Recently diagnosed

[Linney]

Hi all, I am new to all of this and very interested to read everyones stories, comments and experiences. For many years I thought I had IBS but when the constant loo trips became unbearable my GP referred me to a GI specialist who did the usual tests (cameras everywhere) and x rays and told me I have Crohns. So far I have had a treatment of steriods which was great until I started to come off of them (quite common I understand), and Pentasa. In November I was admitted to hospital with a partical bowel obstuction and put back on high dose steriods and low residue diet (boring). I am now down to low steriods (loo trips becoming more frequent) and low fibre diet (not quite so boring). I have also, today, started on Methotrexate. I have read up on this drug and have to say am quite afraid, it is a serious drug with so many side effects. Have to say after reading many stories my Crohns seems to less painfull than some of you, but I have noticed that I do get painful joints when I get tired and I get tired easily. I had no idea this was another symptom of Crohns. I also cannot understand why everyone seems to suffer with weight loss except me. The amount I eat always seems a lot less than the amount I expel but the only time I have lost weight was while I was in hospital and on a drip.
Would welcome any comments and advise from 'old Crohnies'

 

[Peaches]

:welcome: Linney!! You are not the only one who doesn't have a lot of weight loss. I was always skinny until I was diagnosed. After I started taking all these meds - weight gain!! Some of it is from the medications, some if it is from my gut being healthier than it has been my entire life probably. And, some of it is because of my age I am sure Try not to get too mentally hung up on that - it may mean that your disease is not as aggressive as others - which is a good thing.

Glad you have found us. Take a peek around the forum - there is a lot of good information already contained here - and if you can't find what you are looking for - just post a question and we'll all jump in!

 

[imisspopcorn]

:welcome: Linney.....

There are quite a few people here on Methotrexate.

The fatigue is sometimes worse than any thing else for me.

Good luck.

 

[tamesis]

Welcome Linney!

 

[pain in the butt]

Welcome Linney, not sure about that med. need to look it up myself. As far as weight I'm far from skinny I struggle with weight and with these new pred. its making it worse. Try not to let it bother you and I'll try to do the same. We have enough to worry about but I do understand.

 

[Pirate]

Welcome to the Forum, Linney. I for one can comment on the wieght lose. I still have my girlish ....I mean manly figure.

Seriously, the only time I lose wieght is when I have to do a liquid or low residue diet. WhenI'm in a flare I almost always have pain and my joints ache, but that's because of all the Pred I took over the last 24 yrs.

 

[CrohnsHobo]

Welcome Linney! I start on the Methotrexate tomorrow. I try not to even look at the side effects. Out of sight out of mind I suppose.

 

[Crohn's 35]

Hi Linney Welcome!! Yeah I am an old crohnie lol, more ways than one. I was on methotrextate for about 5months and it did works some but it gave me headaches and sometimes nausea.. Everyone is different with meds, we all have to find our "happy combo" to see how our bodies react. It is hard to ignore alot of side effects but ALL meds must list side effects even if the person on trials had a placebo.. If you find it isnt working, try Remicade or Humira. I always read my meds and what it CAN do but if you don't you are going to pay in the worst way. A catch 22. You have come to a place where we can all sympathize what you are going through and I have had Crohns a long time and I still learn something new hear alot. Being Canadian our FDA is very slow to approve drugs, so I see how others react. But like any med or disease we all react differently. Glad you found us, stick around!

 

[Linney]

Thanks for all the replies, it is so good to know there are others who understand out there. Took 1st does of Methotrextate yesterday and by evening I was so cold even with the heating up, and by bedtime I ached all over (bit like flu). Knackered at work this morning but the aching had gone. Still quite cold, but on the bright side no nausea so far !

 

[Crohn's 35]

Good stuff Linney, here's to hoping it works for ya!!!