Hello! First post!

[Roy1989]

Ahoy!

I'll apologies in advance for the proceeding wall of text.. But thanks to you if you take the time to read!

I have just signed up today after lurking around the fringes for quite some time. I though that I might as well get started here and I look forward to participating in the rest of the forums .

I was diagnosed with Crohn's Colitis in June 2013 after a hospital admission in March of that year for a bowel obstruction. However, I have likely been experiencing Crohn's symptoms for 10+ years (diarrhea, flatulence, pain/discomfort).

Since then, I have been admitted a further four times for the same issue - bowel obstruction in either the terminal ileum or the colon.

I am currently only taking Pentasa (Mesalazine) 2gm twice a day, and am in the early stages of a course of prednisone - horrible stuff, I hate it!

I have in the past taken Sulfasalazine, which was then "upgraded" to the Pentasa. I have also previously taken azathioprine. However, this was switched to Methotrexate due to the side effects.

I have again had to stop taking the Methotrexate due to the severity of the side effects. My gastro may now consider Humira if appropriate.

I have had two colonoscopy's. The latest was done during my most recent hospital admission (a week ago). A 16mm dilation of the colon at the site of the obstruction was also performed. I most likely will have another, more "adventurous" dilation performed in a few months time.

Additionally, I have just been given a working diagnosis of "Idiopathic Hypersomnolonce". As the name suggests, the cause is unknown. However, the symptoms which include fatigue, excessive sleepiness, mood disturbances and cognitive deficits or "brain fog" may indeed be caused directly by the Crohn's. Alternatively they could be a side effect of the Methotrexate, or it could simply be another, stand alone, tricky thing to treat.

Please let me know if you have any questions! I'm looking forward to getting to know you all.

Also, a quick heads up. I love puns. The worse the better. I'm just glad that the disease I have opens up a true plethora of shitty puns.

Finally, I live in Sydney Australia, work full time in insurance (please don't hold that against me) and beards are great.

 

[Jessie_76]

I'm just glad that the disease I have opens up a true plethora of shitty puns.

First of all I love the word plethora, and the way it rolls off the tongue, and second "shitty puns." A sense of of lighthearted humor goes a million miles for well-being. I have laughed while crying over the seriousness and hilarity Crohns disease can prevent.

Hugs and again WELCOME!!!!!!!

 

[Hope345]

Welcome to the forum. It is good that you are moving forwards and getting support to.

One thing that I thought of was your fatigue. When you have such severe inflammation. your body is busy trying to fight and it may not be absorbing the much needed nutrients that you need.

As you have probably already figured out, there is no one way for everyone.

Our daughter has had the Remicade treatments and I believe the biologicals (Remicade, Humira) serve a great purpose but may not be for long term use. Hopefully they can get you on track. The immunosuppresant drugs work at stopping your immune system from attacking you.

The other suggestion may be to eliminate all dairy and wheat. This sounds excessive but it has made such a difference for my daughter who has Crohns/UC. It is actually like the elimination diet/palio diet all in one. After three years, this seems pretty minor and she has improved by 75% .

When you are ready: consider seeing a naturalpath. This is a completely different concept of bringing up your immune system rather than bring it down. We have done both now.

Wish you the very best and glad to help in any way.

 

[Ali29]

Welcome Roy - sounds like you have a great sense of humor - a wonderful thing to have when sometimes these diseases really bring us down some days!! :ghug:

 

[KyleB]

Welcome to the forum

 

[gotumtum]

Welcome

I am undiagnosed at the moment, but I do know that Gluten for me means exactly this: "fatigue, excessive sleepiness, mood disturbances and cognitive deficits or "brain fog"

Although mood disturbances may be a little too kind a way of putting it - maybe grumpy as hell would be more accurate - although I do know of two other people who find it makes them really depressed - might be worth trying a month or two off it just to see? Oh, and for me it is gluten, including oats, rather than just wheat. It takes about 6 weeks for my 'fog' to clear, but I am a different, better and much nicer person off the stuff!

Best wishes with your journey.

 

[gotumtum]

Also thought I would add that I test negative for all celiac / gluten tests. Still makes a difference though. But cognitive deficits is the right word - lots of wandering around, trying to figure out what I was meaning to do - putting car keys in the fridge, body wash in hair, shaving one armpit twice. Vegemite and honey on the same piece of toast - and nothing on the other. It is like having one brain lobe tied behind your back!

(Can you tell I'm on the gluten at the moment? - sorry this is a bit garbled!)

 

[Roy1989]

Welcome to the forum. It is good that you are moving forwards and getting support to.

One thing that I thought of was your fatigue. When you have such severe inflammation. your body is busy trying to fight and it may not be absorbing the much needed nutrients that you need.

As you have probably already figured out, there is no one way for everyone.

Our daughter has had the Remicade treatments and I believe the biologicals (Remicade, Humira) serve a great purpose but may not be for long term use. Hopefully they can get you on track. The immunosuppresant drugs work at stopping your immune system from attacking you.

The other suggestion may be to eliminate all dairy and wheat. This sounds excessive but it has made such a difference for my daughter who has Crohns/UC. It is actually like the elimination diet/palio diet all in one. After three years, this seems pretty minor and she has improved by 75% .

When you are ready: consider seeing a naturalpath. This is a completely different concept of bringing up your immune system rather than bring it down. We have done both now.

Wish you the very best and glad to help in any way.

Hi Hope, thanks for your response.

I have in the past removed a substantial amount of dairy from my diet without any benefit. So now I'm back to consuming a reasonable amount on a daily basis.

In fact, I have never actually noticed any significant problems with any particular food (except for a kebab at 2am on a Friday night, although those days are now over).

However, the concept of radically changing my diet is so bizarre and seemingly impossible that I am yet to go down that path. However, It'll be the next thing to try if whatever my gastro wants to try next doesn't seem to do the trick.

 

[Roy1989]

Also thought I would add that I test negative for all celiac / gluten tests. Still makes a difference though. But cognitive deficits is the right word - lots of wandering around, trying to figure out what I was meaning to do - putting car keys in the fridge, body wash in hair, shaving one armpit twice. Vegemite and honey on the same piece of toast - and nothing on the other. It is like having one brain lobe tied behind your back!

(Can you tell I'm on the gluten at the moment? - sorry this is a bit garbled!)

That's really interesting! Something that I'll definitely bear in mind thanks!

The brain fog/confusion can be horrible sometimes. Constantly having to do things a second time because I missed a step, unable to find the right word in a sentence, completely trailing off and forgetting what I was talking about and ending up quite embarrassed. It's even worse if it happens at work in the middle of a phone call.

I've been prescribed Modafinil by my sleep physician, but to no real benefit.

 

[gotumtum]

Yeah - don't really matter how much sleep I get - I still want more and I get up just as tired as I went to sleep. I get really grumpy at those stupid bed ads where people 'jump' out of bed in the morning all bright and shiny.

What I really found interesting, is that the first time I tried going GFree I did not notice the difference until I went back on the gluten, and then realised how much I had improved without realising.

I know what you mean about work - I had real trouble leaving answerphone messages and giving change.

Going gluten free can be daunting and is much easier to do with a little preparation. Lunches are the most difficult, but now there are many more gluten free products that taste good. I am not sure if you can get them in Aussie, but vogels gluten free bread is good, and Abes bagels do a gluten free version which is amazing and freeze really well if you cut them in half and then toast from frozen. GF pasta and wraps are good too.

A well stocked freezer helps a lot, and I eat more eggs than I used to as well. -let me know if you are going to go GF, and I can give more tips if you want

Although it can be daunting, it is well worth it - the only reason i am back on the gluten at the mo is for more testing.:ybatty: - And I am really regretting it and wondering if it is all worth my sanity!!!

 

[Catherine]

Welcome to the forum.

Just had to reply to your post. I am from Melbourne, Australia, mother of 3 teenage girls the eldest dx with Crohn's. I also work full time in insurance.

 

[Roy1989]

Yeah - don't really matter how much sleep I get - I still want more and I get up just as tired as I went to sleep. I get really grumpy at those stupid bed ads where people 'jump' out of bed in the morning all bright and shiny.

What I really found interesting, is that the first time I tried going GFree I did not notice the difference until I went back on the gluten, and then realised how much I had improved without realising.

I know what you mean about work - I had real trouble leaving answerphone messages and giving change.

Going gluten free can be daunting and is much easier to do with a little preparation. Lunches are the most difficult, but now there are many more gluten free products that taste good. I am not sure if you can get them in Aussie, but vogels gluten free bread is good, and Abes bagels do a gluten free version which is amazing and freeze really well if you cut them in half and then toast from frozen. GF pasta and wraps are good too.

A well stocked freezer helps a lot, and I eat more eggs than I used to as well. -let me know if you are going to go GF, and I can give more tips if you want

Although it can be daunting, it is well worth it - the only reason i am back on the gluten at the mo is for more testing.:ybatty: - And I am really regretting it and wondering if it is all worth my sanity!!!

I may just take you up on that offer in the near future if I do decide to go GF .

To let you in on a little more info: My GP referred me to a sleep clinic, a sleep test was performed, and I was subsequently diagnosed with idiopathic hypersomnolence.

An overnight polysomnograph returned all normal results, with not apnea, restless legs etc identified. The following day, a multiple sleep latency test was performed. An average sleep latency of 10 minutes is considered normal. below 8 is of concern. My sleep latency was 6.

I'll probably discuss this in more detail in some of the other fatigue threads. But if you have any more questions about it please let me know.

Depending on the resources available to you, I'd highly recommend requesting a similar test to the one I had. Whilst it hasn't given me a cure for the fatigue, it has given it a label/title which in turn allows for the symptoms to be treated easier, and helps for family, friends and colleagues to not judge you as harshly when they think you're simply being lazy.

 

[Catherine]

Have you had vitamin d and b12 tested?

 

[Roy1989]

Have you had vitamin d and b12 tested?

Indeed. I've had the full work up. Vit D was low for awhile but has been improved with supplements. B12 has always been fine.

All other related tests have come back all ok including thyroid and adrenals. There is no apparent underlying virus etc.

I am extremely fortunate and grateful with where I live that I have a great team of doctors who are all very thorough and take the effort. God knows what I'd do if that wasn't the case! A scary prospect and I really feel for people who report bad experiences with their doctors.

 

[Catherine]

My daughter had low normal b12. We were told supplementing would not hurt by the gp. So we started supplementing with b12 and b multi.

When the GI retested the levels which has increased to low 400. I asked whether we should stop supplements the answer was no.

Still don't understand why her hemoglobin levels are higher when taking b12.

 

[Roy1989]

My daughter had low normal b12. We were told supplementing would not hurt by the gp. So we started supplementing with b12 and b multi.

When the GI retested the levels which has increased to low 400. I asked whether we should stop supplements the answer was no.

Still don't understand why her hemoglobin levels are higher when taking b12.

Ah that is curious, I'll certainly question the B12 with my doctor next time I see him.

I've just tried to find my latest blood results to see where my B12 sits but I can't find them at this moment. It'll be interesting to see where they sit, and if I can get any relief with extra supplementation.

Thanks for the Tip!

 

[nursehill]

I take B12 monthly sometimes bimonthly. This does not affect my hemoglobin levels. My hgb levels run as low as 6.4. Transfusions come of course but, no increase due to B12. Iron supplements help but usually get blood transfusion or Infed (iron) infusion. I hope you are feeling better soon. The fatigue is terrible and very difficult at times. Frustrating when your mind wants to do something and the body says hold up here...

 

[pinguu1982]

Welcome to the forum Roy....I have found a good sense of humour gets you a lot further than pain killers sometimes. If I cannot laugh then I may as well just give up.

 

[Roy1989]

Hello again, just thought I'd quickly drop in here to let you all know that I haven't left the forums.. I got a little side tracked with two more hospital admissions, followed by two more colonoscopies and another dilatation. I have another dilatation scheduled for 6 weeks time.

On top of all of that I also had to move house! (maybe a contributing factor to the obstructions ... ).

Anyway, now I'm settled in to the new place with steady internet, I should be a bit more active around these parts.