I am 60 years old and just diagnosed. Can anyone relate?

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dianasgarden

Diagnosed July, 2021. Ridiculously new at this!
Joined
Jul 28, 2021
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Location
US (east coast)
HI there,
As the title says, I am 60 years old and was just diagnosed with Crohn's Disease one month ago (although I had symptoms for some time). So far, I am just on Sulfasalazine 3 grams per day, and Imodium when I need it. It seems that most people posting on here were diagnosed at a much younger age, which is to be expected for Crohn's. I am wondering if there are others on here who can relate to being diagnosed at an older age. At my age, I am finding it hard to re-learn how and what to eat, and how to deal with the various pains and diarrhea issues. I guess I am just looking for some peers who can relate to what I am going through. Also my fecal calprotectin was normal, which from my reading, is unusual. Also, I still work full-time, and am finding it tough to deal with things at work. (Seems I always need to run to the bathroom right when I am ready to leave the house to drive to work!)

I am still quite new to all of this, and so far I have only seen the GI doctor one time since the diagnosis. And any advice and tips are appreciated. Thanks in advance!
 
Hello and welcome but sorry you have to be here.There are quite a few of us on the forum who where diagnosed later in life.I was d'xed in my early 50s,16yrs ago.I can relate to your present problems,as I find it difficult to leave the house in the mornings.Luckily, I don't work and I'm in awe of those who do.I don't want to confuse you with lots of data but if I can I will try to answer any questions you might have.Nothing is taboo on here.There will be others along soon to welcome you.Until then.just get through each day as best you can,you will have bad days but also good ones.Try not to worry or over think things.
 
Hello! I was "diagnosed" last September at age 66. I use the quotations because my case seems to be unclear. A colonoscopy and endoscopy was done after a summer of frequent digestive issues - pain, cramps, D, fatigue. Biopsies were not clear though results stated "possible Crohn's." I went on to have an enterography CT which showed inflammation in the small intestine and results stated "probable Crohn's."

I was started on mesalamine which didn't do much and then 2 rounds of budesonide which did calm things down to where I had no pain, no fatigue but still almost daily D. Had a second enterography CT 7 months later (in April) that showed much reduced inflammation. I have not been on any meds for Crohn's since April but I do take colestipol for D and that has improved dramatically. My GI is scratching her head a bit about my case so I will have another colonoscopy in Sept. to hopefully get a clearer more definitive diagnosis.

I have always had tummy troubles so have been aware of what foods cause me more difficulty though it has changed over time. High fat and fiber have never been my friends. I probably have felt the best in recent years when I ate a modified keto diet. I lost 15 pounds, had little inflammation and much more energy. Daily walks and lots of water also seem to help. Hope you continue to do well!
 
Hi Mary! Thank you so much for your reply. I will see my GI doctor soon, and I will ask about colestipol. I am glad you have had dramatic relief on colestipol, and I wish you well, in terms of clarifying your diagnosis. Diana
 
Hi rfi123158,
Thank you for the reply. Yes, I am learning to eat more of a bland diet. And high fat and fiber have never been my friend, as Mary said above. Yes, I have to accept that I have Crohn's Disease; sometimes I still can't believe it (I thought I just had lactose intolerance and irritable bowel syndrome).
I have good days and bad days - I am still trying to analyze which foods are triggering the bad days.
Glad the Humira is working for you! May you stay healthy. Thanks again for your words of wisdom, since you are two years ahead of me on this journey. Diana
 
dianasgarden said:
Hi rfi123158,
Thank you for the reply. Yes, I am learning to eat more of a bland diet. And high fat and fiber have never been my friend, as Mary said above. Yes, I have to accept that I have Crohn's Disease; sometimes I still can't believe it (I thought I just had lactose intolerance and irritable bowel syndrome).
I have good days and bad days - I am still trying to analyze which foods are triggering the bad days.
Glad the Humira is working for you! May you stay healthy. Thanks again for your words of wisdom, since you are two years ahead of me on this journey. Diana
Click to expand...
I know I may not be able to control the Crohn's Disease without the aid of drugs, but I can sure as "you know what" control my food choices and my perspective of things so I still have options regardless of what the Crohn's Disease thinks.... 🙂 Stay positive
 
I am 62 but was diagnosed 31 years ago with crohns. It has been a wild ride. Started off with salfasalzine and prednison after an emergency bowel resection because of a total blockage. Did fairly well for quite awhile after that. Had flairs on and off for 15 years treated with prednisone each time until ended up with blockage and another resection. Did real well for a few years after this resection. Then ended up with a bad flair and was put on humaria my liver numbers rose immediately but the doctor wanted me to stay on it as long as I could. I was on it 7 months. He wanted me to try something else but I wasn’t flailing and feeling well so I declined medication at that time. Changed my diet to all organic and did super for 4 years. Then September 2020 the disease reared its ugly head again. Sick again from September 2020 to March 2021 ended up at Mayo for surgery with strictureplasty and another resection. I was surprised when I came out of surgery and they told me that they did both types of surgery but I thought good the disease is gone I will do well and I did for 5 weeks. Then got the worst flair I have ever had. So far being treated with prednisone and trying to determine what other medication might work well for me. Looking at trying Entyvio I am just not certain. I really don’t want to see my liver numbers jump up like they did with humaria. I know steroids are not good to be taking long term. Any how wanted to share a bit with the original poster that if I can give any support in anyway I will.
 
Hi there, and thank you so much for sharing your story with me. It must have been so upsetting to have a bad flare so soon after the surgery. I really hope you find a new treatment plan that works well for you and keeps your liver happy, as well. Thank you for the offer of support. I"m sure I'll be relying on this forum a lot!
 
I was d'xed 15yrs ago aged 58. Everything was scarey and sometimes it still is.But you learn to read your own symptoms and it does get easier.Meds are trial and error.What suits one person will not suit another.Same with diet.
A daily diary can help.Note what you've eaten and what symptoms show up,if any.It can help when you visit the doctor or IB nurse, in case you forget to mention something.I wish you both well and hope you find something that will allow you to enjoy life without too much worry.
 
Thank you scottsma. I am hanging in there, on sulfasalazine and now a 3 month, tapering course of budesonide. The "urgency" is now nearly gone, and that has helped my quality of life so much! I think the plan is for an MRE soon and then I imagine my GI will start recommending the stronger meds, biologics and such. I do wonder how people of our age handle biologics; everything is fraught with more side effects as we get older. Any thoughts on that?
 
I am afraid to take biologics because of my experience with humira but it is all my gi offers me. He says that’s the best he can do for me. I ask about anything else and he says they don’t work as well. I am trying to research any other medications that I could suggest to him that are not biologics that I might be able to take without so many side effects. If I may ask what is MRE?
 
I think I've been pretty lucky,in fact I know I have.Although urgency is a part of my life now,it's mostly during the morning so I can plan my life around it.But being retired helps too.I take 6 mezalazine tablets daily and can take more should I need to.I also use Asacol suppositories once a day,but more if I need them. I take steroids when I have a bad flare.My calprotectin levels were 1750 last year (50-.60 is classed as normal in the UK) Personally,I'm happy to stay at this level of medication as long as it works OK for me.Many people try changing diet,but as I said,it's all trial and error,but if it works then that's great.Try not to stress out too much or look too far ahead.And be aware of less than reliable web advice.Stick with us and be safe.
 
MRE is an x-ray tube that takes pics of any part of your body that needs investigation.They slide you into it and your digestive area will show what's going on.It takes approx 30mins.You take a prep.to clean you out,the day before.If you go on "search"you will get a better explanation than I've just given you.
 
@scottsma at 1750 fecal cal did they at least scope /imaging to make sure damage wasn’t being done ? That is flare level at that high ….?
That would be conserving on damage without symptoms


MRE is magnetic resonance imaging with entography (not radiation)
Some refer to it as MRI with entography
You drink barium liquid to coat the gut
Then gallulidium/glycogen are given by IV during the MRI to stop the intestine from moving
The images tell the Gi if there is thickening (inflammation) or stricturing/obstruction etc….

CTE is similar but using a CT scan with entography
This has radiation but can be done quicker
MRE takes about an hour laying on your stomach

SBFT is a small bowel follow through
This is where they give you barium to drink and take up to 15 X-rays in a single day watching the barium go through the intestine

My kiddo was dx at age 7 (issues since birth -) now almost 18 so different end of the spectrum

depending onthe country there are other drugs other than biologics
Jak inhibitors are now in trials for crohns
As well as ozanimod is a different inhibitors that is in trials

newer biologics have different mechanisms/pathways such as entyvio or Stelara
Stelara has an extremely low level infection risk vs anti tnf
My kiddo has been on it for 4 years now
Plus another biologic and mtx
 
thanks for the info. Yes I have had many MRI and CT scans. I live in the US. It just bothers me that the GI won’t offer me anything other then biologics even when I tell him I would rather not take them.
 
I can certainly understand your reluctance to take any biologics. Nevertheless, IMO your best bets to try are either Entyvio or Stelara. They are biologics like Humira but they each act through completely different biological mechanisms than do Humira, Remicade, etc. Therefore they are far less likely to induce the the same rise in liver numbers and general bad expereince that Humira produced.

There are no guarantees of course, but given how severe your disease has been, I think it's worth a shot. You've got to find something to get your Crohn's under control, and as you know, predisone is not a long-term answer.
 
HI everyone,
Just thought I would add some details about my story. In case anyone has comments, or in case anyone else can relate.
My story is a bit strange, I think. (or maybe not?) I first saw a GI doctor about 8 years ago, in my early 50s, after having some intermittent diarrhea and occasional "accidents". I had a colonoscopy and biopsies, and various tests, and was only diagnosed as having lactose intolerance at that time. And for some time after that, I did well just avoiding dairy products or taking lactase pills with dairy.

However, gradually I started to notice that more and more food were causing me to have diarrhea: high fiber foods, whole wheat, certain fruits and vegetables. So I figured I was now having irritable bowel syndrome, and I put myself on a low FODMAP diet, which did seem to help.

Then, as the pandemic hit, I started thinking, "It's a good thing that I am working from home now, since I have to run to the bathroom so often, especially in the morning". But eventually (after a couple accidents), and with my diet becoming more and more restricted, I admitted to myself that it was time to go back to the GI doctor. And this time the biopsies from the colonoscopy revealed abscesses and ulcers in the ileocecal valve, and I was diagnosed with Crohn's. My bloodwork and fecal calprotectin are normal. I have never had blood in my stool, or weight loss (in fact I could stand to lose some weight) and until 3 months ago, I did not have any pain. I now have intermittent pain/ cramps in my right lower abdomen (very low down, nearly in my groin area). I am now taking sulfasalazine and am on a 3 month, tapering course of budesonide.

I also "might" have rheumatoid arthritis. I was having joint pains a few years ago. And I have the markers for it (RF and CCP positive). However, I have not had joint pains for a long time.

So that is my story. I am left wondering if I have really had undiagnosed Crohn's for the last ten years! I guess I will never know if I've had Crohn's disease or if it really was just lactose intolerance and IBS at first.
 
Things to know spondyloarthritis tends to come with Crohn’s disease some have active arthritis with active crohns
Others have arthritis that is independent of crohns flares -my child has the independent kind

https://spondylitis.org/about-spondylitis/types-of-spondylitis/enteropathic-arthritis/
Please see a rheumatologist who is familiar with spondyloarthritis

second
Sulfanazine/5-ASA are no longer recommended as monotherapy for Crohn’s disease by the Cochran report
It acts like a cream and treats just the top layer of the intestine to keep inflammation down on the surface -which is wonderful if you have ulcerative colitis since only the top layer is affect
But in crohns the entire thickness of the intestine is affected -this can leave inflammation to simmer underneath or be under treated …..

so something to discuss with your docs

also remember not all side effects are a given
They are just a possibility
Even drugs that seem benign ( Tylenol anyone ) has a long list of potential side effects which can be ugly

we tend to go with what meds actually work and keep my kiddos intestine pink /healthy -no inflammation as well as treat his other extra intestinal manifestations like arthritis

what we choose is mot the same as what his body choses to respond well too.

this is a journey
There is no right or wrong path /drug
It’s all in what your body choses to allow healing to happen not necessarily first choices

the first year or two is the hardest after dx
Give yourself time to learn and the docs time to learn what works best for you

Good luck 🍀
 
Thanks for all the info M.L.P. I was aware that My MRE answer wasn't up to scratch that's why I recommended a search.I was tired,but that's not an excuse to be sloppy. I'm not sure whether or not I was scoped when my calprotectin levels where high but a course of steroids cleared it up then.I will be sure to be more attentive in the future.Hubby's had cancer and a heart attack these last two years and things get stressy sometimes.
 
Hugs to you @scottsma
Completely understand
Some of my responses especially when I am tired 🥱….well …
Hope things improve with your DH
Remember to take some time to yourself
Oxygen mask first on you .so you then have the ability to care for others ;)
Easier said then done I know
 
dianasgarden said:
HI there,
As the title says, I am 60 years old and was just diagnosed with Crohn's Disease one month ago (although I had symptoms for some time). So far, I am just on Sulfasalazine 3 grams per day, and Imodium when I need it. It seems that most people posting on here were diagnosed at a much younger age, which is to be expected for Crohn's. I am wondering if there are others on here who can relate to being diagnosed at an older age. At my age, I am finding it hard to re-learn how and what to eat, and how to deal with the various pains and diarrhea issues. I guess I am just looking for some peers who can relate to what I am going through. Also my fecal calprotectin was normal, which from my reading, is unusual. Also, I still work full-time, and am finding it tough to deal with things at work. (Seems I always need to run to the bathroom right when I am ready to leave the house to drive to work!)

I am still quite new to all of this, and so far I have only seen the GI doctor one time since the diagnosis. And any advice and tips are appreciated. Thanks in advance!
Click to expand...

Well I can relate since I was diagnosed earlier this year, although I have been suffering from it and misdiagnosed as IBS FOR the last 25 years. And I am 58 years old.
25 years ago I took Sulfazalacine, Asacol, Pentasa, and they did nothing to me. Prednisone was the only thing that worked.
Fast forward they had to remove my sigmoid because it bursted (supposedly I had diverticulitis) I think it was Crohns. Anyway at the anastomosis site I had an stricture and after my GI diagnosing me with Crohns earlier this year, he told me that I had to take Remicade for him to try to do a balloon dilation.
I was afraid of Remicade but I got the infusions, I really needed the balloon dilation to get rid of the blockages.
Well the balloon dilation worked, no more obstructions!!!
Well and the Remicade worked too, but it took it a looong time for it to work. My Calprotectin went from 500 to 280 to 85 finally this week after 6 months on Remicade......so far no antibodies.
The only thing that worries me is that the Remicade level was 9 just 3 days before getting my last infusion.
Isn't that too high?
I hope the Gi will reduce the dose. And my neutrophils were low and the leukocytes high, maybe because of the Remicade I hope. I have my GI appointment next week.
So far a success story!!!!...no more obstructions, no more intestinal problems.
Incredible.
 
9 is a great level. 4 to 7 is what they usually aspire to. Around 10 is good. Some people have levels in the teens before their infusion. My son was at 20 but was at every 4 weeks and now has been pushed to every 8 weeks. At one point, he couldn't even reach 1, so you are doing great with this level. It's where you want to be.
 
As Jo-mom says, 9 is not too high. It's fine. But even if it were on the high side that would very likely still be okay, because the inherent toxicity of the Remicade drug is quite low. Thus, the Remicade levels can be quite high with no ill effects. Far better to have it to too high than too low.

Remicade too low = high risk of disease relapse.
 
Hi there, I was originally diagnosed with Diverticulitis and a hiatus hernia. Different meds for both.
Was only diagnosed with Crohns in my later years too when I began suffering severe tummy pain!
I am presently on the meds you are on , Salofalk 3gr daily. I am doing very well on that, off Steroids too. Yes, I have to give myself two hours in the morning before going out as I have to toilet before and after eating a light breakfast: a poached egg or banana. So you do learn to manage it.
I was previously on all those other infusion treatments people mention, but eventually suffered side effects requiring further medical treatment.
So I hope you do well on your present meds. Avoid foods that encourage it, for me that is creamy , rich sauces and gravies. Keep well.
 
Thanks for replying! Good to know that we can learn to manage it over time. Glad to know that you are doing well, it seems, without having to take infusions, at this point. Interesting that you identify sauces and gravies as being problematic for you. Just curious, do you think the problem is the dairy in the creamy sauces, or the spices, or the high fat content? (or maybe it is a combination of all of those things). I am lactose intolerant and follow a mostly low FODMAP diet, so most sauces are out for me, anyway. I do use low-FODMAP ketchups and reduced fat mayonnaise, as condiments, though. Thanks, again!
 
Hi there,
I feel it is just the richness and consistency of sauces in cooking. Macaroni and cheese, my own lovely grilled in the oven one, sets me off. I do eat little portions due to the hernia, and I am o.k. with condiments. I did live through a very difficult time with infusions. and steroids. Hospitalised, and having to see another Consultant after side effects of coming off Steroids!
So you can get there, but it takes time. We are all individuals in our living with this illness!!!
I am currently on Salofalk 3grms. daily No steroids, no infusions.
I hope this has helped and you are feeling o.k. just now. Best wishes.
 
Honey said:
Hi there,
I feel it is just the richness and consistency of sauces in cooking. Macaroni and cheese, my own lovely grilled in the oven one, sets me off.
Click to expand...

Thank you so much for the kind posts above! Funny that you mentioned macaroni and cheese. That is what I am going to eat for dinner tonight!
My husband makes me a modified version of it using aged cheddar cheese, and I tolerate it very well.
Have a nice evening. Wishing you well!
 
dianasgarden said:
HI there,
As the title says, I am 60 years old and was just diagnosed with Crohn's Disease one month ago (although I had symptoms for some time). So far, I am just on Sulfasalazine 3 grams per day, and Imodium when I need it. It seems that most people posting on here were diagnosed at a much younger age, which is to be expected for Crohn's. I am wondering if there are others on here who can relate to being diagnosed at an older age. At my age, I am finding it hard to re-learn how and what to eat, and how to deal with the various pains and diarrhea issues. I guess I am just looking for some peers who can relate to what I am going through. Also my fecal calprotectin was normal, which from my reading, is unusual. Also, I still work full-time, and am finding it tough to deal with things at work. (Seems I always need to run to the bathroom right when I am ready to leave the house to drive to work!)

I am still quite new to all of this, and so far I have only seen the GI doctor one time since the diagnosis. And any advice and tips are appreciated. Thanks in advance!
Click to expand...
Hi there, and welcome to this forum. I too was diagnosed later in life, so it can happen. My Consultant said it went back years, diagnosed as Diverticulitis, plus Hiatus hernia years before! Only when I began to have pain and bouts of Diarr...after tests, was told it was Crohns.
I have been on several treatments since, including infusions, and I am now doing well on Salofalk crystals daily. Each person is unique in what they respond to in this illness.
I hope you are well and finding what foods can trigger it, at times. For me, that is rich, creamy sauces. Stay well and best wishes.
 
Hi,
I had 6 abscesses and fistulas in as many years in my late 20s, every test possible and suspected crohns or celiac and .... nothing.
here I am at 55 and have just had another abscess, have a fistula and I am heading in for another colonoscopy and gastroscopy this week. You guys are giving me hope that a diagnoses might provide me with some hope and relief from the symptoms. trying to leave the house and running back to the loo ...can sooooo relate.
 
Jacamanda said:
Hi,
I had 6 abscesses and fistulas in as many years in my late 20s, every test possible and suspected crohns or celiac and .... nothing.
here I am at 55 and have just had another abscess, have a fistula and I am heading in for another colonoscopy and gastroscopy this week. You guys are giving me hope that a diagnoses might provide me with some hope and relief from the symptoms. trying to leave the house and running back to the loo ...can sooooo relate.
Click to expand...

Oh wow, hopefully 25 or so years later the diagnostic testing will be more helpful. Keep us posted, and feel better!
 
Jacamanda said:
Hi,
I had 6 abscesses and fistulas in as many years in my late 20s, every test possible and suspected crohns or celiac and .... nothing.
here I am at 55 and have just had another abscess, have a fistula and I am heading in for another colonoscopy and gastroscopy this week. You guys are giving me hope that a diagnoses might provide me with some hope and relief from the symptoms. trying to leave the house and running back to the loo ...can sooooo relate.
Click to expand...
Hi there, Jacamanda
Sorry to hear you have had so many problems. I hope all goes well for you and you get better soon.
Best wishes.
 
Hi Jacamanda,

I'm sorry to hear of the trouble. I have experience in these unfortunate conditions. I wish you strength and hope. Talk to me any time... As the others can tell you, I'm not easily shocked and am certainly not shy. I wish you the very best.

-C
 
dianasgarden said:
HI there,
As the title says, I am 60 years old and was just diagnosed with Crohn's Disease one month ago (although I had symptoms for some time). So far, I am just on Sulfasalazine 3 grams per day, and Imodium when I need it. It seems that most people posting on here were diagnosed at a much younger age, which is to be expected for Crohn's. I am wondering if there are others on here who can relate to being diagnosed at an older age. At my age, I am finding it hard to re-learn how and what to eat, and how to deal with the various pains and diarrhea issues. I guess I am just looking for some peers who can relate to what I am going through. Also my fecal calprotectin was normal, which from my reading, is unusual. Also, I still work full-time, and am finding it tough to deal with things at work. (Seems I always need to run to the bathroom right when I am ready to leave the house to drive to work!)

I am still quite new to all of this, and so far I have only seen the GI doctor one time since the diagnosis. And any advice and tips are appreciated. Thanks in advance!
Click to expand...
dianasgarden said:
HI there,
As the title says, I am 60 years old and was just diagnosed with Crohn's Disease one month ago (although I had symptoms for some time). So far, I am just on Sulfasalazine 3 grams per day, and Imodium when I need it. It seems that most people posting on here were diagnosed at a much younger age, which is to be expected for Crohn's. I am wondering if there are others on here who can relate to being diagnosed at an older age. At my age, I am finding it hard to re-learn how and what to eat, and how to deal with the various pains and diarrhea issues. I guess I am just looking for some peers who can relate to what I am going through. Also my fecal calprotectin was normal, which from my reading, is unusual. Also, I still work full-time, and am finding it tough to deal with things at work. (Seems I always need to run to the bathroom right when I am ready to leave the house to drive to work!)

I am still quite new to all of this, and so far I have only seen the GI doctor one time since the diagnosis. And any advice and tips are appreciated. Thanks in advance!
Click to expand...


I was diagnosed at age 60 also, although I had my first symptoms at 15. I began to seek care for all of it at the age of 21, while my husband was in the military. Over that period of time, I saw doctor after doctor after doctor. I was "advised" some of the most unimaginable things. One told me that I was just taking too many laxatives...uhhh...I'm trying to STOP diarrhea, not CAUSE IT!! Another told me that I just must hate sex. I'm still shaking my head over that one and it occurred 30 years ago! All of these were board certified gastros. Then I found my wonderful, brainiac specialist who knew just from my medical history that I have Crohn's. He confirmed it with a capsule endoscopy. Sometimes the road to diagnosis is long and painful and cumbersome, and although none of us want to hear the confirmation that we have this disease, it is worse to go through all of the added pain and misery of misdiagnoses and quackery.
 
It began with TERRIBLE stomach pain. The usual Crohn's symptoms...cramping, diarrhea quite frequently, urgency. Not fun for any of us!
 

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