Newly diagnosed with Crohns/Colitis

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New Member

Date Joined May 2010
Total Posts : 3
   Posted 5/3/2010 2:30 AM (GMT -7)   
Hello, my name is Kim I am a 34 year old mother of 4 boys and was just recently diagnosed with Crohn's colitis. I am currently taking Pentasa and vitamin supplements, and ultram for the pain(doesn't help much). Anyways, I was glad to find this forum, this disease id horrible and I know I have nothing to look forward to when it comes to this, but I would like to have others to talk to who are going through the same thing. Also I am a little confused on what exactly a flair is as I am in constant pain and have alot of painful bm's on a daily basis, right now I am having horrible lower back pain and pain in my left side under my ribs. Any help with this would be appreciated...look forward to talking to others and contributing to the forum...thanks, Kim
*Gave your post a title so you could get more responses*

Post Edited By Moderator (Nanners) : 5/3/2010 7:29:14 AM (GMT-6)

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 5/3/2010 3:21 AM (GMT -7)   
I can remember when I was first diagnosed with this disease and there were so many questions but no one who could answer them from experience. The doctors just give you some meds, pamphlets, and maybe a little advice before they send you out the door to see you in a month or couple months. It is so frustrating and you can feel like you are all alone. You feel that people care but never truly understand and you may even be doubting yourself due to the pain and sickness. All of us have been there and we are here to answer any questions. We are here when you need to vent, to cry, to yell, and to laugh with.
To answer your question about a flare, a flare is when your disease kicks it up a notch and could be urgent bathroom visits, bleeding, nausea, PAIN, and arthritis. It is so different for everyone but it basically means that you are having a peak of symptoms and it is really affecting you life negatively. The main thing that you need to remember is that you are your own strongest advocate and need to fight for your right to feel good. If your medication is not working, CALL YOUR DOCTOR and keep calling until you find something that works. Sometimes things do take time so have so patience, but don't just take the nothing we can do answer that some medical professionals give. You deserve the right to be out of pain and if ultram is not working see if they can change that. Ususally your G.I. will not help with the pain medication and you will need to see you primary care physican for that. Let your G.I. know that you want both of your doctors to work together. Also something that you should purchase or make in the mean time is a heating pad and a microwaveable bean or rice bag. The heat is amazing at helping with the abdominal and back pain and I have one on me constantly. Again, stay positive and do not hesitate to ask questions here because there is vast wealth of knowledge and experience among actual crohnies who will be supportive and blunt.

New Member

Date Joined May 2010
Total Posts : 3
   Posted 5/3/2010 4:46 AM (GMT -7)   
You don't know how much your post means to me, thank you so so helps to know others have been where I am at, you hit the nail right on the head!! I am going to call my PCP today as I already sent a message to my gi, I definitely think I am flaring, I have been up since 2 this morning just doing what I can around the house to try to not think of the pain...I hope this day gets better..thanks again!!

New Member

Date Joined May 2010
Total Posts : 3
   Posted 5/3/2010 5:08 AM (GMT -7)   
Also I was wondering if anybody else ever has had liver problems?? I have a 10 centimeter liver cyst on the lower left lobe, that required surgery when I was 4 months pregnant in September of 2008, they could not take the cyst out as all of my blood vessels etc are within that cyst, so they took part of my intestine and hooked it to my liver so my liver continuously drains the bile, I really wonder if this had anything to do with the Crohn's disease or if this is just a coincidence....and of course I worry now with having Crohn's if it is really safe for this bile to be draining into my intestines...sometimes when I have a bm it is nothing but BRIGHT yellow...and makes my insides hurt so bad, like my intestines are being ripped apart inside me.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 5/3/2010 5:42 AM (GMT -7)   
I just wanted to welcome you and to let you know that a Crohn's diagnosis doesn't have to sentence you to a life of horrors. Yes, there are going to be times when things are tough and you will have pain. You have a chronic incurable disease that should always be treated with some sort of maintenance medication, so your daily life will change. BUT, once you and your doctors find the right drug(s) to treat you and get your flare under control, you can go on to live your life barely giving CD a thought each day except to take your daily medication. Of course there are some patients who have ALL the terrible things happen to them, but the vast majority of CD patients live their lives without having to deal with many complications at all.

I was undiagnosed for 10 years and a lot of damage was done during that time. I spent the next 10 years dealing with that damage (multiple resections and medication changes.....). Once things finally settled down though, I have been relatively stable for the last 12+ years. But even during my worst times I was able to enjoy time with my husband and daughters and participate in life. It just takes planning and knowing where the bathrooms are!

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/3/2010 6:38 AM (GMT -7)   
Hi Annkj1975 and welcome to the best Crohns forum out there. I totally am in agreement with the above. When first diagnosed it is usually the hardest time for us because thru trial and error we have to find which med works best for us and what diet works best for us. To add to what Zanne said, I would like to suggest maybe you start keeping a food diary of which foods agree with you and those that don't. I follow a modified version of the low residue diet. While flaring, I will stick with a strict low residue diet, as I have found that works best for "me". You might want to google the diet to get some ideas. And I want to also reinterate that you should always be on some kind of maintainence med even once you are feeling better. The Crohns like to continue doing its damage on a microscopic level and can sometimes happen without you even knowing it. Thats what happened to me and I wound up having to have an emergency resection because of my lack of compliance with my maintainence meds. I have now been in remission for about 5 years and maintained solely on the sister med to Pentasa called Asacol. Good luck and keep us posted on how you are doing.

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 5/3/2010 9:07 AM (GMT -7)   
Hullo answer to your questions about liver issues...yes, it can happen though it is quite rare...and yes, I have one of the forms that can come with crohn's: PSC or Primary Sclerosing Colangitis...there are other liver issues, but you will need to talk to your GI and usually have some specialty testing done too.

Here is a link to an online book that I found had helped me...once upon a time ago, some pharma company was giving it out for free, but I cannot remember the name right was a useful primer, even even though, when I received it, I had this DD for over a decade, it was still informative...'s%20disease&pg=PP1#v=onepage&q=101%20questions%20about%20crohn's%20disease&f=false

Oh, and I would say that, yes, right now, it sounds as if you are in flare mode...
Please come back and ask any questions...good luck, and please let us know how you are doing, K?
"The earth laughs in flowers"

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 5/3/2010 2:14 PM (GMT -7)   
Hi, sorry to hear you have this disease but, hey you have come to the right place for advise and support this has been my lifeline this past 18 months. just wanted to welcome you aboard and say hi! Bev x
Diagnosed with crohns at 13 now 43
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 30mg (for Anxiety.)

" I may not be there yet, but I'm closer than I was yesterday."

Regular Member

Date Joined Apr 2010
Total Posts : 70
   Posted 5/4/2010 7:27 PM (GMT -7)   
30yo/male/western NY
Dx with Crohns in 2001- Asacol and diet beat it into remission in .
Nov. 09- Crohns is back!
Medical Issues- ADHD, anxiety, depression, kidney stones
Meds- Vyvanse, Lexapro, Xanax, Darvocet

Regular Member

Date Joined May 2010
Total Posts : 266
   Posted 5/4/2010 8:43 PM (GMT -7)   
Hi, I think I am new at this also. Have had rt lower quadrant pain for 1 1/2 years, exploratory lap in March 2010 with appendectomy that didn't go well (out patient turned in patient due to extreme pain). Then hospitalized 7 days later for global sepsis. Somehow through all this I have landed on the door step of a GI doc - who is grumpy to boot. He did IBD labs that were abnormal but biopsies and cultures negative. He started me on Entocort EC. I don't really know what any of this means other than reading all of your postings, have a sore gut and try not to eat too much as of the frequent bathroom runs seem to interfere with life. I am a 53 year old female who works full time and have a spouse and 4 kids. this is an OMG moment. Of course cry all the time and the doc only calls with half hearted interest without recommendations for anything other than this drug. Don't even really know how to take it and when to go back to see the grumpy GI. Ok, so it is getting funnier as I write this, in a sick kinda way.

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