Crohn's Disease with no symptoms

[misscris]

So I have a question for all you Crohnnies.

As some of you read in my story, I didn't have any symptoms of Crohns before I had my surprise surgery. And I really haven't had any symptoms of it since the surgery either. Every so often if I eat something, I might be off to the bathroom a bit later to get rid of it, but that's few and far between. That really isn't anything that a lot of people with normal digestive tracks can deal with too. So, with that being said, here's the question.

Do I really need to get on medication now, even though I have no symptoms?

My Dr. keeps telling me that I'm categorized as having Severe Crohns because I had resection surgery. However, symptom wise, I think I fall into the Mild section. So he wants to be aggressive and treat with medications right away. He wanted me to start getting on them when I first went to see him in April, while still recovering and dealing with an infection in one of my incisions. He gave me 3 medications to look at and figure out which one I want to take. I'm sure you all are very familiar with them all. Azathrioprine, Humera, and Remicade.

The GI finally decided to let me wait to start with any medication until I've had a colonoscopy and he can see how everything looks since the resection. But I'm just really wondering if this is something I should be doing (taking medication that is) all the time when not having any symptoms or not? He says yes, but he's a Dr.

Any and all suggestions or questions greatly appreciated while I debate this. I'm still new to the disease and still trying to learn all I can about it!

 

[D Bergy]

I feel that some kind of treatment is needed if you are diagnosed with Crohn's. I went 45 years without serious symptoms and then "Wham".

Diseases usually do not get better with age, and this one can get considerably worse. It can and does do permanent damage.

I decided to use Low Dose Naltrexone for a host of reasons, but that was against my gastro's advice.

There are any number of treatments that can help control the disease. I would consider treating it one way or another.

Just my opinion.

Dan

 

[misscris]

Thanks Dan. I apprecaite the thoughts and suggestions. I have to still look into ways to control it. I'm thinking I may also need to talk to a new GI and ge a second opinion as well. All this guy wants to do is treat me like I've got severe crohns and medicate me without even listening to me. Makes me want to grab him by the collar and say "I'm paying you to listen to me doc ... now listen!" hehe

 

[dayng1016]

My thoughts on this, and I base this on my situation only. I have not had any surgeries. My symptoms started all of a sudden, but very mild compared to most, buy my crohn's has always been considered moderate to severe due to having a stricture. I am currently on Humira and Entocort and weaning myself off the entocort (started 3/day now at 2/day and next month will go to 1/day until gone). I will continue the humira until I'm all out of refills. I have been symptom free for approximately 2 months now (since I quit smoking) and me personally see no reason for me to continue to take meds when I have no symptoms (but I won't stop suddenly).

It's been a few months since I've had my last appt w/ my GI and I have no follow- ups. I plan on keeping it that way. For me, I think my symptoms will continue to be gone because I really believe my was triggered by my smoking (due to the timing) since I had no symptoms or stomach problems prior to smoking.

But I do believe I would look at things differently if I had to have surgery at any time or if my symptoms were more severe. Only you can make the choice of meds or no meds, but just make sure you don't make a rush decision and be open to all advices, recommendations, etc.

Good luck and good to hear you have been sypmtom free for a while!

 

[misscris]

dayng thanks for the words. I posted this thread so I could see everybody's views and such to get a perspective from different people. I know there are people who think medicine all the way and those that think the complete opposite and those in the middle. I'm open at this point to anything, just trying to weigh the pros and cons. My symptoms, or lack thereof, have always been mild if that. Except that little big surgery of course. Before that I never had any inclination that I had this disease or that I had so much going wrong in my body. So I dont know what to think. I guess if I'd suffered for years like a lot of people have, it'd make more sense to get a diagnosis and it make sense. I also was a smoker btw. I quit the morning of my surgery and have yet to have a puff since.

 

[BWS1982]

Medications for Crohns are preventative in addition to being assigned as treatment. Many meds have a "remission dosage" type concept for them. The obvious reasoning to me would be that because nobody is cured, why should anyone stop their meds?

I was kept on 2.4 grams of Asacol when I went into remission in 2007 and I still obsess over that dosage for the fact that in 4.5 months my remission came and went, and if the dose was any higher or I was on another drug, I might have been kept in remission.

I guess it's like this: do you only take vitamins when you're sick? Do you get car insurance when you hit something?

 

[CD68]

QUOTE]My Dr. keeps telling me that I'm categorized as having Severe Crohns because I had resection surgery.[/QUOTE]

My guess is if you get a copy of the notes your surgeon made about what he observed you'd be have a better understanding of why your GI thinks that drugs at this point are advisable. For the life of me I don't understand why docs don't share reports like this with us, but they've always been eye opening for me. For example, I was told that my last bit of bloodwork was "just fine" but when I looked at the report itself it showed four areas in which my blood was way out of range. I guess "just fine" for them means, "just fine for a Crohn's patient, we're not worried about irregularities and we don't think you should worry either" (okay, I won't worry, but I still want to know what's going on but "just fine" to me means that everything is completely normal.

I got copies of biopsy reports and found tons of details that the doc doesn't bother to burden me with. So I guess that's why I'm thinking that the notes the surgeon took would be enlightening and that report is what your GI is thinking of when he's making his recommendations to you. Some docs aren't very good at communicating details with their patients, they just expect you to take their word on faith. I had one doc that automatically gave me a copy of every test he had performed on me and I found it so useful to understanding what was really going on that I've started requesting copies of everyone now.

I have a "mild" case of Crohn's, and according to one doc clinically in remission at that, and I'm on a maintenance dose of Humira and Pentasa. I have a partial stricture in my small intestine and if I flare it might really close up all the way. The last time they did a pill cam I had several ulcers in my small intestine and if I flare they might get worse. I think the maintenance doses help to suppress disease activity.

If one of the worries you have about medicine is the risks of side effects there are places that you can look up what percentage of people suffer from whatever side effect you are worried about.(Google name of drug and use the keywords "phase III data" For example, one of the risks that is cited for Humira is cancer, but when I looked up how many people this happened to compared to the thousands of people reporting symptoms it was so small as to be negligible, especially when I look at the possible benefits:

"phase III CHARM study, which showed that those with moderate to severely active Crohn's treated with Humira were almost 60% less likely than patients on placebo to be hospitalised (5.9% versus 13.9%).

The firm noted that people with Crohn's may be hospitalised for reasons ranging from fever and vomiting to intestinal obstruction and infections, while hospitalisation is responsible for some 60% of the disease's cost, with the average stay costing some $37,000 per patient.

Numbers and percentages are useful to me personally when I evaluate the risks and benefits of a drug in a way that the generic advice from my doc "this drug works real good" or the drug warning "some patients may report..." doesn't convey.

 

[misscris]

Hey CD68, I actually do have a copy of my surgeons notes. The entire long and detailed event. I requested a copy to keep in a file for myself in case a Dr I go to isn't in the same company and can't view it. The way it works at the clinics I chose in the beginning, before I knew anything about what was going on, are all connected. So all the doctors have to do is call up my name and it will show them EVERYTHING I have had done in any of the offices. Kind of cool. So they can see my surgeons notes and so forth. But I did request a copy and have read it a few times.

I am one of those people that if I don't understand, I will make the dr explain it to me. So when the GI was talking about my blood test results, I made him go through each one and tell me what they were and whats normal and whats not. I made him tell me WHY I was a severe case, and he keeps saying just on the principal that I had surgery at all. I will be seeing him again sometime soon (as soon as I get around to actually making the colonoscopy appt) and I will try to get some more info out of him.

I'm not against taking medication if it's needed. As for side effects, I have read all the side effects and usually when you read them all it's a little scary for sure. But it's that way with any basic antibiotic as well. I'm not honestly concerned with the side effets per se, just basic questionning.

 

[fenway1971]

I'm fortunate in that I haven't had as serious a case of CD as others. I was diagnosed late (age 32) and took colazal which helped me get better. Then, what's the big deal with CD and thinking I was "healed", stopped taking meds. Last year (age 36), I had worse flare up of my life. And, it's taken me 6 months to get it back under control. My case, overall, is better than most but I do think not taking maintenance drugs was dumb. If I had to do it all over again, I would've been more disciplined about meds. So, live and learn. I really think that flare-ups will only worsen as time goes on.

That said, docs are trying to protect themselves. So, they'll err on cautious side. Just engage with him/her and ask questions and really test whether or not you need these drugs. You probably do need to take meds - but maybe not as much as your doctor suggests.

 

[misscris]

That said, docs are trying to protect themselves. So, they'll err on cautious side. Just engage with him/her and ask questions and really test whether or not you need these drugs. You probably do need to take meds - but maybe not as much as your doctor suggests.

That might be a big part of what has bothered me about what he's said. He won't listen to me when it comes to drugs or anything else. He asked me MANY times if I had D all the time or anything before surgery. I told him no, but he just kind of looked perplexed by that. But then he keeps saying I have a severe case and I need medication and I need medications for SEVERE Crohns. I don't know the disease and I'm NOT a Dr and don't pretend to be, but I never had the D or other such symptoms, except for what we thought was painful cramps during my period. Thats it. We'll see. I think he gets kind of flustered because I question him so much and I make him explain everything to me in human words rather than doctor words so I can understand before walking out that door. Even if it makes him late for his next patient.

Unfortunately I wouldn't even know what a high or lose dose of the medication would be at this point either. I will be asking him what my dosage is and why when it gets prescribed though. Thanks for your input!

 

[fenway1971]

you bet! i found researching here helps.

the one thing we all have to be careful of is that those with IBD have a higher probability (still small so don't freak out) of cancer. so, by keeping inflammation down, we help our chances of remaining cancer-free. another good reason to not "risk it".

that said, you strike me as one who won't complain unless it REALLY bothers you. so, you're probably outside the norm of most patients. while you may not feel bad, don't forget that you're used to you. you might actually have inflammation but are so used to it that it doesn't phase you.

 

[misscris]

Only a few short conversations and you already have me pegged. shit!! haha Yeah, I am one to tolerate a lot without complaining. Emotional, physical, mental, doesn't matter. People in my life know that if I am down with pain or kind of break down that's it's serious or LOTS of long standing stuff. But I'm keeping myself aware and every little twinge or anything I'm dwelling on it to see if maybe it's a crohns symptom. You know?

But, also, if I were to be used to the pain of inflammation and ignoring it .. doens't that mean that I'd have had to have felt it before? Thats part of what concerns me as far as whats gone on so far. I really didn't have any warning all this was going on in my body, and I worry that it will happen again without me knowing and ending up in a serious emergency surgery again. I told my Dr that worry and that I wanted to know if he thought that being proactive with this disease was a good idea seeing my history, but he also said no to that. <shrug> So confused. heh

 

[D Bergy]

I do not feel the pain that others do with this disease. I can only tell if something is going on by paying very close attention to sensations. That is another reason I use a maintenance drug. I think I could find a pile of guts in the toilet before I would know anything was going on.

If you are concerned about drug side effects or do not like using drugs in general, you should look into LDN. No serious side effects and it protects you from other autoimmune diseases and Cancer.

One pill at night. No problem. I am not one that uses pharmaceuticals without a good reason, but I will use them when it makes sense. Low Dose Naltrexone makes sense to me.

Dan

 

[misscris]

I think I could find a pile of guts in the toilet before I would know anything was going on.

hahahah ... I don't know why .. but that made me laugh. hahhaha

Yeah, I'm a lot like you Dan. I don't really have pain with all this. The only pain I had, and it did just about drop me to my knees and stop my breathing, was the pain from the abcess itself before surgery. That was intense pain! They said they were shocked that I was still moving and walking when they saw the condition my body was in. hah <shrug> I also an not one to use pharmaceuticals without reason. I still have a full body of pain pills they gave me when I came home from the hospital. But I will take them if it's necessary and like you said, makes sense.

 

[drew_wymore]

I support taking maintenance drugs as well. I hate taking pills or injecting stuff or what have you but if it's going to lessen the risk of things getting worse then I'm all for it.

 

[misscris]

Thanks Drew.