Crohn's, the newest diagnosis

[MargariteJ]

Hi, I have had stomach/digestion problems all my life, severe pain and various diagnosises. (sp sorry). I was told to go on a high fiber diet, I was told I had celiac disease, I was told it was all in my head.

I am 40, in the middle of a flare and on prednisone and Asacole for crohn's, which don't seem to be helping. I am in so much pain, and am so embarrassed all the time. I got out of the hospital Thursday (26th) and plan on going back to work monday, I can't believe how limited my life is getting.

I am scared, I have a 3 year old who needs me and I am having a hard time keeping up with her, my poor husband, I don't know how he can find me even remotely attractive.

Lord, I sound needy. Most of my life I have tried to just suck it up and that's worked for the most part, but from talking to the doctors, I have to move forward with treatment, I just hope something works.

The plan will be A6 or Ramacale (again spelling). I hope something works, I'm afraid of not being able to work and if that happens I don't know what my hsband and I will do.

Ugh. Thanks for reading, I'm not normally so doom and gloom, I try to keep it to myself since I figure it's already difficult for the people around me. It's just getting so hard to keep it in and keep pushing forward.


MJ

 

[danirenae]

I am not probably not the greatest person to comment on this. I was diagnosed at 17 with LC but dont really know what I have. I live in a tiny town in Norhtern CA (redding) and the doctor dont know what I have other than thalessemai with imflamation that presents itself like LC or crohns.I have taken ascol and many other drugs for it. I go to work every day and I am scared of having an accident or stomach pain or a huge rash or my hands hurting and being inflamed but I am good at what I do and I love my job so screw what my co workers think! i married a great man that I cant keep up with but he push's me to be all that I can be and he is there for me in my down times! like i said i was diagnosed with LC 15 years ago but who knows what I have but I love this forum and reading the storys on it because it makes me feel normal! I hope more educated than me people respond to ur post but know there are many out there who know how u feel and what you are going through. best luck and support!

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear you are still having problems

Just to confirm you have been offically diagnosed with crohns? Do you what area of your bowel is affected? Med wise is the upcoming treatment perhaps Remicade? This would be a med given via IV infusion? Also what dosage of the pred are you on and also have you been given a calcium supplement to take with it?

AB
xx

 

[David]

Hi Margarite.

I'm sorry to hear you're in a bad flare, that must be so rough

Like Angrybird I wondered if you are being put on Remicade or 6-MP?

You mentioned at one point you were diagnosed with Celiac disease. Do you still maintain a gluten free diet?

All my best to you.

 

[MargariteJ]

The Deets

ok, so I had my response typed up and my computer froze and I lost it.

I'm gonna keep it short and sweet.

First and foremost thank you to everyone here who has responded/read my post.

I have been sick all my life, various diagnoses. Celiac diagnosis was wrong and am no longer GF, it doesn't seem to connect to any of my symptoms.

I was diagnosed with Crohn's Colitis in April 2012 and started 3600 mgs of asacol a day. The asacol helped but didn't relieve all the symptoms. 6 weeks in I started having headaches and chest pain, the doctor said it was side effects from the asacol.

I went into the hospital 9/26-9/28 after a 3 week flare without relief. I had started Prednisone but it wasn't helping. The IV steroids help and I went home. I went back to work on Monday 10/1 and had to leave after 3 hours, the pain was worse than the previous week. My husband took me to the er and I was admited. I was release yesterday 10/4.

I am now on 2400 mgs of asacol, 40 mg of prednisone and 75 mg of 6-MP. I am on Vicodin as needed for the pain, but don't want to take it as I have 3 year old and don't want to be drugged up with her. She is in daycare and my husband is home for a few days so I'm hoping things calm down soon.

We will see.

I hope I answered everyone's questions and if you have suggestions/advice I'm all ears. I also work full time and hope to get back to work soon, in the mean time my husband and I are exploring my options as my job can be very stressful and I know it plays havoc with my flaring.

 

[David]

Where specifically is the pain you're experiencing? Such as just above the belly button, just below, just to the right of it, bottom right of the abdomen, etc.

Did your regular GI put you on the 6-MP or one at the hospital?

What makes you think the Celiac diagnosis was wrong? Many people with IBD are also Celiac or at least sensitive to gluten or gliadins.

Have you ever tried courses of elemental or enteral nutrition during these bad flares? They are wonderful treatment options and can really help get things calmed down.

I hope you feel better soon!

 

[MargariteJ]

Celiac and stuff

My GI feels that the general practitioner that said I had celiac was wrong. He didn't do the proper testing and my symptoms have never coincided with my gluten intake.

My GI doctor worked in conjunction with the doc at the hopspital and has been dorecting my treatment, he put me on the 6-mp. He was going to put me on the remicade but we are still waiting on blood work and didn't want to waste any more time.

I'm not familiar with elemental or enteral nutrition so I'll have to say no, I'm not doing that and haven't tried it, but am all for anything I can do to minimize drugs and maximize my health. I am on a low residue diet and am taking vitamins regularly, I have always done vitamins to try and help with my anemia, fatigue and general lack of energy/wellness.

my pain is pretty spread out, unfortunately. I have pain across my abdomen under my ribcage that follows a pattern when I eat (I think I'm feeling the food move through my intestines). The main location is on the lower right side of my abdomen that increases when I eat. It appears there is a narrowing of my intestines there but we are trying to deal with the flare and get that under control as I want to avoid surgery if at all possible. I haven't started down that road yet and am afraid of where the surgery junket will lead :eek2:

Thank you for mentioning the elemental/enteral nutrition and am going to look at it after I post this. :hug: I have to say I'm discouraged, but excited to hear about all these different options, up until I was diagnosed my GP had just said I'd have to deal with my issues, which was very dicouraging. I don't think I'll be going back to him again, I need a new GP!

 

[Jessiegrrl]

MargariteJ, One thing that has helped me at times of great flare ups and pain is to ditch the veggies, nuts, cows milk and fruits completely including all the directives such as Fruit/Vegetable Juice and ice cream. Popcorn can be like razors in my gut so I always avoid it.

I found that starchy foods and meat were OK for me. One of my faves is Basmati Rice and at time its the only thing I can eat without pain. I hear other CD patients say the same thing.

Like you I had a lifetime of gut problems but was finally diagnosed about 20 years ago and now I am able to manage my disease much better now that I and my Dr.'s know what I have.

Best of luck to you and remember that there are a lot of drugs and treatments out there and it can take a while to find the right ones.

 

[MargariteJ]

Jessiegrrl thank you for the advice. I have ditched a lot of the foods you mentioned already, popcorn is the worst isn't it? I've been doing a lot of soup and soft foods. I also have to drink ALOT of water otherwise the works get gummed up...lol

I am so greatful that I found this site and for everyone here. I know the treatment can be along process, but having been sick more than half my life and being told to just deal, I am hopeful for the first time in years!

 

[David]

Yeah, definitely get a new GP. People with IBD should NEVER just put up with their symptoms. That's like letting a small bush fire around your house burn when there are dry trees right up against your house. Proper management of this disease is critical.

Have you ever had your vitamin B12, vitamin D, and magnesium levels tested? Your mention of fatigue has me wondering.

 

[MargariteJ]

I am anemic and had an iron infusion in the spring. I am also on Vitamin D, but have't heard anything about my B-12 levels. I also take multivitamins daily to help keep my levels up.

I am unable to take regular iron supplements as they tear my gut apart. The infusion helped for a couple of months but I am wondering where my levels are right now, as I lost a fair amount of blood over the las 6 weeks.

Fatigue is an ongoing issue for me, but I think it's getting better. The prednisone seems to be helping with that, but it's more of a jittery kind of energy so we'll see how that goes.

 

[David]

If you're deficient in B12 due to Crohn's Disease, a multivitamin would provide nowhere near as much as you need. I'd suggest getting tested just to make sure. Deficiency is so common in people with Crohn's.