Confused and scared and a terrible typist

[percykins]

I am 55 just diagnosed with this wonderful disease in jan.2013.All my life I was told it was just nerves etc,my parents said borderline celiac.I have ran for bathrooms all my life and I have always had large supply of toilet paper(doesn't everyone lol) on hand ,my excuse was I had two girls I raised on my own. now there gone well I guess its cause I have Crohn's.I I thought it quite normal to have 6 bowel movements a day and wondered why people took more then 3 minutes in a stall to do their business.I took cholestyramine for many years at 4gs a day as an old (now deseased) gi DR told me I had ibd.So my life was as I knew it normal to me.I never missed work because of my ibd ,granted the flu would cause me to be off as most people are.Well along comes my colonostopy and alas dr walks to my bed in recovery says '"u have Crohn's disease,good news no cancer heres a script for meds see me in 8 weeks" poof hes gone.I went to get it filled it was entocort 9mg a day.i have not been the same since I was outgoing.confident,happy now scared ,tired ,confused the med helped with my bowels but put me into depression and I ended up soo sick with the flu I thought was going to die I missed 8 weeks of work,weened off felt much better then went to see the specialist gi DR.He was very nice but I said as I have a history of depression and was on wellbrutrin and alprazolam that these drugs conflicted with the entocort I thought.(FOOT NOTE DR. new this as its clearly on my chart before giving me entocort.I read pentasa might be better ,well a DR I am not with in 7 hrs of takeing 4000mg (500mg times 8)all at one time I ended up with the worst runs of my life,so bad I was in the ER 18hrs later on two iv bags for dehydration.I was released but after less then 2hrs later at home montazumas revenge again.I am waiting for the Dr to call as I have to work tomorrow.I am at a loss to know what to do now? scared anybody have any ideas ? please excuse all the spelling and grammar errors :ybatty:

 

[Jim (POPS)]

percykins,
Welcome to the forum. Sorry you are going through all this. Reading your story I feel like it is my story. It was the same way for me. Went to the bathroom about 4-5 times a day most of my life and didn't think anything about it. Just went on with life. Then I retired at age 58 (62 now) and started to lose alot of weight over the next few years. I went from about 180 down to 140 and then I went to the Dr. and they did a colonoscopy and said there was something on my apendix, a bump. The went to take my apendix out and found crohns and did a resection on the spot. I never had any pain or anything from the crohns. Just alot of "D".

I know how you feel right now, when we first find out we have crohns it can be overwellming. And to start off like you have with med. problums is not the best way to start.

You and I are very lucky that we went through life without having alot of complacations with crohns. I use to be so damn mad that they found crohns right after I retired. But not anymore, I read about all the young kids in here that suffer from it and think they have to have this all their lifes. My heart really goes out to them. But back to you and your problums. Things WILL get better. They have for me and they will for you. Just try to learn as much about crohns as you can right now by staying around here, the chatroom is a very good place to start. I'm there alot around 7PM your time and alot of other good people are. If you find yourself getting to stressed out about the crohns, back off learning a bit. You will find a happy place but it might take some time.

I sure hope things get better for you soon. And if there is anything I can do for you please send me a message, I'll do what I can

Find friends in here and let them support you, soon you will be supporting them.

Jim (Pops)

 

[***Lisa***]

Hi Percykins & Welcome to the Forum:

Pops is so right as because although you are having a rough time now, I can promise you that if you can maintain a positive attitude, you definitely WILL get better. That is a fact so please don't forget that when you are feeling down, okay?

My 20 year old daughter was diagnosed just over five years ago and she has taken a variety of different meds, but what we have found has helped her the most, hands down, is a little supplement called Vitamin D3. Not only will it help reduce the inflammation which is caused by Crohns, but it will also help boost your energy level and lessen your depression, which is so important when dealing with everything that Crohns throws at you. There are profactors that you should take with D3 to increase its effectiveness, as well. Have you had your Vitamin D level tested? If not, ask your GI to test it and ask them for your level. Don't settle for them simply telling you it is "low." You need to know your actual level. You need to strive to get it in the 50-100 ng/nl range and I can almost guarantee you that your level will fall far below this range. While you wait to find out your Vitamin D level, it will not do any harm to immediately start taking 5,000 IUs of Vitamin D3 along with Folic acid, magnesium & zinc. Within two weeks of starting to take these supplements, you will find that you will feel much better. Although these supplements may not take away all of your Crohns symptoms, they will help you feel much better overall. Give them a try and you will see what I mean.

Please don't lose heart as you have come to the right place because many of our experiences are similar to yours, or we are helping someone who is battling this disease, and we all need to lean on each other when we feel overwhelmed and alone. Whenever you feel down, just post a note and your Crohns Forum family will be there to help, not because we have to but because we want to as we have been there and were thankful to have someone there to help us when we felt like we had nowhere else to turn. Please keep us updated on your progress.

Take care.

Lisa :ghug:

 

[percykins]

Lisa thank you soo much its very nice to hear positive news and good sound knowledgeI will ask the gi guy to do that if he does not my reg.dr will.I went to work today and made it ,good news speacialist will squeeze me in Friday am .I printed out your letter so I remember what to get at the drug store ,hope you do not mind .I really love this group and will get on here more as I strengthen up and get my funny bone back.I HAVE c5 C6 fushion so my pain levels are high also so I get rest when I can. Percykins is my new cat a real treat also in these no soo happy times .maybe I can post a pic ?of him not me lol ty again will keep u updated.