Journey with Chrohn's

[josh_robinson]

I have had an interesting time finding out I have Chrohn's. In 2007-2008 I dealt with my throat tightening and the doctos put me on acid reducers for a year to fight what they thought was acid reflux. But after I took it I didn't see a huge improvement. Then over time in 2009-2010 I was beginning to get weak and was losing weight. I had a blood test and found out I was anemic and I was losing blood somewhere.

Over the next few days I had a colonoscopy and it was clear, then I had a blood transfusion due to low blood. Then a few months later I had a double bloom endoscopy down my throat (I think that is what it is called) and it came back clear. A few months later I had the pill camera test and it showed some ulcerations but unsure of the exact location.

This past February I had a double bloom endoscopy the other way and found that the pill was stuck in my intestines! They retrieved it (which I now own, haha). They found ulcers and said I had Chrohn's.

Since then I have changed my diet and have cut out a lot of dairy, soda, fried foods, etc. I have felt a lot better but I am not 100%. I am trying my best to not have to take medicine. My doctor has not been very good and still hasn't followed up with me from the procedure I had in Feb.

Do you have any tips or suggestions for me? I just found this website and have been encouraged.

Thanks ahead of time!

 

[xJillx]

Hi Josh and welcome! I sure do have suggestions:

1) Find a new doctor - I can't believe you haven't followed up with your doctor since your diagnosis! That is unheard of! Your doctor should have met with you immediately after your scope (tops 2 weeks later) to discuss Crohn's, how to manage it, and to set up a treatment plan. Hence my second suggestion...
2) Start treatment - Diet, exercise, de-stressing can help you manage your Crohn's symptoms, but you need medication to get the inflammation under control and keep it away. I have read story after story of people who a) delayed taking treatment or b) stopped taking treatment because they thought they didn't need it and greatly regretted it. I don't want you to be one of those people. Crohn's is like any other chronic illness - medication is need to keep it in check!

 

[ameslouise]

Hi Josh and welcome!

As usual I am following Jill around the forum and saying "ditto" to all of her smart advice! Couldn't have said it better myself!

Good luck - I hope you can find a doctor that you like that is a little more thorough and a good treatment plan you are happy with.

- Amy

 

[josh_robinson]

I have started a new doctor in the same building as my old one. I'm taking prednisone right now 40mg a day. I am feeling better since the last few days. I'm waiting on blood results as well. I am nervous about taking prednisone after reading all of the side affects.
how long do people stay on it during a flare up? I definitely don't want to be due to not being able to sleep that well and all.

Also, is there any ways to help anemia? I am taking iron but I wonder if I'm B-12 deficient as well.

Thanks,

Josh

 

[Grant]

Josh, usually you need B12 jabs when your terminal ileum has been removed. However I'd imagine its a possibility if your terminal ileum is still there but badly diseased or damaged then your B12 output could be down. Best get some professional advice there IMO.
Keep well
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[josh_robinson]

I have just finished tapering off of Prednisone that the doctor had me on for about a month. I'm now off of it and feeling great. The "crash" was really hard the day after I quit. I felt tired and fell asleep really early.
Now they are talking to me about Remicade and I am thinking about it. Has anyone had good experience with it? The doctor told me that it is a better option than trying Humira at first.
I'm only taking vitamins and eating good foods right now. I'm taking B vitamins, Vitamin C, small iron supplement, Oscal (calcium and vitamin D). I haven't had a flare up in over 4 months and I've gained weight back.

Any thoughts would help helpful. I'm also trying to find more natural supplements to help as well.

Thanks in advance!

Josh

 

[David]

Hi Josh, nice to meet you I'm glad you've checked back in with us! We have an entire Remicade support area you may want to check out.

Take care and see ya 'round.