I'm new and would like to share my story

I was diagnosed with Chronic Ulcerative Colitis (more severe on the left side), mild gastritis, GERD in October 2010.  Here is my story how this aweful disease entered my life at the age of 29.

In October 2009 which is about one year ago from the day I was diagnosed I stated have a few problems and lots of cramping.  I thought maybe I had the stomach flu because I was sick as well.  I went to urgent care and they asked me a few questions, prescribed me bentyl for the cramping and told me to follow up with my PCP and send me home.  My symptoms started to ease up a bit but I went to my doctor and again was asked questions and again sent home with more bentyl.  She did tell me if I was still having problems to go back to see her.  She said I might have IBS.  Things got a little better for a few months and I never went back because I felt I was getting better.  Sometime in June 2010 things started to happen again I just thought I had some kind of bug but then there was signs of blood and I knew it was not normal but I was not alarmed.  

Things turned really bad in late August early September and I was scared because I had D daily and blood loss.  I would take Imodium but it wasn’t really helping.  I didn’t tell anyone what was going on because I was embarrassed and a little scared. 

I ended up with a really bad cold in October 2010 and I was feeling very fatigue and felt like I had poison in my stomach.  I would get home from work about 6:00 p.m. take a shower and sleep until my alarm went off at 6:30 a.m. This went on for about two weeks and I finally went to urgent care on a Monday.  They sent me over for lab work and prescribed me dual antibiotics Ciprio and Flagy because the doctor knew I had an infection but they were unsure why since it was not UTI.  They also thought that I might have a parasite.  The antibiotics made me so freaking sick that I was not able to hold anything down or in anything, not even water.  I went back to urgent care on Thursday because I was so darn sick from the antibiotics and I felt like I could pass out from being so weak.  The doctor from urgent care sent me over to the ER because there was nothing more they can do for me.  This was scary but also a huge relief because I knew I would finally find out what was wrong with me. 

I finally had to tell my mom what was going on because she was going to meet me at the ER and I didn’t want her to be surprised by what the doctors would say.  She was a little upset that I let it go on for that long and didn’t tell anyone.  I did learn my lesson!

Once they had me hooked up to an IV I started to feel a little better, I swear that saline is a miracle!  They went over all kinds of things on what could be wrong with me.  Asked about family history and asked if anyone had Chron’s in my family.  Fortunately no one does.  I don’t recall this but my mom said the doctor did say worst case I would have colits.  I asked what the cure was and he said there is none, of course that sent me into immediate tears because I’m thinking how can I go on living and feeling like this.  They said they would need to do a scan to see what was wrong with my stomach.  Before they could do the scan they admitted me into the hospital.

about 2:00 a.m. my RN came in and said I would need two blood transfusions because my blood count was very low.  The water works came on again.  I could not believe that I lost that much blood.  Plus a blood transfusion sounds very scary.  By the second day I was scheduled for a colonoscopy and endoscopy the following morning to find out what was going in.  I was very scared because in the back of my mind I thought what if it’s cancer.  I’m not sure why I thought that but that is where my mind went.  It was very scary.  After the procedure I asked several times if that was what was wrong with me.  They told me no, but I keep asking that because of the medication.  I eventually stopped asking once they told me I’ve asked that question about 4 times.  I guess I wanted to make sure that I was ok before they went out to give my mom the news.  That’s when I was diagnosed with Ulcerative Colitis and they said it is more severe on the left side, mild gastritis, GERD and anemia.  I was released from the hospital that night and was put on medical leave for about 5 weeks so I can recover before heading back to work (I’m a litigation legal secretary) which is a stressful job.      

I had to change my diet to make myself healthy again.  This has been a very emotional experience for me.  I love my PCP as I feel she is very concerned about me but I hate my GI doctor.  I feel that my PCP takes care of me better than the GI doctor.  He doesn’t care about my symptoms and has never given me a prescription from any medication besides what he gave me in the hospital.  I always need to see my PCP for medication.  He spends less than 5 minutes with me, doesn’t check me like feeling my stomach or listening to it the way my PCP does.  He only gives me yes and no answers.  I seriously don’t like him and will be looking into a new GI before I need to see him for a follow up in two months.  At my last appointment he told me I should only be eating rice, potatoes, pasta and yogurt.  He said I’m still not feeling well because I’m eating vegetables.   I was so upset by that, that I didn’t even ask if I can take supplements nor did he tell me I would.  Again I told him my symptoms and he did not give me any new medication.  I’m currently have problems again :(

Since October I was prescribed Prednisone 4 x a day until I was weaned off and I took my last pill this morning, Sulfazalazine 2 pills 3 x a day, Iron 3 x a day, and Omeprazole 1 x a day.  I’m currently taking a probiotic which I started taking on my own. I also take Vicodin as needed for pain.

I’m currently suffering from hip pain.  I sometimes feel like my right hip wants to buckle while I’m walking.  The pain is in both hips but I feel like I have more problems with the right side.  When I’m in pain it’s usually on my lift side of my stomach and also my lower back on the left.  about a week ago I noticed that my hair is falling out.  I can run my hands though my hair and at least 5 or more strands are in my hand.  Though out the day I find hair on my clothes.  I lose tons of hair when I wash my hair or brush it.  I will also wake up with strands on my pillow.  Is this normal for UC?

I’m always tired because I get up about 3 times in the middle of the night to use the restroom.  On weekends I just take it easy and if needed I will spend the entire day in bed.  Occasionally I become emotion because I’m upset that this has happened to me. I cry and get over it.  This totally sucks.  I was told that I needed to fine a form so I can relate to people who have this.  My family is very supportive but they cannot relate to how I feel.   Reading through the form I’ve felt comfort.  So thank all of you for sharing :)

I do have a few questions.

I want to know once I’m in remission will I know? 

Do all things go back to normal?

Will I still have the urgency to find a restroom?

Will I be able to tell the difference if I need to have a BM or if it’s just gas?  Right now I can’t tell the difference because it’s the same urgent feeling for me.

Is hair loss caused from UC?  Or is because of a poor diet?  I’m very limited to what the GI said I can eat.

I didn’t think I would type this long or share so much info but we can relate to each other in one way or another and after all the reading I’ve done here  I feel comfortable.

I think that after being first diagnosed you are very ill because you got ill whilst trying to fight it off and waiting for your diagnosis (I was the same).  I have had UC for over 10 years now.

To answer your questions:

Yes once you are in remission you will know.  You will feel much better and go back to normal.  But be warned, don't assume it has gone away.  You will need to be careful with diet, tiredness, stress etc, and even then you may get more flare-ups in the future-this is not your fault, you can't always prevent it even if you are super careful.

Most things go back to normal.  You should be having normal bowel movements and no pain or nausea, no bleeding or vomiting, and should feel completely well.  Some things I found don't go back to normal, which are that you will be anaemic most of the time, and you will never be as fit and strong as you were before discovering you had UC.  You will get tired easier aswell.

No the urgency will go away when you are better.  However if you have another flare-up, it can be one of the first symptoms to return, aswell as the nausea.

I still can't tell if it is just gas or not.  I tend to go to the ladies anyway to make sure, but I have always held gas in until I was in the ladies, even as a child as I was embarrassed, so it might be just me.  But generally if I am feeling gassy I am unwell anyway. 

No I had hair loss after my first flare up.  I came home from hospital and most of my hair fell out.  I asked the doctors why and they said that when you are very ill, your body sends all the blood to the poorly area (the colon) and it doesn't bother with non-essentials like hair, nails etc.  So your hair falls out because you were so ill, which was caused by your UC but is not a symptom as such.  This is also why people lose babies etc.  because the body concentrates all it's resources on the poorly body part.  My hair took about 3 years to grow back but has not fallen out since, even during one of my latest flare-ups when I was in hospital again.

I hope this helps and you are soon feeling better.