My mother died of Crohn's when I was only 8 years old. She was 27. Of course she died in 1965 when there wasn't as much they could do for Crohn's other that surgery. Her disease was in her small intestine and they just kept cutting out parts of it until she didn't have much left..she then became septic and passed away. I am now 51 years old. I have a younger sister who is 49 and was diagnosed with Crohn's in July and had to have a partial colectomy with a temporary colostomy. Now I am wondering about my digestive symptoms. I had my gallbladder removed on Sept. first and have been dealing with diarrhea every morning since. I have no appetite, have lost over 20 pounds, have abdominal pain, joint pains, and sometimes my the whites of my eyes get red and my eyes hurt but it comes and goes...I have read that Crohn's can cause arthritis and eye symptoms....so can this disease be hereditary and do I fit the symptom profile...the surgeon who did my gallbladder surgery said that my diarrhea and abdominal pain is just post surgery annoyance that will go away in time...I am not so sure. I told her about my mother and sister's Crohn's diesease but she didn't think it has anything to do with my symptoms....any advice would be greatly appreciated. Thanks....
Crohns is hereditary, I checked with my doctor because they were asking about my brother who has it when I started to get sick. It kinda sounds like it, but I'm no expert. I would have a gastrointestional doctor check into it just to be safe. All the symptoms that you are experiencing are ones that they were asking me about.
There is strong evidence that Crohn's MAY be hereditary, particularly in the Ashkenazi Jewish population from Eastern Europe that decamped in the pogroms in the early 1900's to America and England. I have had Crohn's for some 37 yrs - since I was diagnosed at 24 yrs in 1970 - the usual age for dx. I am now 63 yrs. Every gastro I have seen (and I must have seen some 20 or so, since we have moved around Europe a lot), has asked me if I have any Jewish blood. I have always replied "no, not to my knowledge", but there is suspicion that my maternal grandfather was Jewish, but the synagogue in the town he lived in was burned down during WWII and there are no records of his birth. However, there is no conclusive proof, despite many studies, that Crohn's is hereditary, although it does tend to run in families. No research has proved this link yet, although I believe there is a new gene the research scientists are looking at.
In my particular case, neither my twin brother (who died of a brain tumour at 50 yrs old), nor my elder sister, who is now 65 yrs, had/have Crohn's or any sign of it. Neither of my parents had Crohn's, nor any of their extended families, that I know of. However, my father died of colon cancer at 59 yrs and my gastro says I am at high risk of my Crohn's turning to cancer because of Dad's colon cancer. Coupled with my recent breast cancer (which is again highly prevalent in the Ashkenazi Jewish population), my gastro is very much aware of my hereditary tendencies and does all he can to mitigate any problems. For the first time in 37 yrs of Crohn's I now have a stricture in my small intestine, and am awaiting an MRI, and possible resection of that narrowed part. It really is a **** shoot, if you will pardon my language. In the 9 months it took to dx, and a laparotomy, I went down to 70 lbs., but had no pain, so it was difficult to diagnose. Crohn's seems to present with different symptoms and is not easy to diagnose, especially with ignorant doctors.
Many Crohn's patients get a couple of flares, and then it settles down with no relapses. Mine is intractable and I self inject the chemo drug methotrexate weekly which does a good job of keeping the inflammation at bay, although I have morning diarrhea - watery and explosive stools, and weight loss at the moment. I am currently on a 5 day on, 5 day off, Cipro antibiotic, which has reduced the diarrhea.
From the description of your symptoms, I would think that you need further testing - Crohn's can present not only from the mouth to the anus, but also, in isolated cases, cause eye problems.
I would respectfully suggest you see a gastroenterologist - not just any gastro - but one who has had experience with Crohn's disease. I have had some awful, quite ignorant and patronising gastros, whose expertise was in the stomach area etc. and knew zilch about Crohn's. You really have to be your own best advocate. I would ask for a colonoscopy and endoscopy. The biopsies of tissue from the bowel will determine whether you have Crohn's or not. Blood tests will not give a definitive diagnosis.
I don't know anything about gall bladder disease as I have never had it, but for peace of mind, especially in light of the familial problems, I really would want to see a gastro who knows something about Crohn's. Mine started in the small intestine, around the terminal ileum, so I have been on B12 shots for some 20+ years, but now the disease has spread to the whole GI tract. I am awaiting an MRI to see what the extent of the stricture is, and if surgery is necessary.
Please contact me if I can be of further help. I wish you well.
Hi Palper, I have had crohns disease for over 20 years....in the beginning they said it wasn't hereditary but now say otherwise....I was actually in a study at Mount Sinai for that very reason!! My twin sister, mother and grand mother have all had crohns and say our children have a 40 percent chance.
Lizcee.....I look at your story and our stories are very similar!!!
My grandmother on my father's side was diagnosed with crohn's some 20-30 something years ago. I've witnessed firsthand what it's like. She has a colostomy bag, or whatever they are called.. And personally, it scares me. My great grandmother on my mother's side was recently diagnosed with it also, only months ago. I've always had this fear of this disease, and if it could happen to me too. But it seems, in your guys' case, the instances of it running through families, seem to be rather immediate. Like sufferers children having it, their children, and immediate family members. I hope this never happens to me and my heart goes out to all of you..
My 21 year old son was just diagnosed with crohn's after 40 lb weight loss in 3 months and vomiting food/drinks almost every day in the last week, then vomiting blood (which ended us up in the er). He ended up having a partial gastrectomy due to a perforated ulcer and blockage where the stomach and small intestines meet and spent 3 weeks in hospital. His biological father was diagnosed with chron's about 19 years ago after about 3 years of bad stomach problems. He has had part of his large intestines removed, osteoperosis, fetulas, gallbladder removal and many other problems brought on by chron's. He has 2 older children and 1 younger child who show no symptons of chron's. I have been searching websites extensively since my son was diagnosed and have read that they are saying chron's can be hereditary. I had my gallbladder removed 3 years ago and never had any real problems, except tons of gas which went away, after the surgery, but I'm sure symptoms vary from person to person.
Crohn's is hereditary, but I'm not so sure that it can be within the same generation. In my family (which is not Jewish whatsoever), we have five generations of Crohn's. My great-grandfather's sister had it and now I have it. She passed away from a hemorrhage because she was Rh negative. Between she and I, no other generation had it. I was diagnosed when I was 12 years old, and it took seeing many doctors before a VERY good one figured it out. They used to say that it does not show up until you are in your 20's, but I proved that wrong. It also appeared in my mouth. I think Crohn's can take on many forms. Mine has been in remission for almost 5 years now, but I am now experiencing other problems not related to Crohn's. I thought I had an over-active gallbladder, but doctors do not. If you think there is something wrong, there usually is. We know our bodies. Doctors often want to look at the easy and most common answers. YOU have to demand tests to figure out what is wrong. They can very easily rule out Crohn's by doing a blood test and a simple upper GI series or biopsy. DEMAND that you want one of those done if you are not satisfied with their diagnoses. Diarrhea is prominent after a gallbladder removal, and may not ever go away. You may want to research Habba Syndrome.
I would like to bring this to the table: Has anyone else with Crohn's realized that a sibling has/had asthma? There seems to be some correlary between Crohn's and asthma. Look in to it. You'll be amazed. My sister has asthma.
im 16 & my Dad Fought Chrons for 15years
& He passed away august 23rd,06.
not to sound nasty.
but sometimes when i.....
how do i put it...
i see spots of blood.
& before my dad passed away.
he was afraid i might have chrons or something
because id go through some of the same things he did.....
what do i do?
i know i need to b checked.
but im really scared....
godbless u all.
Not to sound naive but I was told you can't die from crohns and I have been reading the post from quite a few people who say their relatives have died from crohns. Can anyone offer any insight on this subject. I have crohns and I was told it could debilitate me but I couldn't die from it.
My Father Died From Crohns...
Im No Doctor. but. i do knw my dad lost his battle with crohns..
when they first diagnosed him i believe they said hed only have a 8 years left.
but he battled it & took care of himself... 15years...
im just a teen. Lol =[
soo i havent really studied up on it.
i think it depends on how bad it is. idk.
as i said im no doctor.
but ull b n my prayers.
god bless u dear..<3
~~PS!!! IM SORRY FOR THE MiSSPELLING ON MY RECENT POST.
Thank you for the info. Its something I will ask at my next dr. appt. 7/29. Its scary to think since I have 4 children and don't want to leave them anytime soon. I'm so sorry to hear you lost your dad so young. I was married and had my children when my dad lost his battle with prostate cancer and I felt like someone had ripped something from inside of me. Its hard to explain, I was strong for my kids but it was and is very hard for me to not have him here with me. (he died in 1998) So my prayers go out to you.
If you don't mind me asking what were some of the things your dad struggled with the most with his crohns?
I regard to blood in your stool I would go to the dr. and tell him you have family history of crohns. Keep track of what your bowels are like because he will probably ask. When I have blood in my stools even if its a little I have to report it to my dr. because she said it could be worse than what I see and it usually is.
Like I said I'll be praying for you and I hope and pray you don't have crohns.
Nice talking to you.
It is rare today for someone to die of Crohn's as a primary cause. However, Crohn's can cause complications of other things. Medications for the Crohn's can lead to kidney and liver problems. Untreated Crohn's could kill you, if you became too malnourished or had a perforation or obstruction . If you are seeking medical treatment, the chances you would die directly from Crohn's would not be worth worrying about. Doctors would give you TPN (IV nutrition) or a feeding tube before you would become too malnourished. They would do emergency surgery before you hemorrhaged to death and give you antibiotics if you got sepsis from a perforation. I suppose if you were completely drug resistant to all Crohn's medications, you could eventually die.
Years ago people could die from Crohn's because treatments and medications were very primitive. Some people today who say their relatives "died from Crohn's" mean that the Crohn's was a contributing factor. However, this does not mean that it was the only reason they died.
Hi Katie....What a brilliant post. so erudite and articulate. Want to become a Community Leader Katie?
I am the first one, but struggling not only with new trackers stuff, but have serious problems at the moment...Crohn's is in the ascendent, with inflammation around my terminal ileum, pancreatitis, oseophagitis, two strictures that we have to get under control before surgery, no appetite and struggle to even eat a yoghurt, etc. etc. Too depressing to go there. I am going onto an elemental diet (Fortijuice) tomorrow to try and get some weight on before surgery. Have had to double my chemo (methotrexate) and gastro has added budesonide, along with omeprazole and domperidone. Rather concerned about introducing a steroid atfer I got steroid induced psychosis when diagnosed with breast cancer, but my IBD nurse said today that budesonide metabolises differently to prednisone, which I was on then. I look at my tablets, along with breast cancer medication and think, do I really want to take all that toxic suff? Guess so, as I want to live and have an 80 yr old disabled husband who needs me as much as I need him. Big problem at the moment is possibility of a perforation although my IBD nurse today said this is extremely rare...time to dial 999 is when you start vomiting. Obstruction is the immediate problem. Waiting for histology results on biopsies taken last week on the oesophagus, just praying they are benign, as my Dad died of colon cancer, and I do realise I have high risk, along with my breast cancer.
Talked to my gastro over the weekend when he rang me, quite unusual with our socialised medical system in England - wow, feels like private medical attention and I asked about anti-TNFa meds..he said a definite no-no,as they can make the strictures worse, and with my previous history of breast cancer, can cause lymphoma.Need to get inflamation under control before surgical resection of the strictures. Fortunately my monthly blood tests, including LFT and amylase are fine. My white cell count is too high and MCV and MCH are out of range, but he thinks this is okay due to the methotrexate. JUST a Crohn's flare!!
Crohn's is hereditary. They will tell you that, now. However, it is rare for it to appear within the same generation. My grandfather's aunt had it. Then, my grandfather's brother had it. Now, it's just me. It skipped my mom's generation, I guess. And, I hope that it skips my children (when i am lucky enough to have them). Have you been checked for rheumatoid arthritis? You know, it is a sister to crohn's. It attacks your joints and connective tissues the way crohn's attacks your digestive system. Your eye problems sound more like an arthritic symptom. IDK. I do know that diarrhea after gallbladder surgery is VERY common. Often, surgery makes your symptoms worse than they were before! Irony. I wouldn't jump straight to crohn's. I wouldn't wish it on my worse enemy. And, too often, our minds influence our body's reactions. I've had crohn's for 18 years. I've now had uncontrollable diarrhea for almost two years, and they keep telling me it is not my crohn's. I've been in remission for 4 years, now, thank you, Lord. So, you can have crohn's AND have diarrhea and they can be completely unrelated. BTW, i saw the comment about asthma. My sister has asthma, too. It is typical for one child to have crohn's and the other to have asthma. Strange....
OH! The other comment I want to make: most people do not die from Crohn's. They die from crohn's-related complications. Such as: bleeding, infection, cancer, etc. I really don't believe that anyone's death certificate says "Crohn's disease" as cause of death. BUT, there are too many that say "sepsis due to crohn's related surgery" or "massive hemmorhaging due to crohn's".
when I have a bowl movement, I am in terrible pain afterward, it is awful. I am sick the rest of the day...feel like I am going to die, it comes also into my back, take bental, and pentasa......and if that doesn't work, take ativan, and eventually, something will work.....I do feel like I am going to die, had ct scan yesterday, the radiologist said afterward "good luck" - what did he mean by that? will find out friday.
i'm only 14 years old, and my dad has had crohns now for 6 or 7 years, the doctors say it may be hereditary my sister is allready showing symptoms according to her doctor. But i'm not aware of all the symptoms, does any body know the most common ones. Crohns also goes further back in my family so im not sure what to think.
I would definitely go see a gastroenterologist because it sounds a lot like what happened to me. I first got an eye inflammation, then swollen joints, canker sores, and red bumps under my skin. I took large doses of ibuprofen for the swelling and then started having diarrhea and bleeding. After a month I finally went to a gastroenterologist and they did a colonoscopy and told me that I had Crohn's. I also was very tired and lost 20 lbs. in two months. I am 50 yrs. old and there is no one else in my family with it. So, whether it is hereditary or not, go see the specialist. Other doctors don't know much about this disease.
When I asked my consultant if it was hereditary, he said it is unclear as there is not enough research into it, but it does seem to run in families. I was diagnosed when I was 14, and had lost my father to cancer the year before that. He had had similar symptoms to the ones I was getting, but the doctors couldn't be sure if it was Crohn's/UC, or the cancer. Since I was diagnosed with Crohn's, it is likely that my dad suffered from it too, so I think it probably does run in families.
How are you and your daughter **** now? My best friend is suffering from what I suspect to be chromes disease, she is in much pain and lived in KY where she got terrible care and diagnosis changed every time she say a different doctor. Her brother died, my best friend, 2 years ago from a massive heart attack, but the year before that he had become emaciated and had much problems in the toilet area.
Now I am helping his sister try to find out what she has, and then what the treatment she should be getting. She is very beaten down by the death of her brother and by the awful medical attention she had gotten. Her mother and I talked her into moving back into civilized area of Cincinnati OH. I am sorry for your suffering - have either of you had fistula's involved?
I am sorry if I am interfering, I am just trying to collect all the information I can so that I can emotionally guide her when needed to. Her brother loved me much, and she does also due to that and the factthat we just click. I don't know how I could take the loss of the both of them; but that is being selfish. I am merely looking for answers if you are still willing or capable of providing me with anything.
I do know that she has had internal fissures for quite a few years, which has frustrated me that she has received no medication or surgury for these. Now they are starting to come out on her skin, which is also an organ. I am particularly upset that they are on her upper back and arm, which is far away from where the intestines are, and if the disease that she may have hasn't in fact invaded her lungs and/or heart. Any advice or sharing of knowledge would be helpful.
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