Questions by Someone diagnosed but with minor symptoms

[erwinrosen]

My name is Erwin. I have written here a few times in the past, so my story is not new to this forum. In short, I was diagnosed about 4 years ago during routine colonoscopy followed by a battery of tests. So I have no doubt that I have Crohn's. But my situation seem very unique and I am looking for people in similar situation to discuss my case, because I am concern.
I am 65 years old. My symptoms are limited to
- Routine digestive gas, some days heavier than others along with bloating.
- More often than normal discharge during the day, mainly in the morning, but although lose at times, not diarrhea.
- Borderline anemia.
Apart from vitamins, iron, probotics, and enzymes, I take no medication. I eat normally but in moderation. No meat but fish.
I have seen several gastro doctors and the recommendations have always been "no medications at this time." Most doctors tell me that the medications are very toxic, and should not be taken lightly.
Why I am concern? I am worry that one day pain will begin and I will then come to the concussion that I should have been medicated and I am now paying the price.
Any comments, specially by those that may be in my situation. Erwin

 

[valleysangel92]

Hello there

I understand your concern and personally I would be concerned too.

If your disease is active and you are not having treatment then you are taking a massive risk with your health.

The medications used for crohns do have risks and side effects and yes some of them are severe, but they are rare. Many people take the medications for years without any serious problems.

If you have active crohns disease it needs treatment. This can be with very mild medications such as the mesalazines (pentasa, asacol, etc) which have low risks and a lower chance of side effects.

The mildness of symptoms doesn't mean the disease itself is mild. There aren't that many pain receptors in the intestines, so if you get to the point of having pain it means there has been severe damage.

I urge you to talk to your doctors and at the very least discuss the most basic medications.

Yes they are right that most of the meds should not be taken lightly, but neither should crohns disease. Don't let it sneak up on you.

 

[Bonzo 4]

Erwinrose I have similar circumstance. I have a mild case of crohns . I was given lialda, but side effects made me feel weird. Then Asacol that too. I don't take anything . Excersise watch what I eat and eat frequently . Cut out alcohol but I use cannabis. It works for me. Sometimes I think DR. Writes prescriptions to freely. When I told him that those mess gave me chest pains and back aches he was surprised . Mean while it one of the rarest side effects.

 

[DustyKat]

Hi Erwin,

If your disease has reliably been rated as mild or very mild it is in the realm of treatment plans to offer no medication but symptom control instead.

All that said, it wouldn’t be unreasonable to be concerned that the disease is being left unchecked. Of course no drug is without side effects and as you know, when it comes to Crohn’s drugs most have the potential to have awful ones. However I don’t think it would be unreasonable for you to start with 5ASA’s and see how that goes, assuming it is not contraindicated in your case (allergies, co morbidities that may rule it out). Sure, 5ASA’s are a pretty useless drug overall when it comes to Crohn’s BUT they do work for some, are pretty inoffensive in the scheme of things and with mild Crohn’s there is nothing to say that in your case they may not mop up any residual inflammation that is present.

Maybe worth a go? If it makes no difference you are no worse off and if it does then you have proved your point :wink: and will feel better in the process, win win.

How closely are the docs monitoring you?

Dusty. xxx

 

[Bonzo 4]

2 times a year, but I don't have any pain with my crohns. I have the runs , very rare I have a solid BM. Once in a while my body gets stiff. So I eat and drink pretty much everything. It's weird .

 

[erwinrosen]

I see the doctor twice per year. I have multiple tests done. Recently a CT which showed nothing. I should note that exercising really helps me. I try to go to the gym 3-4 times a week and do other sports like biking in the summer and skiing in the winter. I notice that when I do not exercise I have a tendency to have more gas, etc.
Dusty, I was recommended against 5 ASA because I am high level creatinine (meaning borderline kidney disease). Instead, an alternative doctor (MD) suggested that I take the natural herb Boswellia, which has no side effects and seems to be as effective as 5 ASA.
(See following: Boswellia serrata, 1,200 mg 3 times per day for up to 8 weeks has anti-inflammatory properties, and a few small studies suggest that it may help treat Crohn's disease. Source: Crohn's disease | University of Maryland Medical Center University of Maryland Medical Center)
Anyone taking Boswellia?

Erwin

 

[DustyKat]

Not at our end Erwin but Matt takes Turmeric.

 

[erwinrosen]

Bonzo, when you say that you consume cannabis and it works for you, what do you mean? Do you smoke it? How often? What does it do for your crohn's that you like? Erwin

 

[Bonzo 4]

Erwin I smoke regularly at night mostly. I must say it helps, it calms me down. It also gives me an appetite . Again everybody is different , but I'm against taking pharmaceutical drugs. Too many side effects and no guarantee it will work for you.but that's just me. I don't have pain associated with crohns. I have the runs, and stiffness sometimes

 

[erwinrosen]

Dusty,
You say that Matt takes turmeric. How much and is there any signs that it reduces his inflammation? Erwin

 

[DustyKat]

It is difficult to say as he was already in remission when he started using it. He had surgery 3 years ago and has maintained remission ever since. I would like to think that one, if not all of the measures, I have in place are each playing a role in keeping him in remission but who knows.

He takes prescribed medication: Imuran and Pentasa.

But I also supplement to deficiencies and like to have him at least in a solid mid range of normal blood levels, if not higher, of the following: Vit D, Magnesium and Zinc.

He takes one Turmeric capsule a day:
700mg per capsule (498mg Curcuminoids) ~
1 Capsule per serving ~
100 servings ~
525mg Curcuma longa Extract (95% Curcuminoids), 175mg Piper nigrum ~
(3:1 Curcumin/Pepper Ratio) ~

Dusty.

 

[erwinrosen]

Dusty:
In one of your replies to me you stated the following: "If your disease has reliably been rated as mild or very mild it is in the realm of treatment plans to offer no medication but symptom control instead.".
That is exactly the way some of the doctors I consulted see my situation. However, my fear has been that if the illness is "progressive", by not taking any anti inflammatory medication I am continuing to do damage to my digestive system. So my question to you and other that certainly know more than me on Crohn's, is the illness progressive? Erwin

 

[DustyKat]

Is the illness progressive? Erwin

Unfortunately that is an unknown Erwin. For many/most the disease will progress if left untreated but there are those for which the disease remains mild and never progresses past that.

I think you need to do what you are most comfortable with and with that I see two scenarios:

1. If you are concerned that the disease will progress without medication and as a result you are going to dwell on it, I don’t mean that in a disrespectful way, then you are going to have to factor in what amount stress you may be placing on yourself. The reason I raise this is because stress can be a factor in for some people in the progression of their disease.

2. If you ensure you remain closely monitored both clinically and objectively, know your body well and how it responds to changes and can read the signs then you may well be able to forgo medication. But if you have doubts that you can do this then perhaps it is best that you revisit things with the GI.

Do you keep a journal to track your symptoms? If not then doing so may give a level of control that reduces your doubts at not being medicated. A journal is something concrete, it doesn’t rely on memory alone, helps put things into perspective and is tangible evidence for you to take the doctors if you feel things aren’t going as expected. The type of things you might like to track are in the following wiki link:

http://www.crohnsforum.com/wiki/Diary-Inclusions

Dusty. xxx

 

[erwinrosen]

Dusty, thank you much, very insightful.
Unfortunately, or may be fortunately, there is not much to track. My symptoms are limited to continues but mild indigestion, meaning the stomach feels funny (no pain) and I have gas, sometimes more sometimes less. Every day is different no matter what I eat. Further, I am convinced that my brain plays games, meaning that had I not known that I have crohn's, most likely, I would have assumed that I have a sensitive stomach and disregard the symptoms.