Diagnosed with Chron's on Friday the 13th

[chunnicutt]

Hello to everyone!

I'm so thrilled to have found this forum as a way to talk to other people who share the same ailment that I do. I was just diagnosed with Chron's on Friday, January 13th. I'm still a little overwhelmed with the idea that I have a chronic disease that I will never fully get rid of, and that I have to take medicine everyday for the rest of my life, and that I can have possible complications, and that I have to change my diet significantly. I really want to learn from you all on here of what foods work for you, what treatments are the best, and also what you do to make yourselves feel better.

I have been prescribed Pentasa and Budesonide for now, only having to take the Pentasa for 2 weeks or until the inflammation goes away. Those of you who are on these medications: do you see results? Side effects? Any insight about them would be great!

Previously to getting diagnosed I had been sick for many months, probably almost 1 year, until I was hospitalized in early November with severe abdominal pain and dehydration. After a slough of tests they told me I had a ruptured ovarian cyst and swelling in my terminal ileum. They said I would be fine in a few days...I was not. It wasn't until I spoke to a friend that I realized my problem was likely a GI issue. I made an appointment with a specialist and got tested for Chron's, which ended up being the accurate diagnosis. I'm still waiting for the biopsy results, but have started treatments. I also kept a food diary for 3 weeks prior to my colonoscopy and found that gluten really irritates my bowels. Is anyone else sensitive to gluten?? What are your symptoms when you eat it? I get severe stomach cramping and bloating.

I suppose I really joined this forum to gain some reassurance that I will be just fine living with Chron's. I'm what others call "tightly wound" at times and my anxiety is riding high with this diagnosis. Any tips for diets or treatments or any information AT ALL would make me feel much better.

THank you in advance to all of you. This forum seems like such a positive and supportive place for us all to express our concerns and share information. I look forward to hearing back!!

Much love,

Cassie, Chicago

Diagnosed Chron's Disease on January 13, 2012

 

[kimmidwife]

Hi Cassie,
Welcome to the forum. You will find lots of support here. I am sorry for your diagnosis but as you can see you are not alone. Browse through the forums and you will get lots of good information. There is lots of info on diets and treatments in the different sections. As for anxiety I suggest getting with a therapist who can help you with that and with coping with all this as it can be overwhelming especially in the beginning.

 

[Jessi]

Hi Cassie and welcome to the forum.

I guess Friday, the 13th will always be a haunting day for you. But you can still live a pretty normal life with IBD.

I have trouble with gluten, too, but only while I'm flaring. It doesn't bother me otherwise. I found that cutting it out will lessen my abdominal pains and intestinal bleeding. I also found that I can't eat fruits and veggies unless they are canned or cooked. Most people here have that issue. However, I can eat leafy lettuces in a nice salad. Lucky me. Nuts and seeds are another category of food I steer clear from. Spicy foods taste great going in, but the end result is ugly.

Keep in mind, that these things are foods that I have trouble with, but everybody is so different here. It's good that you started a food journal. I suggest keeping up on it in order to find all your safe foods. Good luck.

Also like you, I am tightly wound and struggle with anxiety. My GI gave me an Rx for sertraline to help manage it.

Here are a couple of forum links that you may find useful. This one is for Pentasa and other mesalazines. And here's one for discussing Anxiety and the like.

I hope you feel at home here and that I see you around often. :hug:

 

[okhoney]

Welcome to the forum! I just joined myself and coincidentally enough, I received my "official" Crohn's diagnosis on Friday the 13th as well. I was tentatively diagnosed with Ulcerative Colitis four years ago and after a long, long road, have been confirmed as Crohn's colitis based on the colonoscopy I had on Friday.

I completely understand the difficulty in coming to terms with a chronic illness. I too get really anxious and have a hard time turning my mind off (it wouldn't be too inaccurate to say I'm slightly neurotic). Even after four years, I still feel overwhelmed a lot of the time and uncertain about how to deal with the disease. It's hard to not let it define who you are since quite often it's such a big part of your life.

One of the biggest things (and also one of the most frustrating) is to realize that there is no one perfect path for everyone in this disease. What works for someone else may not work for you. More often than not it's A LOT of trial and error. I myself have gone through so many medications before realizing I can't tolerate them or they weren't working (I seem to be one of those people that always fits into the "rare but serious side effect category). It's easy to get discouraged when the medications aren't working or you feel like you're never going to be better, but I think support is really important and it's great that you (and me too!) found this forum as a place to gain insight and community with people that are going through similar things. I just wish I had found it sooner, so good for you!

I started seeing an acupuncturist over the summer and one of the first things she suggested was to cut out gluten. I have been gluten free ever since and find that when I do eat it I am definitely more bloated and lethargic. It also makes some of my symptoms more severe.

It sounds like you're on the right path! Again, welcome!

 

[Angrybird]

Hello Cassie and welcome to the forum :bigwave: If you really want to have a thorough look at your diet one thing you can do is an elemental diet, this will mean though that you go on special milkshakes - NO FOOD. This completely clears you of all foods and in theory gets you back to square one. You then start very slowly introducing crohns 'safe' fioods bit by bit and then going onto things like bread, dairy etc and you keep a food diary on what you get an upset tummy with. You can go very in depth and look at what additives can cause issues (look out for a posting by happy for info on how far you can go). Not everyone can control their disease by diet but it is worth a try, it was the first thing I did back in '02 and a few times since with no joy unfortunately. Looks like the meds you are on currently are not too nasty so hopefully they will get you sorted This disease can be daunting but one thing I try to remember is that it could be worse and it will NEVER beat me. I am really pleased you have found us and please keep us updated on how you get on.

 

[outlier]

Welcome, sorry your joining us.
you might want to try a nutritionist. I found going to one made dealing with diet info easier.

 

[Nerple]

Welcome to the site.

I'd double check on which medication you only need to take for 2 weeks. I'm far from an expert or a doctor, but I've been on both drugs you've been prescribed (still on Pentasa) and Pentasa is usually a maintenance drug to prevent new inflammation and budesonide is a steroid generally used to suppress current inflammations.

I've had no side effects with either. Luckily Budesonide is a fairly weak steroid and doesn't really get absorbed into the blood stream so stays primarily localized to the digestive track.

 

[chunnicutt]

Thank you all so much for your kind and encouraging words! I made the mistake of eating a flat bread appetizer the other night, and I GOT SO SICK! I was in so much pain I almost went to the ER. I spent the whole next day in bed because I felt like my stomach was about to pop out of my body. I think I am responding to the medications, though, as I feel less pain everyday (aside from my stupidity of eating gluten), and I seem to be feeling more normal than I have been feeling in months.

Thanks, Angry Bird for the idea about the diet. I have been trying to keep a log of what foods I eat and how they make me feel. I know gluten is an enemy right now, as well as super starchy foods.

I'll keep you all posted on how things pan out with the meds and new diet

Cassie

 

[Angrybird]

Hi Cassie, I am glad things are starting to improve (apart from that little hiccup) and that you have already found one thing you need to avoid Fingers crossed things will continue to get better.