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Newbie Here!

I was diagnosed with Crohns/Ulcerative Colitis in 97, but have been suffering from symptoms since I was in 6th grade! I suffered with diarrhea and severe rectal bleeding and pain in my lower abdomen.....but doctors could never figure out what was wrong with me. I've gone through 4 rectal surgeries for fissures that would keep coming back and never heal properly and then I had my gallbladder removed as that is what the Dr.s thought was causing my abdominal pain and severe GERD!
So finally after finding out that low and behold the pain was still there after my surgery.......further tests were done and the Crohns was discovered!
After being put on Prednisone and Pentasa my Crohns went into remission and I didn't have any symptoms for several years. After having my daughter in 2001, my symptoms reappeared and I have been on a very painful roller coaster ride ever since! I have severe strictures in my small intestine and surgeons that I have met with refuse to do surgery to remove the affected part. I have been on prednisone to many times to count and have just now come off of it after being stuck on it for over a year and a half!
After my last stay in the hospital in Feb. 08, I have not been able to eat alot of solid food, mostly I eat yogurt, soup and drink instant breakfast. I dropped 25 lbs. in a matter of months......which was fine by me as I needed to lose some weight, especially since having my 4th major back surgery in June 07!
My GI started me on 6MP back in March and after having kept 25 lbs off for almost a year........I rapidly began gaining weight and by May I couldn't fit into the clothes that I had bought for a cruise my husband and I went on! My GI say's that it can't be the drug that is putting on the weight! I haven't changed my diet........Something just isn't right!
In July I was put on Humira, while still on Prednisone and 6MP and my weight still kept going up. Now that I am off of the Prednisone, I am experiencing swelling in my hands and feet, my feet and legs hurt at night with a hot burning sensation and sleep is short lived!
I noticed since my last injection that I now have pretty severe joint and muscle pain/stiffness.........but hey, I don't have any abdominal pain!!! LOL

I could go on and on, but I won't! LOL
So happy to be here and look forward to reading about everyones experiences and getting the much needed support from others who know what I'm going through........family and friends just don't seem to get it!:frown:
 
Newbie Here

Welcome to the forum. WOW, you've been through a lot & I hope things will get better for you. I'm fairly new here too. I was diagnosed with Ulcerative Colitis 5 years ago and a year ago next month, I had surgery to remove my colon cause of the Ulcerative Colitis and a perforated Colon. I almost lost my life due to severe dehydration, failing kidneys, being unable to eat or drink anything for 2 weeks resulting in that but I'm here and better than ever.

Grateful to be alive, I look at my surgery as a blessing because without it, I'd still have flares & I can do without that. Welcome & know you can always come here if you need support
 

Astra

Moderator
Hi gottago
and welcome

Your story is similar to mine, but I had a hysterectomy! Then they found the Crohns 4 years later! And I was ok for a few years too, then BAM, hit me like a ton of bricks back in Jan, and been on and off the Pred ever since!!
When I came off the Pred back in April, I had terrible joint pain and swelling too, so I had a round of Entocort which worked for a bit, then back on Pred now! Dreading coming off this lot, just know I'm gonna be crippled again!
So yeah! I can totally empathise!
glad you found us, lots of friends here for you
lotsa luv
Joan xxx
 
Welcome :D
Wow, I can't imagine being on Prednisone for so long, I would end up killing someone if I had to be on it for more than a short taper haha.
This forum is full of so many amazingly supportive people who are happy to listen and share their advice. I hope you stick around :D
 
Being on Prednisone for so long has really been a challenge! My hubby would swear he was married to two different women! LOL

Thanks Joan for posting and mentioning your joint pain and swelling after stopping the Pred.......I was leaning toward that possibility because I had been on it for so long, but just wasn't sure since I am pretty new to the Humira and not sure if it could be a contributing factor. But I did stop the Prednisone about 2 weeks ago and my symptoms have crept up on me over the last week n' a half or so. Kind of like I've been working out for a week solid! Can hardly lift my arms up over my head and my feet hurt to stand on........I am just SO sick of all this crud that I have had to take for so long now! Either that or be in terrible pain and end up in the hospital!
Thanks so much everyone for posting.....I appreciate your support.

*Wendy*
 

DustyKat

Super Moderator
Hi Wendy and :welcome:

Good to see you here. Whoa you have certainly had a journey! Why won't they operate on you??

This is a great place with loads of support and info and you will find many kindred spirits here. I hope you stick around 'cause it would be great to have you here. Welcome aboard!

Take care, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Welcome Wendy!! Does your GI agree that you need surgery? or is the GI in accord with the surgeons? I don't know where you are but can you seek opinions from another GI or surgeon. I hope you get some relief soon!!
 
Hi Wendy and :welcome:

Good to see you here. Whoa you have certainly had a journey! Why won't they operate on you??

This is a great place with loads of support and info and you will find many kindred spirits here. I hope you stick around 'cause it would be great to have you here. Welcome aboard!

Take care, :)
Dusty
Hi Dusty......the surgeons that I've met with won't operate because they feel that it's to risky and surgery on the intestines has a very low success rate when it comes to healing properly. And the fact that the chances of the crohns coming back and affecting another part of my intestine is pretty high.
People have this type of surgery all the time with usually a good outcome, but for some reason they don't think I'm a candidate........so maybe when my intestine blows out because of the strictures they will do it?? Really frustrating to say the least!
 
Welcome Wendy!! Does your GI agree that you need surgery? or is the GI in accord with the surgeons? I don't know where you are but can you seek opinions from another GI or surgeon. I hope you get some relief soon!!
Hi Mark.......well my GI was the one that sent me to a general surgeon a few years ago, but he hasn't mentioned surgery since. He feels that we can treat it with meds, but after 13 years of meds that don't work and now severe strictures......You would think that I would be an excellent candidate for surgery. But alas we have the insurance company that only allows you to go to dr.s within the Physicians Network that I was assigned to and so that leaves me with not a whole lot of options, since I've been to the 3 that are in my network. You pay out the nose for medical coverage and then you can't be in control of your care.......something is wrong with that picture! LOL
 
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