Possible symptoms of Crohn's..Would appreciate any thoughts, advice and suggestions

[idreamofpeace]

Hell I am 28 yr old female and I am hoping I have came to the right place for advice, suggestions and other stories. I am really confused, concerned and now know (after researching) the symptoms I am having are not normal. I will try my best to make this short and sweet...

-I have had rectal bleeding and irritation around rectum after bowel
for years 5+ and always thought I needed more water and fiber in my diet.
-For the last couple years I have rarely have a regular bowel movement, I am either constipated for days or have several days of diarrhea, I don't know if it matters but a lot of the time my stool floats.
-Bloody diarrhea
- I occasionally have stabbing pain in my rectum that last less than a minute.
-abdominal cramping
-bloated
-gas
-nauseous
-dizzy/light headed/shaky


I honestly did not think this was serious until recently...this is what happened:
It started with horrible headaches for 2 weeks, in my right eye and right side of head...no pain meds helped! Then I started having bloody diarrhea (7 bowels the first day) at one point it looked like there was no feces in it just bloody tissue. After the first day I could no longer see blood but still had around 3 to 4 bowel movements each day all diarrhea..I am currently on day 5 of this.

This happened to me 2 other times in the last 6 months, the first 2 times I thought maybe I ate something bad and it was a reaction, but it seems to be getting worse, the 1st time was only one day, the 2nd time was 2/3 days and now this time it has been 5 days. also the first 2 times I did not have a headache, so not sure if this is related.

Also I am not sure if this is related or not but I had a very early miscarriage during this ( took a home pregnancy test and showed positive, then started bleeding heavy the next day) and sadly this is my 3rd miscarriage.

I am having no weight loss and although I do feel fatigue/tired often...it is not more than any other day, I am a stay at home mom and am able to rest when the kidos allow me.

So here is my concern...after researching it seems I am having a lot of symptoms of Crohn's disease, which really scares me b/c my aunt suffered from crohn's and passed away after one too many surgeries : (

I have made an apt with my primary doctor for next week and plan to ask if he will refer me to a specialist...

I would appreciate any thoughts, advice, suggestions and to hear about others stories hat are similar.

Thank you very much for taking the time to read my post and thank you in advance for responding. I really do appreciate it...I am really confused right now and worried this may be serious.

 

[idreamofpeace]

also I forgot to mention...I get boils on my bum often : /
not sure if it is related...

 

[Leslie]

I'm newly diagnosed with Crohn's but I think you are doing the right thing to go to a specialist. Crohn's does run in families. They might want to do a colonoscopy on you, which I know sounds horrible. I put mine off as long as I could, which I regret now. While the laxative isn't fun (don't make plans that night), the colonoscopy wasn't that bad. I was ready to get answers, which put me in the right mindset. Hopefully you don't, but if something does come back positive know you will be okay. The disease totally sucks but there are treatment options. It's a difficult journey but one day at a time and you might feel better than you have in a long time. I hope this helps.

 

[AndiGirl]

I am not a doctor and definitely not qualified to give a diagnoses, but your symptoms sound like they could be related to either Crohn's Disease or Ulcerative Colitis. I think you are doing the right thing by going to a specialist. Please keep us update and welcome to the forum.

 

[Astra]

Hi Dream
and welcome

Yes I agree, you really need to be referred to an IBD specialist to rule out UC or Crohn's but it sure sounds like it to me, more so UC with the bleeding et al.
Be prepared, document everything in a journal, times and dates, symptoms, whether food is a trigger, family history, everything you've told us, etc
The more your doc knows the better. Don't be fobbed off with IBS, you don't bleed with IBS!
Good luck, let us know how you get on
lotsa luv
Joan xxx

 

[Jer's Girl]

All of that, except for the miscarriages, really sounds like Crohns to me. I have had just about all of them myself. I’m sorry for all you are going through and I hope that you get a diagnosis soon so that you can be treated.

Weight loss does not always go along with Crohns. I have lost a ton of weight when going through a flair, but I have also gained weight! Our bodies all react differently. Some people have had a hard time getting diagnosed because their Dr insisted that they would have had weight loss, and that just isn’t always the case! Some of us Crohnies are even on the chubby side. This disease really affects different people differently.
I am so sorry to hear about your miscarriages. What a horrible thing to have to go through. Just wanted to let you know that I have known several women who went through multiple miscarriages and were able to go through perfectly healthy pregnancies later. Also, if it turns out that you do have Crohns, that should be no deterrent to you getting pregnant. Plenty of women with Crohns have healthy pregnancies, and even experience fewer symptoms during g their pregnancies for some reason.

Also, your aunts case was rare. Hardly anyone dies from this disease, although it can sometimes feel like a life sentence when you are first diagnosed! Not everyone even needs surgery for their Crohns. There are a lot of options for treatment out there.

Crohns can be tricky to diagnose. With or without a diagnosis, you are welcome here!

 

[idreamofpeace]

Thank you all

Thank you all for your responses. I really hope it is not Crohn's or UC, but if it is...I would like to know sooner than later. I am concerned it will be a long and expenses process of getting diagnosed. From what I have read it seems the average is a year or so before being diagnosed...not to mention how long many live with it before seeking medical treatment!

I am doing my best to write down all my symptoms and just in the last week have started to keep a journal of my bowels...which is just gross, but if it will help my doctor help me, it is worth it!

I have had irregular bowels for years but it seems it is now worse since I delivered my son 11 months ago and even more so in the last couple months that I have started weaning him form breastfeeding...not sure if it is related but I expected to get more energy the less I breastfeed and lately it seems like I am just as tired as when I was 8 months prego with him! If my hubby and kids would let me, I would sleep 12 hours a day...but again not sure if it is related, I just may not be getting good rest.

I am curious how other peoples symptoms started???? Was it something that gradually got worse, or something that was extreme all at once? From what I understand this is something that is different for everyone, but if you all would share with me your story of early symptoms and your journey of being diagnosed I would greatly appreciate it! Thanks (((HUGS)))

 

[Awbrey]

Hi and welcome you have come to the right place Ur eye condition kinda reminds me of when I had Irites (sp) auto immune thing that happened to me. It was horrible pain and was in my eye like someone was stabbing me, now I see that it is linked to my Chrons, only after reading some other posts on here. I hope u find out soon what is the problem wish you the best of luck

 

[ameslouise]

I am hoping I have came to the right place for advice, suggestions and other stories.

Yes! You did!

Anytime there is a significant amount of blood like that.... it's time to go to the doctor!

I agree that you should not accept IBS as a diagnosis - as you will learn from reading around the site, you do not get blood with IBS.

Please come back and tell us how it goes with your appt. I hope they find something soon, and you can get fixed up and feeling better!

Take care of yourself - Amy

PS Make sure they do some bloodwork - with all that bleeding it's likely you are anemic.

 

[idreamofpeace]

Okay, I know this is extreme but...what if its colon cancer?! Oh my goodness, what a scary thought!!! I love the net for many things but man you can really get yourself worked up reading other peoples stories. I have an apt for Tuesday and it can not come soon enough. Funny how I was able to ignore what was going on for so long and then now after researching I can not get to the doctor fast enough!

 

[CDDad]

Hi idreamofpeace,
Best not to think those thoughts. Just get to your appt, and you probably have a colonoscopy in your near future. Usually that will tell them what they need to know.

Good luck and try not to worry - really. The benefit is that you can start treament and get on the road to recovery.

 

[AndiGirl]

I agree with Joe, make your appointments and hope and pray for the best.

 

[e13 boy]

Hi Dream,

Boils on your bum? - between the age of 19-21 i had 5 anal abcessces.All had to be removed in seperate operations.During that period i also had 2 anal fistula.This was the start of CD for me but i was not diagnosed for another 10 years.
During that time i often used to get the stabbing pains you mention.
All the other problems you mention i can relate to as well.

I was badly let down by the Dr's i was under when i was a young man.I was diagnosed at 29 & underwent right side hemi colectemy straight away.

I hope for your sake you find out what is wrong ASAP.

Best Wishes

 

[idreamofpeace]

Anyone else have back pain? This just started three days ago, its lower-mid range of my back and I noticed it got a lot worse since I had a bowel movement? Any thoughts?

 

[idreamofpeace]

UPDATE-
I went to the doctor yesterday, she seemed pretty concerned and listen to everything I had to say. She did a urine test, blood test (including white blood cell and anemia) X-ray (b/c my tummy hurt when she pushed down on it) a Pap and physical exam of my bum. (she could feel an internal hemorrhoid) I dropped off a stool sample this morning which may have been the grossest thing ever! YUCK! She said she didn't want to give me any medications without knowing what it was in fear it may make it worse, but did give me prilosec....not really sure why thought b/c I do not have any heartburn???? Any thoughts?
She put in a referral for me to see a GI specialist and told me I should hear back about the referral next week, she also wants me to come back to see her next week for lab results.
Just thought I would update, hanks for all the support
((((hugs))))

 

[KaLa]

The stomach cramping, blood, and back cramps sound a lot like my ulcerative colitis flares. I have a lot of blood when I'm flaring, and also have the "tissue-like" clots at times. It is really scary to see all of that blood. I have had UC for 15-20 years, and it is still really disconcerting to see all of that blood. If you get a colonoscopy they can tell right away if it's UC. I'm not sure about Chron's. Good luck with everything.

 

[idreamofpeace]

UPDATE-
I woke up this morning feeling very weak and tired..I slept on/off for 12 hours. I didn't want to get anything b/c the cramping afterwards is just too much but knew I needed nutrients so I drank an Ensure shake and have been drinking plenty of water. About an hour or so after I started to get a very sharp/burning pain in my tummy which made me feel the need to vomit...I did and it was mostly clear with what looked like bloody tissue and I was shaking horribly! I called the doc and since it was after hours had to leave a message with the nurse. The doctor was very nice and called me back right away he said all my blood and stool test came back fine with the exception of my white blood cell was high and my liver enzyme was high...he called me in a prescription for nauseousness and asked me to come in first thing in the morning for an ultrasound of my gallbladder.

Any thoughts? Any input will be much appreciated...thanks

 

[idreamofpeace]

Please read-update

UPDATE-
I woke up this morning feeling very weak and tired..I slept on/off for 12 hours. I didn't want to get anything b/c the cramping afterwards is just too much but knew I needed nutrients so I drank an Ensure shake and have been drinking plenty of water. About an hour or so after I started to get a very sharp/burning pain in my tummy which made me feel the need to vomit...I did and it was mostly clear with what looked like bloody tissue and I was shaking horribly! I called the doc and since it was after hours had to leave a message with the nurse. The doctor was very nice and called me back right away he said all my blood and stool test came back fine with the exception of my white blood cell was high and my liver enzyme was high...he called me in a prescription for nauseousness and asked me to come in first thing in the morning for an ultrasound of my gallbladder.

Any thoughts? Any input will be much appreciated...thanks

 

[KaLa]

How are you now? If you are throwing up blood, you should go to the emergency room. That's really scary. Obviously, I'm not a doctor, but I wouldn't take any chances.

 

[idreamofpeace]

Thank you Kala. I haven't thrown up any more, just feel very weak and shaky. I am just sipping on water, but if I do throw up anymore or start to feel worse I will go to the ER. I just hate to go (take both my small children out) and them simply tell me to follow up with my doctor in the morning

 

[idreamofpeace]

Another update-CAT SCAN

Another Update-
I went to the doc this morning and after poking on my tummy a bit he thought a CAT scan would be better than an ultrasound, he was concerned with my appendix. After several hours of waiting, drinking a nasty drink and the CAT scan later...everything looks fine! I am relieved it is not my appendix or gallbladder and do not have to have surgery...but still have no idea what is going on! He did say he thinks it may be ulcerative colitis but need to be seen my the GI specialist for a colonoscopy...so they called the specialist today who received my referral today and he said he would encourage them to see me ASAP...in the meantime he gave me meds (not sure what yet...I will update med info once I pick up from the pharmacy) that should help with my bowel movements, he said it wouldn't stop them but at least slow them down a bit...I have been having 5-10 a day. Yesterday I ate nothing and still had 5 bm! Then today after all the waiting and scan and everything I came home and ate for the first time in nearly two days and within minutes had an accident in my pants! Oh my goodness, this can not be normal. I am really feeling overwhelmed and defeated....I just want to feel well : (

 

[KaLa]

I'm so happy to hear that you went to the doctor. At least it puts your mind to rest about those things. After your colonoscopy, you should know right away if it's ulcerative colitis. I have had accidents before too when I had a really bad flare. It's like you can't control how fast everything is happening. Try and hang in there. Once you have a diagnosis, you'll get the right treatment.

 

[idreamofpeace]

The doc gave me Dicyclomine 4 times a day...I just started yesterday and know it is still early but so far the only thing it has done for me is make me sleepy...still having frequent bm : /
He also gave me Promethazine 4 times a day for nausea...but I only had to take it once today.

I did call the office today and was told they would know when my apt with the GI specialist by tomorrow morning, so fingers crossed it is soon!

 

[Jer's Girl]

Thinking of you Idreamofpeace. I'm so sorry that you are suffering. Hang in there and keep fighting to find out what is going on with your body.

 

[idreamofpeace]

I have my apt with the GI Specialist on April 11th, not as soon as I hoped but better than most, I read where some people have to wait 6wks! So I am thankful to be one step closer. I also called and left a message with the scheduling coordinator and asked for her to put me on a cancellation list if possible

 

[idreamofpeace]

Thank you Jer's girl and all others for the support (((hugs)))

 

[idreamofpeace]

UPDATE-Possible gallstones
Just wanted to update on what is going on... I stopped taking the Dicyclomine for 2 days b/c I felt it was doing more harm than good. It made me have painful bm and more rectal bleeding with each one, still was having 3-5 bm a day. On the third day of not taking the meds I ended up in the bathroom feeling like I was in labor with horrible diarrhea. Then everything I ate went right through me the rest of the day, so needless to say I started taking them again. I did notice two dime size ball looking things in my stool...wasn't sure what that was about so after doing some online research I think it may have been gallstones??? Who would have thought you can pass them in your stool? Not me! But it happens.
I am feeling better today (day after taking meds) and just gonna wait for my apt with the GI doc and in the meantime try and find a balance of the Dicyclomine that works for me. The doc prescribed 4 a day, which was way too much and I couldn't get out of bed so I went to two a day to one a day at night time. I am able to eat when I take them and well....I like to eat, so maybe the painful bm and rectal bleeding is the less of two evils at this point

 

[KaLa]

Can you take probiotics to help with the diarrhea? They help some people, especially when you're taking antibiotics. The antibiotics wipe out all of your good bacteria.

 

[idreamofpeace]

UPDATE-1st GI VISIT

First I just want to thank everyone for their comments, input and support. I had my 1st GI apt today. It went really well. Dr Daniels is very nice, he did not rush and took the time to go over all my symptoms and recent testings. He def thinks I have IBD, he thinks UC is likely. He scheduled me for a colonoscopy this Friday, did a blood test today that checks antibodies and likeness of IBD and an X-RAY of my lower back to check for damage from possible arthritis or sciatic nerve damage. He also wants me to get my eyes check to see if I have inflammation in my eye. So I plan to call and make an apt today. At this point I just wait for Friday and see what the colonoscopy shows.
Any tips on the prep? And what to expect...
Thanks so much
: )

Below is the symptoms/issues I typed up and discussed with Dr Daniels:
******************************************************************
Issue for the last 6 months, 3 “episodes” starting with cramping, blood in stool and followed with frequent diarrhea. 1st time was a couple days, 2nd time about a week and 3rd time lasted 4 weeks.

Rectal bleeding and irritation around rectum after bowel
Pain inside rectum-sharp stabbing that last less than a min
Constipation and Diarrhea
Diarrhea and floating stool 3-10 times a day
Blood and tissue in stool- 3 different occasions
Vomit bloody tissue- 1 occasion
Abdominal cramping-Right lower abdomen, right upper, left upper-sharp and dull
Bloated
Gas
Nauseous
Headache (right eye)
Dizzy/light headed/shaky
Low fever, often feel warm to touch (back and tummy) but have no fever
Fatigue
Lower back pain
Feeling like I need to use bath...but don't
Have to go to the bathroom really fast, accident in pant

No know food triggers
Pain and symptoms seem to be worse in evening

Went to Fayetteville Primary care, urine test, blood test, stool sample, lower abdominal X-ray, physical exam and CAT Scan---all was fine with the exception of high white blood cell count, elevated liver enzymes and internal hemorrhoid.
Last PAP with Gynecologist was 4-8-11—everything normal, no concerns.
******************************************************************
I am going to post this to more than 1 thread, since I have different people who comment on other threads, sorry if you run across it more than once. Just want to update ALL those who have been nice enough to respond. : )

 

[razorback]

Thank you all for your responses. I really hope it is not Crohn's or UC, but if it is...I would like to know sooner than later. I am concerned it will be a long and expenses process of getting diagnosed. From what I have read it seems the average is a year or so before being diagnosed...not to mention how long many live with it before seeking medical treatment!

I am doing my best to write down all my symptoms and just in the last week have started to keep a journal of my bowels...which is just gross, but if it will help my doctor help me, it is worth it!

I have had irregular bowels for years but it seems it is now worse since I delivered my son 11 months ago and even more so in the last couple months that I have started weaning him form breastfeeding...not sure if it is related but I expected to get more energy the less I breastfeed and lately it seems like I am just as tired as when I was 8 months prego with him! If my hubby and kids would let me, I would sleep 12 hours a day...but again not sure if it is related, I just may not be getting good rest.

I am curious how other peoples symptoms started???? Was it something that gradually got worse, or something that was extreme all at once? From what I understand this is something that is different for everyone, but if you all would share with me your story of early symptoms and your journey of being diagnosed I would greatly appreciate it! Thanks (((HUGS)))

i dont know how long ive had mine, but mine was diagnosed in about a week. went to dr on a wednesday for pain in lower side (by groin area) dr did a blood test, said he wanted a ct scan done, had that done following monday then met with gastro specialist that wednesday, same day met with colon surgeon, then met again next morning. admitted to hospital on thursday and had 2/3 of colon removed on that friday (little over 2 weeks ago) ive had symptoms all my life, but after the pain in groin area i decided to go to dr. it was a very very fast diagnosis, and was confirmed in less than a week (confirmed after surgery it was crohns) but i never had anything bloody, and the surgeon said mine was really really severe and worse than they originally expected. and honestly 2 weeks after surgery and even with an 8 inch incision on stomach i feel better than i have for months.

 

[idreamofpeace]

Did anything show on you CAT SCAN or X-Rays razorback? So far all my tests have came back normal with the exception of high white blood count and elevated liver enzymes

 

[razorback]

i had an abscess on my colon about size of a small orange and the ct scan also alarmed my dr (my dr ive had forever is not the type to order something unneccessary, or send someone to a specialist or jump to conclusions) i didnt get to see the ct scan but they said it looked really bad and my dr kept asking and making sure i wasnt in extensive pain. i have a follow up appt on wednesday, so i hope to learn more then. i didnt have a colonoscopy either, they said it may of been too risky with abscess i believe

 

[idreamofpeace]

Wow! Bless you heart, you have really been through a hard time. Well thank you for sharing wih me and I am very glad you are feeling better! : )

 

[Bookworm]

I was very interested to read your post because many of your symptoms are the same as mine and I don’t have my first appointment with GI doc until the 21st. I’m so glad it went well and the doctor was taking you seriously. I really hope my appointment goes as well and that I can get in for colonoscopy as quickly as you are.

I noticed you mentioned x-rays for your lower back. I’ve been dealing with a sciatica problem since 2008. I have had two MRI’s, one 2008 and one in 2009. They found two bulging discs at the L4-L5 and L5-S1 levels. There was no change on the second MRI. The shooting pain down my right leg rarely happens now but I have daily lower back pain. My primary care doctor seemed skeptical that I am still dealing with daily pain three years later. Now I’m wondering if whatever is going on in bowels may be contributing to my back pain. I am interested to see what if anything they find regarding your back.

I’ll be thinking of you on Friday and hoping for some answers for you. :rosette1:

 

[razorback]

i think knowing right away helped me, that way i didnt keep thinking about it and worrying if i did or didnt have it. i also had night sweats as a symptom (which was caused by infection in abscess)

 

[idreamofpeace]

Thanks guys, I will update on Friday : )
Also I scheduled an eye exam for Thursday, hopefully there is no inflammation in my eyes, but better take the GI's recommendation and get it checked out!
I am 28 yrs old and have never had an eye exam...pathetic I know!

 

[idreamofpeace]

UPDATE-
Hello All, had the lovely colonoscopy today..it actually wasn't bad at all but the prep was a bit of a challenge. The first two hours I felt like I was in labor and questioned if I could continue the rest, but luckily once the food passed it was pretty manageable.
The procedure it self was a breeze. I went into the room, undressed, gave me an IV and had me rest for an hour. A WHOLE hour of silence! It was wonderful, I read a book and relaxed. (I have small children, this was a treat! lol ) Anyways, so they rolled me back to the room talked to the nurses and doctor a bit and I was a sleep before I knew it. I woke up in the recovery room. My doctor came in shortly after and told me that he expected me to be in bad shape with all my symptoms but said things looked really good. A relief..yes! But know what?! He said the only thing he found was Grade 1 internal hemorrhoids and a small polyp in the ascending colon, which he removed and sent for testing. He said he took a few biopsies for testing over random areas of the large intestines and colon (I think) but overall he thought everything looked good.
He told me his office would be calling me within a week or so once they get the results back from today and from my blood work and X-RAY to schedule my next apt with him. He sen t me home with a copy of his report and pictures, which I thought was pretty neat, I now know what the inside of my colon looks like YAY! j/k of course, but I have to laugh about it...what else can I do?!
So I am very grateful and relieved nothing serious is wrong but am a bit worried that I may continue to have these symptoms and no answers : (
All I can do is wait for my next apt and in the meantime watch what I eat!
Take care


Also I had an apt with the eye doc on Thursday, 20/20 near and far and no signs of inflammation and no concerns, so that is god. He also told me if I get the headaches again and pain in eyes to come in and he can check again!