Overwhelmed, just diagnosed, looking for advice

[KellyMom]

Hi everyone,
I am a 33 year old female just diagnosed with Crohn's last week. I am meeting with my GI in two days to go over the results and he told me to come armed with any questions I might have. Well....I have a ton. First of all, I am not sure after reading so many peoples' stories it is a 100% accurate diagnosis. He is basing my diagnosis on two ulcers in the illeum that have not gone away for some time. My blood work was negative for Crohn's, but he feels the ulcers are indicative of Crohn's. I am lactose intolerant, have urgent need to go during the day but only about 4-5 times a day and not loose stool. The reason I went in the first place to see this GI was for a chronic upper left abdominal pain that progressed from dull and occasional to constant and stabbing/throbbing after my second C section. It also feels after I eat like bugs are crawling downward or water is trickling past something in the painful spot. Of course, the capsule endoscopy showed nothing in my intestines and the endoscopy showed nothing in my stomach except reflux. I have answers for the pain in my lower intestine (ulcers) but not for the worst pain of all in my upper intestines. His best guess is referred pain, but I am not buying that. I don't know whether it is my pancreas or spleen, or worse. I am going to ask him for more testing because I can't live with this awful pain without answers. Anyway, he wants to start me on Pentasa to see if this helps the pain. My questions are is Pentasa a good choice? Has anyone here with Crohn's ever had these symptoms I am describing with the upper left pain and trickling feeling? Also, I want to get pregnant with my 3rd and last child but I don't know whether it is a good idea to start medication for a while, go off it to have the baby and start up again. I am not comfortable taking meds while pregnant unless absolutely necessary. Any advice in the pregnancy/Crohn's realm would be appreciated too. I am at wits end, over a year of pain and I just feel awful every day. Thanks in advance if you can respond or help out.

 

[kllyeve]

Welcome. I have found a lot of really good info and support here.

It is possible it is referred pain in the ULQ - abdominal issues are notorious for referred pain. It is also possible that you have IBS as well and dietary changes can help with that - try reaading the Specific Carbohydrate or Paleo diet threads.

It is possible that you have Crohn's lesions that they have not yet seen in that spot as well. They can be diificult to find if not just in the terminal ileum.

There are two thoughts on treating IBD - one is to start with the big guns - the biologics Remicade, Humira - and put the patient into remission ASAP. Some doctors then keep the person on those till they stop working, some move them down the medication pyramid to the mildest drug required to maintain remission.

The other way is to start with the mildest kind of drugs - such as pentasa - and only move up in strength of medication if remission cannot be obtained.

The approach used seems to depend on the country you're in, the individual dr's approach, the severity of the disease at presentation, and the patient's wishes.

I started on Pentasa - stayed on that for 1 yr with no real change in condition
moved onto Entocort(a steroid) when they realized things were getting worse not better on the colonoscopy, tried Imuran and failed that(bad pancreatitis from it) and now am on Remicade and am doing well.

My bloodwork - the CRP - has been NORMAL the entire time I have been ill. Never gone up even when my Crohn's was at its worst. Lots of people have normal CRP and really bad disease.


I was over having kids by the time I was diagnosed, so can't really address the pregnacy concerns. Although I might consider putting off the third child until you get your own health issues sorted. You can't take care of anyone else if you don't look after yourself.

Also, if the pain is bad - use a heating pad at night to help you sleep. And don't be afraid to ask/demand for pain meds so you can sleep. Doctors sometimes are reluctant to prescribe pain meds for abdominal pain but there is no need to suffer while they figure out what is wrong. I know with 2 little ones, you probably can't take much during the day, but even being able to rest will help your tolerance for the pain in the day. I have Tramacet, which helps alot with the pain but does not knock me out.

Hope that helps!!

 

[kllyeve]

Oh and Crohn's does not always present with diarhea or loose stools as the main symptom. I suffered from chronic constipation for years and only had 2 episodes of the runs from it at the time of my diagnosis.

 

[KellyMom]

Thank you so much for your reply! The med advice is great, I felt like I was going in blind to meet with him until I read your info. I guess there IS a good chance it is Crohn's, I just keep reading common symptoms that are not at all what I am experiencing. The bottom line is, I have a lot more reading to do I guess I just ordered a book I hope will give me a Crohn's for Dummies type of overview.

 

[nevilletanner]

hi,

i found out i have crohns a couple of weeks ago. found this web site very descriptive -

http://www.medicinenet.com/crohns_disease/article.htm

 

[JDTM]

Kelly,

I can't answer any of your questions on the mom front, but as a 32-year-old male who was just diagnosed, I can at least relate to your age and the timing! The only thing I can say at this point is give the Pentasa some time to work -- I am still waiting to see if it works for me; I just finished my third week of being on it and haven't really noticed much of a change yet, but many people have indicated that Pentasa can take almost a month to really kick in. Hang in there buddy, and definitely keep us updated! And keep asking questions if you have them -- everyone on the forum has been super helpful and welcoming.