Frequent lurker exposed - Hello

[tobyjug]

Hi folks,

after approx 18 months dipping in & out of this forum, gleaming as much useful information as I could, thought I would finally join you and say hello. So a real big thank you to everyone for helping me so much over that period. Also a big thank you to the UK NHS, where the staff have been absolutely fantastic.

I'm in my late forties, so this computer forum stuff/blogging is not really me, so bear with me and I'll give it my best shot.

Diagnosed April 10 with "mild to moderate" crohns. All really started with a visit to the local blood transfusion unit. They would not take my blood and told me to visit my GP without delay. First up they thought celiac, then pernicious aneamia, all tested negative. Final diagnosis came via pillcam and susequent endoscopy. Must admit my head was in a complete spin and also in denial for quite a time. No family history and was very active sportswise, so how could I be unwell.

Anyway name of the game is to stay mild to moderate, although I would say my symptoms have got slightly worse over the last year. Main symptons were nausea, bloating, weight loss, anemia with lack of energy/tiredness.

After a minor scare/flare, I'm back on budesonide, along with the usual suspects of omaprazole and pentasa. I was taken off oral B12 a few months ago to see how things go, so watching B12 symptoms very closely.

I'm back on an even keel and due to taper down with the budesonide, so fingers crossed all will be ok.

I am still learning all the time and trying to listen to what my body is telling me but as you all know, finding it very difficult at times. Its particularly frustrating that when I'm feeling well, I want to eat and drink the same as I was two years ago, but now understand thats not possible. I think this was at the route of my recent flare.

Anyway thats all for now and hope the story makes some sense.

 

[Terriernut]

Well then!! Welcome lurker! So you saw we didnt bite? We are glad to have you introduce yourself.

I sure hope they get you on the path to remission, and for a good long while.

What other things have they suggested to you?

 

[Astra]

Hiya Tobyjug
and welcome

I'm on the budes and pentasa too!
really hope it kick starts your remission and that you stick with us now!
lotsa luv
Joan xxx

 

[tobyjug]

Hi Misty, thanks for the welcome.

I know there will be no biting, unless I'm trying to flog something, only kidding.

They are keeping a very close eye on me, as I have regular visits with either the GI or my GP. Don't know if thats a good thing or not as they may know something I don't.

apart from keep taking the medication and watch what I'm eating, nothing else. I have spoke to them about lactose intolerance, but that was quickly kicked into touch. The reason I was questioning it was my stomach was not settling and I was attempting to find out what the problem was. They told me to take an extra omaprazole and that seems to have worked, so no more suspicions about lactose intolerance.

 

[Terriernut]

Its always a good idea to try to see what sets you off with Crohns. I mean some things are killers to about all of us, like popcorn. (i'd KILL for popcorn!)
But if you can find out what bugs you, eliminate it. Dr's say or not. Problem with us crohnies is, we're all different. You do what is right for you. Use a diary if that helps.

I hope you find years of wellness!! And that you stick around, I mean with us that is!

 

[tobyjug]

Hello Astra and thanks - Yeh I intend to stick around, although not sure if I'll be a regular poster, never really done this before so we'll see how it goes, but it is great to particpiate as some of the stories are very familiar.

After four weeks I'm now starting to feel normal again, so as long as I can stay of the beer, (which kicked it off) I should be ok. Had a greasy pizza last week and as soon as it was put down on the table, I new it was trouble. Thought I would give it a go, half way through gave up. It was quite funny as the waitress asked me if I wanted a doggy bag, got a strange look when I said no-thankyou.

That knoced me back a few days, saturday was spent lying on the couch. No more, next time will be a flat no. better walking away than feeling rough for the next few days.

Thanks again

Toby

 

[archie]

Hi Toby and glad you joined, i'm also glad you thanked the NHS they also looked after me very well last year when I was poorly I couldn't fault them the only thing was it was hard to get results out of them straight away!!! I had both private and NHS care and that was the biggest difference. I think it was in the NHS it was usually a reg or junior doc doing the tests and they were scared to comment whereas private its always a consultant and they just say it how it is. I hope you get onto the right treatment soon and start to feel better, again I was in denial for a very long time like you i'm also fit and healthy so was knocked sideways when I became ill. I'm now 100% better now and hope you get there too.

 

[tobyjug]

Astra - sorry joan, please forgive me, told you it would take a while.

Misty, I've already noted a few things and as you'll see above, it looks like

beer (which as a real bummer as I like a pint),
pizza, (I will have a go again, as long as the cheese and grease are very low)
crisps
red meat I try and avoid as well, particularly steaks, beef etc.
Pork seems to be ok as long as its well cooked.

toby

 

[Terriernut]

Toby....I'm in my late 40's (very, very late 40's) and I'm sure you can get the hang of it!

I eat lots of no=no-no's. I'm a glutton for punishment. You may find that different types of beer dont bother you. Once you are under control, give different ones a try. And for pizza, try cheese. I am not sure if you have the big D or the big C. So you'll have to tell us for us to help. You will find that there is NOTHING we dont talk about here so no reason to be embarrassed! We are kinda like the NHS...we have truly been there done that have the Tshirt and arent embarrassed! So dont you be!

 

[tobyjug]

hey this is easier than I thought.

Hi archie,

I'm interested in the fitness aspect and your views on where I go next. I did read several posts a while ago in the fitness page, but I've never got back into training. I was a reasonably keen runner before all this and I've tried a few times to start again, but the tiredness kicked in, so I gave up.

Have played 5's several times, but end up spending most of the time in goals. With the 5's it seems quite strange as it a breathlessness thats the problem not the general fitness. Also feel that my heart and lungs are going to burst after only a few minutes running at speed. Now that things are returning to normal I want to go running, but don't want to put myself back again.

Any views would be greatly appreciated

toby

 

[tobyjug]

Right here goes with the personal stuff. I'm cringing honest.

Constipation was a problem at the start, but I think the pentasa sorted that out, so its only occasional. Big D (sp!) is only a problem when my guts are in severe trouble, but its not really an issue. A few weeks ago I would have a mixture of very runny/watery D then semi-constipation, really wierd, but only lasted approx two days

Thankfully everything back to normal.

toby

 

[Terriernut]

Alright then Toby, thanks for that. When you have the big D, do eat cheese. When you have the big C...drink beer. Or at least give it a shot! As you nose around you'll find different things work for different problems.

Although it sounds to me, you might have a bit of a stricture. (like me and others) You just really need to find what works for you mate!

 

[archie]

Hi Toby when I was poorly last year I literally gave up running (like we're not talking marathon lenghts but 3 miles etc) due to fatigue and sickness this was in the very early stages, but I always walked a good amount everyday and I have a physical job so on my feet all day long. I literally was yawning my head off esp after lunch!! I had an abscess and perforation but once that got treated they stuck me on pred so I naturally started to feel better and more energetic anyway I was never at full throttle but still tried my best to keep semi fit with power walking pilates etc every day if possible ( I also wanted to beat the moon face!!). I then had surgery and once I recovered about 6 weeks later I rejoined the gym and now back at it everyother day. The fatigue took ages to go and TBH I just felt I was getting old but now def back to a good level of fitness again and running 3 miles cycling etc. I'm lucky as I had surgery which so far has sorted me out, but if you have a diseased bowel your body has to use all it's resources to 'heal' that and thats why your energies low. Once they get you on a good treatment programme hopefully you'll naturally feel better but my advice now is keep at it little and often and to a lessor extent than before.

 

[archie]

I'm near;y 40 by the way!!!! OMG can't believe how much i'm in denial about that...

 

[tobyjug]

Thanks archie for taking the time to reply.

Fatigue is definately an issue, just now not too bad, but regularly at work around 2pm ish, whack, no energy and struggle to keep going.

I've started to play golf regularly, not exactly energetic stuff, but sometimes think this is the the limit of my exertions. If I keep going the way I'm going just now, Im going to try again in a few weeks.

On a postive note, I do sleep very well every night.

toby

 

[Misty-Eyed]

Welcome! Glad you finally decided to say hi and out yourself! You seem to be a natural poster so keep up the good work!

I hope things continue to go well for you

 

[archie]

2 oclock dip was always the worst... yes I too sleep well even qhen on the pred!! good luck with the golf

 

[tobyjug]

Hello Michelle,

I noticed you have crohns colitis on your signature. I'm curious about this as according to my GP, he has a few times mentioned that I have crohns colitis.

However my GI said there was evidence crohns was on the illieum. I'm no expert, but I thought this was two different types of crohns. Next time I'm at the docs, I'm definatley going to ask this question, so was wondering if you have the same thing.

rergards, toby

 

[xJillx]

Hi Toby and welcome! I am so happy you FINALLY decided to join! I think you'll be happy you did.

I am crossing my fingers and toes you successfully taper off of the budesonide.

 

[Misty-Eyed]

Hi Toby,

Yes, you are right. If you had crohn's in the ileum too, you'd have ileocolic crohn's rather than just crohn's colitis.