This Crohn's has got me feeling blue.

[Cecilia]

Hi everyone,

Let me just say that reading this forum is great and thanks for everyone sharing their personal stories. Its not easy dealing with all these ups and downs lately, it helps to know that there is so much support and REAL LIFE opinions and advice for understanding Crohn's.

So my story starts off about 2 years ago......
Ended up in ER with colitis and i had already been experiencing symptoms for awhile before that. Painful, horrendous agony, nights on the pot thinking I might die from the pain. Anyways, with no insurance and delayed diagnosis I saw a doctor at a clinic who just shrugged me off and didn't help me at all. He said my symptoms couldn't be IBS, maybe celiac but really I was just left in the dark. My blood work was abnormal, various ones showing inflammation but they just ignored me. After giving up a bit I got fed up and found a new doc.

So I got evaluated a second time, this time my blood work had gotten worse, now I was iron deficient, b-12 deficient, vit D deficient and inflammation was high all across the board. Had various tests to rule out other autoimmune disorders. Sent to GI, and got checked thoroughly and all my tests done to see what's going. A previous scope showed I had nodular mucosa which is common in Crohn's. Also I started to have systemic symptoms, joint pain, eye inflammation.....oh and this awful pain in my gut which I'm sure you all know about. Doubling over in pain, crying, the fatigue is the worst. I have started to loose weight, I lost 12 in 2 weeks and basically can't eat much more than bland food and when I do eat it's painful afterwards. So here I am, newly diagnosed and put on meds. Did a massive dose of Cipro and I think it sort of helped but I'm not to sure. I am starting Asacol HD and hopefully I can feel better. Waiting for insurance to so I can afford drugs, and going to do a pillcam soon. Having a lot of pain and passing very thin bm, hopefully it's just mild inflammation in there and it hasn't gotten bad. I'm praying these drugs work, my doc thinks it's mild-mod right now.

This has caused a ton of stress on my family and my bf is so good and stuck by me, and I'm going through so much emotional ups and downs dealing with diagnosis and feeling like it's so unfair. But I'm also grateful to have such support and it's hard feeling embarrassed about body and not being in control of what's going on inside of me. I we have 2 small babies and I just want to get well so I can keep up with them and be a good mom.

So that's me , my story....

Pardon the typos and text speech.

Best,
Ceci

 

[glum chump]

Hi Cecilia:

Welcome to the forum!

This must have been an anxiety-producing two+ years for you, especially as you try to look after two little ones. The rollercoaster ride of emotions you describe sounds all so familiar, and the feeling of being ill being so unfair. I've been on the toilet so many times wishingwishingwishing so badly to be "normal."

Has your doctor put you on prednisone at all? Oftentimes, prednisone (while it's a drug that is both amazing and even, it also actually happens to be fairly cheap) helps bring a flare down and then you can start drugs for maintenance. The pain and thin bowel movements suggest a potential narrowing of the colon, but a scope would be able to confirm this. In the meantime, eating a bland diet can be helpful, and if you can, taking in as many liquids as possible. In a flare, I'd drink at least one Ensure Plus a day, plus make fruit smoothies every morning to try to keep my gut from having to work too hard. I also lived on a lot of pureed soups---not the most interesting or flavourful diet, but the pain was too intense when trying to eat other foods.

I don't doubt that you and everyone around you is having a tough time with this. With so much uncertainty and intense pain, things can be hairy-scary to not have a sense of control or know where it's all going to go. I hope insurance and all the other things that you need to get a handle on this illness come together for you to ease things in your lifeworld.

Take care and try to stay sane!

Warm regards,

Kismet

 

[RFarmer]

Hi Cecelia! Welcome to the forum

You're right: it isn't easy at all. But, the forum people try to help each other out, so I'm sure you'll love it here

Good luck with the Asacol HD!

 

[scottmyster]

HI Cecelia, welcome to forum, i have had crohn's for 21 years now and was in remission for a long time before a month ago and it flared up out the blue. now i am on predisone and other anti-inflammatory drugs. Asacol is one of them. I know it can be overwhelming at times especially when you are in pain and nausea ,cramps keeping you up at nights. Running to bm all the time. it can leave you beening helpless and depressed and fatigued. but, there is a light a the end of the tunnel. Are you on anything for the pain? and the Cramping? i have been on a liquid diet for a full month now and will be on it for another month i would say until my flare up calms down, by drinking boost, ensure, and nutritional drinks, also you can drink gatorade, and flat ginger ale. just buy a bottle and leave the top off so it will go flat it's easy on the stomach and keeps you from becoming dehydated, also broths of any kind will also helps . i also have Bipolar disorder(manic depression) so that doesn't help. but i don't give up! i keep on fighting no matter what. The pain associated with diease is not easy i know first hand. but, liquids, keeps things at bay, stay away from anthing that says fibre. If your eating normal foods and they cause you pain and cramping i say away from solids for awhile and go for the liquid diet for awhile so you can give your digestive system a break. i hope this helps you and i hope you pain will end soon. This site is very resourceful and a large family of who i call friends and a great world of knowledge. so if you have any questions just fire away and the people at the form will respond. warmest wishes.:rosette2:

scott

 

[Cecilia]

Thanks for your kind words.

I think I may have narrowing, hopefully this doesn't lead to something more serious(fingers crossed). I tried eating some regular food but its just not working. I agree the liquid diet would probably be best for me. It seems less painful if I stick to liquids. I can't really tell if the antibiotics did anything, still taking lots of trips to the bathroom..... I do have some pain pills and they take the edge off slightly...

My insurance issue won't be resolved for another 2 WEEKS! I went to the pharmacy and they wanted 700 bucks which i couldn't afford for the Asacol HD, I had a mini melt down.... Healthcare system is such crap! I'm going to see if I can get some free samples or something, or I just have to wait. Its upsetting that I can't start the meds, I was really hoping to start taking it and get to feeling better. Its another hurdle in this mess of being sick.

I'm also having to put off my pillcam until next month as well. I hope things can't get to much worse in 2 weeks. Hopefully resting my gut and taking my supplements while stall anything serious. All of your advice is really helpful, I am really learning a lot of do's and don'ts here. Thanks again and I'll keep this updated. Hopefully I can get a break from this soon.

Take care and hope you are all in good spirits and feeling better and taking it easy!

Best,
Ceci

 

[RFarmer]

Aww, Cecelia. Insurance stuff can be a drag. Maybe, until then, you should just lay it low. Eat soup. Drink lots of water. Take tylenol, if you can tolerate it. Perhaps try immodium? If you can, just stay in bed for a while. There's things you can do while waiting for drugs. Sometimes, I find it helps to just force myself to get up, get a shower, and act like I'm healthy for an hour. Then, crash back into bed. I don't know why it works. Placebo, or whatever.

As for the ensure: I may be contradicting your doctor, or other knowledge you may have, but I hate ensure because it makes me feel gross. It's not design for crohn's patients. It's main ingredient is corn syrup... Corn syrup is terrible for most crohn's patients. Like I said, your doc might have told you otherwise, but maybe try a day eating soups and such? Crackers. Bread. Water. Bananas. Water. Chicken. Water... ...Water.
I just find ensure makes me feel like crap. It doesn't hurt as much, because it's not solid, but the ingredients are total killers.

Best of luck Praying for you