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Crohn's Disease Forum » Support Forum » I am scared of future pain


11-03-2017, 11:59 AM   #1
LetThemEatCake
 
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I am scared of future pain

Hello, everyone. I am new to this forum. I was diagnosed with Crohn's a year ago, at age 27. I know that while people with Crohn's usually have a normal life expectancy, it is a disease that gets worse over time. I am scared of the pain that is to come, and I have a question: If you are elderly and have had it since you were young, how bad is the pain? What will it be like at the end? If you have experience with this, please let me know.

Right now, my pain ranges from mild to moderate. I am scared that I will be in unimaginable pain as I get older, epically since I don't wish to take humira, which I've tried,or other risky medicines that can cause cancer. I also don't want to take steroids, because it ruined my grandma's adrenal glands. I am looking into surgery, however.
11-03-2017, 12:14 PM   #2
ronroush7
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I would try to avoid surgery if possible. Advances are being made all the time.
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11-03-2017, 12:36 PM   #3
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∑ Stoma
I would try to avoid surgery if possible. Advances are being made all the time.


So true. Iíve had 12 and pain is part of my life. First surgery, I was 20 and last, I was 38. Iím still 38.


11-03-2017, 01:43 PM   #4
Tuff
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It does not necessarily get worse over time. I've had Crohn's for seven years, and I'm better now than I was the first few years. I've never had much pain, except when I had an abscess. Surgery is usually a temporary fix, and the disease comes back. You should be on some kind of maintenance drugs to try to avoid the complications of Crohn's.
https://www.mayoclinic.org/diseases-...s/syc-20353304
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11-03-2017, 02:11 PM   #5
Lizzie
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I don't think you should rule out steroids completely - they helped me when I was losing weight rapidly and in serious pain. Long-term they're not great, but short-term they can be brilliant.
11-04-2017, 10:39 AM   #6
Bufford
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My pains were worst earlier in life when most of the damage was done prior to diagnosis. the fistulas on my rectum were the worst, like a welding torch up my rear..As a result I had colostomy surgery 18 years ago The years following I retired and as I age it seems that the disease has slowed down some. Rectal fistulas have settled down, but they are still there. I have some inflammation in the small bowel and in what is left of the bit of the colon, but it is managable with some Percocete on bad days. I did various treatments including Remicade, but at the moment I can manage my Crohn's with diet and by taking Turmeric and ginger and vitamin supplements including D.
11-04-2017, 12:03 PM   #7
Guerrero
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Hello, everyone. I am new to this forum. I was diagnosed with Crohn's a year ago, at age 27. I know that while people with Crohn's usually have a normal life expectancy, it is a disease that gets worse over time. I am scared of the pain that is to come, and I have a question: If you are elderly and have had it since you were young, how bad is the pain? What will it be like at the end? If you have experience with this, please let me know.

Right now, my pain ranges from mild to moderate. I am scared that I will be in unimaginable pain as I get older, epically since I don't wish to take humira, which I've tried,or other risky medicines that can cause cancer. I also don't want to take steroids, because it ruined my grandma's adrenal glands. I am looking into surgery, however.
The year of the diagnosis was the worst in my case (I was 15 and I'm 33 now), then medication worked perfectly (imuran) and I had many years I could fogot the disease with no pain ( but probably inflammation was silent in my ileum... so it leads to strictures at the end).
Everyone is different with this disease so don't imagine it will evolve in a way, or in another...
However I strongly recommend you medication instead of surgery especially if you don't like pain... post surgery is the most painfull experience of my life even if after 3 weeks I was quite ok.

Also there are evidences now through studies the sooner you start biologics the better the disease evolve with fewer complications.

Steroids as a short term treatment may not give you as much side effect as your grand.ma, you have to be supervised while on steroids, now doctors know how to manage it and give you supplement to avoid side effects.
11-07-2017, 01:38 PM   #8
valleysangel92
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Hello , welcome to the forum. I'm 24 now and was diagnosed at 15 so I can relate strongly to your fears.

I agree with the others though, in general, surgery is a last resort and should only be done if medication doesn't work or if it's an emergency. If you start a medication and it doesn't work, you can stop it, but if you have but remove it doesn't grow back, it's a permanent thing and if you don't take medication to control or slow the inflammation it can keep returning, and you'd end up needing to keep having more and more gut removed .

The earlier you start having surgery, the more likely you are to need repeated operations, for example, I had surgery at 20, and have been told I have at least a 50% chance of needing another resection in the future. The more you have removed, the more at risk you are of needing a stoma, or of ending up with complications such as short bowel syndrome which can result in you needing to be fed through a drip (TPN) in severe cases. Even for relatively straightforward surgeries there can be life long consequences. I had a short section of my guy removed and have lost the ability to absorb B12 , so I will now be on injections for the rest of my life. Most people who have surgery are then put on medication to prevent the disease retuning anyway.

Another potential complication is adhesions, where parts of the gut stick together or get stuck to the stomach wall, these can cause symptoms including pain and sickness and in some cases result in bowel obstruction. They can also turn into fistulas, abnormal tracks between organs. Both of these complications can result in needing more surgery.

I'm not saying any of this to scare you, I just want to let you know that surgery shouldn't be taken lightly. It definitely has its place, I would probably have ended up with a perforation without it.

I understand the risks of the medication can be intimidating, especially when words like cancer are thrown into the mix, but the risks are actually quite low. The risk of getting cancer are only a few percent higher than the general population, and you are monitored extremely carefully to make sure that you aren't suffering unwanted effects. I have previously had inflectra and I'm now on vedolizumab. I did have an allergic reaction to inflectra (which can happen with anything ) but other than that I have had no other problems with either medication. I know many people who have been on biologics for years (longest I've heard is 7) and haven't had any complications , some even say they've transformed their lives.

As for steroids, these are for short term use only and if used correctly the chances of severe long term side effects are quite low.

The general consensus is that leaving Crohn's untreated or not using a strong enough treatment is far more serious than the risks of the medication side effects as in the worst scenario the complications of Crohn's can be fatal (this is rare though and usually happens if it's gone untreated for a long time) . If the doctors didn't believe it was the best treatment for you they wouldn't give you the option.

As for your concern about things getting worse, disease progression is different for everyone. There is a train of thought that says the more aggressive the drug treatment is during the early stages, the slower and less severe the progression.

If I'm honest, my pain seems worse now than it has been for a long time, but I have had a lot of trouble getting things under control, partly because I wasn't offered preventative treatment after my surgery and I now have inflammation in the area that was reconnected. If I had been offered medication it's likely I'd not been in such a bad position now.

Disease progression is very individual so it's not possible for us to say how yours will be going forward. There are cases where it actually gets better as people get older, so it's not necessarily going to get more painful. Many also find that each flare is different so your symptoms may change or be less obvious, this is particularly true if the inflammation is in a different part of the digestive tract.
11-15-2017, 09:04 PM   #9
MizzSarah
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I ended up waiting 10 years before I was diagnosed with anything. When I was diagnosed I was ecstatic to find an answer. My doctor did tell me in all my excitement that with this disease it gradually worsens over time and iften comes with other health issues. He was not kidding! I have not had a normal blood test in years. I have a narrowing spine and arthritis of the hips and spine. I am 24 years old. My bones often feel like their rubbing against eachother and my immunity is gone.



Avoid any surgery everything I do us to prevent me from having surgery.

Take probiotics. Make sure your body us absorbing vitamins properly. Take lots of calcium!!!!! Take your vitamins. If you have to give yourself vitamin injects do it. Do low impact sports. Try to find coping mechanisms for stress etc. Stress makes the Crohn's worse

Hello, everyone. I am new to this forum. I was diagnosed with Crohn's a year ago, at age 27. I know that while people with Crohn's usually have a normal life expectancy, it is a disease that gets worse over time. I am scared of the pain that is to come, and I have a question: If you are elderly and have had it since you were young, how bad is the pain? What will it be like at the end? If you have experience with this, please let me know.

Right now, my pain ranges from mild to moderate. I am scared that I will be in unimaginable pain as I get older, epically since I don't wish to take humira, which I've tried,or other risky medicines that can cause cancer. I also don't want to take steroids, because it ruined my grandma's adrenal glands. I am looking into surgery, however.
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11-16-2017, 01:09 PM   #10
Guerrero
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Hi MizzSarah, I'm sorry you feel that bad.
But I think there is no certainty about this disease. It can evolve negatively, but in most case it's manageable and can be under control. Some have silent disease for years and other improve with age.
Every day modern medicine improves and the day we'll find new treatments and why not a cure is getting closer.

Also surgery may help a lot and be resolutive in some cases.
11-16-2017, 04:52 PM   #11
JackG
 
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Personally I would seek treatment sooner than later; arrange to see a GI at least twice a year; and I would trust him / her. My original doc said Crohn's "is a tiger" so you have to stay vigilant.

Good luck if you find that self medicating or special diets work for you, as some here have suggested. I was so lucky for so long after my emergency surgery, I started cutting meds and I ended up with strictures at my surgical site. Getting your stomach pumped is no fun.

Ive had Crohn's for 35 years and been on Humira for five. I've not had any increase in pain, but I've learned I should stay away from milk, ice cream, dark colas and coffee. Avoiding those things is a real sacrifice, but it allows me to stay working and out of the bathroom.
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