Older person with Crohns

[dee]

Seems like most people on here were recently diagnosed with Crohns and are young. I am a 57 yr. old female and have had Crohns since 1974. At that time I had surgery and took Prednisone for a short time then was in remission for 30 years. 7 years ago I got a twisted intestine probably caused from the scar tissue that built up all those years. After that I have had bleeding from an ulcerated area when my resection took place. I was on Humira for 1 year and it helped the Crohns but I had many side affects (high triglycerides, anemia, shingles, walking pneumonia) so I stopped it after a year. Then tried Imurin and it made me very ill so now I've been on Entocort for 1 year. Plus I take 6 Pentasa per day. Last December I had some very bad bleeding so the doc raised the Entocort to 9mg per day but now I'm back to 3mg per day and holding. I'm lucky that I was in remission for so long and I don't have to go to the toilet 10 times a day. I did lose weight and have some soreness but that's about it. I'm just hoping I don't get the bad bleeding again or I'm going to try Cimzia. That's my story. Looks like every case is a little different.

Dee

 

[Nancy Lee]

Hello Dee and welcome to the Crohn's Forum!

You aren't the only 'older' person on here...LOL
You can tack another 10 years on to your age and you have my age.

I was diagnosed in my 50's though in 1997.
Right now I am not doing too well and waiting for a CT Enterography scan.

Just wanted to pop in and say welcome...
I know you will like it here...plenty of people to help you out
with any questions or someone to lean on.

Welcoming hugs~Nancy

 

[xJillx]

Hi Dee! I am so happy you joined the forum! It is nice to hear from people who have managed this disease for some time - and 30 years of remission - what wonderful news to report! Gives me something to dream about.

But I am so sorry your Crohn's is acting up again. I sure hope the Pentasa can keep it under control. Do you have plans to come off the Entocort? I didn't think it was to be used as a maintenance drug due to the side effects.

I really hope you start feeling better soon and have many, many more years of blissful remission!

 

[ameslouise]

Hi Dee and welcome!

You are right that every case is a little different! As you poke around the forum you will find as many different stories as there are those of us here. But we all learn from each other and this forum is full of knowledgeable people with great advice.

We all hope and pray for 30 years of remission!

- Amy

 

[Pirate]

Hi Dee. Glad to hear you had so many years of remission. Not so glad to hear you have been doing not so great lately.
I'll be 53 on Sunday and was diagnosed at 28. I know I've had Crohns since at least 1970 as I remember my parents having to come pick me up from school because of severe stomach pain.
I hope things start looking better for you really soon and you can do another 30 yrs of remission.

 

[dee]

Entocort

xJillx you asked about coming off the Entocort. The doc says that Pentasa alone will not do the trick so it's either Entocort or go on Cimzia. I just had a bone scan and that came out well and since I don't have any bad side affects from the Entocort I can stay on it. I read on here somewhere that some guy has been on it for 7 years.

 

[Agent X20]

Hi, Dee
Looks like a few of us are in a similar situation to yourself. I'm 55 now and I was diagnosed in 1972. After the first attack at age 15-16 I was in remission for most of the time, then I had a bad patch around 1990, and again in the last 5 years or so. I'm currently on Asacol and Imuran. I'm actually leading quite a healthy lifetstyle now (foodwise) but I think I could get a bit more exercise.
Welcome to the forum

Nancy... sorry to hear you're not too well at the moment

 

[Grumbletum]

I've just been diagnosed and I'm 51. I thought it would be heart disease, diabetes or cancer that would get me as there's family history. The Crohn's kind of popped up from nowhere.
Sorry that you're having symptoms again and hope you get them under control soon. Keep well folks.

 

[micro1]

Hi Dee, Welcome to the forum, I agree that everyone with Crohns has a different symtoms, reaction and treatment that they deal with.
I am 56 year old man, who was diagnosed back in the mid 1980's and have undergone two major resections and an adhesion in the bowel and between each hospitalisation have had some periods of remission. Recently I had a horrible reaction to the imuran in the last few weeks which landed me in hospital for 2 weeks with a visit to ICU for a few days in a seriously delirious state and also ended with blood clots in the lungs. I have just been approved to start the with Humira pen injection and am concerned about the side effects as well given my imuran incident. I am still willing to try the Humira pen as I am hoping something will eventually work, I was surprised to hear you had a 30 year remission, well done, the best I have had was 7-8years and each time my symtoms returned they have been different from the first time I was diagnosed.
Can you advise whether you used the humira pen of direct infusion and any other symtoms the humira gave you, so I can be aware when I start next week.
Again welocme to the forum I have learnt a lot in the few weeks I have joined.

 

[dee]

Humira

Dear Mirco1,

I took Humira for 1 year and it healed the area that was bleeding at the time and was in remission however, since my immunities were so low I caught walking pneumonia, got shingles, high triglycerides and my bone density went way down so I had to start taking Actonel. I felt fine on Humira but got all these side affects so the doc took me off and we tried Imuran. I hated that stuff. It made me sooo sick, light headed, dizzy and throwing up. So now I'm on Entocort and do not have any side affects from it. I sure hope Humira works for you. I didn't mind the Humira and it just zapped my immune system.

 

[micro1]

Thanks Dee for the info,
I think most of the meds affect the immune system some what, I will post after I have been on the Humira for a little while to advise how things went.
Good luck with your new treatment and hope that you can go back into remission again. All the Best
Mike

 

[dee]

Doing Well

Micro1, I am doing well right now. I just hope the Entocort holds and the Crohns symptoms don't creep through.

Dee

 

[chas-chuck]

Dee,
wow glad to hear about the 30 years of being in remission. What a long run. To me that would be like hitting the lottery. I hope things improve for you and put you back to where you once were. Just wanted to let you know that i also had the same bad experiene with Imuran(light-headed, dizzy and diarreah). i quickly jumped ship. I have been on Humira for 11 months and so far so good. Keep pushing because you have just inspired me. Thank You.

chas-chuck

 

[spingirl]

Hi Dee,

I am 49 so we are not all very young! I think younger people tend to be on the internet more so perhaps that is why it seems like more young than older on here. I had a very long remission too. I say remission but I guess I just wasn't going to the bathroom a lot so I called that remission. Not the case now. I am taking Imuran (Aza). Well, after reading Mirco1's post I don't think I am going to get to sleep tonight! Blood clots in the lungs, ICU...that just really bums me out. I'm so sorry you had to go through it and I am really nervous myself now. I know everyone is different but I just wish they would find a drug to help us that doesn't harm us all at the same time!!! Nancy Lee - I hope I look half as good as you do when I am your age!!!

 

[FloridaJ]

It has been a long time since anyone posted on this topic. I was diagnosed in the late 1980's after a few years of symptoms. Back in the day when "flares" were treated to delay the next surgery. Now it is a different paradigm. I am late 50s and now facing the prospect of another surgery for chronic and active disease. It is very isolating being a middle-aged/older Crohn's sufferer as there are not many places for discussion and support. Thanks for that place!

 

[ronroush7]

Hi, Dee. I am 59. I was diagnosed with Crohns since 1990. They just recently started me back on Entocort because last month they found active disease. I have been on Cimzia, Remicade and Stelara but wonder if they are going to switch me again. Welcome and I wish you the best.