Crohn's 14 years and would like some advice

[Davidevans2112]

Hi.

So I was diagnosed with Crohn's when I was 8 and am now 22.
It was never really an issue...or I didn't consider it to be, at least. But I'm going through the worst flare-up ever and have developed some manifestations of Crohn's that I never had before- namely fissures. Being 8 when I was diagnosed I didn't exactly look into it any but now I am. so if anyone has advice on the following, that'd be grand:

Low-residue or SCD? Any ideas? I'm currently on the SCD which is tough but seems to work a bit but the low-residue seems like a more achievable long-term diet for me.

I believe I read somewhere about research indicating that Crohn's is, essentially, an immune disorder. Is that right? Please excuse what might well be a 'duh' moment. If it is, though, does anyone find any problems with other minor niggles and problems exacerbated by a low immune system? I don't ever seem to get colds or anything....maybe minor infections of whatnot. Or is this totally un-related?

I should say at this point that I also have the extreme displeasure of having suffered the last decade or so with a form of depression- health anxiety disorder. Or, if you will, hypochondria. Which is far worse than anything Crohn's has or probably ever will do to me. So it does leave me obsessing about little things that are probably Crohn's-related.

And also- anyone find anything to kinda counteract being so tired? Or is it just get up and go?

Does anyone eat or take anything to make up for the blood lost due to fissures? It does look like a lot but maybe it isn't all that. These might sound like daft questions but maybe they make sense.

Ta.

David

 

[Trysha]

Hello David,
Welcome to the forum.
Feel free to ask any questions on this forum, there is no such thing as a daft question.
Blood loss needs to be reported and you should be having regular blood work to ensure you are not anaemic and to treat if you are.
Crohns is an immune disorder and it results in producing too much reaction by way of inflammation which can be excessive at times.
Like you I do not get colds or flu very often and this could also be related in a way.
Diets are a personal thing for some people and some are helped by different diets, and avoiding certain foods if they cause problems.
Sometimes the GI will prescribe certain diets in specific circumstances.
A low residue diet can be helpful where diarrhoea is a problem and may help to give a measure of control.
If you find it works best then thats the way for you to go.
You should be in touch with your GI about following any kind of diet.
Fatigue can also be related to Crohns as well as diet and if you are losing blood this too can contribute.
Perhaps it is time to check in with your docs and get some blood work done to check your hemoglobin level as well as other parameters such as Vit B12, Ferritin levels and
general blood picture.
Hugs and best wishes
Trysha

 

[Jennifer]

Hi and welcome to the forum! Lots of questions and I'll see if I can be of any help.

For starters yes Crohn's is an autoimmune disorder where our immune system is overactive. What happens is our body naturally goes after all the bad bacteria yet it doesn't stop so like a serial killer it kills off the good bacteria as well and then starts attacking the body itself. Hence why immune suppressing medications work so well.

For some people they hardly ever get sick and others get sick pretty often. Just depends on the person.

So since our immune system attacks and attacks repeatedly it can cause inflammation in the area that's being affected. Repeated inflammation causes scar tissue to build up. Both inflammation and scar tissue make absorbing nutrients that our bodies need to be difficult to almost impossible (impossible for scar tissue but our entire digestive tract is not filled with it thankfully). So most people require supplements to get the vitamins and nutrients into the normal levels. Blood work will show what your levels are.

On that note, being low or deficient in nutrients can actually cause depression and fatigue along with a swarm of other complications. So what you'll want to do is have your vitamin levels checked for (write this down) Iron, calcium, potassium, magnesium, vitamins A, B, C, D, E, B12, ZINC, Magnesium, and Folic Acid (if I'm missing any someone chime in). You can have your regular doctor do this or (oh please say you have one) your GI specialist.

Now, fissures are something I have never dealt with but I know they can be both inside and outside the body. What I do know is that blood loss is never a good thing. It can make you VERY tired and I don't know how much you've lost, for all I know you could need a transfusion. What has your doctor (who are you seeing? Is it a GI?) said about it? Are you on any medication at all? What tests have you had done recently?

As far as diet goes low residue is a great start. If you want to try something else later on then more power to you. Eating healthy is always a great thing with or without Crohn's.

 

[skippy111]

If you have a fissure on your bottom, it could be a fistula. A fistula is the outward part of what is growing inside of your rectum or colon. It could develop into a stricture or even rectal stenosis (that is what happened to me)

Anxiety, Depression, Fatigue, are all symptoms that your chrons is flareing as with the lack of energy.. If you have inflamation, then that means your body is not absorbing the nutrients.. so no matter how good you eat, it is all just going through you...

Have you lost any weight?

The two things that should be red flags are the fissure and the blood in the stool. You should be safe and call your GI and advise him of your symptoms.

 

[Davidevans2112]

Thank you all for your replies.
Taking supplements is something I never really looked into...fortunately I have an appointment with my doctor this afternoon so I will mention this to him and see what he suggests. Ditto for the diet, I'll see what he suggests. I went to a private dietitian when I was young, too young to really remember, and he reccomended a diet that I am guessing was essentially the SCD as I remember it was expensive! I'm not sure if you have Genius (gluten/wheat/dairy-free) bread in the states but here it's 3 times the price of a standard loaf.

I'm not on any medication currently for Crohn's, though I do take Prozac for aforementioned depression, though I was until recently on slazopyrin but this never did me any good.

I guess anything to counteract the fatigue and depression- thanks for the tip about vitamin supplementation to help with depression- would be great. I feel like I'm just getting Crohn's for the first time now as it's only just affecting me so much as to limit what I can actually do. But I'm sure you can all empathise.

Many thanks.

D

 

[skippy111]

you shouldn't really take any supplements unless your Dr advises you to,

 

[Davidevans2112]

OK. Thanks- I'll ask him today if he thinks I should or not.

 

[Jennifer]

They need to run blood work to see if you need it first and then they'll help you figure out how much you actually need and then check your levels again to see if its working or needs to be adjusted. Certain ones like B12 and Iron can be given either by shot or by infusion if you aren't absorbing it at all.