Recently diagnosed and looking for advice and support

[Magoo909]

Hello! I am so glad that I have joined this forum. I have been reading various posts from it for awhile but decided to take the plunge and join today as I don't really have anyone that I can talk to about this. I'm 38, from Iowa and was diagnosed with Crohn's in early August after my appendix ruptured and the Crohn's was found in my small intestines and colon. I had about four inches of my intestines and a bit of my colon removed along with my appendix. I was in the hospital for a week and then recovered at home for two more weeks before going to work. I had just been hired at a new school before my appendix ruptured (I teach high school special ed and english) and had already missed two weeks of school and wanted to get going before i got too far behind. I went back too early and was in a lot of pain most days.

It's now been five months and I'm feeling pretty well. I get pain once in awhile in my lower right quadrant and sometimes in my lower left quadrant. The pain is a dull standby burning pain and usually comes and goes quickly. I am still unsure if this is residual pain or scar tissue pain frpm the surgery or if it is from the Crohn's. Very recently I have also been extremely tired yet unable to sleep well. And last night I woke up in the middle of the night drenched in sweat. Something that never happens to me, especially in my not so warm bedroom.

I was diagnosed with IBS years ago and sometimes wonder if it has really been Crohn's all this time.

I am currently taking 175 mgs of azathioprine per day (1.5 in the am and 2 in the pm) and a multi-vitamin. My doctor told me I can eat whatever I want, but everyone else I have spoken to and everyrhing I have read says that food can affect me.

I'm sorry that I have bombarded you all with a lot, but I am wondering mostly if the pain I am experiencing could be from the Crohn's or the surgery? Also, could my exhaustion and sleeplessness be the result of being B12 deficient?
I am having my first colonoscopy (I had a sigmoidoscopy in 2009 after bleeding in my stools but only internal hemorrhoids were found) in early February and should know more then about whether or not my Crohn's is active.

Thank you for taking the time to read this and In would appreciate any advice or thoughts!

 

[Trysha]

Hello Magoo
Welcome to the forum
The symptoms you describe could be a crohn's flare and perhaps it would be wise to let your GI know what is happening since you may need some treatment
Hopefully your Doctors have ordered blood work such as CBC,Sedimentation rate,CRP
Iron levels and B12 etc
Drenching sweats may also be due to crohn's
I would suggest you get in touch with your doctor soon and inform what is happening to you.
Feel better soon
Hugs and best wishes
Trysha

 

[Magoo909]

Thanks forgetting back to me! I was just coming back to add to my story that In am on medication. I take 175 mg of azathioprine per day (1.5 pills in the am and 2 in the pm). I have blood work done every two months now and justvhad it done today in fact. I did asknthe phlebotomist ifbthebtests included checked for B12 and she said no. I was wondering if it was a flare but the symptoms I have read that others have seem so much more intense. I will call my doc tomorrow. Thanknyou again so.much for responding. It's really uplifting to get some feedback and support!

 

[SarahBear]

Welcome to the forum!

First, it's very likely that your symptoms have indeed been Crohn's all along. IBS is often used when they just plain don't know what is going on. Many of us diagnosed with Crohn's or UC were told we had IBS previously.

Night sweats are considered a symptom of Crohn's. That combined with the fatigue you're experiencing could indicate a flare. To clarify, have you been experiencing either of these symptoms since your surgery, or have they only begun recently?

You may or may not need to watch what you eat. That's vastly different for everyone. It can help to keep a food journal, in which you dictate what you eat and drink and your symptoms. The more detailed you are, the easier it is to connect the two. Keep in mind though, that everyone's trigger foods are different and you may not have any at all. However, some common triggers are raw vegetables, spicy foods, caffeine, carbonation, and dairy. While in remission, any trigger foods you have might stop causing you symptoms, but they also might continue to do so. Unfortunately, the food issue is pretty much a try-it-and-see sort of thing.

Don't feel that your symptoms being less severe than others means you can't be in a flare, and definitely don't feel as if that means you don't have a right to share and vent here when you need to. Everyone's symptoms are different, and can even vary between flares. If there is disease activity, the earlier you catch it the better, so don't ignore even mild symptoms.

:hug: I hope things get better for you soon!

 

[AJC - Australia]

Definitely worth checking the B12…..if you have had the terminal ilieum removed (which sounds like you have) then you wont absorb B12 like a normal person, it is the bit of the intestine that absorbs it. Most people, including me, have b12 every 3 months and will do forever more (unless of course they come up with a bowel transplant and can somehow replace that part of the gut) . This is IMPORTANT, you must NOT let your b12 get low it is very very bad for the body if it does, it starts to break it down from other places in your body, like your spine.

the pain could easily be post operative, even 6 months later you will still get the odd poke and readjustment….if it only last a few minutes it is probably nothing to worry about, but if it lasts a few minutes and happens again and again over and over then there is a problem and they should look at it via a camera.

the calcoprectin test is really cool - its a stool sample that can tell if you have a flare, well it can tell pretty much if you are or not and nothing like as invasive and time consuming as a colonoscopy.

i hope that helps.
enjoy your food.

 

[Magoo909]

The fatigue and night sweats are a new thing. I've felt very, very tired yet unable to sleep (still getting some sleep but trouble falling and staying asleep) for about a week. One day it was so bad I slept for fourteen hours and didn't go to work the next day. I thought I was gettin the flu by never got other flu symptoms. The night sweats have inly happened once.

I'm going to ask my doctor about B12 today. Luckily I am seeing the "Crohn's expert" in Iowa. When I asked him whether the pain I was feeling was a flare-up or lingering surgery pain he thought it nay be scar tissue tugging. But I just wanted to hear the opinion of other Crohn's sufferers as I am not sure what a flare-up feels like.

Thank you for your response. I wish I had joined this forum months ago!

 

[DJBHeat]

Hello there! What you eat can most definitely affect how you feel. When i was first diagnosed with Crohns it took me a long time to figure out what foods had a positive or negative affect on me. B12 is popular and would probably help with feeling tired, so definitely check that out. There's plenty of other supplements out there you can take too. Unfortunately not everything works the same with everyone, so you'd have to try them and see if it works for you. I've been drinking Shakeology for a while now, it seems to help. There's also plenty of research regarding things like vitamin d3, fish oil, and coconut oil...all of which I take as well.

Like I said, theres plenty out there. You just gotta do research and try them to see if it works for you

 

[Magoo909]

I am definitely feeling more pain tonight and think I might be having a genuine flare-up. What do you do for the pain?

 

[Trysha]

Usually I will sit (sometimes sleep) in the recliner with hot water bottles and heating pad
And feet up
Lying down in bed makes it worse for me
Feel better soon
Hugs
Trysha

 

[Justanothercp]

I am definitely feeling more pain tonight and think I might be having a genuine flare-up. What do you do for the pain?

I typically try to go on a liquid diet for a few days.

 

[Magoo909]

Are there certain painkillers that help? I know not to take ibuprofen, which used to be my go to. Tylenol doesn't seem to help much.

 

[SarahBear]

Unfortunately, there's not much in the way of painkillers that doesn't need a prescription. Like Trysha, I mostly hang out with my heating pad (electric blanket is nice too, especially if there's joint pain as well) and just try to read, watch TV, or do anything other than focus on the pain. Sometimes ginger ale, ginger tea, or peppermint helps to reduce nausea and calm the stomach a bit. Have you called your doctor yet?

 

[Magoo909]

I contacted my doctor through the portal message system yesterday about B12. I got a response early this morning from the nurse. She said that my doctor was gone yesterday but that she would talk to him today. They tested my B12 levels in October and they were fine - she said she wasn't sure how long it takes for B12 to deplete but would get back to me when she talks to him.

My pain, so far, has not been associated with nausea or heartburn, or anything like that. It has been a burny/stabby pain in my lower left and lower right quadrants. It comes and goes and goes and doesn't last too long but yesterday night it was starting to last for longer periods of time. I guess this could still be pain associated from the surgery, but this along with my fatigue, inability to sleep well and night sweats (which thankfully only happened one night), are leading me to believe that I am having a flare-up right now.

Thanks again for all of your support! It is so wonderful to be able to talk to others who understand!

 

[Trysha]

Let us know how things go for you
Feel better soon
Hugs
Trysha

 

[Magoo909]

My doctor is swnding me an order for blood work to check ny B12. I had a rwally rough night again of not sleeping well at all. I also had more pain but used a heating pad which helped. Do any of your BMs change during a flare-up? So far mine are the same as usual. By no means normal, but normal for me. I usually go about 3 times a day and it is always diarrhea. I just would expect for it to get worse during a flare.

 

[Trysha]

Sorry to hear of your bad night and hope you are now feeling better
Bowel movements will vary person to person and also depending on diet
Sometimes it seems there is no rhyme or reason. It just happens
Symptoms can also vary according to where the crohns is situated in the body
For some people the frequency is so bad as to require chemistry rebalancing among other things and
Which may require IV replacement in hospital
Hugs
Trysha