A shity situation

[Rikkipickles]

Hi everyone,
I am Rikki, I'm 22 years old female, and love life. My friend showed me this site to try and help me out. I have been trying to look at the bright side of things but recently for some reason anything i do feels like its just too much. I have been recently diagnosed with multiple colitis, idiopathic allergies, and lymphnodes that won't stop swelling and causing pain, and the start of ulcers.
I have been in pain, in and out of hospitals for the last two months. This recent time, they have said the lymphnodes were bigger then last month and that my white blood cell count is up with high bacteria level…is that normal for anyone else?
Id like to get to know anyone on this site, hopefully i can get my pick me up soon and be my normal chipper self
~thank you for anyone who may read this~

 

[mikeyarmo]

Hi Rikki,

Welcome to the forum. I am sorry to hear about your recent pain and hospital visits.

We are a large community so there are a lot of us who will read your story.

I believe that inflammation in general can increase a person's white blood count. As inflammation is something most people with IBD suffer from, this is a common occurence. I know that at times my white blood cell count was high.

I hope that through use of this community and with guidance from your medical practitioners that you are able to return to your normal self soon!

 

[David]

Hi Rikki and welcome! I'm so sorry you've been having problems

I'm not familiar with "Multiple Colitis" and a Google search didn't help me. Could it be Crohn's disease? Ulcerative Colitis? Microscopic Colitis? Infectious Colitis? Or something else?

What allergies are you experiencing?

Are you on any medications?

We're here for you!

*hugs*

 

[Judith]

Welcome Rikki,
I am so sorry you are feeling ill and hope it turns around very soon. You are not alone feeling drained and not your typical "chipper self". There are many research studies, especially recently, helping to explain the role of Inflammation on Sickness Behavior including Fatigue, Lethargy and general exhaustion. We have quite a bit of information on how Vitamin and Mineral Deficiencies have a role in Inflammatory Bowel Diseases and how Supplements may help combat your exhaustion.
Welcome to Crohnsforum. I hope you are feeling better shortly.

 

[Rikkipickles]

Hi and thank you everyone. what the GI doctor told me is that i have two different types of colitis, UC and IC with ulcers and for some reason i don't know if this goes hand and hand with everything but the lymph nodes are just getting bigger and won't go down. The pain is some times unbearable and other days just cramping. the allergic reactions i get is, i get butterfly rash on my face, my hands swell to look like cartoon characters, and its hard to breath. they have tried prednisone but it turns out i am highly allergic to it. so i have an dpi-pen incase things get bad. No matter how much water i have been drinking they have been saying I've been dehydrated. i drink 10-15bottles of water a day. i am on several medications. Allegra 180mg dally, Omeprazole 40mg daily, Nitrofurantoin mono/mac 100 mg 2x daily, Loperamide HCI 2mg 3x daily, and Budesonide (haven't taken it yet because its so expensive, even with insurance taking $1,100.00 out its still $375.00 a month)

 

[Judith]

Are these symptoms relatively new? I wonder if you may have developed an allergy for one or more of your meds.

Check out some of the allergy warning information in the product formulary for your Nitrofurantoin (Macrodantin):

Allergic: Lupus-like syndrome associated with pulmonary reaction to nitrofurantoin has been reported. Also, angioedema; maculopapular, erythematous, or eczematous eruptions; anaphylaxis; arthralgia; myalgia; drug fever; and chills have been reported. Hypersensitivity reactions represent the most frequent spontaneously-reported adverse events in worldwide postmarketing experience with nitrofurantoin formulations.

http://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=56203

and

http://www.drugs.com/sfx/macrobid-side-effects.html

Also, have you had bloodwork recently that included a creatinine clearance test? If so, was it high? A high creatinine clearance may indicate you are not as able to excrete the meds as you should. This can result in a higher level of medication in your system.

 

[Rikkipickles]

the allergy symptoms happened before the UC and IC about 4 years ago, and now the stomach issues. I have had test done for lupus but they say its not it. Is a creatinine clearance test done with blood?

 

[David]

Out of curiosity, has the lymph node swelling started since you began your medication for the Ulcerative Colitis? And if so, are you on any sort of mesalamine formulation such as Pentasa, Asacol, Sulfasalazine, Lialda, Rowasa, Apriso, Salofalk or any other medication you haven't mentioned?

And are you sure that they didn't say you had Crohn's Disease? I ask because Budesonide is for small bowel disease and Ulcerative Colitis is confined to the colon and Budesonide has been shown to be less efficacious in Ulcerative Colitis than mesalamine formulations which have less side effects. I'm just surprised they haven't put you on any type of mesalamine and if they have and not long thereafter your lymph nodes began to swell, that could be the cause.

 

[Rikkipickles]

The medicines i listed are all i take, The lymph node swelling was the first sign that something was wrong, it was before I was on any medicine and before my colonoscopy and endoscopy. They checked for crohns and colon cancer when doing the procedure, but it was negative.
Just had my what seems like a weekly check up, and they told me not to take the budesonide, that they are going to try me on a steroid pack for a week and see if that does anything. And go back next week.
Out of going to the doctor I now dislike the word "possibly", I feel like its a guessing game, worse than what doctor House does lol

 

[Rikkipickles]

Here are my symptoms: I have sever loss stool, cramps in the stomach mostly the lower half then out of no where there will be sharp stabbing pain in the lower right quadrant, one that landed me in the ER last week where I couldn't stand. It hurts worse when I have to take a #2 and pain is located in the lower right. Was having sever vomiting and acid taste in my mouth. Couldn't keep anything down. Always super exhausted but can't fall asleep, and when I want to do something just don't have the energy to do it.

What they done: blood work, x2 dye contrast CT scan, colposcopy, and endoscopy

Is this something everyone feels and goes thru?

 

[David]

They put you on prednisone but you were allergic to it and now they're going to put you on a steroid pack? A different kind of steroid?

 

[silvermander]

Rikki dealt with prednisone before the diagnosis, which is why she knew of the allergy. She was diagnosed with Lymphocytic and Collagenous colitis after her tests - scopes and blood work, etc.

She just got married (beautiful wedding), and is now on her husband's insurance - though trying to iron out some issues - and has a great new doctor, but it seems as though he health has been going down hill since the wedding. I wish I lived closer so I could go to appointments with her, but her hubby has been doing an amazing job of being with her every step of the way.

It just seems that no matter which way she turns something else happens. I'm frustrated for her, but it's nothing compared to what she's going through right now.

 

[Rikkipickles]

Thank you silvermander i really do have an amazing husband!
so the new update is that the steroid pack they wanted to put me on had prednisone in it, so they are now going to try the entocort again. They got sample packs for two weeks for me to try. I feel like they keep doing hail-mary and not getting it. But fingers crossed hopefully this will help.
Oh question, does spicy food upset anyone's stomach? Or is there any "safe" food I can try? The only thing that won't kill my stomach has been potatoes.

 

[silvermander]

Rikki, potatoes are a go to food for me. When nothing else works, I go for low fiber cereals, rice, potatoes, egg whites. Honestly, that whole time I was so sick, I would go back to my white diet.

I don't eat anything spicy. I just can't do it. I also have a pepper allergy. I ask about black pepper whenever I'm out to eat, but have to be careful of white pepper as well.

With all this IBD stuff it comes down to each person being different, and you have to figure out what works for you. I've been dealing with it almost my entire life, so I'm used to it. It sucks to be used to all this, but it's better than the alternative.

I'm not going to be online much this week, but you and Cory know how to find me.

 

[Judith]

the allergy symptoms happened before the UC and IC about 4 years ago, and now the stomach issues. I have had test done for lupus but they say its not it. Is a creatinine clearance test done with blood?

Blood and urine, yes.

How are you feeling since taking the Steroid Pak?