Your experience? in Denial re: Crohn's

[likeleaves]

Anyone in denial about their disease?

For those lucky enough to not experience major symptoms, it can be a different kind of distress to discover your mostly healthy body is ravaging itself on the inside. You don't want to take drugs because you feel like you're mostly OK! And you don't know how to modify your lifestyle (or perhaps your have less incentive to) because your symptoms are so manageable.

Or... if you have major symptoms, perhaps you are in denial with regard to your 'triggers;' your need for certain drugs; or overall diagnosis.

If you have one, what is your experience with denial?

Mine:

I had some painful bathroom issues when it started, mid-2014, but ignored it assuming it was psychosomatic (long story). Intense bursts of pain continued at intervals. December 2015 I was diagnosed via scopes and gained remission, but because we didn't take the disease seriously (bc of such minimal symptoms... denial?) I relapsed in part because I stopped taking drugs, thinking I didn't need it, and I never called my doctor for more drugs/was intent on stopping them (lialda & prednisone/euceris). When symptoms returned, found 8 inches inflamed S.B. via CT enterography. Now to Humira, the prospect of which I hate.

I'm in denial - for something that does NOT disrupt my lifestyle very much, it seems RIDICULOUS to go on as powerful a drug as Humira. I was planning to go abroad for a year as a volunteer, but now I think I must forego the program. So - I guess I am getting over my sense of denial. I am about to take the drug, and about to forego the commitment abroad.

Another form of denial I guess, or just massive skepticism, is DIET. As a moderately health-conscious vegan, I have been told by some to avoid vegetables... raw vegetables for sure... which is complete anathema! And yet I have trouble rooting out seemingly problematic foods like coffee and energy drinks which I love but cannot root out completely from my diet. My GE claims that there is no evidence of foods bad or good for Crohn's patients (except sweets for the most part, and perhaps dairy, I believe), but he also notes that many people have success with very tailored diets. I don't know. Perhaps I am less of a denier and more of a skeptic on this front.​

Please add your experience!

 

[ronroush7]

A lot of times, when I find another food that I can no longer enjoy it takes a while for me to adjust.. The biggest ones have been caffeine and diary.

 

[Clash]

My son is asymptomatic. He has been for a couple of years. During that time he required surgery. He was on remicade and methotrexate and now humira and methotrexate.

He just had a scope and the disease is still active. Since he also has JSpA (juvenile spondyloarthropathy) that is treated by the humira as well we are facing the possibility that he will be on 2 biologics since we are running out of biologics that treat both conditions. JSpA is a condition that can occur with CD.

He doesn't have pain, his bms are normal. He works 38 to 40 hours a week and attends college. But his bowels have active inflammation. It's hard for him to wrap his head around that, hell it's hard for me too.

This disease can be insidiously silent even when on the big guns. The meds scared us but now the meds not controlling the disease are even scarier.

 

[lenny]

Welcome fellow vegan!

My son is the one with Crohn's. He does well with cooked veggies. I put a lot into soups and things. Red lentils are better than green, etc. He also does fine with fruit smoothies and most fruits. Not good when he pigs out on vegan ice cream or cookies.

 

[stickman7755]

I cut out any vegetables/fruits with skins. So I stick to mashed potatoes and bananas for potassium.
As far as fruits; I eat peaches, but take off the skin first. Apples same thing.
For protein I find ensure/boost drinks with extra protein help a lot. They are lactose free and easy to digest.
Also lettuce I seen to digest well, but spinach does not.
Good luck

 

[likeleaves]

clash - that is insane about your son. I can't imagine balancing work AND school with so many difficult considerations and appointments to keep.

 

[Eridon2002]

I had an ileostomy reversal May 6th(after having 22cm of colon removed due to stricture) and still trying to figure out what fruits/veggies I can handle. I mostly stick to well cooked veggies like zucchini and green beans. For raw I can do lettuce/spinach, red or yellow pepper(but not green-they are not "ripe" and cause gas). Grain-wise I can do oatmeal(steel cut and thick rolled), Kasha(toasted buckwheat). Broccoli, onions, garlic and any of the cruciferous veggies wreck havoc on my GI systems How one reacts to food and what they can handle is so specific to the individual. You really just have to try an elimination diet to weed out what works best for you. As a vegan you'll have to make sure you are getting a lot of protein. When you have inflammation and your body is healing you require more protein

https://www.ucsfhealth.org/education/nutrition_tips_for_inflammatory_bowel_disease/

 

[valleysangel92]

Hello,

I can relate to what you're saying, not for Crohns as such, but for Coeliac. When I was diagnosed I had no symptoms other than aneamia. I never missed school, I was out with friends on the weekends (shopping) and ate well. When I walked into the peads office for the first time, he told me I was much better than he expected, and he was amazed that my school attendance was so good. Apparently, someone with the blood results I had (TTG over 250, normal is under 10) should have been in horrific pain with nausea, vomitting and maybe even passing blood. I was 14 years old when I first got tested, and couldn't believe my ears. He told me on that first appointment he was 99.9% certain I had coeliac and that my intestines would be in bits.

When I had an endoscopy to confirm, my intestine looked totally fine and the biopsies showed no sign of damage. The consultant was baffled, didn't understand how that was possible and chose to monitor me. We kept repeating the bloods and they kept coming back off the scale. 2 weeks before my 15th birthday, they officially diagnosed me with Coeliac and I still had no noticable symptoms. It was difficult as a teen to completely change everything I ate, stop having school food (my school made amazing chicken wings and soft bake cookies), avoid chippies etc, but I did as I was told and stopped gluten immediately. I trusted my doctor but there was a part of me that wondered how neccessary it all was. I never cheated on the diet, but I got my final confirmation when I accidentally got glutened after about 6 months of no gluten, and I felt like death. At the time I had never felt anything like it. Now, my lips swell with even a crumb of gluten, so boy am I glad i didn't let that little niggle stop me doing what I needed.

I know things are mild for you right now, but your doctor would not be suggesting these treatments if they didn't believe they were the best option for you. One of the most important things with Crohns is to stop disease progression. It's a sneaky beast and can become very severe very quickly so its important to be 2 steps ahead of it at all times. This is why my GI and IBD nurse spent a year fighting to get me approval for biologics (its very hard to get in the uk) and wouldn't settle for anything else. You are right, they do come with risks, but leaving Crohns disease untreated or using a treatment that isn't aggressive enough is a much bigger risk.

As for your diet, this is not a one size fits all condition and what makes other's worse may not do the same for you. Try things, make sure veg is well cooked and peel fruit like apples. Keep a diary of what your eating and how you feel afterward (pain score and number/quality of bowel movements). I was once told to try things 3 times a few weeks/months apart. Also remember that what affects you during a flare may not affect you in the same way once things are under control, so its always worth trying a small amount again when you're feeling better.

 

[lenny]

My son is asymptomatic. He has been for a couple of years. During that time he required surgery. He was on remicade and methotrexate and now humira and methotrexate.

He just had a scope and the disease is still active. Since he also has JSpA (juvenile spondyloarthropathy) that is treated by the humira as well we are facing the possibility that he will be on 2 biologics since we are running out of biologics that treat both conditions. JSpA is a condition that can occur with CD.

He doesn't have pain, his bms are normal. He works 38 to 40 hours a week and attends college. But his bowels have active inflammation. It's hard for him to wrap his head around that, hell it's hard for me too.

This disease can be insidiously silent even when on the big guns. The meds scared us but now the meds not controlling the disease are even scarier.

At first, I skimmed this and thought your son was great because he didn't have symptoms. I'm sorry that the meds aren't controlling the inflammation. They need to cure this thing.

 

[Red Rabbit]

I was in denial after my first operation. I thought this is now over for at least five years or so. The previous 15 years or more I suffered every 3 to 4 weeks with terrible bowel spasms for up to 48 hours each time.

Everyone said it was stress and diet and the doctors also thought it was stress and IBD. These were actually factors once Crohns was flaring.

When my Crohns got severe within two years of my first op, that is when I realised the true destructive power of this disease on my body, my mind, my loved ones and my life.

Now it seems that my doctors and employers were in denial because I have to repeatedly try to convince them of my concerns as symptoms appear.

 

[MizzSarah]

When I was first diagnosed with Crohn's I was more relieved then anything. For 7 years prior I had no concrete diagnosis but I knew something was wrong. I don't think the countless specialists I saw believed there was something wrong. At least in their expertise there was no connection to what I was experiencing. Not knowing...by far was the most loneliest and darkest place I've ever been before.

when I started to do research--that's when I said to myself wow what on earth have I gotten myself into.

 

[Lizzie]

I've no experience of denial about Crohns but I empathise with your dilemma as a vegan being told to avoid vegetables, because I've been a vegetarian since childhood and used to eat a largely vegan diet until getting IBD. I became unable to eat most vegetables and non-animal proteins (severe diarrhoea, pain, bleeding and weight loss) and have very reluctantly taken up eating eggs and cheese. These days I eat cream crackers instead of vegetables, which I also hate being forced to do, and which worries me about the effect it will have on my general health. I used to manage more than the recommended five a day, now I'm lucky if it's five a week. I absolutely hate doing this so I totally understand your reluctance to give up your way of life. I feel that Crohns is forcing me to participate in animal cruelty as well as damaging my life in so many other ways and that makes me feel bad when I think about it - which I try my hardest not to do but it's unavoidable some times when you're abandonning strongly-held principles.