I'm new here

[cynleamit]

Hi all.

I am new to this forum as of tonight. I am hoping to gain some insight as to my disease and what others are doing to cope with it.

Here we go:
I am a 36 year old high school teacher. Last March (2011) I had a really wicked case of cramps. I spent most of the night on the toilet throwing up and having diarrhea. I attributed it to the fact I might have had food poisoning. I had a few more attacks like this in the next couple of months. When I went to the doctor, she sent me to the emergency room. I eventually got an ultrasound and found out I had gallstones. Okay, not great, but not too bad. I was quite careful with what I ate for the next few months (fatty foods really set me off). I had my gallbladder removed this past October.

Well, after my surgery, I was getting cramps again. I went and saw my surgeon, who told me to go to emergency if it happened again. I ended up going the next week to emergency and spent three days there (where those in the hospital did not do a lot of tests on me...but that's another story ). The next week I had to go again. I went to a different hospital and they finally did some other tests (MRCP, CT scan). They told me that my ileum was inflamed. With the help of some doctor friends, I was able to go see a gastroenterologist, who told me my symptoms were like those with Crohn's.

When I have an attack, I get major cramps in my lower abdomen. It actually feels like a charley horse where the muscles get really hard. Then the muscles relax and I get some funky sounding noises coming from my tummy. It sounds like I've got an alien in there. It seems right now I'll have a few good days with no symptoms, and then I'll have one or two bad days. On days where it is really bad, I will sometimes throw up 7 or 8 times overnight. With my gallstone attacks, I lost 20 pound before my surgery. I've lost 13-14 pounds after with with the Crohn's symptoms. I was not that heavy to begin with (140 pounds), and now I'm down to 107. I cannot seem to put any weight on. If I do put a couple of pounds on, I will have an attack, and there lose them again. It has kind of wreaked havoc on my work as well. Thankfully I've got good administrators that are understanding.

Right now I am on budesonide and have been since December. My GE says that Crohn's right now is a 'working diagnosis' At the end of March I am going to go in for my first colonoscopy, and will find out if Crohn's is in fact what I have. My doc has told me that if indeed it is Crohn's, he wants to put me on immunosuppressive drugs. I'm not sure if this will be the actual drug, but I'm about 80% positive he will put me on Humeria. Does anyone know (or has been on it) what it is like? I don't really want to be on medication for the rest of my life. I would also like to become pregnant in the next year or so too. Is that going to be a big deal?

If anyone has some insight, I would greatly appreciate it. Thanks a bunch.

 

[BrunofromCroatia]

Hey... This is kinda funny, me - 17 year old boy giving advices to you. Anyway.. I was diagnosed in July 2011. After all examinations ( colonoscopy, gastroscopy, abdominal ultrasound, rectal examination, urine and blood tests ) doctors told me i have Crohns. I was put on a Modulen IBD enteral nutrition 2,5 liters per day for 8 weeks and trust me its a life saviour. Basically you cant eat anything, you just drink that + water. My blood results after were amazing. No crumps. No diarrhea. No temperature. Everything was fine again. I started eating slowly and now 6 months after i eat everything, i dont have crumps, i still drink Modulen ( 250 mililiters per day ) cause its good for bowels. Im happy, really. So the advice is: ask your doctor for Modulen Nutrition by Nestle. I recommend it to all. It really saved me. 90% remission proven. If you can handle it do it. ( If i could, and im 17 years old, you can do it too ). Currently im on Imuran Azathioprine 3× 50mg per day and Pentasa Mesalazine 6 × 500mg per day. Imuran is immunosuppressive drug and its very important in treatment. In Crohn's disease the immune system destroys our intestines as in normal healthy person it does not do that. Imuran helps to reverse the immune system that it protects us as with the others and it succeeds. So ask about Imuran too. And ofcourse the eating plan is the most important. HEALTHY FOOD. No junk food, no carbonated drinks, no alcohol, no fried food or roasted. Just cooked meals, vegetables and some fruits like apple, bannanas, tangerines, oranges etc. You can look it up on internet about eating plan for Crohns. I really wish you all the best with it. Have faith!

Bruno.

 

[cynleamit]

Thank you Bruno for your reply.

I will definitely talk to my gastroenterologist about the Modulen. I do try and eat healthy, sometimes though it is just not possible. I find that processed foods really affect me (lunch meats, hotdogs), and I make a conscious effort to stay away from those. Right now I have to stay away from citrus fruits as those affect me as well.

Hopefully at the end of the month I will have some closure on what is in fact wrong with me. If I can be on my road to recovery, that would be great.

Thanks again.

Cindy

 

[Angrybird]

Hello Cindy and welcome to the forum :bigwave: Have you noticed any improvement on the Budesonide? I agree with Bruno about looking at diet and perhaps trying a liquid diet - even if you do this for a few weeks only is definetly give the bowel a chance to calm down. Check out our diet sub forum for more info on this and to also get tips on other foods to perhaps look at and avoid - things with pips and seeds are not good as they irritate the bowel. We are all different so keep a food diary as what affects you may be alright for me.

Also I would ask about why Humira is being suggested at this stage. This is a biologic and usually comes into play if other drugs have not worked..... Imuran is what I am on and I have been told that I am fine to be pregnant on this (I too want to start a family soon). Check out our treatment forum as well to get info on meds thwt can be used for treatment, at least then you will be able to discuss all options with the GI when you next see them.

Hope you get the answers soon hun, keep us updated on how things go.

xxx

 

[Dutch941]

Hi ...Cindy....I am new to this world as well...my son diagnosed in December 11.....I'm still gathering the information we need much like you but the one thing I would suggest is to stand up and demand the required tests happen ASAP. From my perspective it makes little sense to wait for a colonoscopy since I was told the results of that and the included biopsy are the most reliable indicators of your condition.. In our case we were told we needed to investigate in the near future....I told the dr "were here right now". If there's investigation necessary there is no time like the present. We were then marched right to the hospital and admitted...4 days later all necessary tests were complete and we were on the road to solutions...just food for thought...

 

[Ever Hopeful]

Hi Cindy. I noticed you're a Winnipegger too! I'd love to connect with you, if you're looking for someone to talk to. My story is also posted in here, if you want to have a read. I've only joined the forum fairly recently. I think you might be able to click on my name to private message me, if you want to. I tried on your name, but the link doesn't come up.

Ever Hopeful (Tracy):ghug:

 

[cynleamit]

Have you noticed any improvement on the Budesonide? I agree with Bruno about looking at diet and perhaps trying a liquid diet - even if you do this for a few weeks only is definetly give the bowel a chance to calm down. Check out our diet sub forum for more info on this and to also get tips on other foods to perhaps look at and avoid - things with pips and seeds are not good as they irritate the bowel. We are all different so keep a food diary as what affects you may be alright for me.

Also I would ask about why Humira is being suggested at this stage. This is a biologic and usually comes into play if other drugs have not worked..... Imuran is what I am on and I have been told that I am fine to be pregnant on this (I too want to start a family soon). Check out our treatment forum as well to get info on meds thwt can be used for treatment, at least then you will be able to discuss all options with the GI when you next see them.


Hi AngryBird.
It really depends on the day if the budesonide works. I'll have a few days where everything is great, no cramps, only a bit of diarrhea (if you can really call it that), and then I'll have a day or so where it would feel better to stick a sword in my belly and commit hari-kari. I did have a day a couple of weeks ago where I forgot to take my pills in the morning. Wow, was the afternoon not fun. I really make sure that I take my meds.

I think I'd be put on Humira as I've seen a couple of case studies by my gastroenterologist, and that is what he put other patients on. It could be something else for all I know, its more of a stab in the dark right now. I'll find out at the end of the month. I will definitely check out the meds forum. I'm still trying to figure my way around this.

Thanks for everything.

Cindy