New and scared....

[charshel7072]

Hello all
my name is shel and I'm new. Let me start by saying that this all started 10 years ago. I was always a chubby girl. But in my early thirties I developed lactose intolerance. Before I knew what it was I had dropped 65 pounds. I eventually learner how to deal with it and lead a normal life. Then now in my early forties I was in excruciating pain so I went to e.r.
They did Ct scan and bloodwork and found my appendix had a small rupture and white blood count was high. They did not want to operate because my intestines had wrapped all around my appendix. The doctor said it was your bodies way of keeping the infection in one area. Plus their was too great a chance of knicking my bowel. That would lead to way worse problems. So they admitted me and flooded me with high powered antibiotics. They sent me home on antibiotics still. My appendix did eventually heal but my bowels remain inflamed. G.I. ordered countless Ct Scans. Bloodwork. Clonoscopy. I ended up back in the hospital for 5 days. I was anemic. Lost a drastic amount of weight. Still inflammation of bowels. G.I. said he thinks I have crohns. My weight has plummeted to 110 pounds. I weighed more than this in high school. I'm trying to stick to a crohns safe lactose free diet. When I even feel like eating. I am so weak and frail. I have bad headaches everyday. I feel like I eat tylenol like candy. I mostly just lay in my bed. I am scared what is happening to me.

 

[Jennifer]

Hi charshel7072 and welcome to the forum!

I'm sorry to hear about everything you're going through. :hug:

Everyone is different when it comes to diet. The Low Residue Diet is a common one to go on to help reduce symptoms yet some people may still have problems digesting certain items. A food diary will help you figure out what your personal triggers are. For instance I can eat yams just fine yet some members aren't able to tolerate them. Others can eat carrots just fine and even if I cook the hell out of them they still come out looking like they did going in. What sorts of foods have you been able to tolerate or do you feel that anything even liquids produce symptoms?

When I'm too tired to cook often I make a large amount of strew or soup and portion it out and stick the leftovers in the freezer so I can easily heat up nutritious food when I'm not feeling up to cooking (if you have someone to help you do this then ask for their help). I find this to be better than grabbing a bunch of freezer food items at the store.

Can you talk to your doctor about maybe trying Enteral Nutrition? http://www.crohnsforum.com/showthread.php?t=23607 You need more nutrients and being lactose intolerant makes finding a good supplement drink difficult. Even Ensure Clear says that it contains some lactose but also claims that its safe to drink for people who are lactose intolerant. I'm lactose intolerant as well and was able to drink the Ensure Clears but its up to you if you want to try it. They taste like yuck but its something. Have your doctor check your vitamin levels as well to see if you're low or deficient in anything (which I bet you are from being so weak and tired and unable to eat much) then hopefully you'll be able to begin supplementing to try and reduce some of your symptoms of fatigue etc.

Is your doctor going to run more tests to give a concrete diagnosis before beginning treatment if you do have Crohn's? Did they talk about trying steroids to try and reduce your inflammation? Steroids are meant for short term but after reading your story I don't see why they wouldn't try unless another test was planned soon. Inflammation can be painful and it can prevent you from absorbing nutrients when you eat and drink along with other symptoms (do you have any other symptoms besides the pain and weight loss?) so hopefully your GI has a plan oh how to get the inflammation under control soon.

Keep us posted.

 

[lizbeth]

Hello and a very warm welcome to the forum, although I'm really sorry that you've been having this problem . I can't really add any thing to what Jennifer has already said except, maybe if you were going to keep a food diary make a note to of your symptoms so that you can identify trigger foods alittle easier? It's also very useful to have with you at GI appointments too.

I wish you luck and hope you find some peace and remission soon.

 

[charshel7072]

Hi jenn
I do drink boost. Its lactose and gluten free. I take iron supplements and I have a multivitamin but I don't take it regularly because the damn pill is huge. I am schedualed for a endoscopy on the 18th. I really think I'm headed for another hospital stay.
I have a lot of diarrheah but I find it painful going to the bathroom. And by the time I'm done I find I'm sweaty and weak a lot.
My diet consist mostly of chicken breasted white rice salmon tillapia tuna tea water saltines rice crispies lactose free milk activia yogurt boost nutrition drinks eggs. I only use extra virgin olive oil when necessary. I try to use mustard instead of my veganaise. White bread lean ham and turkey deli meat. I recently got a blenders so I can make smoothies that are crohns safe.
Ive done a lot of research and I'm learning the foods that hurt me. Fried foods seem to be a big no no. Too much sugar is bothersom as well. Any lactose is pain.
I am hoping that my g.I. puts me on a helpful med soon. He did give me dicyclomine for intestinal spasms. Helps a little bit.
Do you think taking tylenol long term will hurt me? I worry about its effects on my liver. But that goes out the window when the pain hits.
I need some weight back on me. But am sometimes afraid of food.
I like your idea of making foods in advance. Do u freeze the rest or just refridgerate? Do you know any simple recipes?
Thank you so much for replying to me jenn

 

[charshel7072]

Jenny!!! I just saw that you have panic disorder. So do I. I take prozac for that.

@Lisbeth. Thank you for the warm welcome. Its so good to talk with loving people who understand. I'm so happy I joined here.

My mood has been lifted to hear from both of you.

I am not really keeping a food diary but mentally noting what I can tolerate and cant. Shel

 

[Jennifer]

I freeze the rest in portions (I actually don't have a lot of money so they're frozen in freezer bags and I can get one to two meals out of each). LOL I'm not the best person to ask for recipes but I added what I'm able to tolerate and everything was cut up really small. This last one I made a beef soup with beef stock (I tend to use the cubes cause they're cheaper but use what you like), I brown the beef before adding it, onion, garlic, carrots (this is a trigger food of mine normally but for me and many others, trigger foods can come and go when you're getting close to or in Clinical remission and I'm at that stage currently), potatoes, cabbage (another usual trigger food for me but not as bad at the moment as I mentioned) and celery (this is only a trigger for me when its raw, which I haven't tested recently) add water and spices that you prefer. I try to keep it as low residue as possible by limiting the amount of salt I put in (the cubes have a lot of salt already and you can add a little more water to reduce the amount in the soup or stew) and by cutting off any fat on the meat prior to cooking. You can do the same thing with chicken but use chicken stock instead and you could add some rice to it.