So, what happens if you don't treat Crohns?

[Jer]

This is a question I've been thinking about lately, considering my treatments are very slim at this point.

I WILL NOT get surgery. Sorry, not happening unless the doc can guarentee that I will be symptom free for the rest of my life.......that ain't happening.

So, if there are no more options for me, what if I just suck it up and deal with it?

Is the disease going to get worse and worse? I mean, if the meds are working, then are they helping me anyway? Is there a difference?


I dunno, just something going through my head lately.

 

[xSophiexx]

Hiya id be very careful about leaving active crohns untreated.. too many people on here have had to have emergency surgery due to life threatening complications i.e obstructions perforating the bowel.. and by the sounds of things that is the last thing u would want!!
Please discuss this with your gi before doing anything drastic xx

 

[Jer]

Well, I should have added that I would treat it in NON-BIG Pharma ways.


I also didn't mean to imply that I would do so without a lengthly conversation with my GI.

 

[wild_one353]

you should try to improve the condition, period. whether you are trying some special diet like the SCD diet(specific carbohydrate diet-buy the book), or all the alternatives people talk about on this site. never adopt the attitude to let it be as it is, if you arent trying anything new, you arent learning or progressing. Im not saying this to only scare and frighten you, but to empower you, so you are more in control of your destiny and prepared.

first issue- you arent absorbing as many nutrients as a normal person, this can put you at risk for any other disease imaginable and just make you more prone to infections and sickness. you need b12 supplements and magnesium supplements, and make double sure to get everything else everyday. your ileum is inflamed and this is where magnesium, b12 and all essential fatty acids are absorbed omega 3-6-9, these issues are crucial to just maintaining normal everyday function, beyond treating the disease process itself.


second issue- you could develop an intestinal blockage, at which point, surgery is an absolute neccessity to continue life. because you will be vomiting your food instead of digesting it.

third issue- long term inflammation can lead to things like cancer and blood clots/strokes and heart attacks. so SOMETHING must be done.

fourth issue- scarring can occur, which make the diseased tissue lose functionality.


GOOD NEWS- i have had crohns for 4 years now and have had almost none of the major issues and I have not used medication because im insane. but i have avoided ALMOST every single dangerous obstacle i may have encountered, so it can be done. Thats right, no surgery, very little complications, and this is coming from a severe case, not a light case that is easily treated and controlled with medication. but i am not here to encourage you to avoid medication, im just telling my story so you know that approaching it with other angles can really make a difference, but will not cure you. So DO everything you can to learn how to improve your condition and never stop taking notes and making observations as to what helps or hurts you, or makes you better or worse. And make a full on plan to try some of the medications or take the steps in all those directions.

i have eaten a diet that is high in fiber(refried beans, oatmeal, Wheat(only gold medal whole wheat flour), low in sucrose(refined sugar) and lactose(milk sugar),and low in meat protein, cooked veggies mainly broccoli and cauliflower, and low in fruit as it contains some sucrose. without getting too specific, that is a general explanation for my results. oh and nothing made with yeast like store bought bread. the diet is labor intensive, but will avoid lots of complications.

In 4 years i have never had more then 2 bms a day, and they are never diarhea like, just occasional slight mucus and sometimes constipation. i havent solved every issue yet, but i regret the times i assumed or falsely concluded nothing more could be done, i cant believe im still finding things that improve me to this day, just never ever stop learning and trying.

good luck.

 

[KWalker]

While I'm certainly not going to tell you to take medication you don't feel comfortable with, I would definitely suggest doing something to stop the disease from getting out of control. I didn't feel comfortable with the medicine and the risks that come with it so I stopped all medication and am now following the SCD which is a strict diet that can promote healing through food. It's not the easiest route but for me it is worth it because I become healthier while avoiding the medicine.

Now, not to say diet will work for you because we are all different, there are members on the forum that rely on medicine as well as a slew of other support forums strictly for treating IBD through diet.

What were the NON-BIG Pharma methods you were wanting to try? At the end of the day it will be a decision between you, and potentially your family as well. I see your avatar picture is a young girl, I'm assuming your daughter. Just think about her well being and how she would be affected if your crohns got out of hand and she no longer had a dad that could do stuff with her. It does happen.

Right now I'm not in remission (according to scopes) but I am completely symptom free. I'm not doing the diet as a short term solution, but rather I am thinking about the long term consequences of leaving crohns untreated, which I did for 3 years before starting the diet.

 

[Jer]

I appriciate the responces.

I guess I could have chosen better words in my original post.

My post is majorily to the BIG Pharma treatments. I certainly don't plan to just do nothing because yes, that is my little girl (18mo. this weekend!)
I'm not anti-BIG Phama, it's just that my options at this point regarding them are slim to none according to my doc. He's a smart guy and I know he'll try what he can, but at some point there is nothing left.
I will however, use cannabis, diet, supplements......etc. to help keep things as well as they can be. I will continue to read and study new methods and treatments in the GI field.

 

[shopgirl]

As someone who does not have health insurance, and has recently been told that the medication im on is becoming ineffective, and no other treatment options are available until I have health insurance (which is 3 months away) I would suggest you take whatever treatment is available to you. I am starting to feel like i was before i was diagnosed. its not good, every thought in my mind is a what if. I was in so much pain last week i wanted to go to the hospital but didn't just in case they would want to do a surgery or make me go on meds i couldnt afford. I used to think that surgery was never going to have to be an option for me but now Im not sure. I wish you the best of luck, but im sure when/if your sypmtoms get bad enough you may change your mind.

 

[glum chump]

Meds didn't work for me, and I ended up not having a choice but to go the surgical route. However, I also postponed surgery for as long as I could.

In between not taking pharmaceutical meds and surgery, I tried the following treatment options, many of these in the form of supplements: LDN (there's an excellent subforum on this site with great supports if you decide to try this as a treatment); Cat's Claw; Marshmallow root; Peppermint; turmeric; garlic; ginger; probiotics; Omega-3 (fish oil); Vitamin D; Vitamin B12; multivitamins; and iron. I also stayed away from nightshade vegetables (peppers, tomatoes, eggplants, potatoes, cucumbers).

I know that many others on the forum have tried a variety of different things, like the SCD and paleo diets, etc. It all depends on how manageable your symptoms are and the primary site(s) your Crohn's is situated. I had been relying on Ensure and then TPN for long enough that I knew I could no longer go on this way. It might be very different trajectory for you (which I hope to be true!!).

I wish you the very best...I think it's really important that you try what you believe to be optimum for you that carries the least possible negative effects. And trying to make these decisions are never easy!

Kismet

 

[Ihurt]

Hey there,

First off, sorry you are dealing with this awful disease. I have not even been diagnosed, I am still trying to find out what is wrong with me.

It sounds like you are running out of options from what you say your doctor is saying. I myself am a bit scared that if I do get dx with crohns, I will be up the creek without a paddle in a sense. I am not able to take most medications due to my severe sensitivities. I mean I get such BAD adverse reactions to meds that I have no clue what I will do.

I mean you could do a strict diet and that may help. I have a real good friend who see's an osteopathic doctor who treats a lady for crohns. She was told she was going to lose her colon that she needed surgery. Well this doctor put her on a juice diet among other things and she is doing great now. I mean her gastro surgeon told her she needed her colon removed! So diet and lifestyle changes can help people. That is likley the road I will have to take. I mean I also would NEVER do surgery unless it was an absolute emergency or absolutely nessasary. I mean surgery does not get rid of crohns and usually can cause it to come back, just in a different spot. I remember my old gastro doc telling me stories about some people who had IBD who went through surgery to remove a damaged part of the intestines only to have scar tissue grow there and end up having to have more surgery due to adhesions and scar tissue blockage. HE said it becomes a viscious cycle and before you know it, you have no intestines left! I think he was just trying to tell me to never let anyone do surgery on you unless it is absoluetly nessasary. I would try every road there is out there before letting any surgeon filet me like a fish. I would try all meds before doing surgery, that is for sure. I mean if you want to try the diet, that is great, it can help. I cannot say I know much about this disease, I am still trying to learn. But I will say that my best friends mother in law has crohns, she has had it for over 25 years. She has Never had to have any surgery and does not have too many issues. So this is definitely an individualized disease in how it effects a person..

Good luck in whatever path you decide to take.

 

[jlm]

I think most people would consider surgery a last resort. Ive had 4. The only med that really does anything for me is Pred and I refuse to spend a lifetime on it. I guess people need to decide what's important to them. That's how my last surgery happened. It was either stay on Pred or have another surgery. It may come to a point where surgery is the only option whether it is because of an obstruction, perforation, stricture, you name it. Every case is different. And I really don't consider myself to be filleted.

 

[Sybil Vane]

This is just my opinion on the surgery issue, but I do think it's better to go into surgery rather healthy than in an emergency situation. For example, I have stricturing Crohn's and had my first two small bowel resections and healed without complications. They were planned because I was suffering from frequent partial obstructions. For my third small bowel resection, I had a complete obstruction and was very, very ill for a month before surgery and I was in the hospital for two months after the surgery trying to heal and recover from complications. The surgery site swelled shut and then started leaking. I had drains everywhere for the abscesses and at one point I was pretty sure I wasn't going to make it. I would rather walk into the hospital for a planned surgery than be wheeled into one already very weak and anemic.

But, if you are not ready to have surgery, maybe you should wait. You should be ready, and I've found that when it comes to the point where you need it, a lot of Crohnies are almost looking forward to their surgeries because they want to feel better. So, if you're not all in, then it would probably be a bad idea. If your GI wants you to have surgery, ask him to refer you to a surgeon so you can just talk about your options. You don't have to have the surgery, but it's better to learn all you can about it.

 

[Smika]

Curious...why wouldn't you consider surgery? just out of fear? or for other reasons? I just had my second bowel resection a week and a half ago. Not saying surgery is good for everyone, but for me it has been a lifesaver. Only a week post-op and i already feel 110%better And I'm looking forward to being symptom free for a few years to come again.

 

[shamrock15]

Yeah, for me surgery and big pharma meds have been and always will be part of my life. Stricturing crohn's for me, planned and unplanned surgeries, and years of remicade so far. All of it was necessary. Until remicade/imuran were used together, I had 23 years without remission. I do hope that diet will take care of things for you, but it was never sufficient for mine. I had microfissures that made me septic, and I was probably about 30 minutes away from a very early passing. That led to surgery 1. A long stretch of pred usage with little effect led to surgeries 4,5,6 in a space of 5 months. Are meds/surgeries the best thing for everyone? No. But they may be the things that let you live a pretty good life with a disease that is, pardon the pun, sh1tty. Good decisions for your health do not always fit in with principled decisions.

 

[highlandsrock]

Hi Jer

Just picked up on this thread. Unfortunately for many Crohn's sufferers surgery is the only solution and there is no guarantee how long it will be before it has to be done again.

My first operation was in 1979 and I didn't have another one until 2010/11. Since then I haven't had to take any medication for Crohn's. That's just my experience. If I have to have surgery again then it will hold no fears for me. I'm pleased I've never a met a gastro doc with the attitude that lhurt mentioned. I'm all for realistically understanding the possible risks and complications that surgery can bring but keeping positive will really help to get you through and you need that support from the professionals as well.

As Sybil said, planned surgery is a much better option than becoming an emergency admission. You get a chance to prepare both mentally and physically for what lays ahead. The surgical team can also plan the operation and make sure they have all the necessary resources available.

Good luck

 

[Ihurt]

I will admit that the gastro that told me the consequences that come with having any type of abdominal surgery, well I think he was just trying to save me from making a mistake at that time. I was having all kinds of upper gut issues and at that time was not really getting much help. Well I asked my GI if I should consider laproscopic surgery. That is when he told me about the whole risks with surgery. He knew my history and of all of my other health issues. He also probably has seen a lot of people with IBD that have had a very hard time of it because of all the surgeries. I mean sometimes you DO need surgery and there is no other way around it. I had a ruptured tubal pregnancy years back and I had no choice, I had to have emergency surgery. I lost so much blood I would have been dead had I waited 20 more minutes my gyne said. So yeah, there are situations that are out of your control.

With that being said, I am not saying that surgery is a bad thing. I mean there are people who have crohns that have had surgery and are doing well and wont have any issues. I guess the best thing is to try everything before you let someone cut on you. I mean it is a no brainer. You do not want to have surgery unless you absolutely have to... That or like Sybil Vane said, if you are in so much agony and nothing is working, then yeah, surgery would then be a good option...

Everyone is different. I mean I have not even been diagnosed yet. I am still trying to figure out what the heck is wrong with me. But I do know that due to all my other health issues I have learned quite a bit when it comes to doctors and having to advocate for myself. It is always wise to get more than one opinion, sometimes even more that two before undergoing any type of surgery if you can. Just because one surgeon says you need surgery, well that is not written in stone. It is always good to get a few opinions.. If you end up having to have surgery, then just make sure you have a reputible surgeon who has done tons of these types of surgeries before and has a lot of experinece.

My best friend who also has a lot of health issues, well she had to have major liver surgery last year. She had a huge growth on her liver. Well she had lived in Costa Rica for about a year and as certain she had picked up a parasitic infection. Well she went to a couple Gastro surgeons and a couple wanted to take a biospsy of the growth. Well after doing research and talking to some other people she found that having a biospy taken of a growth that is a potential parasitic infection could kill a person instantly. She got 4 opinions from 4 different surgeons before settling for one. The surgeon she chose was a top surgeon who had knowledge when it came to parasitic infections. Well he told her after he removed her whole left lobe of her liver that had she let one of those other idiots take a biopsy, she would not be here today. He said had they punctured that parasitic cyst it would have spilled into her blood stream and she would of died!!!

Anyhow, sorry to go off on a story there, just the bottom line is always get more than one opinion when deciding on whether or not to have surgery of any kind.... Good luck in which ever way to decide to go..

Hi Jer

Just picked up on this thread. Unfortunately for many Crohn's sufferers surgery is the only solution and there is no guarantee how long it will be before it has to be done again.

My first operation was in 1979 and I didn't have another one until 2010/11. Since then I haven't had to take any medication for Crohn's. That's just my experience. If I have to have surgery again then it will hold no fears for me. I'm pleased I've never a met a gastro doc with the attitude that lhurt mentioned. I'm all for realistically understanding the possible risks and complications that surgery can bring but keeping positive will really help to get you through and you need that support from the professionals as well.

As Sybil said, planned surgery is a much better option than becoming an emergency admission. You get a chance to prepare both mentally and physically for what lays ahead. The surgical team can also plan the operation and make sure they have all the necessary resources available.

Good luck

 

[LindaS]

My first surgery was in 1995. By that time, I'd had countless obstructions, partial obstructions, hospital stays, and had been off and on predisone for 3 years (much more on than off). I was hesitant to have surgery because of fear, and the knowledge that once something is removed, it can't be put back. After the surgery, I wondered why I waited so long! The surgery allowed me to go back to school and start a whole new life without symptoms for about 7 years. When in 2004 my symptoms started again, I was a lot less hesitant to have surgery. I had a second surgery in 2005 after 3 obstructions and failing on Remicadee and predisone not helping much.

While there are a lot more treatments available now than when I was diagnosed in 1988, and they can be very helpful, sometimes surgery is the best option.

 

[DustyKat]

You are not in the situation I am describing because you have a diagnosis and therefore should never reach this point but I will answer the question in the literal sense:

So, what happens if you don't treat Crohns?

The length of time my daughter went undiagnosed, from the very first symptoms until diagnosis, was 18 months. Naturally, being undiagnosed mean’t that she also was untreated. For her the consequences were dire. She received her diagnosis on the operating table during emergency surgery. She had a perforated and infarcted bowel and we came within a whiskers breadth of losing her.

Again, with a diagnosis it should never come to this, just as I now don’t ever expect my daughter to find herself in this situation again.

Crohn’s has the potential to be a very unpredictable disease and therefore you must have the ability to be flexible. By all means choose the path you desire but don’t become so entrenched in that journey that you refuse to see that changes need to be made...never say never, as you may be doing yourself a serious disservice.

Good luck! I hope you are able to find a solution that both suits you and works well. :hug:

Dusty. xxx

 

[JMC]

I WILL NOT get surgery. Sorry, not happening unless the doc can guarentee that I will be symptom free for the rest of my life.......that ain't happening.

Sometimes surgery is the only option and it can bring about a huge improvement in the quality of your life, even if it cannot permanently cure your disease. I had a resection last year, which left me with a temporary ileostomy (now reversed) and my biggest regret is not doing it sooner.

 

[kiny]

Crohn's disease is a lot more serious than it used to be. For whatever reason, the crohn's disease that kids are getting now is far more serious than the disease people used to get.

If you don't treat crohn's disease at all, you would get more and more inflammation from macrophages sending out cytokine, you would get more and more damage to your cell, just regular epithelial cells, your body, until you get what they call full organ necrotising, basically the organ rots away. Treating crohn's diease is important no matter what.

Regarding Big Pharma, I don't like big pharma one bit, I think vedolizumab, tysabri, anti-interleukin blocker and other medication that managed to kill people in trials should have been removed from the market immediately worldwide instead of in specific countries, the mere fact this is on the market is detrimental to the development of safe medication as a whole. But I also think that there is a good middle road, some medication is relatively low risk and the benefit far outweighs any potential side effects.

 

[Cozmo]

For me, what happens when I don't treat my Crohns at the moment I go almost straight into intense imflammation. It's so intense I feel it leaves me with no alternative but to treat it.

Hope you can get in to remission :hug:

 

[tots]

For me not being treated for ten years my disease progressed.

Personally for me I wouldn't do that again. We all have our own journeys in this disease.
I hope you find help,soon! Very very soon!


Lauren

 

[Jer]

Curious...why wouldn't you consider surgery? just out of fear? or for other reasons? I just had my second bowel resection a week and a half ago. Not saying surgery is good for everyone, but for me it has been a lifesaver. Only a week post-op and i already feel 110%better And I'm looking forward to being symptom free for a few years to come again.

I guess it would depend on what the actual surgery was. How big of a surgery.

Never the less, I don't want surgery on any part of me. lol I dislike being in the hospital and there are never any guarentees. It's a risk I am unwilling to take at this point in my life.

 

[KWalker]

I can understand what you're going through. I've always said I'd rather suffer than have surgery but my little brother required an ileostomy for his UC and now he lives a better life than he ever did before. His was supposed to be temporary and he doesn't even want to get it reversed now because he knows he's in the clear now where as if he got the reversal there's a potential for the disease to come back.

There's a good chance you won't even need any sort of ostomy. There are a lot of people who have them on here, but I would definitely say there's more people that don't.