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I have a friend with this condition and wondering if he will live along time with this? His family is saying he might not be around in six years. This friend told me he's in alot of pain and can't do much work around his house.
I have a friend with this condition and wondering if he will live along time with this? His family is saying he might not be around in six years. This friend told me he's in alot of pain and can't do much work around his house.
Thank's for the help.
Like all other health issues there are varying degrees. I have one friend who is my age now which is almost 81 and I first heard of her illness with crohns when she was in her 20's...
Another friend who is older than me by a couple yrs went thru a surgery for her condition a couple yrs ago and she's OK...
There is so much info one can seek to manage the disease. More than ever and with the net, lots more.
My late husband was diagnosed at the age of 30; had 2 resections and lived to the age of 63. Without marijuana he would not have lived that long. His drug cocktail included imuno supressors which caused Cancer to wreak havoc on his body. If your friend lives in a MMJ state he might find it helpful.
My husband has a very mild presentation of Crohn's - he is 50 years old and going strong! And no medications at this point.
His grandfather and uncle both have/had Crohn's as well. His uncle is 70 and is doing fine, for a 70 year old. His grandfather lived well into his 80's with it.
It really depends on a lot of different factors. But some cases are a lot worse than others....
I have a friend with this condition and wondering if he will live along time with this? His family is saying he might not be around in six years. This friend told me he's in alot of pain and can't do much work around his house.
Thank's for the help.
I hope that he doesn't share his family's mindset of doom.
I trust that his doctor has advised how extremely important diet and lifestyle factors are. It's a necessary component of treatment. Meds alone won't do it. He has 100% control over those factors (unless he requires someone to feed him), and family support would help. Info at Crohn's foundation and Mayo clinic could help him and family get started, if he hasn't already, to get his symptoms under control https://www.crohnscolitisfoundation.org/living-with-crohns-colitis/
(Diet info near bottom of page). These are just basic guidelines. He should keep in mind that a food they say is fine in limited amounts may not be fine for him.
I strongly disagree with the statements on those sites that Crohn's can't be reversed because people have done it. What they really mean is that modern medicine hasn't discovered a way to reverse it with meds. He might like reading about these people. He will find that their methods vary, and he will have to find his own way too. Along with meds if needed, diet is just as critical.
Last edited by SimplySagacious; 04-07-2019 at 08:09 AM..
My friend's daughter was diagnosed finally at 5-6 years old...I remember
the first day of symptoms.
She is 43 now....sure she only has 6 feet of intestine left and
My daughter now aged 21 was diagnosed with Crohn's at age 10. Severe presentation (went from 78lbs to 59lbs in seven weeks; nasogastric feeds were required at that stage as she was approaching cardiac failure).
She continued to need nasogastric feeds for the next 8 years; she could eat normally as well, no restrictions, but could never eat enough to maintain proper nutrition.
She had her first resection Jan 2019; removed all of her TI, cecum and 18in of colon.
She's been on all and I do mean, all the drugs. Latest was Entyvio. She is still symptomatic.
Despite this she works 30 hr part time and is a junior at UNC.
Her case is severe; she is also prednisone resistant after many loooong courses of pred.
By a huge odd coincidence, my son in law, (married to my 36y/o daughter), who is an NP, was diagnosed in 2016 after an intestinal perforation. He too lost his entire TI and I forget how much colon. He'd had symptoms for years -was in early 30s at that time-but attributed them to IBS. He nearly died and was in hospital three weeks and off work another three. He is now on Remicade but still symptomatic.
Crohn's presentation/disease courses can widely vary. These two examples from my own family are common enough presentations though. Some folks have far milder courses. No way to know how your friend shall do; there are so many ways it can present/progress. The drugs used are immunosuppressive and some folks -like my daughter- don't respond to the drugs at all.
My husband was diagnosed with Crohn's about 35 years ago. He has had several resections and has very little intestines left. If we added up his total hospital time, it would be at least 3 years total.
He has gone months at a time without eating solid food and became extremely skinny for months. Then he went back on food, was given large doses of prednisone, and doubled in size. This pattern was repeated several times. Prednisone was the only med he would take for the Crohn's, but they didn't have anything else when he was diagnosed. They tried to give him some of the new meds as they came out, but he resisted. They wanted him to take them as part of medical trials, but he didn't want to be a human guinea pig.
It has not been possible for my husband to eat what I consider a good diet. He can't have much in the way of fiber because of Crohn's. He has always eaten whatever he knows agrees with him, and I will say that his diet is atrocious. His attitude is "(expletive) it, I'll eat what I want because I might not be here next week." But he's still here to the amazement of every doctor he meets, so who am I to argue?
For years he was on opiods for Crohn's and other extremely bad service-related problems, but the doctors will no longer prescribe them. Opiods kept the diarrhea away, but now that the doctors took them away, he is suffering daily with diarrhea and increased stomach pain. It's so sad to watch him knowing that there's something that could relieve his pain but that every doctor is afraid or unable to prescribe. He has tried medical marijuana and has not gotten relief, but I'm trying to urge him to try again with another doctor.
Talking with different surgeons he has had over the years, they seem to be amazed that someone with such beaten up intestines is still going. Every time he has surgery, they give me that look, shake their heads, and say he looks really bad inside. He knows he's a wreck inside, yet he doesn't dwell on it and always seems to think that he'll beat it. I think he takes joy in proving the doctors wrong.
He knows his body and what works best for him. Because he can't really absorb vitamins from food, he takes a multi-vitamin that has a healthy dose of B Vitamins. He gives himself B-12 shots and can still be deficient. He's always anemic and has problems taking iron.
I can't understand why the OP's family thinks he only has up to 6 years. Unless there's something they're not telling you, I wonder about any doctor who might be telling them this.
For years he was on opiods for Crohn's and other extremely bad service-related problems, but the doctors will no longer prescribe them. Opiods kept the diarrhea away, but now that the doctors took them away, he is suffering daily with diarrhea and increased stomach pain. It's so sad to watch him knowing that there's something that could relieve his pain but that every doctor is afraid or unable to prescribe. He has tried medical marijuana and has not gotten relief, but I'm trying to urge him to try again with another doctor.
You definitely need to find him another doctor. I've been taking opioids three times/day nonstop for 12 years to slow intestinal motility and I've never had a problem with doctors prescribing them. And I've lived in three separate states over that time.
Autoimmune diseases are first world problems. These are the countries where autoimmune is prevalent. Crohn's is autoimmune. Scientists now know that the B-cells that produce antibodies to attack perceived threats gradually strengthen until it develops into full blown autoimmune disease which can take years. This build up results, in large part, from repeated or prolonged exposure to, or consumption of, one or more things the immune system perceives as the threat. There can be associated lifestyle factors to make it worse such as stress, traumatic event, smoking, alcohol, certain pathogens, an undiagnosed low grade infection, etc.
Just as the autoimmune disease Celiac is a gluten intolerance, other food, drink and/or other substance intolerances or sensitivities are present in other autoimmune diseases. The most common food intolerances are dairy, gluten, amines, salicylates, sulfites, FODMAPs, fructose, caffeine, eggs, aspartame, MSG, food colorings, yeast and sugar alcohols, but less common substances can be the problem too. Many of these are in meds and supps also.
The only way to know which one or more is triggering your autoimmune is to eliminate them one-by-one for a few months. It could be one thing or a combination of food intolerances and something else in your environment or lifestyle. Meds suppress symptoms, but do not resolve the underlying problem. While one is taking meds to suppress symptoms, consider finding and eliminating the triggers.
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