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My first

Hello everyone my name is Buster. I feel a little awkward as I write this. Somewhere between my first AA meeting and that time in the back of the car after the football game fumbling for my girlfriend's bra strap. I guess I'll just start with a brief history.

I am active duty military and was diagnosed with Crohns after suffering from it for about three years. The military doctors said I had "stress induced IBS" and that since I had deployed I must always be stressed. Back then I bought it. Now I realize that correlation does not equal causation.

It took about two and a half years before my symptoms really got bad. I developed a fistula (gone now), went from weighing in at 190 lbs to 150 lbs in three months and random joints started to swell to the size of watermelons. My right ankle got so swollen I couldn't walk, my sterno-clavicular joint made it impossible to use my right arm and my left thumb got so fat I couldnt hold a glass. It sucked.

After another six months of suffering and doctors shrugging their shoulders I finally got a colonoscopy/endoscopy and got the diagnosis. 1 month of prednisone and Humira later the swelling is gone and I'm on the mend.

Is this supposed to be this long?

I am dedicated to tapering off all pharmaceuticals, I think they will do more harm than good in the long run. I'm also dedicated to finding a way to use the four pillars of physical health (exercise, nutrition, sleep, stress recovery) to keep my Crohns in remission whenever I get to that point. I'm trying to start an organization/facebook page for support/resources/nutritional consultation in the future. Who knows. Just eat the elephant one bite at a time.

Hope this post finds you in good health and I look forward to interacting with whoever cares enough to read this entire load of bull. Cheers.
 

valleysangel92

Moderator
Staff member
Hello and welcome to the forum.

I'm sorry you had a difficult time getting diagnosed, unfortunately this quite a common experience among people with IBD.

A month of prednisolone is not at all unusual. Most people will start at a fairly high dose and then will slowly lower the dose over a few weeks. It's really important to stick to your doctors instructions for tapering Pred as coming off steroids too quickly can be dangerous. While steroids are not a good idea long term they are very effective for quickly settling inflammation and reducing symptoms.

Humira is a biologic and is taken on a much longer basis. The idea of medications like this is to get crohns into remission and to keep it there for as long as possible.

While some people can get off all pharmaceuticals, this is not possible for all of us and it's something that should only be attempted under strict medical supervision. Unfortunately since you've already had a fistula it seems that you have pretty advanced disease and there fore it is quite unlikely that you will be able to fully control it with lifestyle alone. While I understand the concern about using the medications long term, the risks of leaving crohns without proper treatment can be far higher.

If crohns isn't properly managed it can lead to all sorts of nasty complications including fistulas which you already had, narrowing of the intestines which can result in obstructions which can then lead to the bowel bursting which requires emergency treatment. There is also the risk of malnutrition which can have very serious consequences of its own. This is just a snap shot of the complications people with crohns are vulnerable to.

I'm not saying this to worry or scare you, just please consider it carefully before you make any decisions regarding treatment.
 
Thanks for the insight! No one told me how "advanced" my case was. They never mentioned any kind of bowel resection so I figured it wasnt that bad, but they did say that they couldnt finish the colonoscopy because the scope couldnt fit through half of my large intestine. Either way I'm feeling better which is whats important but so is perspective. Does lifestyle make a difference when on the meds? I have been super sluggish especially after initial and second doses of Humira. Any one else have that?
 

valleysangel92

Moderator
Staff member
Unfortunately doctors have a nasty habit of forgetting to tell patients what things actually mean in terms of disease progression. If a fistula has formed then it means the crohns has managed to eat through every layer of the bowel lining and create a tunnel into another organ or to the skin. They can sometimes be treated with medications and the biologics like humira are the best ones to do this. Unfortunately a lack of surgery doesn't mean the disease isn't severe, I wish they would take the time to explain things to us.

They couldn't finish my first colonoscopy either, but I had a lot of scarring from being undiagnosed for at least 5 years. The narrowing you have could be from inflammation in which case the medications will bring it down.

Lifestyle is important and can definitely make a difference. You might find it helpful to keep a food diary. Keep a record of what you're eating and the symptoms you have after. This will help you see if there are any patterns between what you're eating and a worsening symptom. A lot of people with crohns find that they struggle with foods high in fibre like fruit and green veg but everyone is different. If you're finding it tough to get nutrients because veg makes your symptoms worse then you might find that making smoothies helps. This breaks down the fibre and makes it easier to digest and easier on our tummies.

I've personally not been on humira, but I have seen a lot of members describe feeling tired or wiped out after their humira dose, so it does seem a common side effect.
 

valleysangel92

Moderator
Staff member
No problem! If you think of anything else please ask and feel free to have a nose around the rest of the forum.
 
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