Introducing myself

[lsilver212]

I'm 62 (emotionally, more like 14) and was diagnosed with Crohn's disease when I had my first colonoscopy about eight years ago. Last year another colonoscopy revealed I also had Ulcerative Colitis. I had my test at the same facility that killed Joan Rivers, so I will be looking for another location next time. I am currently taking only Llialda. I also have skeletal & muscular issues stemming from a Harrington Rod placed during Scoliosis surgery in 1979.

I get cramps often right after eating, and suffer frequent trips to the bathroom, especially in the morning, sometimes late in the evening. I love food, so limiting my diet is a challenge that I often don't meet. Once or twice a month I go through a few days of total exhaustion, napping for hours during the day which I have never done before. At the same time I can experience nausea and headaches. Some MD's insist that it's my cervical stenosis that causes these headaches/nausea, some MD's say it is the Crohn's.

I'd love to hear from anyone in a similar situation (not the scoliosis, of course) who can tell me about their disease progression, as mine seems to be getting very slowly worse over time. I'd love to hear from anyone, actually, who received their diagnosis late in life and wants to share their story.

Thanks

 

[scottsma]

Hello and welcome.Sorry you have to be here at all ,but it's a great forum for support,advice and friendship.You IBD story sounds similar to mine.I was dx'd in my 50s with proctitis and have managed reasonably well on maintenance meds. (asacol supps and loperamide (to control urgency).After a colonoscopy in Sept. and a fecal calprotectin test in Jan. which showed raised levels,I'm going for an MRI scan tomorrow.It seems inflammation has spread from my lower bowel to my small bowel.But it has taken quite a few years,so I count myself fortunate.There will be someone along soon to welcome you,different time zones mean it might be an hour or two.Diet can help,but it's different for all of us.You'll hear that often on the forum.Feel better soon.

 

[araceli]

Hello and welcome. Sorry you are not feeling well. May I ask you how often you have blood tests? Any Sedation or Faecal Calprotectine tests done lately? It may be that your medicine is not working any more. Everybody is different, so disease progression varies a lot. I guess it depends in part on how well the disease is controlled. I hope you feel better soon.

 

[Lady Organic]

Hi and welcome. I 'd like to know if your current doctors changed your diagnosis to UC over CD, or he clearly stated you had both diseases?
Lialda can be first step in recto-colitis. Since you still experience symptoms, the doctor could either increase your dosing if its not at maximum already, rectal suppositaries or enemas of this same medication can also be given. The fallowing step could be Sulfasalazine. Also steroid rectal foam can help. Ive been there, but these treatments failed for me, despite initial positive response for a couple of weeks. I wish I had tried the combination of both pills and enemas during my first years, but my first GI did not suggest them and I didnt know of their existance back then... I had to resort to oral steroids on several occasions and then finally be on stronger meds to reach full remission.

 

[dave13]

Hello and let me offer my welcome to the forum.I was diagnosed at the age of 50 a little over a year ago.There are quite a few of us here on the forum.Here is a support group for those diagnosed at 50 and over. http://www.crohnsforum.com/showthread.php?t=60132. Perhaps you have already checked it out,if not it is worth a visit.

http://www.crohnsforum.com/wiki/Fecal-Calprotectin. Here is a wiki link to the fecal calprotectin test Scotsma and araceli mentioned.I figure it would be better to link it than just repeat information.You may find something I might not mention.There is another test,a blood test,called CRP(C-reactive protein)test.

The important difference is the CRP measures inflammation in your entire body.Your other health issues,non IBD related,could affect the results.

Have you had any blood work to check B-12 and D recently? D can be a problem,especially for those of us in Winter climates with little sun.

I would urge you to bring any concerns to your GI.Perhaps you could write questions down as they come to you and you would have a list for the next time you talk.I see my GI and colorectal surgeon every three months.

Feel free to contact me.

 

[wall2ka]

I to am new to the forum as well, I am looking for support along with any friendly advise you have to offer. I am 46, but I was diagnosed with Crohns in 1995, I spent 6 months in the hospital as the drs tried to figure out just what was trying to kill me. Finally after an exploratory surgery and colon scope they finally had a diagnoses, Crohn's! No one at that time new much about the disease and it was hard to find a local pcp willing to see me. So I can honestly say it has really been a hard journey for me and my family. I have had a bowel resection, along with removing portions of my large and small intestines. I had a period of remission of about 8 years. but I still suffered with auto bowel empting. In 2005 I began to have more sever symptoms, extreme pain, bloating, fatigue, depression, internal and rectal bleeding, weight loss and dehydration. I was admitted to the hospital once again with a two week stay. The dr at that time started the Remicade, flagy, predisone, pentasa, nexium, and vitamins and diet of soft bland foods. After about 2 years I started Humira in place of the Remicade, I seen little to no improvement, continued to have all the same symptoms as before. My doctor offered little to no help, he plainly told me that I would have to learn to live with the pain and bowel leakage he once again started me again on the steroids. Finally in 2013 I had him to refer me to a specialist in Nashville TN, I am finally getting help, the medicines I were taking was not meant to treat my degree of Crohns Disease, I am labeled with severe to extreme Crohns. After all the test, her findings declared I was in a full flare, also I was diagnosed with anal strictures, at that time I started Simzia, which seemed to work great, B-12 injections, potassium, vit d, prednisone, flaygl, I began to feel some better but I was still extremely tired and battling depression along with.bowel leakage and pain. As I entered into 2014 the dr and I began talking about removing my colon, at this point I my willing to do most any thing to be out of pain, but she wanted to try give my medicine a little more time to work. I am thinking why???? I am in pain and I am losing my life, I am not able to work, I am not able to make any plans for family functions, I send most of my time in bed or in the bathroom. So I suffered through most of 2014, by august I am on my 3rd colon scope by November I was rushed to the hospital in Nashville where the dr found my colon stricture to be completely closed and a full flare, another colon scope ( making 4 in 2014) to stretch the stricture. Once again we change my medicine now instead of the cimzia to simponi, added methotrexate injections, folic acid, uceris, Zofran, b-12, multivitamin, and a no fiber diet. I have seen the surgeon once again to discuss my removal of my colon with no reversal. Due to all the steroids and being inactive I have to lose 60 lbs before my surgery. I am extremely scared! The surgeon advised me that even after the removal of my colon that a flare could happen and that my disease could attack the incision area leading to longer hospital stays. I seems like my life is over. Now the rest of the story, my oldest son has inherited my crohns disease, and my grandson has a 60 % chance of getting it due to the disease being on both sides of his family. And after more family reach it seems that the disease runs on my mom side of the family, with me being the worst with the disease. so my advise to any readers, research your family history you may find that you are not alone.

 

[mightymocha]

I am also new to this forum and our stories are similar. I am 42 and was diagnosed in 1990. I suffered for 13 years trying every medication, pentasa, asacol, prednisone etc. When I was 29 i had surgery which was able to remove all of the disease. I had my ascending colon, ileum and some small intestine removed, this changed my life. I was symptom free for about 8 years and then had mild flare ups after that. Right now I am back to miserable with a severe flare up again, just had a colonoscopy and it is back everywhere. I have 3 kids and my middle child was diagnosed at age 12, he is now 16. He was having a terrible time and they put him on all the same medications that I tried over the years with no relief. Now he has been on remicade for almost 2 years and is in complete remission. My sister who is 2 years older then me was also diagnosed at 14 and has suffered greatly, so I have watched these medications not work for either of us and that's why I decided remicade for my son. She has been in very poor health with so many hospital stays, surgeries, ICU stays. She had no life and wasn't able to leave her house and now has an ileostomy so she can have a life. Unfortunately this has affected her kidneys so now she is trying to get on the transplant list.
There are so many new medications out there since I was first diagnosed so I'm hoping one will work for me. The Dr discussed remicade and I have seen it work for my son, but I'm not sure it there might be something better for me, I just started looking into all the new medications.

 

[jodymccormick]

Hi my name is Jody and i Have had Crohn's for 20 years and it has never been in remission..... please help/// i moved up here in Indiana for help with crohns but i havent had any luck...:stinks: