• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Just diagnosed and am lost

Hi everyone ... My name is Debra and I go by Carneysh (too many Debras) and I was just diagnosed with Crohn's on Tuesday of last week. I had posted in a different subforum (confused about where to go) but I don't know if I fit into any one forum.

My story begins in March of 1997 when I was 37 and I thought I had the flu, threw up everything I ate for a couple of days and then all better. About 6 weeks later did it again. About 4 weeks later did it again. Working, life, whatever didn't see a pattern. Must be something I ate, virus, etc. then in October of that year I began to bloat like I was 6 months pregnant and couldn't go and then all of a sudden I was throwing up and pooping at the same time, with extreme pain. By December I was only throwing up. By then I realized something was really, really wrong. Went to the urgent care center must be a bug. New Year's Eve I'm back at the center and this time they made an emergency appointment with the GI group. Saw them in January and they started trying to figure out what was wrong and changed my diet to a bland diet. Had reflux surgery to make sure my reflux wasn't causing the problem in May. Long story short by August I was on a pure liquid diet, still bloating and throwing, and they still couldn't figure it out so they sent me to a General Surgeon for exploratory surgery. ***They couldn't figure it out because ALL of my test were normal.*** Go to the surgeon and he wants some other tests run before he decides which options to suggest. The week of the surgery when I'm in his office doing pre-op he meets with me and says before we do this I consulted with a colon/rectal specialist and I want you to meet with him first. Surgery postponed, he had already made an appt for me that afternoon. Did test where I swallowed radioactive rings in capsules and then took x-rays next day to see where capsules were. This was supposed to go on for a week. After the second set of x-rays he called and told me not to continue the test and to meet with my surgeon an appt had already been made for the next day. Went in and low and behold my colon had shut down completely, total colonic inertia, no muscle movement at all. Had all but 4 inches of my colon removed and my small intestines attached to the 4 inches before my rectum. Everything was great. Soft bowels not a problem, no running to the restroom, no more bloating and throwing, life was awesome. Still had to go to the restroom 1 to 1 1/2 hours after every meal, but no urgency and I could deal. I was cured. I thought.:dance:

Now it is 15 years later and I started having more diarrhea than normal last November. Okay, I'll watch what I'm eating and make sure I'm not eating something that is causing it. Seem to calm down some after the holidays, no biggie. Six weeks ago I started having a good amount of pain (mind you I have a really, really high pain threshold ... I passed blood clots from my legs and never even felt it), I attributed it to back aches, upset tummies, etc. Finally my hubby talks me into making an appointment with a GI. He does a colonoscopy two days later after hearing my symptoms. I was told he took a significant amount of biopsies from the join to several feet into my small intestines. Three weeks later (Tuesday of last week) I have my follow up appointment. He had presented my case to a conference of GI doctors who had met that weekend and the world's foremost authority on GI diseases said I had Crohn's but to run the Prometheus tests to confirm because .... other than the ulcers in my small intestines (6 really big ones), all my tests were normal; which is why my doctor presented at the conference he was already attending. I told him I was weird, he agreed.:lol:

I was put on a month's dose of Prednisone and I will see him again in a month..

On top of all of that I have: fibromyalgia, arterial spasms, and osteoarthritis; oh, and we can't forget the 3 sets of blood clots I've passed in the last 8 years.

Needless to say I'm on several medicines for depression, high blood pressure, cholesterol, etc., etc.

Here are my questions:
Has anyone had this happen and how do I recognize a flare up (if I ever get mine in good control) when I have the cramping and aching but not severe pain?

My doctor has put me on an all protein diet. I can't take vitamins because they flow out whole within an hour. Right now all my nutrients, etc. are okay. How do I make sure I'm getting what I need that I'm losing from not having fruits and veggies.

How long will the hair loss last? My just started and it is worrying me.

I've not had to deal with internal/external bags, etc. (Sorry I don't know the terms) Where do I fit in in the forums?

Thank you to anyone who can give me a glimpse of what to expect now.

Regards,
Debra
 
He just wanted to welcome you to the forum. So sorry to hear that you have a need to seek us out but it is a great place for information and support.

Did your GI discuss maintenance meds for CD? If they feel it is CD and possibly if the Prometheus test proves it out(it can sometimes get it wrong) then the GI will probably want to start you on some medication as you taper off of the pred. We have a Treatment forum(<--click here), that has information and members experiences with the different types of meds.

I have found it important to research, research, research so that I can be the best health advocate for my son. It is a steep learning curve but I would suggest seeking out credible sites such as this one and taking in all you can about CD. We have a Books, Multimedia, Research and News Forum(<--click here) as well that you may want to browse through.

Good luck and I hope you get some definite answers soon!
 
Yes he did mentioned next step medicines but I was in such shock I couldn't begin to tell you which he suggested as a first next step. I'm sure that will be discussed at my next visit. Since I was already on disability we are having a hard time finding a hospital that will do the Prometheus tests and that Medicare will pay for and trying to come up with the $650 just in case they won't pay at all.

Thank you for pointing out next steps in the research. Thank you for your well wishes.

I'm glad your son is doing well and will keep him in my prayers.
 
Top