Crohn's Disease Forum » General IBD Discussion » Diagnosed at age 50 & over Support Group


 
04-10-2017, 11:32 AM   #421
scottsma
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Hello and welcome.I don't know about "late on-setters" having a less aggressive disease,but I suppose mine could be classed as such (so far).
What I do know is that I will be forever grateful that Crohns appeared as late as it did,when my days of education,work and child rearing were behind me.To many people with Crohns have to cope with all of those factors,while I have the luxury of only having to worry about myself.
05-04-2017, 11:45 PM   #422
TonyWilliams
 
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I turn 55 years old this month, and I've been diagnosed during a routine colonoscopy.

The odd part is that I have none of the symptoms. I have always been healthy, and have no known allergies. I don't smoke, nor have I ever smoked.

If I don't experience the symptoms that require drugs to combat, then I just wait for a symptom? I've certainly had diarrhea in my lifetime, but it was always associated with some food or drink issue in third world countries.

I'll meet with the doctor on the 18th of the month, and I'm a little uncomfortable to have them give me all the worst case scenarios and drugs that they'll want me to take. I'm more apt to not do any drugs if I feel fine, and reassess when symptoms develop.
05-05-2017, 01:20 AM   #423
rorho19
 
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the danger with not taking maintenece meds is you end up needing surgery for fibrotic strictures...just the situation i am in now.

R
05-05-2017, 01:45 AM   #424
DougUte
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I turn 55 years old this month, and I've been diagnosed during a routine colonoscopy.

The odd part is that I have none of the symptoms. I have always been healthy, and have no known allergies. I don't smoke, nor have I ever smoked.

If I don't experience the symptoms that require drugs to combat, then I just wait for a symptom? I've certainly had diarrhea in my lifetime, but it was always associated with some food or drink issue in third world countries.

I'll meet with the doctor on the 18th of the month, and I'm a little uncomfortable to have them give me all the worst case scenarios and drugs that they'll want me to take. I'm more apt to not do any drugs if I feel fine, and reassess when symptoms develop.

It is possible for someone with Crohn's to have inflammation of the intestines and have no symptoms. It is not very often this happens, but it can happen. If that is what the biopsies from your colonoscopy found, I would not recommend staying off meds that control the inflammation. Not treating it can lead to major damage needing surgery.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
05-05-2017, 09:16 AM   #425
rrhood1
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I agree with Dougute, I didn't have symptoms that I could identify as Crohns before I was diagnosed. I had occasional diarrhea and some joint pain but chalked that up to getting older and bad food. However in the 7 years since diagnoses I definitely know when I'm in a flare now and don't just think I have the flu. The problem with no symptoms is that the inflammation in your gut doesn't go away and gets worse. Or develops colon cancer. Or you have an obstruction. With medication I have been able to not have surgery like many Crohns patients have to have.
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Alison

Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
05-05-2017, 09:29 AM   #426
TonyWilliams
 
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Thanks for the comments. Yes, I saw that there could be real issues down the road, but couldn't that be monitored? If they do a colonoscopy every 6-12 months, wouldn't they see an impending problem?

What drug might have the least adverse impact? I have never taken drugs for anything, except Tylenol.

Also, I'm a pilot, so there are very real implications to drugs and the like.
05-05-2017, 10:22 AM   #427
rrhood1
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They can monitor but I don't know if your GI would be comfortable doing a colonoscopy every 6 - 12 months. There's always a risk with sedation and with the camera. You would have to ask your GI about this.

The drugs may take 3 - 6 months to start working so if you do have a problem, the drug wouldn't respond quickly to this. Crohns drugs tend to be long term - Remicade took 6 months for me to start feeling better. All of the drugs have side effects, some of them are worse than others. However I don't want colon cancer - my father died of it so my risk is high. I'm dealing with a Remicade side effect right now - psoriasis. We've decided that we will keep going with the Remicade and treat the psoriasis with a specific drug instead of trying a drug that treats both. Which drug is better is something for your doctor and you to decide.

As a pilot, you would not want a drug that gives you side effects like sleepiness, brain fog, fatigue. However, those side effects are also an effect of Crohns - the fatigue is not just simple tiredness. It is an overwhelming feeling that you can't even lift your legs to walk, can't keep your eyes open, can't stay awake no matter what you do. So this may occur even if you don't take any drugs. Then there's the diarrhea. We're not talking about a few sessions in the bathroom. We're talking about the constant urge to have a bowel movement - you want to stay in the bathroom for hours. 30 - 50 times a day. Dehydration caused by the diarrhea. Becoming low on minerals and nutrients to the point where your doctor is afraid your heart will stop.

Sorry - I'm being very graphic but this is often the life of a Crohns patient. I don't want to scare you - with medication, your life can be fairly normal. There may still be days when the disease takes over but you can power through it and keep going. You need to talk to your GI about options especially with your job as a pilot. Also, get travel insurance. You never know when it can hit you.
05-05-2017, 10:42 AM   #428
Bufford
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Also, I'm a pilot, so there are very real implications to drugs and the like.
Be very careful how the diagnosis is handled. My understanding is that in some jurisdictions a Crohn's diagnosis means having one's license suspended or restricted.
05-06-2017, 10:14 AM   #429
TonyWilliams
 
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Yes, when I officially have a diagnosis and / or using drugs, I need to report this to the FAA. They will ground me.

There is a process to reinstate the medical certificate that is required to fly, but that will take some time and have restrictions.
11-16-2017, 08:40 AM   #430
curlywurly
 
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H All
I was diagnosed with crohn's in 2013 after 6 weeks of constant runs and right side pain, I lost a stone and a half in weight. I have been on numerous meds Meslazine, Azathioprine,6-Mercaptopurine,Methotrexate.
I had a reaction to all I was 54 at that time.
I too had a lot of stress at the time loss of job, loss of friend due to bowel cancer.
I have had two colonoscopies sigmoidoscopy and a few mri on small bowel that was clear.

I am now 58 and I recently had a gastroscopy which found an Hiatus Hernia and a short section of Barrett's,i am at the moment on antibiotics for SIBO.
It seems to be a gift that keeps on giving.
I have just lost my benefits as they say I am fit for work.
11-16-2017, 11:04 AM   #431
scottsma
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Hello and welcome.That's just terrible losing your benefits.I have the utmost respect for anyone who can hold down a job and / or raise a family with this damn disease.I usually have a reasonably easy time of it compared to most,but I couldn't work unless it was flexi hours on my terms.Luckily we're retired so it's not an issue.I don't know what to advise,but I hope things get better for you.
11-16-2017, 11:07 AM   #432
rrhood1
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Im sorry to hear that you lost your benefits. Is there a way to appeal this decision?

Aging can be a trial - we seem to just get used to one thing and another pops its ugly head up. We all have multiple diagnoses and diseases.

You probably need to go onto the biologics in order to get some remission. Theyre expensive, I know, but you need to talk to your doctor about further medications.

With so many different things happening to you, you may want to consider getting one more doctor - someone that can look at you as a whole person and include all your specialists in your treatment. Mine suggested an internist - they would receive all your test results and be able to direct the next step. My GP took on that role as shes very learned in multiple fields. She looks at me as rrhood1 and knows every problem that Ive dealt with and the treatment. Shes actually taken courses in order to better understand what is happening to me. Im very lucky to have found her.

Please let us know how youre doing. This forum is one of the best going for information and support.
11-17-2017, 09:24 AM   #433
curlywurly
 
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Thanks to everyone who gave advice about my problems, I have requested a Mandatary Reconsideration I sent a GP & Consultant report about what is going on at the moment but no joy I have still been turned down I don't understand as I have more going on than
I did two years ago when they put me in the support group.
I am seriously thinking of going for early retirement as I have a private pension I will lose
money but I just want less stress.
01-17-2018, 07:56 PM   #434
HalkiGirl
 
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Hello, group!


After a few years of "tummy troubles" I was dx'ed with CD in December...not the best Christmas present but certainly memorable. Working to get the inflammation under control and lesion healed. Last few years I've been working out regularly and revamping my diet (most of the time I'm "compliant" lol), which I suspect kept me from getting sick sooner but a bit of extraordinary stress over the last 7 months apparently pushed me over that cliff.

So now that I know stress is one of my triggers, I'm working with a nutritionist to work through dietary triggers. Am wondering if anyone has experience with nutritionists, because some of what I'm hearing makes sense (possible food triggers) and some absolutely doesn't (we'll get you off of the meds at some point....uh, no, I'm just starting to not having to hit the bathroom 15 times a day and don't want to go back to that). Would appreciate any insights you folks might have.
01-18-2018, 04:22 AM   #435
scottsma
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Hello and welcome to the forum.I'm glad you're getting the ball rolling and I hope you begin to feel better soon.I can't advise on diet,as we're all different as to what triggers an upset.Your dietition will probably tell you to keep a food diary but it's a long slow process of ilimination.You'll do well to stay on the meds if they're helping,but if you have adverse affects discuss it with your GI as there are lots of alternatives to try until something suits your needs.There will be others along soon to offer support and advice.
01-18-2018, 04:34 AM   #436
curlywurly
 
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Hi Halkigirl
Welcome to the forum I personally have not seen a nutritionist but you will find that this disease effects everyone different which is why it is difficult to treat. I have had reactions to different meds over the last five years. I have found that lager is a trigger for me so I haven't had any in five years.
I now suffer more with constipation and this brings its own problems, I take fibre in liquid form but it does not really help and I don't want to take it long term. I would take your GI advice before anyone else at this early stage to get you hopefully in remission.
01-24-2018, 12:33 AM   #437
HalkiGirl
 
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I follow up with my GI this week and suspect there could be a change in medication since some symptoms have been helped and others have not. Was somewhat following the Paleo diet pre-diagnosis and am doing more strictly as doctor directed...and have been put on notice by my gut almost immediately when I've guessed wrong on what is safe, although sometimes difficult to determine the culprit in a few cases. Looking through past posts here it's clear I must be patient--didn't get sick overnight and won't feel better overnight either.

Glad I found the forum, good to not feel so adrift and alone with this new "normal".
01-24-2018, 04:59 AM   #438
scottsma
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Diet is different for most.Usually best to steer clear of spicy,greasy,nuts.seeds,popcorn,although if you're doing paleo some of these won't apply.If in a flare a liquid diet for a few days,to rest your gut,might help.Also bland food,chicken (no skin)white rice,toast(white) bananas might help too.I know others will have lists of do's and don'ts that are best for them.You'll soon learn what's best for you.There are many on the forum who lead a perfectly normal life,career,family,vacations etc.so try not to be down-hearted,you're on the right track.
01-24-2018, 06:23 AM   #439
curlywurly
 
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Hi Halkigirl
I am glad you will be seeing your GI this week as Scottsma has mentioned you will find your own triggers to what sets you off.
Unfortunately it is not a one size fits all disease we are all unique, hope you can find a medication that works for you.
Keep your chin up we are all with you.
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