Haven't been diagnosed yet, I have some questions

[Iamcrazy]

Hi everyone,

My name is Diana and I just joined this wonderful group of people today. I look forward to getting to know all of you!

I have been browsing the forms and I do see that there is a thread for "not yet diagnosed" which is the situation that I am in.

I would like to tell you my story if that's ok, maybe you can offer some advice, it would be much appreciated.

I am currently 32 years old, I weigh 282 pounds, and I have had IBS since I was 16. As long as I can remember I have had 5-30 bowel movements a day, depending on the day. At the beginning of September 2014 I weighed 325, I have lost almost 45 pounds without really trying. It hurts to eat and I don't have much of an appetite now. I went to the urgent care clinic at the end of September with very bad pains in my right lower quadrant, they thought it was my appendix so I got sent to the ER. The er said it was nothing and to go home. Two more trips to the er and 2 visits to the family doctor I finally had a referral to the GI. I had my initial appointment in December, and I am scheduled for a double colonoscopy and endoscopy in February.

Below are some of the symptoms I am having
-5-30 bowel movement a day, mostly diarrheah
-lost 43 pounds
-feeling naseous, not hungry
-mucus in poop
-extremely tired, can't do much without having to lay down
-constant dull pain, extreme pain at times
-need to poop 10-30 mins after a meal, diarrheah
-I have had accidents before where I couldn't hold my bowel movements


I am so worried that I will have my visit with the GI and he won't be able to see anything wrong. I haven't been at work since the end of September because I physically can't do it. I know something is wrong with me, this is not normal.

Any advice or if you have gone through the same thing I would really appreciate hearing from you!

Thank you so much for reading

 

[mstirling]

To Diane

Your symptoms sound a lot like mine! I was just recently diagnosed as having crohns but was diagnosed last march with inflamed bowel disease/colitis when I had a colonoscopy. When you have the colonoscopy and the endoscopy, that should give you the answers initially your looking for then its the management stage where I am at now. Make sure they test your blood as well for low iron. In December I probably started out around 155 and now today I weighed 130! But I also have added vomiting in with mine so kind of explains the weight loss but also I don't eat much because I get tired of having what seems to be a straight pipe from my mouth to my pooper and yes I have had my share of accidents too. I have tried on my own which seems to work is taking 2-3 immodium a.d. in the morning and can make it through work without diarrheah. I wish you luck and let us know your results!

 

[Mrs_R]

I can totally sympathise with your situation - I had a very similar journey with my illness and was also told from the age of 16 I had severe IBS. My symptoms were pretty much identical to yours too. I am now 26 and finally under the care of a GI Consultant. It took me constant battles and arguments with medical professionals to get this far. My current Consultant is very good although my disease is proving to be a pain in the arse to locate (excuse the pun lol). A colonoscopy could not visualise the inflammation but it was picked up on an MRI. Unfortuntely, the lead Consultant at the hospital I am under says an MRI is not sufficient enough to start me on some of the strong treatments for Crohn's (immuno-suppressants or biological drugs). It has been a hard journey and included me breaking down in my last GI appointment when I was told there would be more waiting for treatment. I really hope your diagnosis is easier than mine. But one thing I have come to realise with this disease is EVERY single case and person is different and every story and journey is so unique. If your diagnosis does prove to be as difficult as mine, just remember that there are amazing people and support networks across the world that can help make it more bearable. This forum has been a lifeline for me. Please feel free to message me whenever you like with any questions or if you just want someone to talk you. I wish you luck with your diagnosis and hope you can get better soon!

 

[Abbynormal]

Hi Diana
Sorry to hear about you not being well and I'm glad you decided to join the forum- wish I'd have known about this before I was diagnosed with crohns. Some of your symptoms sound really similar to mine, I myself but it down to IBS for 2-3 years before seeing my GP about my concerns. Don't worry if they don't find anything leading to definite Crohn's disease when you have your colonoscopy and endoscopy because they won't just give up on you- it's always nicer to know straight from the start but I guess it doesn't often happen that way. I had to have further test done: CT scan, ultrasound, x-rays and I didn't get diagnosed till quite a while after when I had to swallow a pill cam- which diagnosed me with mild- moderate crohns in my small bowel and I was put on pentasa followed by a MRI scan that discovered a fistula and I am now said to have severe crohns in my rectum and currently waiting for the results of a blood test so I can start azathioprine (immune suppressant)
I have my fingers crossed for you that everything goes swift and easy for you... Don't be afraid to get on phone moaning at them to speed things up!!