New here and new to Crohn's

[Crystalr75]

Hi. I am Crystal. I am 35 years old and was recently diagnosed with crohn's disease last Saturday. I am married with 3 children. Susan-18, Breanna-10, and Caitlin-6.
I am an Er Nurse. which makes it all the worse. I am used to taking care of people not having them take care of me. My oldest daughter has down's syndrome. and my youngest is deaf. But received cochlear implants this past year and hears normally with them.
I am at a loss. I spent 6 days in the hospital on solumedrol iv 2 times a day. along with cipro and flagyl. not including the morphine 4 mg every 2 hours and zofran 4mg every 6 hours with phenergan for breakthrough nausea. Before then, i hadn't taken more than Ibuprofen for headaches or occasional bodyaches.
Now, being home my new GI doc that i just met has placed me on Prednisone 40 mg, pentasa 500 mg 2- 4x day, folic acid, prilosec 20 mg, cipro 500 mg bid, and vicodin 5/325 -4xs daily. My body doesn't know whether it is coming or going. I am weak and tired and still have to keep trucking along. How do you guys do it? I feel like burying myself in the backyard. I am so young. How can I look at the life before me and not say run run? I follow up on sept 14th with the Gi doc. No one in my family has ever had to deal with this sort of thing. So, they just don't understand.
I cant remember a time when I was so fixated on something . I dont have the typical symptoms of diarrhea.. I am so constipated. i feel like I am going to pop! The doc said that my terminal illium was swollen almost shut last sat. however, before releasing me home he didn't do any test to be sure it was open enough to pass stool. the only time i have been able to go to the bathroom is taking an Enema at the hospital and i finally took one yesterday. i had not gone from friday till thursday. then I was so miserable yesterday i finally took enema. I cant continue to do this. I know with my medical training that this is not healthy. However, I don't want to go back to the hospital either. i am supposed to go back to work this next friday. good thing is I only work the weekend.:grumpy:

 

[Crohn's 35]

:welcome: My, you have alot on your plate and feeling constipated is worse than the diareah in my opinion. Narrowing causes this and as most doctor's will point out, surgery is the last resort but sometimes catching it and having laproscopic is as you know less invasive and heal quicker so you can back to your busy life. You have had children young, and they are going to need you since your oldest cannot do for herself, I am assuming.

No one want to be in the hospital, some dont even like to visit, but alot of Crohnies spend time in there from time to time. Obstructions are painful and IV's and meds are needed. I am sure since you are an ER Nurse you have seen your share.

We understand how you feel and your symptoms. I am assuming you are in the US because you are on Vicodin, not a Canadian drug, or not that I have ever used. We are here to help you, even when you just need to vent, because we all know how frustrating being young (I was dx at 32) and only one heathly child it was hard then. I am deaf in the left ear partial on the right but I have lived with it all my life, so having Crohns too just makes me wonder how I know I have to fight and keep going. I dont work, and with all you do, I dont know how you do it. Hopefully your spouse is supportive and helps out. (((hugs)) to you. Keep us posted how you make out with the Gi, we are here and a great bunch here to help you. Glad you are here!

 

[lorr]

Welcome, I just joined the forum not too long ago, you will find a lot of great information and through that some great support. Hope you get things sorted out soon.

 

[Dexky]

Hi Crystal, welcome!! I agree with your surprise that they released you w/o knowing how blocked you were. It sounds like the type of situation that could become a true emergency if not closely monitored. If you already required morphine for the pain, I'd say you have fairly serious blockage. I'm certainly no expert but there'll be others who will have had similar experiences. Best of luck to you!! I hope you stick around! The nurses on here are some of the best advisors.

 

[Crystalr75]

thank you for your support. I am looking for a good place to find a diet. The doctor and dietician just says eat what i want stay away from fiber and things that trigger symptoms. I haven't figured any of that out since i haven't really stopped hurting. i still don't have much of an appetite. I am not as nauseated which is a good thing. I just want to kick this in the bud before it gets too bad. Can you help with this? any suggestions would be appreciated.

 

[Crohn's 35]

Hey Crystal, alot of people do well on a low residue diet, but for the most part, alot of Crohnies are lactose intollerant. Raw veggies, especially carrots, red meat, dairy and most cheeses. I can tolerate old style cheese but white and soft cheese,um no. But I can eat yoghurt and frozen yogurt. Sometimes using digestive enzymes help when you eat something risky. Fried and fatty foods, dont break down and hard on the intestines. Trial and error is the game, and sometimes having a diary helps. Hope you are ok.

 

[momtocrohnsgirl]

hi crystal...i completely understand your concern, confusion and obsessing on the subject. i don't have crohn's but my daughter does, and i was shocked at first how much of a unestablished path to wellness exists for crohn's. as far as diet...here are a list of foods that are the most common to upset or exacerbate crohnies: wheat, milk, yeast, egg, potato, rye, tea, coffee, apples, mushrooms, oats, chocolate, onions, cabbage, strawberries, citrus fruits, beef and peanuts. unfortunately, crohn's is very individual and what hurts you is fine for others and visa versa. which is why this disease is so hard to get control of.

i am sure ur doc has told you to stay from popcorn, nuts and seeds, and yes, greasy food is very hard on ur intestines. the low residue diet is what our doc recommended at first too. think of babyfood...is how i got to the place of understanding. meaning, rice this and boiled chicken that. you need only white bread, preferably thin sliced, and canned fruits and veggies [i would not do anything raw right now..will be impossible to digest!] and soft non fibrous foods. don't do bananas, as they can bind up if you are having constipation. sugar is not great for crohn's, but surely as a nurse you know it makes ur stools looser, so you can 'go' more frequently w/ less pain.

dairy creates mucus so be careful abt consuming that right now. a high quality yogurt may work...like a greek yogurt. i would stay w/ chicken & rice soups or chicken broth, or baked/roasted chicken and canned green beans, etc. jello, rice milk or almond milk may work as milk substitute. as far as diets, all the physicians tell you to go on the low residue diet..but there is also the SC diet and the diet recommended by jordan rubin in the book, 'patient, heal thyself.' there is a shake recipe in that one that is goat's milk concentrated protein powder, w/ flax oil, egg, and other nutrients.

any dairy absolutely rips my daughters intestines up...she gets horrible headaches from the inflammation. apparently some crohnies can tolerate small amts of dairy, but she can barely tolerate any. eliminating wheat is really hard too. i would suggest you try one by one the list above, and see what hurts you or what. right now i know it's hard to tell what is the problem, being that you are on so many drugs. gluten free toast, applesauce, jello, chicken soup, or any cooked veggie soup is helpful. [butternut squash, completely puried w/ chk broth or zuchhini soup, etc]. small amts of miralax will probably get you moving...if ur doc will let you. maybe some apple juice will get the stools loosened up and moving.

i would also ask your doc for some anxiety meds if you find that it is 'consuming' you at all...because stress TOTALLY makes ur crohn's worse. you think you can control it but you can't. and a new diagnosis is stressful in and of itself. but please know, you WILL get this under control...you've come to a great place. i am also on alot of crohn's sites on facebook. i have learned sooo much in the last year that i feel like a specialist at times. to relieve you of some stress...know that the meds will do some of the work to get the inflammation down and within the next couple of weeks this will start to get more familar. you have to take your mind off of this at times and just try and live life w/ out worring abt all this. your kids are just gonna have to help out more than they ever have and YOU my dear, are gonna have to be less the caretaker, and take more care of yourself. make a list of destressors for yourself, and do those things regularly...no way around it. guided imagery, accupuncture, massage, hot baths, heating pads, maybe see if ur friends can start a food schedule for you for a little while so that either you or the family has a prepared dinner, reading some meditative literature [for me the bible is very relaxing!] and give your body some time to heal.

above all..there is hope. there is alot out there to help...you just have to keep trying. there is a very experimental stem cell transplant treatment going on out of chicago right now that is a very extensive treatment program, but it is the only shot at a cure out there right now. and that is a new and very exciting and hopeful thing. u may have to take a longer term work absense to get this under control. i would call your human resources right away. this is not the disease that you can "FIX" right away. it will take some time. it's a different disease and you have alot of things out of balance that need to be in balance before you can work again, or you could jepardize your health.

please let me know if you have any other questions. you can also message me if i can help w/ anything.

also my daughters doc said she needs to be on probiotics, omega 3 or fish oil [helps reduce inflammation] multi vitamins, calcium, iron and anti spasm pills. with all that cipro i can not believe you aren't having diarrhia, but make sure you put back the good bacteria. i don't know exactly where all you have the crohn's, but my daughter is on endocort, which is not so systemic of an steriod...and works directly on the ileium.

 

[momtocrohnsgirl]

oh and red and green peppers and tomato completely tear her up too. btw...peppers, potatoes, tomatoes, eggplant and spices like paprika are all nightshade plants which all cause inflammation. you can google it and see the research.

however, tumeric [or curcumin] is a substantial inflammation reducer and there is evidence holy basil helps w/ arthritic type inflammation, as much as any prescription meds. not table basil but holy basil. if no one has explained it to you, our ped gastro explained to me that crohn's and rheumatoid arthritis start out as the same thing in the body, and then either manifests itself in joint or intestinal inflammation. often, crohn's patients experience both joint pain as well as in gut problems. hope this helps too!

 

[momtocrohnsgirl]

oh and one more thing...don't take any ibuprofen at all on all those meds, and with this disease. your doc should of told you that it's tylenol from here on out.

 

[Astra]

Hi Crystal
and welcome

You've been given great advice so far, nothing more to add except that the Pred should start kicking in soon, this will give you lots of energy and heal you quickly.
sounds like you were partially blocked? just watch out for vomiting and high temp tho, this is a sure sign of obstruction or blockage.
when you've got time have a read through the sections on here, get yourself genned up about Crohns and how to manage it. there is a wealth of experienced people here and lots of friends for you, you're no longer alone with this, any questions, fire away.
lotsa luv
Joan xxx

 

[DustyKat]

Hi Crystal and :welcome:

Wow you certainly have a lot to deal with. As others have already stated the constipation is a worry if it doesn't start to resolve. How long have you had symptoms for? Have you had bloods done for B12 and Iron Stores as this could be a contributing factor to your fatigue due to Crohns being in your terminal ileum. I can't answer your questions on diet as Roo did not need to go down that path. I see where Jett is coming from with the surgery angle and although Roo had no choice with hers it did put her straight into remission and thankfully she has now been that way for 4 years.

I hope the meds kick in and sort the constipation out and you find a diet that suits you. I hope you hang around as this is a great place for support and info. Welcome aboard!

Take care,
Dusty

 

[Dexky]

Hi Momtocrohnsgirl, please tell us your story in a new Your Story thread as well!! You sound like someone who has been dealing with this for a while and I would certainly like to learn from your experiences.