Want to connect with people Diagnosed with Crohn's at an older age

Posted by gshlager @gshlager, May 10, 2023

I was diagnosed with colitis during a screening colonoscopy and my GI seems fairly convinced based on the location of the inflammation and the pathology reports that is Crohns.

I had what I would describe as mild symptoms back in November before the colonoscopy which consisted of moderate cramping and bloating, intolerance to certain food, and mild constipation. I did not have any diarrhea.

I changed my diet and began taking supplements (omega3, probiotic, curcumin, etc.) and the issues seemed to resolved after about 3 weeks.

Since then I have had isolated flare ups which usually consist on mild cramping and in some cases moderate back and hip pain (not sure if this is crohns or just ordinary aches and pains of being 61), and they have mostly resolved within a few days.

I have a follow up appointment with my GI at the end of the month, and he instructed me to have a calprotectin stool test to gauge the level of inflamation (my understanding anyway).

I am interested in knowing the experience of others who have been diagnosed with crohns at an older age, and also what types of medications are used for those with mild to moderate symptoms.

Thanks you ....

Interested in more discussions like this? Go to the Digestive Health Support Group.

I am very sorry for you Crohn’s is not been easy to deal at 62 and now 64 I have a great doctor . I am surprised you can have curcumin because for me aggravates even more my diarrhea.
I am having infusions which since last year was working great but my doctor and I have made a decision to try something different with less fatigue and didn’t work at all and got me off of remission. Went back to Remicade infusion but still out of remission, end up at ER twice after both infusions . Now I am even afraid to eat in special when I am working because the bathrooms is very far away and urgency is a nerve wracking.
Crohn’s disease is no joke and hard causing depression and anxiety over urgencies .
Glad your case is mild mine isn’t maybe stress of life , work and elderly husband and mother . My doctor is awesome and IBD NP is a sweet lady helps me a lot too .
I am very sensitive to a lots of food in special if they have a hint of spice etc my food must be plain , little salt , very small portions , no salads or salad dressing. Very hard to eat when it is so many restrictions. Avocado is good . Good luck and hope your Crohn’s continue to be mild , mine isn’t and it is located at end of my small intestine beginning of my colon .

REPLY

@gshlager, I modified the title of your discussion to reflect the connection you'd like to make. I hope you also saw the reply from @lucismith

Gshlager, while the diagnosis of Crohn's is new for you, have you had digestive issues for a long time. What led to your having a colonoscopy?

REPLY

@colleenyoung ,

Thanks for the reply.

Back in November I was having mild to moderate cramping and I saw a bit of blood when I wiped which really freaked me out, so I called my primary and she ordered a occult fecal test which came back negative but she still recommended that I have a colonoscopy (I had done Cologuard in the past), and since it was considered a preventative screening it was not scheduled until the end of March.

The colonoscopy detected one small polyp which was benign, diverticulitis (not active), and colitis of the large intestine.

My GI doctor suspected Crohns, and ordered additional tests, include calprotectin stool test and a complete GI blood panel, and scheduled a follow up appointment for the end of this month.

The tests appear to have confirmed Crohns (I read test results on the patient portal), and my doctor suggested that he may prescribe mesalamin.

I have been fortunate so far in that my symptoms have been mild (cramping, mild constipation, small amounts of blood occasionally), and I have committed to making life style changes in terms of diet, exercise, supplements, and stress management.

I'm hoping that the combination of lifestyle changes and medication will keep the disease from progressing.

REPLY
@colleenyoung

@gshlager, I modified the title of your discussion to reflect the connection you'd like to make. I hope you also saw the reply from @lucismith

Gshlager, while the diagnosis of Crohn's is new for you, have you had digestive issues for a long time. What led to your having a colonoscopy?

Jump to this post

I have had many Gastro issues , ulcers , diverticulitis twice which results in colon resection, I have IBS , and now Crohn’s .
My former gastro did only the sigmoid which was not precise diagnosis. Once I was recommended by another doctor to go to actual gastro that is absolutely awesome doctor , he said full colonoscopy is required to do a precise diagnosis and that was done and biopsy both confirmed Crohn’s disease which has been a nightmare for quite several years that went without diagnosis.
Also I had 5 times C Diff bacteria which is very contagious and dangerous in my case was all severe case .
I have reflux, I also have gastroparesis which is not easy sometimes.
I don’t have appetite and eat very small portions with caution because I don’t ever know what is going to cause problems with all my issues .
So you can see I have a long list and lots of experience in digestive and abdomen problems .

REPLY

I have forgotten to say that I had also 2 small intestine obstruction . So many issues that makes me forget about some that happened in the past . Also I have a syndrome of the burning tongue totally nightmare.

REPLY

I had a routine regular 5 year colonoscopy and they found ulcers in my intestine. I took mild steroids for a month and had another colonoscopy. The ulcers were gone but then my gastro said I had Chrons disease. I had not really had stomach problems before this began and I just have occasional cramping which is mild and I take dicyclomine and it works. I’m just not sure what to expect and not sure how she diagnosed Chrons with no stomach problems. I am now modifying my diet but all she said was cut out red meat, which I didn’t eat much of anyway. I’m 72 and otherwise pretty fit. What can I expect to happen)

REPLY
@lucismith

I am very sorry for you Crohn’s is not been easy to deal at 62 and now 64 I have a great doctor . I am surprised you can have curcumin because for me aggravates even more my diarrhea.
I am having infusions which since last year was working great but my doctor and I have made a decision to try something different with less fatigue and didn’t work at all and got me off of remission. Went back to Remicade infusion but still out of remission, end up at ER twice after both infusions . Now I am even afraid to eat in special when I am working because the bathrooms is very far away and urgency is a nerve wracking.
Crohn’s disease is no joke and hard causing depression and anxiety over urgencies .
Glad your case is mild mine isn’t maybe stress of life , work and elderly husband and mother . My doctor is awesome and IBD NP is a sweet lady helps me a lot too .
I am very sensitive to a lots of food in special if they have a hint of spice etc my food must be plain , little salt , very small portions , no salads or salad dressing. Very hard to eat when it is so many restrictions. Avocado is good . Good luck and hope your Crohn’s continue to be mild , mine isn’t and it is located at end of my small intestine beginning of my colon .

Jump to this post

Hello, I’m new on here, and very grateful The Mayo Clinic has this site to connect and get informed by others with the same horrible condition.
The reason I’m responding to your comment is because of the age thing, I am 67 years old and I got this horrible disease Crohn’s over a year ago.
It’s a very lonely, embarrassing disease. Especially when your entire family turns their back on you.
I look forward to learning more about this horrible disease that is affected so many of us.

REPLY

I am new to this site. And I am very thankful to the Mayo Clinic for this to bring people and information together.
Knowledge is power.
Over a year ago, I felt something very wrong going on inside me, I had no clue what it was, I told my niece I believe I have an auto immune disorder. At that time I said that I had no clue what an auto immune disorder even was, and I don’t know where I came up with that.
Things progress.
I am 67 years old now.
So for the past year I have seen 7 doctors, 2 were specialist, a neurologist, and a hand specialist. Yes, I know that has nothing to do with Crohn’s. That’s where my symptoms began. I told them all about my horrible pain in my hands, fingers arms, shoulders, most of all my stomach my lower guts. I told them why do I have horrible diarrhea 24 seven nonstop!? I also had these strange scabs I would wake up with, for no reason. They were all over me mostly my lower legs, arms and back. Then I started getting them on my face in my ears. Even my nose this is what the doctor told me my diarrhea was my imagination and I had bedbugs. Well, after almost 8 months now I still have diarrhea, Horrible pain, And absolutely no doctor to help me. So I had to do my own research I had to be my own doctor I turned to The Mayo Clinic. that’s where I learned what my condition was. Every doctor I saw thought I was wanting opioids drugs. They said we don’t treat pain. I said then why are you a doctor? Who do you see when you’re in pain? If not a doctor? Do I go on the streets? Do I go on the Internet? Where do I find Help for my pain? It’s not mild pain. It’s horrific pain nonstop!
I have never been one to join any kind of support group.
Always thought it was for people that sit around and feel sorry for themselves. And others feed on it.
But this is an awesome group, and I am very grateful to be apart!
My entire family has turned their backs on me. I am in this alone. I had spent a year reading and researching. I know what I have and I know I need to see a specialist, For IBD Crohn’s disease. I also have Peripheral Neuropathy
Peripheral Hyper sensitization. Of which are also horrible.. I no longer have the use with my left hand or fingers. My right hand is catching up with my left quickly. There is no relief whatsoever. There is no medication. There is no rubs there is no treatment. There is only horrible horrific pain 24/7. I was wondering if anyone else has also gotten these neuropathy with the Crohn’s disease? I don’t know if this is correct, but I did read Crohn’s brings on these neuropathy’s?
So yesterday I had an appointment with another doctor, I did not have much hope for this appointment I almost did not go because so far I’ve been told all this is all in my head, and I’m pretty sure it’s not because it’s coming out of me constantly and that is not my head. I have lost 60 pounds in eight months food has become my enemy. I can barely eat anything I put in it comes right back out I’m afraid to eat I’m afraid to drink I can’t stand the pain I have slept on garbage bags to protect bedding. This is horrible ! Especially if you have to go through this alone!
The doctor I saw she was very young and I thought oh no, this isn’t gonna be good.
And then hallelujah! I could not believe how knowledgeable she was about this disease, and she truly was the only doctor that listened to me, and didn’t tell me it was all in my head. I told her about the specialist that I need to see at Swedish Medical Center, in Seattle, she gave me my referral my much needed referral that I’ve been trying to get for over a year! I told her she is now my forever regular doctor primary care.
If it wasn’t for The Mayo Clinic I wouldn’t even have a clue to this day. I am grateful and thankful for this site and the people that are on here and understand this horrible horrific extremely painful endless painful disease!

Thanks so much sorry it was so long

REPLY
@reno10

Hello, I’m new on here, and very grateful The Mayo Clinic has this site to connect and get informed by others with the same horrible condition.
The reason I’m responding to your comment is because of the age thing, I am 67 years old and I got this horrible disease Crohn’s over a year ago.
It’s a very lonely, embarrassing disease. Especially when your entire family turns their back on you.
I look forward to learning more about this horrible disease that is affected so many of us.

Jump to this post

I have learn recently when I was signing up to a trial research for new medication for Crohns that this disease also cause join pain , and lots of other parts of your body .
My gastro is excellent suggesting other meds and the last one was Rinvoq because I am very sensitive to side effects after my 3rd bottle I was recommended to stop , my doctor was disappointed but I could tell the difference no urgencies , no diarrhea, and last January 23rd I went to full colonoscopy which confirmed what I had in my heart my Crohns was finally quiet , and I am no longer taking any medication at all .
My life was upside down wi the Crohns stress was at high level which makes even worse for the disease.
I am a true believer that JESUS can and will heal so after lots of prayers , tears to be delivered from I have finally at terms that my prayers and decision to change my lifestyle, letting go of things that isn’t important in life , taking different approaches to daily activities etc caring for my 97 years old mother , my husband 87 , so at 65 I am feeling good about my changes and blessings.
Last Saturday I began to bleed a lot which results in 2 trips to ER and end up at hospital until yesterday after my gastro that was at the hospital required just a sigmoidoscopy confirmed again my Crohns is just well as could be , and my bleeding stoped and was caused by diverticulitis but I am home recovering.
So I would recommend talk to your doctor about this medication and give a try , Remicade infusions was very good at the beginning as well .
Please check your emotional health and make changes on the outlook of life what is more important, food is another thing to watch which triggers your Crohns , I was recommended by Crohns NP to take Vitamin D3 , B12 and gummies multi vitamins forever thing due to where my Crohns is and lack of nutrition enough in my body through food intake .
Out lives is very important we are the only ones that can make changes I did I am very happy .
Hope the best and don’t allow the disease to take over your life ! Luci .

REPLY
@lucismith

I have learn recently when I was signing up to a trial research for new medication for Crohns that this disease also cause join pain , and lots of other parts of your body .
My gastro is excellent suggesting other meds and the last one was Rinvoq because I am very sensitive to side effects after my 3rd bottle I was recommended to stop , my doctor was disappointed but I could tell the difference no urgencies , no diarrhea, and last January 23rd I went to full colonoscopy which confirmed what I had in my heart my Crohns was finally quiet , and I am no longer taking any medication at all .
My life was upside down wi the Crohns stress was at high level which makes even worse for the disease.
I am a true believer that JESUS can and will heal so after lots of prayers , tears to be delivered from I have finally at terms that my prayers and decision to change my lifestyle, letting go of things that isn’t important in life , taking different approaches to daily activities etc caring for my 97 years old mother , my husband 87 , so at 65 I am feeling good about my changes and blessings.
Last Saturday I began to bleed a lot which results in 2 trips to ER and end up at hospital until yesterday after my gastro that was at the hospital required just a sigmoidoscopy confirmed again my Crohns is just well as could be , and my bleeding stoped and was caused by diverticulitis but I am home recovering.
So I would recommend talk to your doctor about this medication and give a try , Remicade infusions was very good at the beginning as well .
Please check your emotional health and make changes on the outlook of life what is more important, food is another thing to watch which triggers your Crohns , I was recommended by Crohns NP to take Vitamin D3 , B12 and gummies multi vitamins forever thing due to where my Crohns is and lack of nutrition enough in my body through food intake .
Out lives is very important we are the only ones that can make changes I did I am very happy .
Hope the best and don’t allow the disease to take over your life ! Luci .

Jump to this post

Thank you very much for your thoughtful reply. Even though I don’t have a support system to speak of, I am not sad, nor have depression..what I do feel is more anger at all the doctors, and all the trips to the ER, and was told it was all in my head that there was nothing wrong with me. Well, I knew there was something very wrong with me, and I don’t understand how a person could be so sick and looks so sick and actually have diarrhea on the bed in the ER three times, and the ER doctor told me my diarrhea was my imagination, And I should go to Walmart and buy Pepto-Bismol. Because my diarrhea he says that is my imagination will be gone in a couple days. I said well I’ve had it for over six months now. Then he told me well. Walmart has everything the hospital has on their shelves.
So I told him we’re done here. I got myself cleaned up and dressed, walking out of ER room. He stops me at the door and says I would like to get a stool sample from you.. I said great. My imaginary diarrhea is right there on that very uncomfortable cot you had me lay on for 3 1/2 hours, so help yourself.
Another doctor I saw at the same healthcare facility (Kadlec) tri-Cities, Washington, says to me did you just make all that up to impress me?
I could not believe all the strange, unprofessional and ignorant things all these 7 doctors said to me! I lived in Seattle for 35 years. I didn’t go to the doctor very often I never have but when I did, I have never been treated like that by a doctor before in my life until I came here to the Tri-Cities Washington state.
The strangest thing about this healthcare facility and hospital of Kadlec, they would not help me at all.
But then I started getting phone calls from them. They wanted to give me a blood transfusion. That really bothered me. I didn’t need a blood transfusion for any reason whatsoever. They kept trying to talk me into agreeing to sign their papers of having a blood transfusion. I said you people wanna give me a blood transfusion, but you will not help me with diarrhea or pain that I’m having that makes no sense at all. This bothered me and I sent them to their administration, office, that Absolutely no way is any doctor or any healthcare person affiliated with Kadlec is ever allowed to touch me in any way, shape or form, even if I am unconscious I told them I do not trust you people there’s something very very wrong with you! You make no sense! I absolutely refuse treatment from Kadlec medical center.

But what I have learned about my crohn’s disease, is I trust when my body craves something as far as food goes.. foods I never really cared for or ate before, I am now eating and they taste good to me.
Also, the things they say, you should avoid, don’t bother me. I also know Crohn’s is different for everybody. So you pretty much have to use your own good judgment and common sense.

Again, thank you for your input and information, I look forward to learning more from you and others as well!

Take care,
God bless

REPLY
Please sign in or register to post a reply.