Can IBD kill me?

Can Inflammatory Bowel Disease kill you? Is this disease ultimately going to be what is the reason for your death?

It is my opinion that the chances of your Ulcerative Colitis or Crohn's Disease being the cause of your death are almost 0! I have never heard or read of anyone who died from this disease.

In the past the chances were a bit higher due to problems misdiagnosing (or not diagnosing) IBD in people, but nowadays it is not as uncommon. While the risk of perforation is life-threatening, emergency surgery is saving more lives now than ever before.

Surgery is a risk for anyone. The risk of death due to surgery is there for people with Inflammatory Bowel Disease, but it is very small.

I think one of the biggest worries when someone first gets diagnosed with IBD is in addition to how will their life change, will this disease end up killing them. I hope everyone can come to learn that this disease is definately manageable, but most importantly it will not kill you.

Yes, my surgeon, when I burst into tears after he showed me his findings, told me that it is NOT fatal and that there are some medicines to manage it and I would be just fine. While the "just fine" statement is a little TOO positive because one is never truly as good as before it appeared, it certainly is manageable and while chronic, is not fatal. Good point for the newly diagnosed.

The disease itself will not kill you but other things the disease causes could kill you. Such as perforation, losing mass amounts of weight, internal bleeding, and the list goes on but people should not worry about it. If you worry about when you will die or whats going to kill you then you will never live life to its full potential. Think happy thoughts,LOL.

I don't mean to sound negative in any way, and I do think in the majority of cases, IBD's will not kill you. However, before I was diagnosed, there was a local man who had been diagnosed with crohns, (he was only 19) and he was in a state of denial about his illness. He refused to accept that he had the disease, so refused to take any medication (I understand he was newly diagnosed so what he was feeling in terms of the denial isn't unusual). As a result of his actions, he died as the crohns caused a perforation in his bowel. This, story understandibly made me fear what was going to happen to me when I was diagnosed a year later. Fortunately, I now know more about the disease, and although I still have a lot to learn and there are areas I don't understand, I can safely say that I no longer think I am going to die from this illness. Its just a pity that a young persons life was lost because he didn't fully understand what having crohns really meant.


Ruth

I dont think the MAJORITY will kill you. But there are plenty of deaths from Crohns. It is mostly from not getting treatment first.

There is a website I used to have that compared crohns to UC in a lot of emergency areas and crohns KILLED UC. 5.9 million amubulance rides last year for crohns. I believe a few of those were for me lol.

Skinsfan1229 said:

I dont think the MAJORITY will kill you. But there are plenty of deaths from Crohns. It is mostly from not getting treatment first.

There is a website I used to have that compared crohns to UC in a lot of emergency areas and crohns KILLED UC. 5.9 million amubulance rides last year for crohns. I believe a few of those were for me lol.

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I can add at least one ride to that! Yeah, sorry to say that if you are losing enough blood, and not listening to your doctor, it can kill you. Not likely though. By the time I got to the hospital, I was basically missing half of my blood supply. Near comatose, and before I was released from the hospital (fortunately my doc has good bedside manner and didn't tell me this when I was first admitted) I was informed of just how close I was... very scary. I was left with a warning. If the doctor says you need to be admitted to the hospital now, do it now... don't wait a week like me... that's just stupid!:redface:

There should be more awareness about it.Ive heard so many stories about people(including me)almost dieing because doctors failed to diagnosis them with crohns and kept sending them away.More doctors should realize the symptoms and everything.
When I found out I had crohns I was devastated.I thought it was a death sentence,so doctors should also let you know that right away.

The DX of IBD (Crohn's, Colitis, etc..) can hit you like a pickaxe.. It's very traumatic, but like a lot of major illnesses (diabetes, etc..) if you manage it, it doesn't mean the end of your life, just perhaps the end of your life as you knew it. That's a sword with a double edge.. If the various forms of IBD resulted in more fatalities, and if it wasn't such a difficult subject to talk about, perhaps more people and resources would be devoted to finding a cure or a controll.. I don't recall Jerry Lewis campaigning for it, I never heard of an 'IBD' month, not even a day.., and nobody ever came to my door looking for a donation in support of it. See my point?

People have died from complications of Crohn's. Please know that these are situations where Crohn's is totally uncontrollable and aggressive. Or, the person is in complete denial and refuses to help themselves.

The other consideration is the side effects of the drugs. I'm no expert. However, our gastro doc has assured us that there are millions of patients and a very very small percentage has life threatening side effects.

I'm a very upbeat hopeful person. Everyone will die at some point and we have no idea whether it will be natural causes or accidents, young or old. I would recommend not sitting around worrying if Crohn's is going to be the death of you. It's a useless and depressing activity. Expend your energy living life. If you wake up in the morning and are breathing in and out, embrace the world and your loved ones like each day is the last. Leave a lasting legacy of love.

Most websites and resources say that there are only 500,000 thousand people with Crohns Disease in the United States.

I was going with what my Doc said. If my facts are wrong, please accept my apology. She could have been referring to a world wide statistic. I'm not sure.

ccfa says 1 mil in US i believe

and there is also definetely something fishy about this disease because its almost non existant in poor dirty 3rd world countries (thats why im so interested in helminthic therapy results....)

So this thread is still going huh? Well I'll add one last point. When I was admitted to the emergency room last week, my hemoglobin was a 4. After I got blood, my doc came by and I asked how much can I bleed without bleeding out. He said a healthy person can bleed and bleed and be ok. So, I said ok, but am I considered a healthy person... he didn't answer me. Scary.

I wouldnt think you would be considered a healthy person, with a chonic uncurable disease, especially when in the ER.

Now being in remission I can see a Doctor saying that.

http://www.ncbi.nlm.nih.gov/entrez/...ve&db=pubmed&dopt=Abstract&list_uids=15765390

This article tends to show or imply about mortality rates.....

Crohn's disease (CD) is an immunologically mediated inflammatory disease of the gastrointestinal tract. Due to a high morbidity and/or an increase in mortality in refractory cases, a new treatment approach is needed.

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Interesting post! I think we could safely say the conclusion is that if not controlled then the illness could possibly be fatal (like many other illness).

DannyB said:

Interesting post! I think we could safely say the conclusion is that if not controlled then the illness could possibly be fatal (like many other illness).

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Ditto!

...think Brad Pitt in 12 monkeys...

... if you freakin lose it (mentally) from all the drugs, and do something absolutely crazy, and then you die... would that count as the disease killing you?:yrolleyes: And this has got absolutely nothing to do with the fact that I just got prescribed psychotrophic drugs to counteract the insanity caused ny the other drugs I'm taking woohoo! My doc told me that he thought I was going to punch him the otherday! :ybatty: and :yrolleyes: and some mixed with occasional :ylol2: Cause I can't taper of the Prednisone.... whoah... this is actually kinda fun! Anyone else been on extremely high doses for an extremely long time?

I've been on 60mg and 80mg, and stay at that dose for a month or more and twper 5mg every 2 weeks or maybe even 3.

I've been on and off it for 15 years or more, first for asthma, now for crohns.

Right now I'm on 20mg which I've been on since May, and before that i had tapered from 80mg since jan I believe, I dont remember before that, I know I had a lot of kidney stones, I dont know if I was on prednisone or not.

I've been on and off for about 5 years. First time I took it, I gained 40lbs in 3 weeks... no joke. Next couple of times, very little in the way of side effects... just acne. Haven't been able to get off since March. Mostly up around 100mgs. For some reason, anything under 40mgs doesn't work. I can drop to 60 or even 50 sometimes, but then my stomach starts hurting really bad again. Yesterday, I dropped to 50, but I'm already feeling a difference... but the side effects are rediculous right now. Heart rate and blood pressure are highly elevated... I'm really, really mean... normally I'm a pretty nice, pleasant guy. And I look like a teenage chipmunk, with bad acne. Back and arms are covered... face is not too bad I guess. Doc prescribed Xanax, but I don't want to take anymore drugs. I'm done. Gonna get through the holidays and then opt for the Colectomy. Won't do it now, cause I plan on eating like a pig for Thanksgiving and Christmas. No way I'm getting fed through my arm if everyone else is eating turkey and stuffing!

Maybe you can taper yourself more slowly, ar eyou tapering 10mg a week? maybe you cocudl try every 2 weeks, or try 5 a week, try something different. if I start at 40mg it doesnt work, it wont be a big enough punch, but once i taper to 40mg from a higher dose then i'll be fine, until I get to around 20 or 15, which is quite normal...as I've explained this your body STOPS making the natural steriods, until you taper down to around 15 or 20mg, in which case some people dont start producing the natural steriosd, and they might have to go back up to 25 or so and taper slowly until it does start producing, this can be found out through a simple blood draw.

I've never had problems with prednisone, maybe cuz my body got used to it, but never had acne, stunted growth, fractured bones, i might have gotten a little awrnry or mood swings whil eon it but only once. Not bad for about 15 years of use of prednisone.

The side effects are just different for different people I guess. Yeah, I taper slooooow like from March to now, even try 2.5 mg taper... it's not the tapering, it's just that it doesn't work below a certain mg, but works fantastic at 100mgs... if it weren't for the side effects, that would do it for me. Completely asymptomatic at 100mgs per day...l but we all know you can't do that.

Starbelly I'm going through it right now atm... I'm down to 35 mg though now (20 and 15) and yes I have gone through the manic episodes... You should probably read what I posted about Corticosteriod Induced Mania and see if their is anything in thier that can help you, your friends, or your family... And you may want a second opinion as to if you can taper down or not... Because, stress causes crohn's flares and being on larger dosages of corticosteriods most definatly increases stress... Not to mention you feel awful, have bone loss, increase risk of cancer, the list goes on and on... Granted you may have to come off of your steriods super slow like me but slow is better than nothing... I'm coming off of mine at 5 mg every 2 weeks since I'm hypersenstive to it... Also the longer you stay on it the harder it will be to restart your adrenal gland when you finnaly do come off of the meds... And I know you don't want to be on corticosteriods for the rest fo your life.... So get a second opinion... Try other things to help with the stress including other medications and alternative treatments like meditation... I have found if I meditate it helps to keep me focused and helps to keep the stress at a much more tolarable level... None of those things get rid of the problems but they can help... And sometimes just a little extra help is all you need to go from feeling awful to being okay and able to function... I'm not saying your gonna feel great but you should feel better than you do now...

Actually yes it can , though it is very rare , and normally will state death from complications due to crohn's disease. for many people with CD this will not be the case and may never be the case but there are some who have passed away , I myself have almost lost my life due to this illness 3 times and now am being told that my disease if very severe and agressive. No treatments I have had have helped I now only have 120cm of bowel remaining I have a hickman line in situ to feed me as my wieght plummeted and in the words of my GI Surgeon I looked like a victim of belsin (concerntration camp) The amount of opiods I am on for pain is unreal most people would die if they took the amount I am on but obviously I have been gradually upped on these meds I have many other problems due to CD some of which are arthritis, kidney problems , gall stones , lung problems for which I needed surgery these are just some , BUT DO UNDERSTAND MOST people with this illness will find a drug that helps them and may have large periods of remission and may never need surgery but please unsderstand for some of us with this disease it CAN be fatal

I lost a friend who had Crohn's. She was in her 50's. While her cause of death was likely heart attack, she had been severely disabled before she died. She had a recto-vaginal fistula and a few difficult, unsuccessful, surgeries to try to repair it. Her doctors advised a colostomy, but she never wanted that. So their approach was to slow down her diarrhea through the RV fistula by taking tincture of opium orally. She was on other narcotics for Crohn's and nerve pain due to a Flagyl side effect, along with lots of prednisone.

Her Crohn's and the treatment of her Crohn's left her housebound, and I think the reliance on heavy narcotics and prednisone, in lieu of other treatments, and her inability to walk for the nerve pain contributed to her early death. I am still angry about it and sad, too.

loulou, you're having a very difficult time, too. I'm so sorry to read about the severity of your Crohn's. You must've had this disease for a long time. When did the lung problems present? What was your surgery for with your lungs?

Hi there Raindrop,
First let me say am sorry for your loss and pain,
I too have lost a close friend with CD and she was in her 50's and had many surgeries etc and on unbelievable amounts of opids. I have had CD myself for almost 17yrs but have only been diagnosed for 13yrs , My lung problems started in 2010 I had no less than 4 pnuemothorasis (sorry if have spelt wrong) (lung collapse) and after seeing the thoracic surgeons they advised that I should have surgery called VATS basically they removed the lining from around my lung then stuck the lung back they also removed part of the lung to remove the bulle (blister like leisions) from that area to try and prevent my left lung from futher collapse , though they cannot say 100% that it will not , they were very concerned that if I didn't have surgery that both lungs could collapse which would be fatal , Before CD I was healthy I played sports had horses and rode often I was a long distance runner and even ran for my county in the UK . I also represented my school in gymnastics etc I have 4 children and always worked then CD came along and over the years more and more health problems have occured and my GI's and surgeons have agreed that CD has been the route cause , I do have kidney stones but also have other kidney problems ( I had sepsis of my right kidney and my organs started to fail ) my GI surgean has stated repeatedly that I am difficult when it comes to treatments as they have to think of the other health issues I have due to CD and am not A typical. I do get very annoyed when CD is dummed down and even more so when it's by people who have the illness because there are so many varients when it come to this illness and while yes I understand that many people with CD cope well even continue to work etc and may never have surgery but then there is the other end of the scale IE your friend my friend (myself) that suffer a great deal due to this disease, It does anger me even more when I here CD refered to as "like an allergy" or "like ibs" etc if there wasn't the different scales of CD then I am certain that some states in the USA would never have allowed it to be classed in the same catagories as MS and Cancer and Mus-dis etc for the purpose of the use of Weed for pain etc if they didn't see how serious this disease can be for some. can I also add that Heather O'Rourke died due to CD also I pray that one day this Disease will be seen for what it really is . Thakyou for your comments Raindrop and again I understand your pain from your loss xxx GOD BLESS to all xx

Thanks for the info, it is encouraging

FDK80, hi there,

I apologise if I have in anway brought you undue concern Please let me make it crystal clear Most people with CD will NOT have the problems I am having , but I feel it only right that people understand that this disease can be severe, and needs to be taken seriously , most people will find the medications they are on help them and they have vast periods of remission can work and live on the whole good lives . It is not nor ever has been my intention to scare anyone or upset anyone. When I post any info I try to give both side of the coin rather than just from my perspective. GODBLESS and Good Luck

As others have said, IBD certainly can kill you if you're not attentive to it, don't follow your regimen, or are just unlucky enough not to respond to treatment. Two years ago when my daughter stopped responding to Prednisone, we thought that was it for her. Luckily it's working for her again now.

Not to be a wet blanket but nobody should have a false sense of security about this disease. It's quite dangerous.

My son died of complications related to Crohn's disease in November 2014.
He was diagnosed in 2011 with early onset of Crohn's disease.
He went to his doctors on a regular basis. We explored diets to no avail.
He went up the ladder trying every protocol and biologic. Vedolizumab was the last. With each Biologic, he presented with onset of potentially serious side effects. He didn't have any fistulas therefore the subject of surgery never came up. Blood clots were the complication that killed him at age 25. He had a massive stroke with hemorrhaging, then they discovered a massive deep vein thrombosis which resulted in a Pulmonary Embolism.
I have already reported this elsewhere on this site. If you are having transitory pain in your legs make sure your doctors are checking you out for blood clots. My son also was spitting up blood. He went into the hospital with a severe migraine. I explained to them that he never had migraines, they didn't catch the blood clot in his brain until he had a stroke.
The doctors seeing him in Portland Oregon were not routinely testing for blood clots as an early intervention practice as it is considered a rare side effect. Now due to the loss of my son this will be a standard protocol. Our primarily care doctor didn't know Blood clots were even associated with Crohn's disease. It comes up in all the symptom searches for Crohn's on the internet but our doctors were oblivious to the fact. Now having said all of this maybe the reason the biologics didn't work was they were being compromised by the Adderall he was taking. Again, the doctors disregarded that abstract when presented to them as inconclusive. My son was pretty dependent on Adderall to make it through school so he didn't listen to his body or intuition and go without it.
The point is this: IBD can get out of control under the best of care and intention, it is a very serious disease. Stay positive and informed.

Oh my Mommeran, I am so very sorry to hear about your son and I am so sorry I missed previous references to it. :ghug:

What a difficult and heartbreaking time you have been through and are going through. My most sincere and heartfelt condolences to you.

Thank you for bringing this to our attention. I do notice that our GI orders an INR when doing routine bloods and no doubt it is for this reason.

Thinking of you and may the memories of your lad help you find peace. :heart:

Dusty. xxx

DustyKat said:

Oh my Mommeran, I am so very sorry to hear about your son and I am so sorry I missed previous references to it. :ghug:

What a difficult and heartbreaking time you have been through and are going through. My most sincere and heartfelt condolences to you.

Thank you for bringing this to our attention. I do notice that our GI orders an INR when doing routine bloods and no doubt it is for this reason.

Thinking of you and may the memories of your lad help you find peace. :heart:

Dusty. xxx

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^Just this, exactly

R.I.P. Sorry for your loss Mommeran

Mommeran, I am so sorry for your loss.

Mommeran said:

Our primarily care doctor didn't know Blood clots were even associated with Crohn's disease. It comes up in all the symptom searches for Crohn's on the internet but our doctors were oblivious to the fact.

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I had DVT and PE back in '09. I had horrible calf cramps and could barely walk. Primary doc said it was electrolyte imbalance.

When the fevers started GI thought it was from 6MP.

I finally got to a doctor who heard all my symptoms and immediately checked for clots - which they found - so I got treatment. (I never had any leg swelling/brusing).

I now have doctors associated with my regional medical college. They couldn't believe none of my prior docs were on the look out for clots, as apparently they are are fairly common with flaring IBD patients.

So yes - IBD patients need to know about the association with clots, as so many doctors don't!!!!

Again Mommeran, I'm so sorry for your loss. Thanks for raising awareness about IBD and clots.

I'm so sorry for your loss.

You can die of the flu and strep-throat, but like IBD the chances of death from these things are very very slim, things to watch for are the side complications, such as blood-clots, bowel openings, etc. but if you are careful and quickly seek medical attention when needed IBD will NOT kill you!

I had two blood-clots both with Pulmonary Embolism (very deadly) almost died both times, but this is a complication of the disease not the disease itself. Now on Xarelto (blood-thinner) for life, so no real risk of that happening again

Very sorry to read your story, Mommeran.

With the start of the year I've been thinking about this time last year, when I was pretty ill and going downhill whilst waiting for diagnosis. I was increasingly weak and tired, and anemic, but the thing that scared me was the amount of weight I was losing. I was still about 140lbs a year ago, but down to about 120lbs by the summer (I'm a 6 foot tall male), but obviously if I'd carried on like that I'd have at least ended up in hospital and perhaps eventually would have died.

I've never heard of a link between bloody clots and Crohns before.

Um I don't know about you guys but id definitely be dead if it wasn't for modern medicine/pharmaceutical drugs.

I would've died a long time ago from malnourishment.