My story with crohns colitis so far...

[ala2079]

Hello,

When I was 23 I was diagnosed with Ulcerative Proctitis. I was given some steroids for treatment and it seemed to work. At the time the only symptom was a little blood. I will admit I didn't take the disease very seriously. I pretty much ignored it but then again I was very depressed back then. I don't think I had the energy to deal with it.

In 2007 the blood returned. I didn't see the point in going to the doctor because I knew that I couldn't afford my health insurance deductible never mind the cost that I would have to pay after that. So I tried an elimination diet to see if certain foods made it worse. I also tried some vitamins, fish oil, and some other alternative options. It seemed to help a little but not enough. The symptoms were steady for about a year. They were unpleasant but I was still able to work. In 2008 I woke up and I could hardly walk up and down the stairs, I was very weak and my legs didn't seem to want to move. The blood, diarrhea, and the cramping had greatly increase during this time. I spent 2 weeks in the hospital and was on disability for 4 months trying different medications. Remicade, Entocort, Asacol, 6-MP, Pentasa, Prengnisone. It was during this time that my doctor said that he thinks that I have Crohns Colitis but the biopsy wasn't able to say for sure.

I had a remission for 2 years and now it's back. I am now 32 years old. My G.I. doctor thought the Pentasa was keeping me in remission but apparently that's not true. I had to go back on disability because I was too weak to work and I was going down hill again. I was just diagnosed with Osteopenia. I'm on Pentasa, Prednisone, Calcium, vitamin D, Naltrexone, Viressence (herbal thing). The Prednisone seems to be working great but unfortunately it's not a long term solution. My G.I. doctor sent me to another G.I. Dr. in Boston, the Boston doctor thinks I should try either Humira, 6-MP (again), Tysabri, or Methotrexate. I'm not crazy about the options but I'm happy that the word surgery hasn't come up.

I have no idea what's going to happen but right now it feels great to get out of the house without worrying about when the cramping is going to hit and where the nearest batheroom is. There is some cramping but nothing next to what it was. The joint pain is almost gone, and I have so much more energy. I'm enjoying as much as I can right now.

I don't know why it took me so long to join a support group but here I am!

Amy

 

[Grumbletum]

Hi Amy and welcome I'm glad you found us here, but sorry it's cos you've flared up again. Good too that the Pred is giving you some relief. Hopefully they'll get you on to the best maintenance meds to get you back into remission again. Take care and see you around.

 

[scottmyster]

HI amy, and welcome to the forum, I have had crohn's for 21 years now and it all started in 1990. To make a long story short i ended up in hospital for a month with this evil thing called crohn's. i started out the same way with diarrhea and bleeding. I was in remission for 15 years. and recently it just out of blue started to flare up again . i am on preds and other medication to take care of the inflammation. i have been at this now three weeks and things are finally settling down. i hope with right meds and the right doctors your will go back into remission again. best wishes and again i will see you around the forum.

scott

 

[glum chump]

Hi Amy:

Welcome! Yes, I too have osteopenia and my GI says it's quite common to have bone loss from Prednisone (in part why, as you say, it's not a long term solution!).

I'm glad you're feeling a bit better---an act as simple as being able to get out of the house can be so liberating and such a big deal. I hope that you're able to find a maintenance drug that you're comfortable with and that works for you.

Again, welcome to the forum, and I look forward to reading your posts along the way...

Cheers,

Kismet

 

[Joleen23]

Hi Amy and welcome
I've got crohns colitis too , this forum has been really helpful.
Hope things improve for you quickly

 

[Sophia]

Hi Amy,

Welcome darling!

How are you feeling at the moment? How long have you been on prednisone? What is your dosage?

Your story sounds a lot like mine. I was initially diagnosed with Ulcerative Colitis, and then they changed it to Crohns colitis. Although your symptoms seem to have come much more gradually than mine - I was hospitalized about two weeks after the blood first came as it escalated very very fast. They were very close to removing the whole colon, but miraculously I finally responded to the Solu-medrol IV, so I didn't have to do that. SOOOOO relieved, obviously! All this was back in 2009, and I've been in remission since June 2010. I tapered down the prednisone gradually and was off it in January 2010. Gradually got the symptoms back, and in June I was quite sick again, but then I contacted a nutritionist, and started on something similar to a low carb diet with no gluten, and it really helped me. I went into remission within a week, and I have been ever since. I don't know if going on a diet would help in your case, but it seems that several people in here have had good experiences with changing their diets drastically, so you could have a go if you feel like it. Most doctors don't believe diet changes have anything to do with Crohn's though, but I beg to differ. It really helped me.

Hope that you have a healthy remission ahead of you, and wish you all the best! xoxo

 

[ala2079]

Hi everyone!
Thanks for the response!

Sophia and anyone else,

At the moment I feel pretty good. I have been on 30 mg a day of Prednisone for about 3 months. I am now down to 20 mg a day. There is very little blood but some cramping. The joint pain especially in the low back and hip area has increased since I've decreased the Preg.

I have tried the Specific Carbohyrate diet but had a really hard time staying on it strictly, especially because at the time I worked around food all day. I really do think that it has helped and I believe that things would be much worse if I didn't do the diet. I will say that the diarrhea went away after I started the diet and hasn't come back and that was about a year ago.

At the moment I do still follow a lot of SCD diet but allow things like maple syrup in. I am a strong believer in organic whole foods, avoiding processed, artificial foods and in general trying to eat lots of vegetables, fruit, nuts, and protein. I have been thinking about trying something like a Paleolithic diet, but I'm not sure if I can do it without any cheating, but I feel like as long as I stick to the diet the majority of the time it should hopefully help in some way.

Sophia, I haven't heard of Solu-medrol? I'll have to look it up. It's great to hear that changes in diet has worked for you! It's true that doctors don't seem to accept that diet can help tremendously. I would like to hear about your diet more in depth if that's possible?

I still haven't tried the nutritionist thing. Unfortunately money has been really tight for me and I can't afford one right now.

Thanks again everyone!

 

[scottmyster]

HI ala, At the bottom of this page is a link crohn's disease diet by dr dahlman you can click on his link. give them your email address and they will send you the book for free in pdf file as long as you have adobe reader. just give them your email address and they will send you a confirmation email send back the confirmation email and they will send you the pdf file via email. it had a lot of information about diet and quite knowlegdeable. if it doesn't show the post just use the arrows it's there. best wishes

scott

 

[MissMandy]

Hi Amy , I too have Crohn's Colitis and have tried jsut about every drug out there to no avail. I am currently on Humira and it seems to be working ok for me so far, with few side effects.

 

[ala2079]

Hi Amy , I too have Crohn's Colitis and have tried jsut about every drug out there to no avail. I am currently on Humira and it seems to be working ok for me so far, with few side effects.

Hi missmandy,

I have a feeling that I'll be probably trying Humira next. My doctor went on a two week vacation so I won't know until he gets back. What is the Oxycontin for? Does it work? I have been on pain medications before but they didn't touch the intestinal pain that I was having, I don't remember the names of them. Are you working?

I hope this Humira works for you it sounds like you've been through a lot.

 

[MissMandy]

Amy,
Yep the OXycontin is for the pain and it helps a LOT. I had the same problem as you, all the other pain meds they gave me didn't help, until they started me on Oxy 2 years ago. I started out on 5 mg of immediate release every 2-4 hours, and that wasn't really working so they upped me to 10 mg of time release, then I flared again and they started me on 30 mgs of time release and that has been a huge help, except for the one time that I flared after I started at the 30mg, but now that my flare is under control the 30 mg really helps the pain.

No I am not currently working, I haven't worked for about 1.5 years, since I was fired from last job after being put in the hospital twice. I was working there when I was put on the Oxy, my immediate boss had a huge problem with me taking it while at work but there was nothing she could do because they legally could not tell me that I could not take a prescribed medication. But they solved that problem by firing me shortly after that.
The Humira seems to be working for me so far, I started it in May, and I have heard that it can take a few months to kick in and start working, and I haven't had any problems since being on it. I am off the prednisone now too! I hope that your dr can get you started on it soon, and if you have any questions about feel free to message me!

 

[scottmyster]

HI there i take oxycodone same has oxy IR , immediate release i am on 20mg twice daily and i am in flare up stage now and it really helps with pain. and it is prescription. it doesn't knock me out or anything but it sure helps with the pain. best wishes

scott

 

[Sophia]

Hi again Amy,

So sorry it's been so long, for some reason I didn't get a notification, or I must have missed it when I was on holiday, perhaps.

Anyway, you were asking about my diet. Here's a link to a thread I posted when I had just started. It was pretty rigid, and looking back I am amazed I managed to be so strict for so long. But for me, it really helped. Nutritionists are expensive, so I totally get you on that. It sounds like you are doing things correctly especially since you don't have D anymore, so don't waste money on a nutritionist now. The problem with the diet I was on was that I needed to take so many vitamins because it was difficult varying my meals enough to get all the vitamins and minerals I needed. Now that I feel better, I stick to the basics of it, but I am not afraid to include other things in moderation. As soon as I feel worse, I go strict on myself.

Solu-medrol is similar to prednisone, but given intravenously.

Hope you are feeling better now. Still on prednisone?

 

[Sophia]

Aaaand, here's the link, lol:

http://www.crohnsforum.com/showthread.php?t=12004

 

[ala2079]

Hope you are feeling better now. Still on prednisone?[/QUOTE]


Thanks Sophie,

I'm feeling a lot better. I'm in the process of tapering off Prednisone (currently at 10 mg). So far so good. Happy to be going off Prednisone but a little nervous because I don't have a maintenance medication that works for me yet. Most of my symptoms of Crohns have gone except for some hip pain sometimes. I'll be starting Humira really soon so hopefully all goes well.

 

[scottmyster]

HI Ala, i am sorry you don't have a maintenance medication that works for you. Hopefully humira will do the trick and get back you on track again to recovery. The hip and mucle pains could be coming from the predisone or from the IBD it's not uncommon for suffers to become disabled from these conditions. Hopefully when you are finished with the predisone you will know for sure what is causing your symptoms. best wishes.