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Crohn's Disease Forum

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Joined
Nov 5, 2011
Messages
110
Location
Ireland
Finding help.

Hi everyone. Will try to keep this brief. I am a 24 year old man and have suffered with eczema and/or psoriasis all of my life, along with digestive problems and asthma(the last 2 not being so serious until adulthood). I was able to live a pretty normal life up until adulthood, with my teen years being my healthiest.

However, not long after i turned 18 i quit my job as a carpenter to play poker online professionally as i was making plenty of money and loved the high adrenaline and highly competitive atmosphere. The high levels of stress, total lack of exercise, fresh air and nighttime sleep along with the poor diet i was on however was simply too much for my gut.

I was told i had developed leaky gut syndrome and chronic fatigue and was headed for crohns. My eczema had gone from being a manageable inconvenience to being a full blown autoimmune disease, it was as though everything i ate would try to leach out my skin. It is so so so painful, but the worst part is how itchy it is, i cannot get a wink of sleep before the early hours, at which point my body is so desperate for sleep that i finally pass out despite the horribly uncomfortable itch.

I have tried many many different ways to improve my health, including the obligatory diets(have not eaten sugar, dairy, gluten or anything processed or nice tasting in over 4 years), fasting, colonics, supplements, immunosuppressant drugs, have consulted so many specialists, both conventional and alternative that i've lost count. I am now in a state where i have become totally reactive to all food.

I have eaten nothing but turkey and cucumber for the last 2 weeks, and am now beginning to build an intolerance to them too. I literally am on my last gasp. I weigh less than 120lbs and am 5''11. Right now i am receiving IV chelation to try to keep some vitamins in me, i am receiving past life regression therapy in the vague hope that it has some bearing on my situation but it seems as though no matter what i do things just keep getting progressively worse.

I spend about 16-20 hours a day in bed and since i cannot work, i am running out of ways to pay to for my deteriorating health. I was at one point prescribed with elemental SHS 028 Extra, but because it had glucose in it i never used it. I have heard from other users on the forum that it is very good. but i am unsure of how much to take daily(i have the non-flavoured sachets of powder) since it just says ''serving to be determined by your nutritionist'' or something.

Anyway this is more of a vent than a cry for help because i feel like i've tried everything. Thanks for reading. :) :(
 
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Hi SnowDay,
Sorry that you are suffering like that.
Do you actually have a diagnosis of Crohns (from colonoscopy and blood tests?) Leaky gut syndrome is a bit of a vague diagnosis. You do sound like you need to be on liquid nutrition at this point. It's more important for now that you get adequate calories and the right balance of protein, carbs, and fat, rahter than being concerned about whether or not there is glucose in the supplement. There are several great total nutrition drinks available - all easily digested. Once you build your weight back up you can choose your diet. Where is your eczema/psoriasis? If it's all over your body then you may be better off trying Infliximab or Humira which work well for both Crohns and also psoriasis. I hope you can get get a good gut specialist to help you. As far as the elemental 028, it should tell you how many calories in each sachet. If you aren't eating at all you need around 2000 calories worth per day.
There will be a solution out there for you.
Good luck.
 
Thx Handle. I recently got a colonoscopy but they told me that as far as they could see, my large intestine is healthy. I have not been diagnosed with crohns but i firmly believe that if that's not what i have, it's something very similar.

I see what you're saying about it being important to get the right balance of nutrition but i cannot tolerate any food that is high in carbs and my body is so super sensitive that i seem to react to everything i put in my body, and the nutrition drinks all seem to be sweetened with something or other.

I am at my wits end.
 
You may need an endoscopy, or other small bowel exam to find out about the rest of your intestinal tract. As far as not being able to tolerate too many carbs, the nutrition drinks are absorbed very easily, high up in the intestines, and usually don't cause the same issues as normally eaten carbs. It might be worth trying them out since your weight is of immediate concern. There are also things like the body builder protein powders (whey protein isolates etc). You need good nutrition. What happens when you eat carbs? Are fats/oils ok?
all the best.
 
i seem to tolerate fats and oils better than most other things. When i eat carbs my body breaks out in an uncontrollable itch.
 
cucumber is out for me, breaks my skin out in patches of eczema/psoriasis, as does the flavoured E028extra. but i need to dilute these, i also have a liquid diet, can't say its working well, but i've stuck with it for nigh on 8 years, with nibbles here and there too. surgeries mean things still dash straight through though.

i have been on just turkey before.

good luck, but i would get the rest of the gut stuff seen to, you need a barium follow through to ascertain what is going on.

best wishes
Diane
 
Hi SnowDay. Please get help from a doctor. More tests are needed. If you can get diagnosed, you can get the right meds to help you get better.
What country are you from? I am in the states.
Which immunosuppressant drugs have you tried? And did they do any good?
 
Hi SnowDay. Please get help from a doctor. More tests are needed. If you can get diagnosed, you can get the right meds to help you get better.
What country are you from? I am in the states.
Which immunosuppressant drugs have you tried? And did they do any good?

Hey Jessi. I have already been to many doctors but the truth be told, i am very mistrustful of Drs. and conventional medicine in general as every time i have given them free rein to help me, their methods have seemed to have either not helped, or made things worse.

I am not bashing doctors, i think they do great work and help a lot of people but for certain things(LGS isn't even recognised as a condition here in Ireland) i think they have their priorities wrong.

I tried the immunosuppressant drug Neoral. It helped a little at first, but then predictably it worked less and less and eventually left me worse than when i started it.
 
I haven't ever heard of neoral. That's a new one on me. I am taking Remicade. I'm now in complete remission.

I understand your apprehension about doctors maybe better than most people. I have always been the same. It took a near-death experience to get my stubborn body to the doctor for a diagnosis. Please, please, please don't give up. There is still hope. :hug:
 
I'm pretty sure neoral is just ciclosporin but with another name. Thanks for your support. I am feeling pretty desperate and scared ATM.
 
I know that feeling really well. But I didn't know about this forum when I was going through it. You're not alone.
 
The difference between medicine and alternative medicine is that ones been proven. You may say that putting drugs into your body is unnatural and we should live off the land (plant etc) But asprin is derived from the willow tree. Conventioal medicine isnt made by pot luck, but by mimicking nature.

I try and find the right balance with foods, yet I know its a long process and the drugs im on help a lot. Without them I would definately have had surgey or be dead. Its up to you, either go with the docs or dont, but i reckon at least try them until youve understood this disease fully
 
The difference between medicine and alternative medicine is that ones been proven. You may say that putting drugs into your body is unnatural and we should live off the land (plant etc) But asprin is derived from the willow tree. Conventioal medicine isnt made by pot luck, but by mimicking nature.

I try and find the right balance with foods, yet I know its a long process and the drugs im on help a lot. Without them I would definately have had surgey or be dead. Its up to you, either go with the docs or dont, but i reckon at least try them until youve understood this disease fully

Oh dear. I really did not want this to become a debate about conventional medicine vs alternative. To be fair sir, i have ''tried them'', I don't want to expend any energy arguing over this.

It seems as though i am already building up an intolerance to the Elemental, is there a similar product out there with no glucose or any other sugar???
 
i don't think there is, but if you could access a career dietician (hospital one, not a home study person), they could advise you. can you ask your doc to refer you. i'm sure there must be one for the diabetics etc.

i use Perative. its for crohns only i believe. however, all these feeds are very heavy with oils and i only learned from this site, rather than from gi's, that i still need to visit the loo a lot. yes, it still runs through. i was expecting to 'go normally'. not so. still have pain in abdomen, sore bum and fatigue, joints bad too. i can't say that liquid food is the answer. i would cut the cucumber myself. probably its got some fructose in it too. my skin is a mess if i eat that

good luck, and yes, no need for arguments, just a support forum.
 
i don't think there is, but if you could access a career dietician (hospital one, not a home study person), they could advise you. can you ask your doc to refer you. i'm sure there must be one for the diabetics etc.

i use Perative. its for crohns only i believe. however, all these feeds are very heavy with oils and i only learned from this site, rather than from gi's, that i still need to visit the loo a lot. yes, it still runs through. i was expecting to 'go normally'. not so. still have pain in abdomen, sore bum and fatigue, joints bad too. i can't say that liquid food is the answer. i would cut the cucumber myself. probably its got some fructose in it too. my skin is a mess if i eat that

good luck, and yes, no need for arguments, just a support forum.

Thanks. I am lucky in that i don't seem to have diarrhea as much as many. I also seem to react to oils less than most. It's all about my skin for me. If my body has a problem, my poor skin is the one who pays the price :(

If your skin is a mess when you eat cucumber, what do you eat? What is Perative?
 
Perative is a liquid feed fed through a gastrostomy (tube in abdomen into stomach) and a pump pushes it through at 50mls per hour. but very oily.

this sounds really silly, but, zinc at 50mg daily helped my skin a lot. its better to put the stuff into the body as on the body in form of a lotion doesn't work as well. i started to take zinc and strong B Vits to combate depression and funnily enough it got rid of skin probs associated with food. so great. intestine still hates fruit and cucumber. lovely stuff cucumber.
 
Thanks. I am taking 100mg of zinc per day, but i do suspect that i am not absorbing the supplements, unless taken intravenously.
 
When you can't trust doctors, you have to do your own research and tell them what you want done. At this point, if all you're doing is lying in bed all day, grab a laptop and look up everything you can.

Has going on something like Remicade or Humira been mentioned? I was at a point of no return, went on that for almost 2 years and am now on no meds.
 
I agree, it sounds like you need to start pursuing a diagnosis as the Leaky Gut Syndrome may have turned into something far worse. There are many more tests than colonoscopies that they can do. I know it's tough when you feel like the doctors won't help but you sound like you are at your wits end. To get treatment and financial support (disability) you've got to have a doctor and a concrete diagnosis. Start looking! Even if it take you trying ten different GIs to take you seriously, if that 11th will help you get your life back on track, I think it'd be worth it. That's just my opinion. I hope you start to feel better soon!! :hug:
 
Welcome SnowDay!

When I first read your posting yesterday, you got me thinking about how I could help if any.

Here is my thoughts; (i hope it helps)
I see my Crohn's Disease as a war with the enemy. The best strategy is to stabilize the situation as best one can through available doctors and intense research. Sometimes, I get so wrapped up in it I get overwhelmed and pull myself away and head to the "hills" or the beach, some quiet place for solitude, anyplace away from the home.

I listen to the silence for awhile, getting centered and grounded, doing my best so slow myself down to think more calmly and rational. I re-evaluate my priorities, to do lists, the pros and cons of situations and how I can BEST ELIMINATE the negative energy that invades my life. I focus on positive thoughts and energy and smile at my life and the people that surround me. Yes, I gave up on some friends and talk to some family not as much. I am happier now. Clean the clutter:>)

A Great website for Knowledge is National Digestive Diseases
Information Clearinghouse (NDDIC), http://digestive.niddk.nih.gov/ddise...s/crohns/#what

For diet, check out http://www.breakingtheviciouscycle.info/
Her diet changed the course of my disease by putting me in clinical remission.
I have made slight modifications to her diet, although I still prepare 90% of my meals at home. I do my best not to eat any processed foods. What you put in is what you are going to put out. So once or twice a month I fast a day, having only clear liquids. I learned sometimes its best not to make your digestion work and to give it "Bowel Rest".

First, it is important to get diagnosis. The sad thing about our disease is you can't see it. It is only when the surgeon goes in will they ever clearly dx our disease. How much can an MRI or CATScan really detail out?

Now that you have recognized the issues at present, you may journalize your life. It maybe the most cathartic life changer for you.

If I can help, please let me know.
 
Just a little update. I have been getting to sleep before 10pm and getting up at 7am(for a long time it was more like 4am to noon), cos i was told that your organs heal and regenerate between 10pm and 2am and your mental state(i assume this means helping with depression)gets replenished between 3am and 6am so it is more important to be asleep and not full of food between these hours. Feeling the benefits of this for sure.

Anyway i also started rebound exercise(mini trampoline, which is super easy)which helps the body get an excellent workout, i recommend it. I got my first Hydrogen Peroxide IV treatment 2 days ago and have been feeling great since. Anyone who has had this done, would love some feedback.

Still super sensitive to almost all foods but trying to stay positive and hoping my sensitivities will calm down. I have been relentlessly reading threads on this forum and i just want to say how great it is to be able to talk to and listen to people who are going thru similar hardships as myself.

Thanks guys and kudos to all of you. :)
 
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I am so happy that you're feeling well enough to exercise. Be good to yourself, though, and don't work harder than you can. Hopefully, you'll feel great in no time.

I honestly haven't heard of a hydrogen peroxide IV treatment. What does it do for you? I'm curious.
 
i haven't heard of iv hydrogen peroxide either. the bouncer i bought was the worst thing in the world for my joints and my intestine shoved everything straight through and i felt utterly pukey too. omg, i hope it all works for you
 
I am so happy that you're feeling well enough to exercise. Be good to yourself, though, and don't work harder than you can. Hopefully, you'll feel great in no time.

I honestly haven't heard of a hydrogen peroxide IV treatment. What does it do for you? I'm curious.

Apparently the HP IV oxygenates your cells. It's supposed to be great for a variety of illnesses.
 
So is it doing the trick for ya?

I really hope you feel well soon.

I've only had one treatment, i didn't notice any difference.

Thanks. :). I have never seen as much genuine and unrelenting compassion and support as i have on this forum :kiss:
 
You're right. I feel the same way. This truly is a family here. Start a new thread in a different part of the forum, and you'll meet so many nice people. :hug:
 
Ooooh dear. I have been eating nothing but turkey and cold pressed org. olive oil/coconut oil(to keep my calorie intake reg'd) for a few weeks and have had no reaction, however i started to show signs of some inflammation so decided i needed some starch/sugars/vitamins/minerals. I have noticed in the past that i don't seem to tolerate meat when i am eating starchy foods.

And now it seems it works the other way. I tried drinking a carrot juice yesterday to wean myself back onto vegetables and possibly some grains but i immediately had a bad reaction to the sugar. I'm pretty sure my body is overloading on uric acid from the excessive protein intake, now i am stuck, reacting to everything :(. I don't mind telling you i am really quite scared.

I am still getting vit C, vit B complex, b12, b6 and some other electrolytes and good stuff by IV on a weekly basis which i hoped would calm down my immune system enough to tolerate a wider variety of foods. Seems i'm just becoming more and more intolerant. :depressed: Is there no way outta this vicious circle?
 
Little update in case anyone would like to know. I have been on the best run of remission from symptoms for a long time. The last two weeks have been great.

I have been asleep by 10pm and sleeping well enough (usually only waking once briefly in the night which is great for me compared to normal) until about 7-7:30am, and still med-free(diet still very restricted though :().

My overall outlook on life has been a helluva lot more positive as well. This site has helped me out a great deal and taught me to appreciate the wonderful things i DO have rather than only focusing on the negatives.

I am still waiting on an endoscopy to find out more about what is actually going on down there. In the mean time i have been prescribed anti-histamines by a doc to relieve the intense itch.

They have been working a treat(to begin with, at least). Does anyone have any more info on antihistamines? Seems as though most people don't know much about them.

Thanks for reading and thanks for the support, everyone. :)
 
I'm really glad you're doing so much better! I hope it continues for a long time! :hug: And keep counting your blessings. You have a great outlook on life.
 
Well, good news. The Entocort has kicked in, took 6 days to take effect. But I am enjoying reduced pain/inflammation, a wider array of foods and beautiful, beautiful sleep , along with precisely 0 side effects....unlike pred, YEUCHH!

My GI told me that it's only temporary tho, That I can only stay on it for a few weeks, then it's back to her clinic for immunotherapy (a kind of vaccination against food as I understand it, for people who are super sensitive).

My results came back on the blood-work/stool sample that were sent off and apparently my body is in pretty good shape overall. The biggest problem is that I have an extremely small amount (virtually none) of secretory IgA, which as I understand it is the the first line of defense of the GI mucosa and is central to the normal function of the GI tract as an immune barrier.

This was caused by malnutrition/malabsorption/not enough good bacteria and having a very low BMI (i'm pretty freakin' skinny).

Anyway hopefully this treatment works and I can get back onto a balanced diet to build myself up and get a good cycle rather than a destructive one going. I'll keep you updated. Thanks again for the support, everyone .
 
Good to hear that you are doing better and have some answers/direction. I'll pray that you continue to improve!
 

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