Hello from a Newbie

[sschofield]

Hi All

My name is Samantha and I'm 31 years old and going through the process of being investigated for Crohns. I've found it to be slow going, but when I read everyones elses story it seems I could be waiting a long time for a definite diagnosis!

My issues really reared their head about a year and a half go, but when I look back, I've had tummy troubles for years which was put down to IBS back in the day. Over the years it's been on/off but when I fell pregnant in 2009 the problems really started. I was very ill, constant sickness/diahrrea (sp) and I lost a lot of weight. I was hospitalised a few times and the doctor decided I had hyperemesis (pregnancy related sever morning sickness) and even gastroentroitis (sp) at one point. In fact my diahrrea and abdo pains were so bad my waters went early and my daughter was born a few weeks early. No one ever considered maybe something was up with my bowels and told me I'd be fine once the baby was born!

However nothing changed, in fact my symptoms seem to be getting increasingly worse. All my blood test throughout pregnancy and since have showed high levels of CRP and ESR. I finally had a colonoscopy in Dec 10 which showed inflammation/ulceration (and lymphoid patches, still to this day I have no idea what these are) in my terminal illeum and the biopsys should focal ulceration. Since then nothing has happened, I've had to wait till my next appt which is 3 weeks, but I did go back to my gp recently as I have started experiancing severe fatigue, worsening symptoms and flu like muscle aches. Not ideal when you're running around after a 9 mth old baby! My blood results came back again with high CRP and ESR (letter did not give the exact figures) but my liver function was normal.

So really my question is, how do you cope, especially mums and dads out there, and did anyone have similar results from the colonoscopy, and if so does this sound like crohns or something else?

I'll stop waffling on, congrats if you got to this point without falling asleep!

Sam x

 

[xJillx]

Hi Sam and welcome! I am so sorry it is taking so long for you to get the answers you seek. Unfortunately, it is like this for many. I consider myself "lucky" that my GI, though hesitant, diagnosed me with Crohn's and prescribed medication pretty much right after my colonoscopy, even though my results were similar to yours. My biopsies didn't confirm "Chronic Crohn's" (what doctors usually "like" to see before making a diagnosis), but showed "Suggestive to Crohn's". So, if you are not getting the answers you want from your doctor, and he is reluctant to make a diagnosis, get a second opinion. You need to be proactive about your illness, so you can start treatment and get a on road to remission so you can keep up with your little one!

 

[Crohn's 35]

:welcome: to the forum Sam! Most pregnancies are welcomed because the symptoms seem to disappear during gestation period. Yes it takes a long time for some to be diagnosed. All the findings and results and your symptoms def point towards Crohns. Would be good to get your iron and b12 levels checked, alot of people suffer because of lack of one or both of the two. Non absorption could create lower levels. Yes children do wear you out but fatigue is a major symptom of IBD. To get some nutrients , it is good to drink Ensure to raise your nutrition levels and Vitamin D3 and Calcium. Many of the drugs can rob those. Hope you get some answers and quick. Best of luck, hope to see you around!

 

[sschofield]

Thanks ladies, it's nice to hear some good advice! I want to go to my next appt fully armed and ready with lots of questions etc so I don't walk away feeling totally baffled again!

 

[Jennjenn]

Hi welcome

I think Pen mentioned a lot of important information that I would bring across to your doctor. I am glad you found the forum, there are a lot of friendly people here that can help you with their knowledge and to give support. I hope that your doctor can get you feeling well soon.

 

[CDDad]

It does sound like Crohns to me. Inflamation and ulceration of the illeum are common with Crohn's.

Hopfully you can get on the right medicine to bring this under control.

And... Welcome to the forum!

I tried looking up lymphoid patches - got nowhere except this definition: Unencapsulated clusters of lymphoid follicles.

ha..useless, but from what I gather just another sign of disease at work.

 

[xJillx]

Thanks ladies, it's nice to hear some good advice! I want to go to my next appt fully armed and ready with lots of questions etc so I don't walk away feeling totally baffled again!

Another thing I do to get the most out of my appointments and to avoid feeling baffled after is I bring my husband with me. He sometimes is quicker on his toes with questions. Without him, I'd probably leave having more questions than before the appointment. So, if you have someone that can tag along with you, it may help.

 

[ameslouise]

Hi Sam and Welcome!

I agree with Jill that it's a great idea to bring someone to your appts. My husband will often to remember to ask things that I have forgotten about or has a question I didn't think of. It's also helpful to have someone else to remember thing that the doc says to you!

Good luck - hope you can find a treatment soon and start feeling better!

- Amy