newly diagnosed?

We have a few people here who have just been diagnosed, or who are going through the process of being diagnosed.

I thought it might be nice to start a special thread for you, so you can introduce yourselves to each other, and share your feelings and thoughts and experiences.

You're going through a lot, and deserve to be able to share the process with a group of friends, instead of posting in individual threads and being lost to each other. Once you know each other, I think you're likely to feel more supported, and that's important .

Who wants to post first?

Ivy.

Hi.

I guess I will go second.

I am 31 years old still waiting for a Dx.
It all started last April 2010. With an attack of diveritculitis. After the colonosocopy the doctor said I had crohn's, No symptoms until starting medications. Changed doctors who said it was Diverticolosis and IBS and not crohn's, diarrhea started real bad with pains and discomfort all over, he couldnt explain it so he sent me to another GI in our province, supposedly one of the best. (we will see). Now awaiting my appt on May 19 for my results of my Pill Cam.
I have been through so many tests which all come back inconclusive.
Only medications I have been on so far is Salofalk and quick bursts of prednisone.
Looking forward for a real Dx and hoping to feel better.
May 19 still a long time away.

Ok. My turn. I have had bouts of joint/tendon/muscle pain for years. My family practitioner of 30 years just wasn't doing enough so I asked for a referral to a rhuemetologist. I Love this guy! He wanted answers as much as I did! While we were looking for answers I got a bout of d. In hindsight I have had several bouts but nothing like that one! I couldn't leave the house unless I just didn't eat. He sent me to see another great doc, my GI who scheduled a colonoscopy, but alas complications! I got a rectal fissure, not just a little fissure, a BIG fissure. Wow! That pain was like passing crushed glass!! It was so large that he sent me to yet another doc that I have great respect for, she is one of those surgeons that wants surgery to be the last option. She wanted me to try to heal on my own. Yay her!! So the plan was to reschedule that colonoscopy and try some compound suppositories for a few weeks. My d did not let up so I still couldn't leave the house. Finally "the team" of docs, they all talk to each other! Love my team. Ok I really should stop talking about how much I love these docs. On with the story... We all decide that that colonoscopy has to happen! Clean out was a breeze, heck everything that had been going in for months had been flying out! so we get the colonoscopy going remove some polyps, none malignant! Biopsy results plus labs say yep lady you have crohns. As far as I know I have no family members with crohns, I guess someone gets to first. Dr. GI puts me on Pentasa and we schedule a barium contrast, IV CT scan, after the results from that showed a fistula, lots of inflammation and some stricture. He thens adds methyltrexate to my growing list of meds. Off to Dr. Rheumy who sits me down and we talk and
talk and talk, he completely agrees with Dr Gi's meds and we decide that I would be a good candidate for Remicade. They contact my insurance company, turns out I had/have great insurance that I wasnt using. Boy am I using it now! So we schedule my infusions. I have finished the loading doses, my infusion center is at Dr. Rheumy's office, great place! The fistula is gone, the annoying fissure is half the size, my surgeon is still all for the let it heal option, I can leave the house. I am learning which foods and bigger issue how much food to eat. I have a great appetite, thanks to the prednisone, oh I forgot we started that first when I was just hurting all over! I can't seem to get off of it, when I taper and get below 17.5mg I HURT and my d gets worse. I am starting to resign myself to the prednisone. It doesn't make me tooo crazy. I love the energy, I can sleep if it's under 25 MG. I only have slight moonface and a roll around my middle that I don't like. I am thinking they are small prices to pay for less joint pain. It is only less. Joint pain is a big problem for me. I expect another autoimmune diagnosis is the future. Hope not, but it won't surprise me.
Gotta say that I am happy I found this place.
Forgive any errors
some stricture.

Iam currently undiagnosed. I have joint pain that is migratory and I had D and had cramping for that lasted two whole days. Also I am so hypervigilant that I have noticed twitches and tremors as well as some eye pain- inflmation? I healed the dryness but the pain is still there. I am so miserable : ( I had to stop working because of the joint pain. My doc thinks Lupus I think its chrons. I also have the feeling to go all the time but I cant. Just miserable pretty much sums it up lol I am staying positive and hoping that everything will be resolved. I find that enjoying each day is important and I have learnt a lot this past month. I have had colonoscopy and endoscopy with biopsys- everything normal. Numerous blood tests- normal. My doctor said we can rule out chrons and UC hence possible lupus. I am pretty much at a loss with all of this but I will keep going strong!

I was diagnosed 10 months ago at the age of 65 - just a few months after my husband passed away.  I had been misdiagnosed for 25 years with IBS.  A partial blockage sent me to the ER where I was diagnosed quite  quickly.  I was put on Lialda.  I went back to the ER 5 months later with inflammatory blockage.  In January,  I was put on pred. 20 mg.  I have  been on it ever since due to other issues.  I have experienced every possible side effect  of prednisone - anemia, prednisone diabetes, hair loss, moon face, edema, high blood pressure, and ulcers.  The omeprazole that I take for the ulcers is also giving me some serious side effects.  I have an appointment with my GI next week to go over a treatment re-evaluation.

Two weeks ago, I added 6MP to my list of meds.  So far, the only side effect I am aware of with it is fatigue. I have lab work done next week.  I don't feel any improvement yet, but understand it can take a while before it works.  Immunosuppresion is scary. 

It is very difficult to lose my husband and have to face this disease living alone  at my age. I have no family nearby and no children so I am pretty much it.  I am on a strict low fiber diet, but I am able to eat a lot of low-fiber foods that bother others such as lean ground beef, tomato sauce, dairy products, ice cream, and even well cooked cauliflower, asparagus tips, winter squash, V8 juice, etc.  I can't eat fats, fried foods, raw fruits and veggies, salads.  I am still learning what I can and can't eat. 

My GI is just okay.  He has a strict protocol and doesn't relate to me as a person, but as a disease.  However, he is very skilled at colonoscopy and endoscopy.   My PCP is wonderful and tries to make up the difference.  Since I live so far away from civilization, I have had to keep my GI for now as the trip to see another one would be long and difficult for me.   

So glad I found this forum as I don't feel quite so alone here.  

 

new-to-chrons: what have you tried for constipation? There is a good tea that I drink its called kukicha tea that you can buy online- you drink the tea sit and wait for about 10 min and you will feel the need to go.

Newly diagnosed this past April 2011. Was previously diagnosed with IBS since 2003-ish. Tried hycosamine, belladonna phenobarb and others throughout those years. My first colonoscopy was this past March which really didn't reveal anything. It wasn't until I went for an Upper GI and Small Bowel Follow Through that gave my doctor diagnosis of Crohn's. My grandmother had few resections done and the cause on her death certificate stated Crohn's back in 2003 (oddly enough, the year my issues began). My aunt (her daughter) also has Crohn's. Right now, I am currently on Asacol, Align. Just this past week I had my first hospital visit of my life due to abdominal pain. The doctor said it sounded like issues with my Crohn's and a painful ovarian cyst. He has prescribed me Vicodin which is helping the stomach pain and oddly enough, is causing me to have normal bm's (first time in months). I just started a fish oil supplement this week also due to some good advice from this board. I am still waiting for my Asacol to work and patiently being patient. I am trying to deal with the stresses of diarrhea every day of my life and how to handle it. It makes work and social time very difficult. I sometimes wonder if I will ever get relief. As with most, I haven't had significant weight loss, yet my appetite is usually ravenous. Certains foods such as peanuts, beans, spinach, raw fruits, vegetables and ice cream I must stay away from. Just being on this forum a short time has helped me significantly. :)

Hi everyone! :) I am 17, almost 18 and I am currently undiagnossed. I have always had a history of GI problems; chronic GERD since birth, a nissan fundoplycation and Pyloroplasty in 2002 and my gallbladder removed in 2007. After all of my surgeries I have experienced a lot of complications and the more I think about it, it seems like that could be very relatable to what I am experiencing now, although this time around is the longest the symptoms have lasted. In late January of this year I came down with the worst case of the GI flu that I have ever had and it sent my body into over drive. Ever since then I have had constant extreme nausea, abdominal pain, blood in stool, constipation, significant weight loss, and a constant low grade fever(and I never run a fever, I usually have a lower than normal temp), and I've been hospitalized twice. The first time I was admitted to the hospital was in February and met a new GI doctor. She ran a bunch of tests and one of them was an endoscopy that showed gastritis, so I was put on medication for that and after a week in the hospital I was sent home. Throughout the months I was not able to stop loosing weight and I was still experiencing all of the symptoms. My GI finally decided to do another endoscopy and this time a colonoscopy. From the biopsies she found inflamation throughout my GI tract, ileitis, and colitis in a centralized location. For all of this i was put on prednisone. She was certain it was Crohn's, but said she wanted to do a blood test to be sure. The blood test she did came back without a positive result so she completely took Crohn's off the table of possibilities. What I don't understand is that with all of the extensive research I've done, I cannot find a single blood test that could completely rule out a diagnosis of Crohn's. In may I was admitted to the hospital again and they had to put a feeding tube in to try and get my nutrition up. They ran a lot of blood tests while I was there for three weeks and throughout the time I was there my white blood cell counts were high and my vitamin D levels were half of what they should be, which I have read that both can be a sign of Crohn's. EVERYTHING I am experiencing seems to be all related to Crohn's Dosease, I just don't understand why she has ruled it out, I mean there is complete evidence that proves Crohn's...almost 6 months I have been dealing with all of this and still no answer...I just can't keep feeling like this, especially since my pain has been getting worse. I go for another follow up appointment tomorrow, so we will see what happens, but if she still does not want to try to find an answer for me, we will most likely be going to the Mayo Clinic. I am so thankful that I have found this site though! In just the short time I have been on here, I have read SO much helpful information! I feel like I finally found people who completely understand EVERYTHING I'm going through!

Hi everyone,

I am 26 yrs old, female, asian and newly diagnosed January 2011. In search of some answers in the hopes of educating myself with CD, I stumbled upon this forum which has proved to be very helpful to me.

My symptoms started very abruptly in June of 2010 -- initially I thought it was constipation (constant need to make a BM but always feeling blocked up). When I did make a BM, it was like a murder scene... blood tests showed that I was dangerously anemic after several weeks. But this did not alarm my family doctor at all. For weeks... months... I complained of the discomfort to my doctor. I even asked for a colonoscopy because I knew there was something not right. The doctor told me I was too young to have colonoscopies and that I probably had hemmorhoids instead. It didn't help that I developed a skin tag, which the doctor brushed off as an external hemmorhoid. I was given suppositories and creams for what she thought was a hemmorhoid. Finally almost 6 months since the initial symptoms, I insisted on seeing a GI doctor. She begrudgingly made the referral for me (obviously annoyed that I did not trust her expert diagnosis).

Skipping to the colonoscopy (which I was fully awake to observe the screen myself), an inflamed section was found in the colon, which was then biopsied. I was spoken to immediately after the scope and informed that there was a good possibility of crohn's.
Two weeks after the scope and biopsy, I was officially diagnosed with Crohn's. I was immediately put on 5-ASA (Mesavant) oral and suppositories to manage the symptoms. I had never considered Crohn's however, because I don't have abdominal pains and I did not lose any weight...

Three weeks ago I had my first "peri abscess", which turned out to be just an external inflammation.... so they cut a deep hole in me for no reason... the hole/wound is still there and I read in one of the threads that it takes weeks to months to heal...

Anyway... as for my family doctor, she did not feel that she did anything wrong (despite the fact that she refused to listen to my complaints and symptoms and continuously brushed me off)... instead... when she found out about my diagnosis she said "wow, I would have never guessed, it's very rare for asians to develop crohn's" ... and that has been the "story of my life" since my diagnosis... every doctor or GI specialist I have seen or spoken to are always surprised to learn that I have Crohn's... because "wow... you're asian.. and that's rare"...

I must say I have had more bad than good days. I am still learning to control and deal with this everyday... and I'm glad I found this forum to help me along the way...

It's late I'm exhausted, had a long day but I just have to add my two cents. I'm 54 yrs. young. Was diagnosed 30 yrs. ago after a long, long, series of hospital stays (5 different hospitals), lost 137 lbs in 4 mos.(I too, had been heavy all of my life). The dr."s had told my mom to get my family together, they had my 5 yr. old son talking with a therapist, had me reading Elizabeth Kubler Ross' book on death and dying and I was bitter, angry, afraid, hurt, scared, and lost. No doctor could seem to tell me what was wrong. I was in so much pain. The stuff I was vomitting out of my mouth looked, smelled tasted like dirreaha (sic) and my mom thought that someone had rooted me. (old skool for putting a spell on me). I had a dream. My father who was deceased at the time had an old jewish doctor who used to treat him and my dad came to me in this dream and told me to go see him. My mom thought I was crazy since she always felt that this dr. had killed my dad my misdiagnosing him and putting him on too much meds. But I insisted. When I walked into his office the first thing he said was "Oh God look at you!" He then examined me. He told me that he hadn't seen anything like this since he left the concentration camps, then he said I'm going to tell you what's wrong. You have a diseease I've only seen in jewish people it's called crohn's disease and there is no cure. You need surgery but when I admit you to the hospital the dr.'s are going to want to test you for everything else but in the end my diagnosis will be right. He was right it took two more months but they finally got around to giving me my 1st lower bowel resection. They said there was no cure for what I had and I might have ten yrs. left. That 5r. old boy is now a 35 yr. old man. I have had 3 lower bowel resections, gallbladder surgery, appedix removed, a hystorectomy along with my cervix removed, lower back surgery, cervical disc surgery, my left knee replaced, carpel tunnel srgery a greenfield filter placed in my abdomen because I suffer from deep vein thrombosis, I 've had 7 kidney stones since 2004, 4 which were surgically removed, two in the last year, I have osteoarthritis, Ive had pacreatitis, peritonitis, I suffer from migranes and I've had three operations on both feet. If you saw a picture of me you would never believe I have been through what I've been through. I've been totally disabled since 98 but when the oil prices sky rocketed I tried to go back to work I lasted 3wks past a year before I got sick again and my doctor said totally disabled means totally disabled. I have had some dr.'s along the way that just didn't get it and then again I've had some who have really been there for me. The power of prayer is my source of comfort, inspiration and what keeps me living day to day. I have one biological child (the 35yr. old) but I've raised 3 nephews the youngest being 14. I am a single parent and I've always carried my own. I stumbled on to this site and I've never done anything remotely like this before but I think I've found a home where I can share my story with other and gain comfort from knowing others who can understand. Thanks for reading. Goodnite!