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Current Condition with Crohn's

Little Introduction

I'm liss. I started noticing symptoms of CD around six years ago when I was in sophomore year of high school. My parents ruled it out to be a sensitive stomach. They tried to get me to see a GI specialist but we never pursued further with it once we received the recommendation from the doctor. I was prescribed Omeprazole.

Years went on, I enrolled in college, still having the same pain, and still unknown to what was causing it. I was officially diagnosed with CD when I went in to the ER a couple nights after a night of heavy drinking. I had severe abdominal pain and intestinal bleeding for two days. Funny thing, I was admitted into the hospital to have my appendix removed. The first CT scan I had showed a swollen appendix so the doctors rolled with it. It wasn't until I was in the pre-op room discussing the procedure with the surgeon when I brought up the blood in my stool (it was the reason I had written down on the paper for coming into the ER in the first place). He told me bloody stools don't happen with appendicitis.

I had another CT scan, and then another. I did not have surgery. A GI Crohn's Specialist diagnosed me with Crohn's Disease, and I felt relieved. To finally know what was causing this pain all these years lifted a fog. But it has only gotten worse.

I'm currently having heavy intestinal bleeding. I believe I was in remission for a short period but my symptoms slowly started to return. I started bleeding a few days ago, not too much at first, but now it ceases to end. I went into the ER last night and got fluids and a prescription for Prednisone.

The next step with my GI is to have a colonoscopy to see what treatment I need. But without insurance, it's impossible to go through him. I'm going tomorrow to a clinic that may be able to help me. I know I need treatment as soon as possible because this disease only seems to get worse as time goes on.

Good luck to everyone out there that's struggling just as well.
 

Trysha

Moderator
Staff member
That is quite an ordeal for you to be enduring.
There are free clinics to help you and maybe if you google free GI clinics or something similar there will be a reference to help.
It is concerning that the ER did not direct you to available free help.
Feel better soon
 
I went and scheduled an appointment today at a clinic that provides PCPs for low income individuals and families. My appointment isn't until August, but what I'm worried about is that they said their PCP will send out for me for the colonoscopy. I don't know if that means that I'll be recommended to a specialist and be in the same boat I'm in now, or if I'll actually be able to have a colonoscopy done. That's the next step toward treatment. I think it would be silly of them to run that clinic though if a colonoscopy without insurance wasn't possible, so I'm hoping for the best.

Thank you for your kind words.

:strawberry:
 

Scipio

Well-known member
Location
San Diego
I don't know if that means that I'll be recommended to a specialist and be in the same boat I'm in now, or if I'll actually be able to have a colonoscopy done. That's the next step toward treatment. I think it would be silly of them to run that clinic though if a colonoscopy without insurance wasn't possible, so I'm hoping for the best.
Call them and ask them. I agree it would be silly, but I've known organizations to do silly things. Better to ask now and then push for a different solution now if the news is bad than to hope in silence and be disappointed in August and end up that much farther behind.
 

Lynda Lynda

Member
liss, welcome. 💕
I hope you can get your colonoscopy soon.
Keep in touch.
You have my support. 🙂
 
Last edited:
Good idea Scipio, I thought of giving them a call to clarify too. At least then I'll have peace of mind, whether the news be good or bad.

Thank you, LL. I hope I can too. I appreciate your support.

So far this has been a kind place. Thank you for your words. :heart:

:strawberry:
 
Daily Update

The intestinal bleeding has stopped. I'm on a tapering dose of Prednisone for now, which seemed to do the trick last time I had the bleeding. I feel very faint throughout the day, stomach pain comes and goes, hurts like a mf. I went to work successfully today though so that's a plus. I'm not giving up on this job, no matter how bad it gets. Hopefully the steroids can hold me over until I have my colonoscopy.

I feel hopeful. I'm happy to have such tremendous support from my boyfriend. I don't have familial support at the time so it really helps make up for a lack of having that. And I'm happy to be a part of this forum as well. I'm very new but I feel welcome.

Stay strong, fellow Crohn's buddies. We'll make it through.

:strawberry:
 
Are you on any other medications for your Crohn's? If not, your symptoms are more than likely to come back, because when you are on prednisone, it is suppose to calm down a flare, and when you taper off prednisone without any sort of maintenance medication, your symptoms will reappear. If you are not on a maintenance med, I would talk to your doctor about it. Hang in there! You have my support!
 
I'm not on any other medication. I don't have insurance so I've been unable to progress with my treatmeant, for as far as I had known until recently. Hopefully after the colonoscopy, I'll be getting treated. Thank you for your support! :)

~random question~

Does anyone else's head or like ear area feel kind of weird when on Prednisone? I'm pretty sure it's from the steroids but just thought I'd ask. It's an unpleasant feeling. Kind of hurts sometimes. :(

Hope everyone is doing well today. :heart:

:strawberry:
 

Lynda Lynda

Member
I'm not on any other medication. I don't have insurance so I've been unable to progress with my treatmeant, for as far as I had known until recently. Hopefully after the colonoscopy, I'll be getting treated. Thank you for your support! :)

~random question~

Does anyone else's head or like ear area feel kind of weird when on Prednisone? I'm pretty sure it's from the steroids but just thought I'd ask. It's an unpleasant feeling. Kind of hurts sometimes. :(

Hope everyone is doing well today. :heart:

:strawberry:
All my medications
make me feel weird 🤪.

I'm tired.
Or have a brain fog.
Then there is my tinnitis.
My mouth gets dry.
Did I say tired already 🙄.

Take Care. 🐝
 
All my medications
make me feel weird 🤪.

I'm tired.
Or have a brain fog.
Then there is my tinnitis.
My mouth gets dry.
Did I say tired already 🙄.

Take Care. 🐝
I am alwaaaays tired, so I feel you there.
Smoking a couple bowls helps lol but hopefully once I'm done with my steroids I'll start to feel 'normal' again.

:strawberry:
 
Daily Update

Starting to worry a little bit. Got very dizzy today, practically wobbled my way to bed when the lightheadedness hit me.

The weird sensation in my head is starting to feel familiar. I was diagnosed with malnutrition a few months before I found out I had CD. It's so hard to eat enough and drink enough when all I do is vomit it up every other day. I'm thinking I'm falling back into malnutrition but let's hope not. I'll try and eat more nutrients and see if this feeling goes away. Any tips for staying on top of being nutritionally sound? It's always been a hard struggle of mine.

:strawberry:
 

Lynda Lynda

Member
Daily Update

Starting to worry a little bit. Got very dizzy today, practically wobbled my way to bed when the lightheadedness hit me.

The weird sensation in my head is starting to feel familiar. I was diagnosed with malnutrition a few months before I found out I had CD. It's so hard to eat enough and drink enough when all I do is vomit it up every other day. I'm thinking I'm falling back into malnutrition but let's hope not. I'll try and eat more nutrients and see if this feeling goes away. Any tips for staying on top of being nutritionally sound? It's always been a hard struggle of mine.

:strawberry:
cmack is a good resource regarding nutrition.

I drink Ensure Drinks right now. Lots of vitamins in there, but lots of sugar. But I haven't lost but a few pounds. Always check with your doctor before starting any kind of new "diet."
🌻
 

cmack

Moderator
Staff member
Daily Update

Starting to worry a little bit. Got very dizzy today, practically wobbled my way to bed when the lightheadedness hit me.

The weird sensation in my head is starting to feel familiar. I was diagnosed with malnutrition a few months before I found out I had CD. It's so hard to eat enough and drink enough when all I do is vomit it up every other day. I'm thinking I'm falling back into malnutrition but let's hope not. I'll try and eat more nutrients and see if this feeling goes away. Any tips for staying on top of being nutritionally sound? It's always been a hard struggle of mine.

:strawberry:

Hi lissabean,

I'm sorry to hear you are struggling with malnutrition. Has your doctor recommended any vitamins? I take vit B12 1200mcg time release and vit D3 2000 IU each day. I also take a non synthetic, natural non GMO sourced multi vitamin.

Bland foods are less likely to come back up, also you could try smaller portions. White rice and potatoes seem to get me through rough times. Dizziness could be caused by an electrolyte imbalance so I would try some Gatorade or electrolyte solution from the drug store. If your dizziness persists after getting some electrolytes and food into your system, you should see a doctor, this could be caused by anemia among other things. Best wishes, keep in touch.
 
I usually just take a normal adult multivitamin but maybe I should look into taking more? I know I have a vitamin deficiency with CD but I guess I don't know how bad it actually is since I don't see a doctor regularly.

I always struggle with foods, usually with not eating enough. Sometimes I'm really in the mood to eat but everything just seems to hurt these days. I'll try blander foods, I do eat a lot of junk to be honest. And I definitely struggle with hydration. It's just hard to keep up with myself sometimes, I just get to feeling bad.

Thanks for the advice. I'm feeling okay after the steroids. I don't feel completely 'normal' but I feel better. I still keep throwing up, but it's less often so I guess that's improvement. I appreciate all of the support. It's very comforting to know I'm not alone in this.

:strawberry:
 
I figured something out during my last flare. Even though I don't have trigger foods that make my symptoms worse, I ate blander foods such as potatoes, eggs, white bread, and peanut butter during my last flare thinking it would be easier on my stomach and I think that made things worse, because these foods do not have much nutritional value, so I ended up losing 25lbs. So my point is try to eat nutritious foods that is easy on your stomach and does not make your symptoms worse.
 

Lynda Lynda

Member
Jelly, I am starting to add some solid foods back into my diet. Just experimenting right now. Nothing that is considered "health food", but I am crossing my fingers I can keep slowly adding more foods. Starting with very simple sandwiches. It is so nice to taste, chew and swallow real food. Today I feel hopeful. I am having better BM's too.

Take Care. 🐥
 

Lynda Lynda

Member
I am doing great! How about you Lynda Lynda?
I am more confident about seeing the FNP at my Gastroenterologists office now.
I feel that I am tolerating my 6mp and Humira well
My routine blood work is stable.
Tomorrow I start taking the VSL#3 probiotic.
I am at the beginning of my Crohns journey.
I am more at ease now that I have a diagnosis and am starting treatment.
Take Care.
 
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