went well and it does appear to be healing somewhat. My current dilemma is in relation to treatment. I have (surprisingly) no symptoms, never had any but the colonoscopy, endoscopy and biopsies apparently show the disease has been active for some time and is quite extensive. The gastro doc has advised I commence on humira to try to limit any further damage but having read about it (side effects!) I am not keen to go down that road at present. What I'd like to ask forum members is are there any other options beyond traditional medications that slow this disease down?

I was on humira but unfortunately it didn’t work for me. It also made me have severe joint pain and I had tremors the whole time I was on it, could barely write! But having reactions to it is pretty rare... usually people are just tired a couple days after the injection. I did like how easy the injections were, it was once every two weeks.. way better than taking a bunch of pills every day! And puts people in remission for a long time. If you’re trying to fix it through diet- good luck.

Thanks for your replies
I do think part of my reluctance with medications is fear motivated. It's a lot to take on board - 7weeks ago my main worry was what I thought was a tricky haemorrhoid and now I apparently have a chronic illness where only treatment options seem to be heavy duty medication or do nothing and likely end up with further surgeries. Other illness have "conservative" approaches so I guess I was wondering if anyone has been able to take that kind of tack with crohns.

Link much appreciated - am trying to learn as much as possible.

Thank you EruditePaul - I've checked out that website and there's much there for me to consider but again it's all very heavily in favour of medication. Difficult to find out about what happens in a wait and see approach probably because not many have done it that way.

Sometimes a wait and see approach can lead to some pretty bad complications, some people take meds then find what foods work for them to help heal their gut then go off the medications, you could also try urging out gluten and dairy to see if that helps anything and research about anti inflammatory foods. There’s also lots of different diets you could try but again everyone’s different so these may or may not work for you but you could definitely give them a try because it could end up working really well for you. Some people even do acupuncture and it helps them.

At Labradorite - what you've described is almost exactly what the doctor told me would probably happen if I (in his words) ignore this. As I'm reading everyone's answers I can see the sense in it all but I can't shake the feeling that if it was as bad as all that there would be some symptoms and I think that little voice in my head is drowning out all the sensible, rational things people are saying.

Mak37 - lol been trying to lose weight for years so maybe now is the time to get serious about what I eat.

If you do end up deciding on humira, leave the pen out for 15 minutes before you inject, this makes you feel no pain. But I can see why you don’t want to try these medications as you have no symptoms. I wouldn’t want to be on medications either if I didn’t notice anything that needed to be fixed! And I understand that little voice in the back of your head but trust me helping it with medications is a lot easier than being hospitalized for complications... you don’t want that! Does your GI know that you’re experiencing no symptoms?

At Mak37 - yeah the doc knows I have no symptoms. I don't think he's basing his treatment on what I say so much as the results of all the investigations.


Thanks Labradorite I'll check out at article in the morning.

Thanks to everyone who's taken the time to help me out here - I'll pick it up again in morning but for now I'll say goodnight.

Lab hit the nail on the head, many of us go into denial when we get hit with news like this. I sure did, my story started in May 04, had my gallbladder out, 6 weeks later I was on vacation in Mexico. This vacation has been planned a year in advance & paid for. Two days into the vacation I became very sick. The yard guy showed up & went into town & called for a dr to come out. The dr thought it was change in food, perhaps some Montezumas revenge going on. By day 4 they sent out the dr again & an ambulance was called. I rode 90 miles to the hospital praying I would croak & get out of misery. I have never been this sick in my life, ever. A surgeon & some medical equipment was found, they decided it was my appendix so off to surgery I go. The dr took out the appendix only to find out that was not the problem. He decided to open me up lower & found a complete blockage & abscess that had sealed off. I was lucky the dr saved my life according to my drs in the states. Had it perforated I would not be here today. That hospital was not equipped with drs or equipment to handle something like that. After all that mess, I still did not believe the drs were right, including my drs at home. Once home I saw a 5 different gi drs before finding one that I liked & had my best interests at heart.

You need to obtain a copy of your scope & biopsy report. From this point on you need to keep your own medical file with a copy of all of your testing. Obtain a 2nd opinion if you feel it is necessary. However, I would not delay getting treatment. You do not want to delay treatment & have things get out of hand. As I said before, you are very lucky that you have not experienced what many have & do with these issues.

No doubt, you will read many stories on the internet about how someone kept their disease under control with diet. That may happen, however, they more than likely have very mild crohns with little symptoms or none & are not dealing with a fistula. There are cases where the disease is mild & a person doe not have many flare ups, they are the lucky ones & are not dealing with the problems your dr found either. A lot of us have had to modify our diets, some food just does not agree with us. There is no cure for crohns. I for one do not believe everything I read on the internet either, this is why I told you where to read up on crohns.

This forum is full of threads from people that had fistulas. You can use the search feature above & type in crohns forum fistulas & read about them. Educating yourself about treatment & the medications will carry you a very long way. What meds does the dr have you on now?

Take care.

Straydog what an awful experience and thank you for sharing it with me. I've been up most of the night reading through the posts on this forum and websites on this illness. One thing I've come away with is a realisation that I have been extremely fortunate thus far but that maybe that was just pure dumb luck and I can't depend on that luck holding. I'm not taking any medication at present but I have an appointment with my doctor again in about a month so I guess I have until then to get my head around this and start making informed decisions. Thank you again for all your advice.

Randynoguts that's beyond scary tbh. I've been doing a lot of reading and thinking in last 24hours and I'm thinking that maybe the medications really aren't the worst thing that could happen to me.

Irish, in the UC forum awhile back one of the mods, Ipoop, has posted excellent info several times setting out the stats of potential side effects of the bios. The odds are very low & if I can, I will try again to find the thread over there. If you could read what I am talking about it would certainly help ease your fears a lot.

When I was on Humira, I took my shot out 15 minutes or so & before injecting I rolled it between my hands. I never got the courage to inject my stomach, could not wrap my head around that one, lol. The nurse also showed me how to pinch up the skin on my thighs to give the shot. It hurts much more if you inject on flat skin. I was skiddish at first but got over it, just takes some practice. Do use the alcohol wipes provided you want the area sterile. It will have some sting, but I have had worse things believe me.

It is overwhelming at first but educating yourself about crohns is the key. Above all, don't fall into the trap of blaming the disease for every ache, pain or sniffle on the disease. Be conscience & in tune with your body. Some folks panic if they get a sniffle or a sore throat & immediately think it's their medication or crohns causing the issue & all that does is cause anxiety & stress, we deal with enough of that we certainly do not need extra that isn't necessary.

After culling the troll gi's & I found a gem with number 5, we sat down on the first visit & went through my medical history. I had a good 20 year history of gi issues that led to ER's & admissions over the years. I was told it was gastritis to the flu. My gi said well, you set a record for a lengthy history of gastritis & the flu. Not once was I ever tested. I had a very long history of steroid use & my dr figures this is what kept things tamped down for so many years. Long term steroids are bad, I now have permanent problems from the steroids. They are good for short term use but no long term. There are too many other medications out there now to treat with.

This forum is a good place to learn things, get ideas & vent when needed. I found HW by accident, but my dr told me, find a good online forum to participate in. I learned so much from this forum & I hope you do too.

about Humira, go to their website & check out their patience assistance program. They offer assistance with co-pays for people with private insurance. I had good insurance & this program saved me a good bit of money. I am quite certain your insurance will consider it a specialty drug (most do) & I was sent a 3 month supply each time. If Remicade gets discussed again, a lot of people have home health nurses that come out to their homes & administer the drug. It is cheaper that way & this may be a possibility for you.

Take care.

Straydog - I'm definitely gonna keep going with learning about crohns, only way I'm going to be able to make decisions is to have all the information I can. The public health system in Ireland isn't the worst (for all the complaining we do about it!) and I'll be able to get all my medications free as well as any hospital treatment or investigations I'm likely to need. Which is good cause after an accident a few years ago I am unable to work so private care wouldn't be an option. Public care does mean that I can't shop around for different consultants or get nurses to administer infusions at home but that's a small price to pay for otherwise effectively free healthcare. The more I read on here last few days the more grateful I am that I'm not suffering the way many people do both physically and financially.