I am finally here...

[CTchrohner]

I was diagnosed with Chrohn's after almost a year of testing that felt like 5 years when I was a sophmore in college. After a minor polup operation I was on the mend for another 5 years until I was able to be in remission. Both my pregnancies were amazing - the best I ever felt. Remission lasted 14 years and over the last 2 years I have been under its wrath again. I have been on Remicade since the beginning and hated it the first time it was administered. I was with an insensitive doctor that was only concerned about the volume of utilization of such meds, procedures and hospital admits. Just this week I was able to find a GI doctor who finally listened to me and agreed the Remicade was not a good fit. I am now starting regular meds/pills and feel like I have been given a fourth chance!

I have been in denial with my symptoms trying to justify they were because of diet, hormones or mental state. I found this site and was happy to see that I wasn't alone and that I could possibly find comfort and relief with all of you. I am excited to ask questions and read others great advice; mostly to have the positive support that although this is a disease that tasks us to mentally and physically run a marathon, there is a group I can count on to understand, relate and let me have my bad/whiny days and then move on...

I suffer from anxiety, muscle/joint ache and one real sexy bloated belly :ysmile:

I am usually not a forum type person but I am here and I am hopeful!

p.s. the best User Name I have seen is "GrumpyGuts" and the thread title that made me laugh/sigh the most was "I was taken down by a ham and cheese hot pocket"....so great!!:rof:

 

[Trysha]

Hi CT
Welcome to the forum.
It sounds as if you have had your share of ups and downs, so hopefully you are now
moving to an upward trend.
You will find plenty of help on the forum and will be able to count on understanding and support
of fellow members.There is also a lot of information you can access regarding treatments, diet etc.
Feel better soon
Hugs and best wishes
Trysha

 

[Angrybird]

Hello and welcome to the forum :bigwave: Really pleased you have joined as there is a wealth of really helpful info here and plenty of support when having a bad day. Out of interest what problems were you having with the Remi? What meds are you on now and how are your symptoms at the moment? Also have you ever had your vitamin levels checked at all and if so how recently? One thing I have learnt here is that it is important to have these checked, especially B12, D and Folate as it is common for us chronies to be deficient in these (especially B12) and low levels can lead to other problems.

Sending best wishes

AB
xx

 

[CTchrohner]

The remicade treatments were painful..they would prep me with prednisone and benedryl shots but would always welt or have to stop/pause during to wait for the welts to subside. In between treatments side effects started to become more frequent: muscle/joint aches, welts, etc.

During this time I also went to a naturopathic doctor to help me monitor my vitamin levels and learn to stop the stress of what was going on. Agree B12 is a common deficiency....

I am now on Mercaptopurine and some natural supplements. I struggle with exhaustion like I have never have before...it's sometimes hard to explain to people who just don't understand. I have been browsing around and there is so much info here and am looking forward to learning from others..thanks.

 

[Angrybird]

Sounds like you had the same issues I did with the Remi - joint pains, marks on skin etc. With regards to your vitamin levels did you actaully have bloods done and numbers given to you? What do you do supplement wise for these?

 

[CTchrohner]

Yes blood tests regularly - every month and I do get them sent to me. For supplements I do a combination -
(a) I try to get the deficient vitamin via food but have been leaning towards a B-Complex vitamin, adrenal vive pills, and vitamin D3 5000mg.
(b) I have been on a blood type diet for about 3 months now and take additional supplements that compliment my blood type; kelp, licorice root

I take Magnesium 25mg daily for the joint/muscle ache (works pretty good) and I do a 'green machine' shake every morning which gives me a better result of absorbing nutrients. I do ginger, flax seed oil, pineapple, kale and a banana...based with water and some cranberry juice - sounds gross but it is good.

I am so sorry to hear you had to endure the Remicade...my new GI doctor mentioned that Remicade is made of mice molocules versus Humira which is made of human molocules and sometimes that has been an issue for patients. How are you feeling now? I am just new off of Remicade...did you see any changes?

 

[stickman7755]

Welcome to the forum!! Ask any question you want.

 

[Angrybird]

Hiya, I was on the Remi about 2/3yrs ago and it took a fair while and steroids for everything to settle down properly and then I was put on Methotrexate which was stopped last June. Right now I am dealing with fatigue, a few aches and nearly constant headaches, waiting to hear from my doc/nurse on what they want to do dosage wise with my current med.

I would look into the B12 side of things a bit more and get the actual level that it is currently sitting at, from what I have seen here it is only when jabs are done is that the correct volume of supplementation can be acheived. It is because of exhaustion you mention that I think it is worth persuing.

 

[David]

Hi there and welcome to the forum I'm really glad you found your way here!

I agree with Angrybird 100%. Get your actual vitamin B12 levels tested, especially since you're experiencing exhaustion. If you're not absorbing B12 like many crohnies, then all the attempts in the world to get it via diet will fail. And a complex B vitamin would NOT be enough. Please get your levels tested, it could make a huge difference for you if you are indeed deficient and properly supplement.

Again, welcome!

 

[CTchrohner]

Great info on the B12....I am on it! Thanks