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
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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
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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.
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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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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
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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
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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
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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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Iím 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 itís ugly head up. We all have multiple diagnoses and diseases.

You probably need to go onto the biologics in order to get some remission. Theyíre 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 sheís very learned in multiple fields. She looks at me as rrhood1 and knows every problem that Iíve dealt with and the treatment. Sheís actually taken courses in order to better understand what is happening to me. Iím very lucky to have found her.

Please let us know how youíre doing. This forum is one of the best going for information and support.
11-17-2017, 09:24 AM   #433
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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
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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
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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.
04-06-2018, 04:42 PM   #440
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I was diagnosed at age 51 at the end of last September.

I felt a twinge in my gut for a few months before which I thought was due to anxiety and stress of taking care and grieving for my mother who succumbed to Alzheimer's disease after two years of decline. I have no complaints, taking care of my mother was the most beautiful thing I ever did and she left us, living at home up until the end. She never lost her kind heart and giving spirit, knowing as a lady when it was time to leave. I had no idea it was the developing if Crohn's.

I had developed hemorrhoids and diarrhea, so I added fiber tablets and begin to eat salad every day until the the diarrhea got out of control and everything I ate came out as it was. My hemorrhoids started to constantly bleed and I lost a lot of blood so I went to the ER, after I got out of work.

They felt my stomach was hardened and gave me a CAT scan. They diagnosed me in less than 4 hours. The doctor assured me that Crohn's is a very manageable. My sister has had it since 1978.

They wanted to admit me because I was so weakened, but they hospital had been over whelmed by many victims of a a bus and car accident and only critical patients were being admitted, so they sent me home after connecting me with a GI doctor for a follow-up.

I went to the GI doc two days later and was sent back to the hospital to be admitted with sever dehydration. My intestines were so swollen from the Crohn's attack and all the fiber I took that they had completely shut down. The doctor told me it was like using sandpaper in a cut on my arm until the entire arm got infected.

I never thought too much fiber could cause so much damage. When I got admitted, they gave me another CAT scan and said I gone septic. The ER doc said I was four days away from complete organ shut down that I would never go home from, indicating I was 4 days away death from lack of water and food for 5 days. I know from being a wilderness survival trained that you can live for weeks without food but only days without water.

I did not process how close I was to my demise until a few months later. It makes sense why it is taking me so long to recover. I am in relapse again after rejecting Remicade and waiting to see my GI doc this Monday. I have gotten on the track for remission and just get keep getting knocked off from acquired allergic reactions to antibiotics, amoxycillin, then Flagyl which was the worst since once you start the later, since once you start it you have to finish the prescription or risk not being able to respond to that class of drug in the future.

I still have hope that I will someday be in remission, it will come some day.
04-06-2018, 06:51 PM   #441
rrhood1
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Welcome Thike1966. Yes, fibre can be terrible for some of us. I have to keep away from kale, quinoa, flax, most nuts and seeds. For some reason I can tolerate oatmeal and salads with lettuce doesnít hurt me - just goes through undigested. It helps to do a food diary so you know what to avoid. Also if the symptom of a flare start, I go to a clear liquid diet for a few days then go on the BRAT diet (bananas, rice, applesauce, toast). Donít be afraid of asking advice - weíve all been through a lot and can often give some suggestions. Please do check things out with your GI doc though - they are often the best source of information and what to do for your health.
04-06-2018, 07:55 PM   #442
JackG
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Thike1966, I had a tortuous journey to my diagnosis as well, losing 50 pounds or more over six months, and I wasn't a large person to start with. Finally after several visits to University of Chicago they found the problem on an X-ray table. The surgeon came in and said I had an abscess that had burst and I wouldn't survive the night. They gave me a transfusion and I felt like a new man. Then they took me to surgery for an ileostomy, which was reversed 6 months later.

The good news is I've stayed faithful to my meds, and my GI doc, for 35 years. I've had a normal life with work, children and lots of golf. And the meds are better and the docs more knowledgable now than ever.

And of course, this board is a terrific resource.
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Diagnosed 1982
Ileostomy and reconnect
Meds over the years: Sulfasalazine, Pentasa, Prednisone, Entocort, Azathioprine (allergic reaction)
Present: Humira
04-06-2018, 08:36 PM   #443
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JackG,
Thank you for the hope and I can't wait to be well enough to play golf again with my father. When I get into remission, I will throw

I agree medicines and docs are getting better all the time. The doc who leads my support group told us a tectonic shift is on the way like we have not seen in 20 years since the intro of TNF blockers. He mentioned that a the drug, Xeljanz, which blocks the production of TNF, so it doesn't just block them. It's now used for Rheumatoid Arthritis and is in stage 4 out of 5 of the FDA approval process, and offers a great new combo treatment with TNF blockers.

With the ever deepening gene understanding and the understanding of microscopic symptoms, we are going to get the best care ever.

And also thank you to rrhood for the welcome.
04-07-2018, 04:01 AM   #444
scottsma
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Hello and welcome.I agree with all of the above replies to your post.There is always someone around who will give you advice and support.At first diagnosis everything is stressful as there's so much to take in.Just go at your own pace and do what's best for you.We're all different,so what works for some won't work for others.Diet in particular.
I'm so sorry for your Mother's demise,and maybe the underlying stress brought your crohns to a head.Stress is not good.I'm glad you found us and I hope you feel better soon.
04-07-2018, 07:48 AM   #445
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Hi thike1966
Welcome to the forum, like you the year I was diagnosed 2013 I had l lot of stress losing a friend to cancer and being made redundant.
I do believe it had a bearing on me being ill, I have had numerous different tests over the years because of my reactions to different meds.
The last test was for Small Bowel Bacterial overgrowth I had to take antibiotics I don't think they have made much difference as I still get bloated and constipated.
I hope you find a suitable medication to get your life back on track.
04-07-2018, 06:21 PM   #446
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Curlywurly,
I am reading a book about Microbiome written by a GI doc who promotes using probiotics to over come the loss of good bacteria that are lost with antibiotics. It takes time to rebuild, sometimes months. But it ilooks promising. My nutritionist has me on Florator and Renew Life Ultimate Flora 50 Billion.

I ran out of the Renew Life last week and cheated with Easter Candy, my craving for sweets came right back. I am waiting for more to come that just ordered. The Florastor is half price on Amazon, which is great since they retail for nearly $1 a piece and taking 6 a day adds up, 4 of the first, 2 of the renew.

The idea is get the bad bad bacteria and yeast that live in our intestines and cause the the cravings to be starved out and over taken by the good bacteria I am reintroducing after taking so many antibiotics recently and in possibly all the damage I suffered from a childhood of getting over-antibiotics because I was born way premature and had a lot of health problems. In the 70's there was no idea that you can over prescribe and now that is becoming more and more evident that we need the healthy bacteria.

The book is called the Microbiome Solution by Robynne Chutkan. Like the advice I get from my nutritionist and all that I read on this forum and hear from others, we each need to find our own way. So just consider a few months on probiotics to get your balance back with the bad guys including yeast.

Regardless, I wish you well and hope that you find a solution.
04-08-2018, 06:13 AM   #447
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I've just been diagnosed with crohns colitis at the age of 52, like others I've had issues on and off for years and finally got things sorted.
I'm still in a bit of denial as I really don't want this at this stage of my life. I am going through a divorce, was made redundant mid last year, and general stress levels have been high. Hence longer and more severe issues leading to a diagnosis, after constantly being fobbed off by my GP saying every issue I had was "stress".
Emotions are up and down, exacerbated by prednisolone.
It's hard dealing with this and living alone too, my cleaning was just not done for the past few months while I've been really sick.
I should be grateful to at least have confirmation of a diagnosis that I have been fairly suspicious of for years. I even changed my fridge over a few years ago as I was sure I was giving myself gastro because the temperature must not be right!
Anyway I think I'll be right once I adjust and once I get a treatment regimen that I am comfortable with
04-08-2018, 09:28 AM   #448
scottsma
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Stress isn't good for us crohnies but it's usually unavoidable.I hope things begin to improve for you soon.
04-09-2018, 03:49 AM   #449
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Hi Thike1966
Thanks for the info on the books I have also been reading about the Gut and how it works
it is quite interesting.
A doctor over here in England has wrote a book called The Clever Guts Diet even though it is not a diet but a new way of eating.
He talks about the gut having its own eco system and what it needs to keep healthy.
I try to eat like it says how to get more probiotics in my diet and more exercise.
I will give you the Authors name you may find the book helpful Dr Michael Mosley.
04-29-2018, 02:21 AM   #450
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rrhood and JackG,

I don't think I thanked you enough for your kind words. jackg I am inspired that you lived through the night and are doing so well.

So Thank You Thank You for the great support and advice.

rrhood, My nutritionist who works hand and hand with my doctor, doesn't like BRAT because it's not nutritional enough when you need the most. I was on it for 4 weeks and I noticed my hair got brittle. She has me put vegetable soup in blender and use that for flares. I'm on the IBD-AID diet based on the SCD diet, but more liberal in some ways, with three phases: 1) Flare, 2) Symptoms Intermittent and 3) remission/Maintenance.

Below is a link to the food list, if you hit the menu button you will find a lot of Crohns's friendly recipes. I think in my appointment next week she is going to add enzymes to my routine, along with the probiotics I currently take, which seem to help taking over the bad bacteria and yeast in my gut. My skin cleared up, no acne for the first time in 20 years. I used get a just few pimples, especially when under stress.

I'm reading The Biome Solution, where Robynne Chutkan linked bad gut yeast to acne and apparently she is right. I never knew cravings and sweet tooth's come from the bad guys in the gut. The intestines signal the brain. Many other eye opening ideas in the book as well. She is a GI doctor and stories about her patients journey to remission.

They never taught us in High School and probably didn't know how complicated the intestines are and how our biomes in the large intestine can effect us. As well, I never knew how much of the immune system is tied to our guts. I just ordered some Oregano Oil that is supposed be really good for us as anti-inflammatory and other homeopathic benefits. I do believe there much more we can do other then just rely on medication, especially dealing with the stress and depression triggers.

I love this forum and my bi-monthly support group, because speaking freely and having people with the same issues, better and worse, is liberating. Every thing I do, I clear with my nutritionist.


I stay optimistic, knowing remission is down the road and my support group is lead by a great doctor who says there a tectonic shift coming way as big or bigger than the shift Remicade started 20 years ago. So the future looks bright for all of us.

https://www.umassmed.edu/nutrition/i...-for-ibd-diet/
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