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

Colleen, this is my first time using this site, I can't tell if your comment was meant for me? I have not had digestive issue, just periodic ER visits, over the year, for what turned out to be Constipation. Last June I had severe upper and lower stomach pains that put me in the ER, the CT scan showed enough evidence that I needed a Gasto to do a Colonoscopy. In turn that pathology report was Crohn's, which of course, I frantically denied!! I don't have diarrhea, which most people complain of. What's confusing me is, not all symptoms are the same? I haven't had a flare up since June, but I can feel strangeness in my gut and it hurts when pressed on, and as thin as I am, my stomach stays puffy.

Wow, my Gastro, after telling me that if I didn't choose one of the 3 options (infusion, shots, meds) I would DIE. What he didn't tell me is there is a list of foods to be cautious of?? I'm reading that most of the group has diarrhea, I don't, but I have been constipated most of my life until I went on Miralax daily. And as he gave me my subtle diagnosis, he told me to go off my arthritis meds asap! So now I have joint pain and stomach issues. This is like a double edged sword! Oh and best of all, when I had my routine colonoscopy 7 years ago, Doc said I never needed another one as long as I lived. Fast forward 7 years and I'm told to get one, my Gastro doc of 35 years had retired 2 weeks prior and I was give this new doc with no bedside, matter of fact manners!

I also was diagnosed with Crohn's late in life. Age 69 at the time. My Colo/Rectal Surgeon stated this is becoming common in recent years. I take Stelara every 8 weeks by sub-Q injection. I can't report having any side effects after 5 years.

Well, I did actually last Thursday. I almost didn’t go to the appointment because of what I have been through in the last year with doctors or so-called doctors.
She was amazing. She actually listened to me and she gave me my much needed referral.
Thanks again take care

Hope you will be able to find a good caring doctor soon .
Luci

I am with you I can’t take doctors without bedside manner, and don’t believe what we are saying to them .
Diarrhea is real not in the person’s mind this is totally absurd .
They have Doctors and someone that just have the md at end of their names but means nothing .
Hopefully you will feel better and find a good real doctor .
Luci .

Luci,
Please don’t kill me for my complete and utter incompetence and trying to send you a message. I wanted to just thank you for your kind message. You sent me and I screwed up and sent it to myself. I tried everything. Nothing I did worked so I took pictures of it and sent it that way. So sorry I’m so sorry.
Thanks again take care

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

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 .

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