Robb - Over 25 years with Crohn's, but new here, and feeling like I know nothing anymore

[Primal]

I'm Robb, and I was diagnosed, after a lengthy hospital stay well over 25 years ago, with Crohn's Disease.
I have been lucky, in regards to Crohn's... While did the whole treatment roller-coaster for the first few years, I had an open-minded and understand GI who helped me to eventually get off all drugs and get my Crohn's under control with diet and stress management. He passed in 2005.
I have been able to to keep things under control by following the advice he gave before his death. It was working, and I saw no reason to change it.
Recently, however, it doesn't seem to be working anymore.
I am having horrible flare-ups, regardless of my diet and stress levels. I am getting infections that I have never had to deal with. In the last 5-6 weeks, I have had what seems to be the flu, followed by a severe flare, another bout of what seems to be the flu, and now what appears to be pink eye.
After doing some research online, I see that eye problems are not uncommon with Crohn's. Have I just been lucky all this time? Is this something I'll have to deal with from this point on, now that it's started?
I thought that after so long, I pretty much knew what I needed to know about Crohn's, but I feel like I'm learning this thing all over again, and it's kind of frustrating. Any advice would be appreciated.
As I said... Maybe I've been lucky, but... Does Crohn's change that radically, that quickly, after so many years of being "under control" ?

 

[nogutsnoglory]

Besides all these infections are you having any GI issues? Intestinal pain, bloating, diarrhea etc?

Crohn's can act very aggressively and manifest itself quickly. Unfortunately remission is only for so long and ultimately the disease usually rears its ugly head.

 

[Primal]

Besides all these infections are you having any GI issues? Intestinal pain, bloating, diarrhea etc?

Crohn's can act very aggressively and manifest itself quickly. Unfortunately remission is only for so long and ultimately the disease usually rears its ugly head.

All of those - Intestinal pain, bloating, diarrhea, as well as others, are part of normal life for me - kind of an every day thing. After so many years, I've learned to just to deal with it. It just seems like it's gotten so much worse lately.

But if remission is a temporary thing, and it pretty much always comes back, then my primary choices are to either go back on meds, or learn to live with a new level of pain. I guess I've got some thinking to do...

I will talk to my doc at the next apt about it, but I so hate the idea of getting back on meds. I adjusted once: Maybe I can again. If not, then meds may still be an option.

 

[nogutsnoglory]

Many in remission stay on maintenance medication. Whether its their body that went into remission or the meds that put and keep them there is anyone's guess.

Whether to be on medication really depends on the severity and manifestations of your disease. If its just pain and you can live with it that's one thing but for me for example I am prone to aggressive inflammation that quickly turns into scar tissue if not dealt with. I would constantly be needing surgeries to remove obstructions in my intestines. I hate meds and tried so hard without them but at this point in life even if I achieve remission I think I'd be afraid to give up medication.

 

[Primal]

Many in remission stay on maintenance medication. Whether its their body that went into remission or the meds that put and keep them there is anyone's guess.

Whether to be on medication really depends on the severity and manifestations of your disease. If its just pain and you can live with it that's one thing but for me for example I am prone to aggressive inflammation that quickly turns into scar tissue if not dealt with. I would constantly be needing surgeries to remove obstructions in my intestines. I hate meds and tried so hard without them but at this point in life even if I achieve remission I think I'd be afraid to give up medication.

I honestly don't know what kept me healthy all these years, diet/stress or just dumb luck. I'd like to think what I was doing made a difference, but I just don't know.

I understand your hatred of meds: I feel the same way. If there is another way to do it, I'm all for it. The problems I've been having lately are making me consider meds.

I've been lucky enough not to need surgery so far. I'm hoping that will be a trend for me. The thought of surgery terrifies me!

 

[Miekske]

I think it's all a matter of luck. Agree with the medicine thing but sometimes there isn't another way to overcome the Crohn problems. The eye problems are not uncommon, joint pain isn't that either. Welcome!

 

[Primal]

I think it's all a matter of luck. Agree with the medicine thing but sometimes there isn't another way to overcome the Crohn problems. The eye problems are not uncommon, joint pain isn't that either. Welcome!

Starting to realize that, but hoping I can stay med-free. If I have to go on meds, so be it, but that's a final option for me. I'll adjust to more pain if I'm able, and go to meds only if I have to.
Thank you, for the welcome. I'm looking forward to meeting all of you.

 

[SJ!]

Our Gp said to me on Thursday that often Crohns can start in the toddler years, then again during the teenager years and then in the mid 30's and again in the 60's and later stages of life.

He thinks my son is sick because he is just hitting puberty!

 

[Primal]

Our Gp said to me on Thursday that often Crohns can start in the toddler years, then again during the teenager years and then in the mid 30's and again in the 60's and later stages of life.

He thinks my son is sick because he is just hitting puberty!

I was diagnosed in my 20's, but had issues long before diagnosis. Even as a child, I had issues with certain foods and had digestive problems.

I learned early on that there were foods I could eat, and foods that caused problems, and that stressful times would almost always bring on a flare. I was able to stay med free - and symptom free, for the most part - for years.

SJ, pay close attention to what foods cause problems, and do anything you can to help him learn to keep stress out of his life as much as possible. He will always have flares, but they can at least be kept to a minimum with care.

I wish you and him the best of luck, and absolutely the best of health.

 

[sickofcrohns]

Sorry to hear you're having a bad time again.

Are meds your last option, or is surgery your last option? If your quality of life is suffering, you at least should be aware that there are different medications available now than there were 25 or even 15 years ago. I hope you have found a new GI who can help you to navigate the current disease/treatment landscape and get your disease under control.

 

[twokatmew]

I was diagnosed in 1975 when I was 13. Back then it was Prednisone and Azathioprine or surgery. I hate Prednisone especially, but even when I've been fairly asymptomatic, I have to stay on some Pred or I end up in a big flare. I finally had to have surgery in 2004, because it was talking more and more Pred to avoid bowel obstructions. I just developed too much scar tissue in my terminal ileum, and I was living on a liquid diet. My TI had only a 2mm opening due to scar tissue. Surgery saved my life I'm sure.

I can eat fairly normally most of the time now, but I still have symptoms and have to be on meds. I take 5mg Pred daily along with azathioprine and Pentasa. Sometimes I go a while with few symptoms and start to think what I'm doing with diet, stress mgt and supplements is making a difference in controlling Crohn's. And then suddenly I find myself in a flare or unable to eat the very things that seemed to be working for me. After all these years though, I think Crohn's has a mind of its own. Certainly all we do to take care of ourselves helps, but Crohn's seems to be predictably unpredictable ... at least for me.

Anyway, I'm sorry you're struggling again. I try to be grateful for the time my Crohn's behaves, but when a flare hits or symptoms return/worsen, it's human to be sad, angry and frightened. It's a loss of semi-health we have every right to grieve.

 

[Miekske]

After all these years though, I think Crohn's has a mind of its own. Certainly all we do to take care of ourselves helps, but Crohn's seems to be predictably unpredictable ... at least for me.

Thank you for this text. It's how I feel about Crohn's Disease. ...