Sherrys Story

[SherryLynn]

Hello,

Wow what a month I have had.

I started out having 4 days of what felt like bad gas pains. During this time I just kept thinking, it will pass, it always does. 4 days however was unusual and as the night was quickly approaching I just didnt think I wanted to try and make it through another night, so I went to the emergency room.

I had 2 types of CT scans, a colonoscopy. Tons of blood tests and the results are that I have Crohns.

If I understand this correcty the findings are that the terminal ilem is abnormal. The tests talk about diffuse wall thickening with associated edema and mucosal enhancement. I have no idea what all that means, except that I realize that there is a true problem.

I have been going through this mostly alone and this sucks so much! I am writing this in hopes to get the proper encouragement I need to press on and make this negative into a positive but its so hard.

I am 50 years old. I was diagnosed with major depression and bipolar when I was about 25. But when I went through menopause it was like a light switch and all of that went away. Well .... thats what I was thinking .. until I realized that about a year ago my dr had found that I had a vit D and B12 deficiency and I have had my levels good for a while now. So was it menopause or was it Crohns...

Anyhow... I have been given 2 meds to take. Azathioprine 50mg and Prednisone 20mg twice a day, so 40mg a day. I am having a very difficult time starting them, I need some encouragement or a kick in the butt. Every time I think of starting them I just cry. I cant belive this has become my life and that I am going to put things in my body that can cause me cancer! I can deal with the pain if I have to so I think maybe I can just deal with it and then I remember that maybe I need these meds to reduce the swelling so that I dont have a blockage, wherefore I "have" to do this. I wish I'd of asked the dr more questions or somthing I just feel so scared and not ready for this. I was suposed to start these on thursday and I have put it off while trying to educate myself on this, and making excuses. I gave myself a deadline of Monday, I "Must" do this on monday, but that is tommorrow
Its coming too fast. Ive read that this will be better if I am in a good frame of mind and I promise you that I am trying, but I am not winning this.

The other thing I am struggling with is my diet. Before this episode, I was really proud of myself because I had started gardening in my yard and was on a high fiber diet to loose weight. I am over 300lbs. Now I have to relearn to eat all over again. Most of the foods are white and they are the foods that I had learned to live without lol the irony.

So this is where I am right now. I found this fourm and I was so thankful. When I stopped smoking in 2009 I had found a fourm like this and they helped pull me through it so I do have faith in this type of support. I look forward to getting to know you all.

Thanks for listening,

Sherry

 

[GeologyRocks]

I am so sorry you have to deal with this alone, my heart goes out to you. Hang in there!! I have not be diagnosed with anything yet, but the diet part can be hard. It's just trial and error.

Stay strong xoxox

 

[SherryLynn]

Thank you for your encouragment, greatly appreciated

Well I did it.. totally freaked out while i did it but ive taken my first doses of aza and predizone. So far so good, my nerves and drama have been the worst part so far.

 

[GeologyRocks]

I'm glad you decided to start your medication. If you feel funny at all please promise to go to the emergency room!! It's better to go and it be nothing than not going at it be something. And keep asking your doctor questions. I think they like it because they can prove how smart they are. If you ever need to vent or just need someone to talk feel free to message me.

Have a wonderful stress-free day xoxoxox

 

[SherryLynn]

So far I have 2 complaints. So minor that It feels like I just need to deal with it. Almost from start my throat felt irritated. Either it was there and im just feeling it more or its aggravated. The other is that I had a sweating episode but that only lasted about a minute, it passed.
Called my dr to get a better understanding on how to do the pres and I took 20mg this morning and tonight I take 20mg more, so 40 total for the day.

 

[David]

Hi Sherry and welcome to the community. I'm really glad you joined and shared your story. I can feel your pain and worry and my heart goes out to you. *hugs*

I'm a little late to the game but yes, taking your medication is extremely important. Yes, you may experience some side effects, but you need to put out that fire (inflammation) in your intestines before it leads to other issues which will be much worse than side effects. In addition, the chance of those meds giving you cancer is low. The risks from untreated Crohn's Disease are much higher.

As for diet, if they put you on an all white food list then I don't agree with them. Now, if it works for you, great! More power to you as everyone with this disease is different. But that you are gardening in your yard (I do the same across the state from you), especially if you're doing it organically is a step in the right direction in my opinion. You might not be able to tolerate everything you grow, especially if you're in an active flare, but getting out and gardening is such a good idea.

I'm a BIG fan of the paleo diet for Crohn's Disease. A close second is the Specific Carbohydrate Diet. Many people have done very well on them and both involve wonderful foods rather than "white bread, white rice, and white potatoes". In addition, I would strongly suggesting looking into enteral nutrition. It's a wonderful treatment option that can help you get this flare under control ASAP.

And finally, what were your vitamin B12 and vitamin D levels last time you were tested? You mentioned deficiency so I'm curious what you've gotten them up to.

All my best to you

 

[SherryLynn]

I am so new to all of this and feel so overwhelmed ( although that overwhelmed feeling is better today) that I am sure ive confused or misunderstood some of these changes that I am doing. That said, this is why im so greatful that I found this fourm. Ive been a bit of a drama queen this past week and I think I may be moving past that. The pitty party may have derailed, I hope.

What my dr said was to take my meds, come back in 2 weeks for blood work. Until then I am to be on a bland, low fiber diet. When I researched this I came up with all of the white foods vs all of the whole wheat that I had been eating. I also have been realizing ( since Ive calmed down a bit) that maybe thats not my diet for the rest of my life :thumleft:

About the vitamin levels. I dont know the answer but you have reminded me of somthing I read here. I need to take charge of my own health therefore I am going to see if I can get a copy of my records from the hospital.

Thanks for responding, I am grateful for any assistance!

Sherry

 

[David]

Hi Sherry,

I completely understand and empathize with the feeling of overwhelm. There is a very steep learning curve to this disease, but we're here to help you with that. And yes, taking charge of your own health so you can advocate for yourself to ensure you get the care you deserve is VERY important with this disease. That you've realized that and are already taking steps puts you ahead of the curve. Good for you!

 

[Keepingfaith]

Welcome to the forum! :welcome: ,

I am sorry you have this condition to be here though. Everyone copes with the disease disserently. Some are diagnosed within a few weeks of their symptoms while it may take YEARS of being in pain for someone to be DX & they have already had time to accept this DX. You are not alone & this is a very lovely forum with a lot of supportive people. Prednisone can also make you feel very 'crazy', depressed & sad. As you wean off it you will feel more 'normal' in that sense.

Don't give up! It gets better! It will take some getting used to when it comes to taking the pills, eating certain foods etc. but with time it will become 'normal' to you. You can live a fantastic, blessed life with Crohn's! Support is key! :ghug:

 

[SherryLynn]

I would like to copy text from one of my tests that I had in the hospital and see if one/some of you could explain it to me. I dont know what some of this means. I have attempted to remove personal info from this report other then my first name.


CT Enterography


.. Final Report ..

SHERRY -

Result Type:
Result Date:
Result Status:
Result Title:
Performed By:
Verffied by:
Encounter info:
CT Enlerography
May 29,201209:34
Auth (Verified)
CT Enterography

• Final Report •
Reason For Exam
Abdominal Pain Generalized
Report
EXAM; CT ENTEROORAPHY
INDICATION: Abdominal pain generalized
COMPARISON: Yesterday
TECHNIQUE: A CT enterography protocol was performed with Volumen oral
contrast and 145 mL of OPTi 300 intravenous contrast administered followed
by contiguous axial images obtained from the lung bases to the pelvic
floor. Coronal and sagittal reformations are provided for review.
FINDINGS:
STOMACH, SMALL BOWEL AND COLON: The terminal ileum is abnormal. There is
diffuse wall thickening with associated edema and mucosal enhancement. It
spans roughly 30 cm. There are areas of adjacent mesenteric stranding and
a small amount of fluid in the right lower quadrant. There is very minor
prominent vasa recta supplying this region
The remainder of the small bowel and colon is normal. No abscess or
fistula. A few tiny reactive nodes are present in the right lower
quadrant. No bowel obstruction or stricture.
A few sigmoid diverticula.
LUNG BASES; Subsegmental atelectasis in the right middle lobe and lingula.
LIVER: No mass. No intrahepatic biliary dilatation. Hepatic steatosis.
GALLBLADDER: No wall thickening. No stones.
COMMON BILE DUCT: Normal caliber. No stones.
SPLEEN: Within normal limits. Single benign splenic calcification.
Printed by:
Printed on:
Page 1 of 2
(Continued)

CT Enterography
• Final Report •
PANCREAS: No mass. No pancreatic fluid collections_
ADRENALS: No masses.
KIDNEYS: No masses. No hydronephrosis.
LYMPH NODES: No adenopathy.
PERITONEAL CAVITY: Free fluid in the dependent pelvis.
OSSEOUS STRUCTURES: Stable sclerotic focus in Ll.
ABDOMINAL AORTA: No aneurysm.

SHERRY

IMPRESSION:
No significant change from yesterday with 30 em of abnormal terminal
ileum. The bowel is edematous with mucosal enhancement. Findings likely
either represent an infectious terminal ileitis or Crohn's disease. No
colonic involvement as previously questioned. Mild mesenteric edema and
free fluid in the right lower quadrant but no abscess or fistula. Consider
colonoscopy with terminal ileum biopsy.

***Final Repore·*·
Diceated By:
Verified and Interpreeed
Transcribed by:

6/11/201215:04
Page 2 of 2
(End of Report)

 

[David]

Hi Sherry, could you specify the parts that are confusing to you please?

 

[SherryLynn]

Well, Pretty much want to know the findings of this.

The terminal ileum is abnormal. There is
diffuse wall thickening with associated edema and mucosal enhancement. It
spans roughly 30 cm. There are areas of adjacent mesenteric stranding and
a small amount of fluid in the right lower quadrant. There is very minor
prominent vasa recta supplying this region

 

[David]

In Crohn's Disease, it is common to see thickening of the bowel wall which is what they saw on your CT. Edema would be swelling due to an accumulation of fluid. Mucosal enhancement is what they see on the CT with contrast anytime there is some sort of abnormality. In the case of Crohn's Disease, examples might include inflammation or ulceration. The mesentery is part of the peritoneum (the lining of the abdominal cavity) that helps hold the jejunum and ileum in place, however, I'm not sure what they mean by "stranding", sorry Hopefully someone else does as I'd like to know as well.

There was some sort of fluid in the lower right area of your abdomen. The vasa recta are small arteries.

I hope that helps? Hopefully someone else can fill in any blanks.

 

[SherryLynn]

You inturpet those where I can understand them. Thank you.

" There is very minor
prominent vasa recta supplying this region "

Do u know if this is normal or abnormal or if it says anything I should know thats not exactly right?

 

[David]

I don't know enough about the vasa recta and where they normally supply blood to, to comment. But vasa recta themselves are perfectly normal. Sorry I'm not much help on that one