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Just diagnosed, confused and uninformed!

Hi everyone, so glad to find a place like this to get some first-hand information! Here's my story:

I am 36 yr old and was just diagnosed this week with Crohn’s. I started feeling poorly about a year ago. I first attributed it to stress (4 young kids including twins that are now 3 plus a full-time job and husband who was working nights for awhile!). My symptoms were mostly occasional stomach pain and constant tenderness, sometimes with low-grade fever, feeling very run-down. I went to the family dr and the only thing that was found was iron-deficiency-anemia, so was referred to a hematologist (CT scan was clear - I think it was done on a ‘good‘ day). Since I had been anemic during the twin pregnancy in 2006 to the point of having a blood transfusion, we assumed that my anemia was because I was still not fully recovered after the birth, many months of breastfeeding twins, and years of a vegetarian diet. In Dec. 2008, I had an iron infusion since I was not handling the oral iron very well. Felt decent for many months, but then started to have bouts of stomach pain that would only go away after vomiting and almost always occurred with a low-grade fever. Usually Tylenol would knock it, I would be ‘ok‘ the next day, except for the fatigue and very poor appetite and just unwell feeling (took a lot of Tylenol and slept as much as I could!). I did lose about 15+ lb over the year’s time and got down to a size 2 from size 6. My family (mostly mom) started accusing me of being anorexic, which was very frustrating!

About two weeks ago, I came down with a fever of about 104. Went to my GP and when she realized that I was still having stomach pain, she sent me for another CT scan. This time it did show a thickening at the terminal iliem. Was sent to a GI specialist, who ordered pelvic & gall bladder ultrasounds and scheduled me for a colonoscopy. The ultrasounds were both clear but I had not had the scope done yet when, a week ago last Thursday, I was feeling unwell again. My stomach started cramping but this time it did not get better after I threw up. The vomiting started at 6pm and occurred about every ½ hour until I finally went to the local ER around 1:30am because the cramping was so bad. Was given nubane for pain and zofran for nausea and finally got some relief. Another CT scan to check appendix only showed the same swelling that was seen the week before. I was transferred via ambulance to a larger hospital and scheduled for a colonoscopy. The 1st attempt at prep failed because I could keep nothing down. After 2 days of IV steroids and antibiotics, I was able to do the prep. The colonoscopy did show inflammation at the same place (terminal ileum). The next day I had an EGD and barium x-rays, which were all clear. Sent home on prednisone, flagyl & Prilosec with a follow-up appt with the GI specialist in 2 weeks.

Physically I feel pretty good, except some insomnia (usually I can sleep 10 hr straight no problem!) I came home from the hospital just happy to have an answer and that it wasn't life-threatening. I was under the assumption that this disease was very manageable so my troubles were coming to an end. However, after talking to people who ‘knows someone with crohns’ and reading these forums, I am feeling less confident about what is to come after I am done with the current round of meds. I was only given a basic description of what Crohns is while @ the hospital. I did not see the GI specialist except for very brief moments before/after procedures, and I was groggy. I feel very ill-informed!! From what I have read, my symptoms do not seem all that typical. For example, I very rarely ever have diarrhea, which I believe to be one of the main symptoms?? Also have never had any blood show up in stool. I am hoping and praying that I have a ‘mild’ case (is there such a thing?). I’ll say a prayer for all of you who have had it much worse than I have!! God Bless you!
:confused2: :confused2:
Hi Juben; I was diagnosed with Crohn's about 9 years ago and with the same symptoms as you. I never had diarrhea and very rarely see blood in my stools. Crohn's is an unpredictable disease as I've learned over the years with ups and downs but it can be managed by taking the right meds (try to stay on the one with the least side effects as a mintenance med and see if it is helping you) as the doctor prescribes and eating a diet that suits you and trying to reduce stress as much as possible. Also some supplements like a multivitamin and fish oil can help.

If you have any specific questions, please feel free to ask. We are all here to help you :)

I am newly diagnosed too and from my research on the site it seems no two people have the same symptoms.

However, swelling/inflammation of the terminal ileum (which I also have) is apparently a very typical presentation of Crohns.

I was very scared and freaked out at first, but then the relief of a diagnosis set in and I started to deal with it. You will get plenty of advice and support for all your questions on this site - they are all very generous.

Good luck!

Welcome to the forum Juban

Symptoms do not tell the whole story with Crohn's, but it is better to have less of them than more.

I rated my symptoms as minor, as going by my symptoms, pain and such. My Doctor said I have Moderate Crohn's as judged by the Colonoscopy, Endoscopy and CT scan.

Prilosec made me sicker when I tried it. Possibly because I had a H-Pylori infection at the time.

Four children alone is enough stress. A job on top of it, would be to much for a healthy person. I remember those days.


Sports Crohnie
Hi Juben -
First of all, you've come to the right place. This is a fantastic forum filled with answers to silly and not so silly questions as well as genuine support from folks around the world who suffer from CD.

As you'll discover, focus on balancing diet, drugs and lifestyle to achieve the best management of this disease. There's no single answer as you'll find out - if there were, we probably wouldn't need a forum like this. We each seem to share different symptoms and can tolerate different drugs/foods. My CD is only in my large intestine for instance. I have the diarrhea problem but not the vomiting problem. Rarely have I seen blood.

Welcome and hope you find answers you're looking for. . .
Thanks for all the responses, looks like I've come to the right place! :smile: I'm sure I will learn much from you all.

Thanks again!
Juben - I have had Crohn's since age 19 (in 1986). As your doctor about Entocort as an alternatiave to Prednisone. Prednisone has so many nasty side effects! Entocort is still a steroid but is only absorbed in the gut, not be the entire body systems.

I have never had blood either by the way....

Currently I take Pentasa, 4 pills, 4 times a day at 250 mg each. This is simply a "wash" over the intestines to keep the inflammation back. I also take the Entocort (3 pills in the morning at 3 mg each). No adverse side effects at all from either drug.

Prednisone is very hard on the body, and had I not done the research, my doctor would have thrown me on the Prednisone also, without considering the Entocort.

good luck to you. Oh P.S. I also take Align Probiotic.


Sports Crohnie
PaulaJean -
Is the Align working for you? I started taking it a month or two ago...can't tell if it's working or not.
My general advice:
Take control of your health right now. Research EVERYTHING out there and do not rely on the Dr. to "cure" you.

My husband has been going through it for 7 years and we have learned this the hard way. He has a severe case and no meds have been able to control his CD so far. Surgery is not an option for him since he has inflammation through out his digestive track.

Look into alternative treatments and try them. Check out helminthic therapy (see the Nottingham study). We had some success with this.

Be your own advocate and make sure you know more about CD than the Dr's do. Tell the Dr. what treatments you want to try. If they don't comply, change Dr. It's your body after all.
Good luck.


Staff member
newly diagnosed senior need information about colifoam

:depressed: diagnosed with Crohn's two months ago
I have been prescribed colifoam for one month and after this to see the doctor in four weeks time.
My supply is about to be finished being the fourth week of this therapy and after reading so many posts on different sites realise it may be necessary to taper off the colifoam.
When I called the hospital GI department I had a recorded message saying they are closed for their holidays.
I am left in a quandary, what should I do.
The colifoam has helped to relieve bathroom visits, no more blood in stools.
I still have pain which is worse at night and includes the lower left side as well as stomach and right side.Also have bouts of indigestion, even when not eating.
Has anyone else had experience in this way.
Also since I am a senior I am afraid doctors may feel it a waste of time to treat me properly and I am afraid of antagonising them with my complaints and/or lack of progress:( :
Hi Juben,

Your story sounds very similar to mine and I have had many of the same thoughts after doing a lot of reading and then wondering how bad it is gonna get!

I have had occasional bouts of D for a few years and pains here and there with constant fatigue, but last month was the first time (at age 38) that I felt unwell (constipated, fevers, night sweats, weight loss and pain for about a month) to the point of taking myself into the hospital.

I've got the 'standard' issue terminal ileum variety at a 'moderate' level whioch had an attached abscess that has gone with antibiotics.

I was sent home with 3 months tapering steroids and not much help/support about what to expect either. Public health eh?

It's silly, since it's never been an issue before for me except after eating too big a meal at dinner, but now I am finding myself worrying about sudden explosions in public places! I hope that never happens, those who experience this must have to have a great sense of humour!

I also get the whole bit about being put on stuff but niot knowing if you have asked proper questions. I was really resistant to prednisone but was so unwell I felt left with no choice and basically caved in. If I had known about the less 'invasive' options such as Pentasa and Entocort I would have pushed for them as they seem like a gentler option for a first time biggish flare.

keep doing your research but don't let it get to you as I have a couple of times!



One Badass Dude
Hello to Juben, annsplash, shazamataz, PaulaJean, lishyloo and everyone new...


Don't worry about being labeled a "mild." Any "level" of Crohn's is serious and don't let any medical professional brush you aside. Everyone deserves relief!
Hi Ann
I've used colifoam before, but only for a week at a time when I've been passing blood heavily. Didn't realise you were supposed to taper off it... I suppose it is a dose of steroids and if you have to take it for a long time then maybe a taper is necessary, but I'd guess the problems should be less as it's topical and treats the affected area rather than the whole body. Do you not have an emergency department you can go to if you're really worried about it? The worst that can happen is that you get treated like a complete idiot, but we get used to that!