Being told i may have a type of Colitis

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New Member

Date Joined Mar 2010
Total Posts : 1
   Posted 3/13/2010 5:53 PM (GMT -7)   
I've tried starting this sentence 6 times now and i don't know where to start. I'm 26 a mother of a 5 year old boy i live in Central California with my fiance and my son and soon to be step sons. I started getting severe abdominal pain about 5 years ago and was told its was caused by functional cysts. Which i have no doubt that some of the pain was cause by that as well as having tilted uterus. Then within the past two years I've experienced pain worse then giving birth made a few trips to the hospital being discharge with gas. I experienced my first case of incontinence after having dinner. There was no stopping. Very very embarrassing. Then came the rectal spasms. Severe pain in my rectal area usually taking place in the later evening or when i lay down. Started infrequently maybe once or twice every 6 months and has progressed in the past year and intercourse also causes the spasms. So i went to my gynecologist about two weeks ago to see why i would have such severe abdominal pain and as i said it's happen before but not like this. He said my womanly organs look great but he saw fluid build up in the left side of my colon and a lot of movement in my intestines. I gave him a list of things that have been taking a toll on my physical and emotional being and he sent me to the hospital to do some stool testing. Checking me for parasites, salmonella, blood cells, ect. He told me my symptoms sound like A type of Colitis or possible irritable bowel syndrome. Then two days ago my chest and throat were hurting so i went to the hospital where then i was diagnosed with Pneumonia. The doctor said my left lung is partially hazed over and swollen. Treating me with Levaquin and i went back to the hospital today because of sever allergic reactions to the medication. Then she was blunt with me and told me she is not really sure i have pneumonia or if the symptoms i'm having are cause by my immune system. She said it also seems as though i may have a type of Colitis. Later my Aunt whom i don't know well heard i had been in out of the hospital called me to see what was going on. When i told her she proceeded to tell me she's been fighting Crohn's disease for 12 years. This is my dads sister. I have done research on heredity of Crohn's disease but i just don't know. It is Saturday and my doctors are not in the office for me to share this new information with them. I'm just really scared. I don't know what to think or do. I just know i feel sick to my stomach and weak all the time. I 've been having severe joint pain in my shoulders, knees, and elbows. I've been more recently experiencing occasional heart palpitations, hair loss, loss of appetite, i've lost 17lbs this past month. i get muscle spasms in my legs, rectal spasms, frequent urination( two bladder infection in the past 4 months) never had before ever, abdominal pain, bloating, dull aching, toe numbness, rib pain on my sides, hip discomfort, and more recently night sweats and the shakes. The shakes is more internal i feel myself trembling like i'm cold almost. I'm sure i could think of more. I just wanted to maybe get some input. I'm getting referred to gastro doctor next week for my first colonoscopy and i'm scare. Any advice? No one has talk to me about my diet. I have never been lactose and tolerant but more recently drinking milk causing some cramping afterwords. Just any input i can get would be fantastic. Thank you. I'll keep you updated and let you know.

Veteran Member

Date Joined Feb 2005
Total Posts : 1373
   Posted 3/13/2010 7:21 PM (GMT -7)   
Hi Flowers4ever :)

I'm so sorry you are having to go through all this.. you have a bunch of different symptoms... Some which could be caused by colitis or crohn's and IBS as well.... You getting referred to a GI and going to have a colonoscopy is a great idea, as unpleasant as the prepping is for the procedure, (not horrible, but unpleasant) it is a necessary test and will help diagnose anything going on with your colon. Once it's done, you will be glad you did it.

Your shakes sound like anxiety to me, I get that way when I am very anxious, I feel like I'm cold when I'm not and have the shakes like I'm freezing, but I'm not. I have had the rectal spasms and GOSH, it feels like someone is stabbing you in the poopie hole and I have to literally stop and grab my bottom. it's verrrry painful, thank goodness I don't get that too often. When your immune system is out of whack, it can cause a whole bunch of different symptoms and it can be a pain in the pie-hole to get it all figured out, but try and be persistant with your doctors and eventually you will figure out what's going on. IN the mean time, just know that YOU ARE NOT ALONE~!!!!

As far as your diet goes, everyone is different, but a lot of people with Crohn's or Ulcerative Colitis do better on a low residue diet. (low in fiber)... I can only eat canned green beans and stay comfortable and any other fruits and veggies are gerber's baby food fruits and veggies.. OMG, the strawberry banana gerbers is YUMMY!! lol... Also I stick to chicken and potatoes, rice applesauce. Bananas are ok for me and eggs as well. Saltine crackers and ritz are ok for me too.. suprisingly, I can eat raisins if I only eat a small handful at a time and make sure you keep yourself hydrated with plenty of fluids, as being dehydrated can make you feel pretty sick in itself.

Please keep us updated and let us know how any tests go that you may have, this is a great place for support and information :)

 Diagnosed with Ulcerative Colitis January 31st, 2005, Testing for Crohn's 3/10
 Prior Meds:
Canasa, Rowasa, Lialda, Apriso, Prednisone, 1 infusion of Remicade.. none of those worked for too long... Had neurological complications from the Remicade...
 Current Meds:
Pentasa 2000mg 2x a day, Entocort 9mg daily, Nexium 40mg once a day, Wellbutrin 150mg once a day. Culturelle 2x a day, Xanax as needed and Ambien at night for sleep..  

Regular Member

Date Joined Feb 2010
Total Posts : 75
   Posted 3/13/2010 8:30 PM (GMT -7)   
I agree getting a gi doctor and having a colostmy. It may tell you what you need to know its so hard no knowing for sure. I have crohns in the small bowels, skipped areas. And a small part of my colon. I get joint pain alot . It comes and goes. When my crohns is active I have all kinds of complications. I hope this helped, Good luck to you.

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 3/14/2010 7:17 PM (GMT -7)   

What a terrible time you've been having. It does sound like you have a lot of symptoms that are consistent with a diagnosis of Crohn's (much more so than IBS); you'll likely know more after the colonoscopy (and perhaps they will do an endoscopy, too, to look at the small intestine as well). I would mention the family history of Crohn's at your next appointment. I wouldn't worry too much about diet until you have a diagnosis, just eat what feels good to you. I hope you are feeling much better soon.
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