Crohn's has been a pain!!

[ksiwek81]

I was diagnosed with Crohn's disease when I was 4 months pregnant in 2005. My dr. tried me on Imuran, but I ended up with pancreatitis as a result. After that I was put on Remicade. However, it did not work and I had to have an Ileostomy in 2007. In Jan. of 2008 I was admitted for a stricture in my duodenum, that I am still battling to this day. My dr. then put me on Humira, and everything seemed to calm down, and in April of 2008, I had a hernia repair. Humira seemed to be the wonder drug until May of 2011, when I started feeling the pain again . This time it was in my right lower abdomen. My dr. sent me for an MRI that said I had an ovarian cyst. I thought,"fine, as long as it isn't a flare."
In Nov. of 2011, something did not feel right. My abdomen was very distended and blue in color. My dr. had no answers other that admitting me to the hospital and putting me on IV meds. I knew something was really wrong, so I took it upon myself to go to the Cleveland Clinic in Ohio. The GI dr. there took one lok at my CT scan and said that I had 2 abdominal abcesses along with fistula's, that formed as a result from mesh. He then said that I needed to be admitted and that my situation was "grave." To make a long story short, in Feb. of 2012, I ended up having ten inches of small bowel removed along with the mesh, fistulas, and abcesses. My Ileostomy was then relocated to the other side.
I have just started Methotrexate, and will start Cimeza soon as well. I still do not feel completely well, and I wonder why my case with Crohn's has been so aggressive. This website has eased my mind in knowing that I am not the only one dealing with these issues. Does anyone know of any OTC med's that have been successful? I'm truly at my wits end and fed up!!

 

[Angrybird]

Hello and welcome to the forum. That is a lot to have gone through and I am sorry to hear that you are still unable to feel completely well yet. One thing with this disease is that we are all different with how it will behave and there does not seem to be any rhyme or reason to it - not very helpful I'm afraid

With regards to over the counter stuff do you mean to deal with pain or other symptoms?

I am glad you have joined us and I hope things can improve for you really soon.

AB
xx

 

[cheerio]

Wow! It seems like going to Ohio saved your life! I have it in my duodenum too, I get by with a proton pump inhibitor for now.
Glad you found your way here. Hope to see you around the forums!

 

[ksiwek81]

@ Angrybird- the pain is something that I have learned to deal with. However, anything OTC that may improve my current health status would be beneficial.
@ Cherrio- Yeah, I have been through more than most 30 yr. old people. I just hope all of this inflammation dies down soon.

 

[David]

Hi ksiwek and welcome! I'm sorry to hear you've been having so much trouble.

A stricture in your duodenum? Very interesting, that's not very common

With your resection and widespread inflammation of your small intestines I've got to wonder about vitamins and minerals. Have you been testing for vitamin deficiencies in vitamin B12, vitamin D, and folate? Those are three of the more common deficiencies those with Crohn's Disease experience.

Again, welcome

 

[ksiwek81]

I have heard that Crohn's in the duodenum is rare only affecting about 4% of the Crohn's population. That would be me, the odd ball. I'm actually going tomorrow to have the stricture dilated. Fun... I drink 3 boost a day and take a multi- vitamin, and my labs showed that all of my mineral values were in normal range, oddly enough. I'm having the hardest time gaining weight, only weighing in at 110 lbs. I'm 5"8", so I'm way too thin. However, I eat like a grown man. All of this is frustrating, but hearing from you guys helps me to remain optimistic .