Feeling a bit defeated...

feeling a bit defeated...

Hi everyone, I'm so glad I found his forum because I was feeling so totally alone a couple days ago.
I am 26, have had GI problems since I was about 12, that I can remember at least. I was Dx with celiac disease in April 2010, went gluten free w rare "cheats"; until recently...i felt great most of the time. I started at 220 lbs before being Dx and now I'm down to 170! I'm glad about the weight loss, most of it intentional, but recently have been having major issues and losing/gaining like a mad man! I have a range of symptoms from exhaustion, dizzy spells, night sweats that are horrendous, leg pain, back pain, stomach cramps, diarrhea and/or constipation, headaches, stabbing pains in my "guts" and before Thanksgiving I found a rectal "lump", not to mention occasional bloody stool. I had a VERY traumatic birth almost 4 years ago and have been having the bloody stools since then. I thought it was related...? I have seen 5 different drs who say they have no idea what the lump is, but I finally have a colonoscopy scheduled for this Friday. It wasn't until I just saw the Dr who is doing the colonoscopy until IBD was brought up...my PCP thought it was IBS AND celiac! I had horrible pain, cramps, diarrhea, exhaustion, and couldn't eat ANYTHING starting 12 days ago. now I can handle rice, potatoes, and gluten free soft cookies. my friend who has UC said her flares last about 3 weeks but she feels horrible for months. oh, and I've been eating tums by the truck load! they don't seem to really help. my PCP also prescribed me prevacid, I haven't taken it yet cuz I don't see how it will help. any ideas? oh, I forgot to mention, I'm very impatient! lol

well lilersmommy... you might want to work on your impatience because IBD takes A LONG time to diagnose in a lot of cases. It took me 3 years to get to the place where they are 99 per cent sure... however, they like to be 100 per cent. I often find doc's like to do a process of elimination of all other diseases as there is no test that is 100 per cent reliable. I think a colonoscopy is a good place to start but it doesnt reach the majority of your intestines...

Im not sure what you are looking for if the tums aren't working... I think prevacid is a realistic choice and might help, but ultimately, it is up to you... depending on the severity. There are lifestyle changes but judging by your limited diet - there doesnt appear to be much you can do food wise. If you are drinking alcohol, coffee, soda, tomatoe juices or other acidic juices, you might want to stop for awhile to see if that helps... keeping a food journal also can help identify triggers...

Good luck with your colonoscopy and I hope you get some answers... it really is a long process in a lot of cases.
Welcome to the forum

Hello and welcome! You are no longer alone, you are among people who have been there and can totally relate to what you are going thru!

I am suprised you are just having a colonoscopy now after so long with such huge problems! Don't be surprised if it comes up clean. If it is Crohn's, activity is likely further up beyond where a colonoscopy can reach. If that is the case, request a pill cam or upper GI series/small bowel follow thru.

Like Wendy said, it can take a long time for diagnosis so hang in there!

You'll find lots of good info on here and many knowledgeable people.

- Amy

Welcome to the forum! I am so sorry you haven't been feeling well. You mentioned having a difficult labor and bleeding - have your doctors suggested hemorrhoids?

I sure hope you can get to the bottom of it all soon. A colonoscopy is a great place to start. The prep isn't easy, but the procedure is a breeze!

Please let us know how Friday goes!

@ Jill, I have actually been to 2 different surgical specialists in Seattle, one for gyno/urology and another for colo-rectal, both said there wasn't anything they could help me with. So I'm hoping the colonoscopy can determine exactly what it is.
@ Amy, if it comes up clean I think I will be exactly at the place i was a few weeks ago-confused! I have had random symptoms, but always chalked it up to being part of my celiac. But at this point, I'm STARVING! I start the prep for my test today, but I am actually wondering if I'm not eating much, does the prep need to be so harsh?! I think ill call about that today. Thanks for the support and good wishes! Oh, how does the pill cam work? Do u get to eat food while u are doing the test? Hmmm...intriguing....
@keona, I'm generally an impatient person, but looking back, I've been living w these symptoms for almost 4 years, so I guess that seems like patience to me LOL. I guess its all perspective. Thanks for the good luck wishes! we will see how this week goes, hopefully ill have some answers.

lilersmommy said:

But at this point, I'm STARVING! I start the prep for my test today, but I am actually wondering if I'm not eating much, does the prep need to be so harsh?! I think ill call about that today. Thanks for the support and good wishes! Oh, how does the pill cam work? Do u get to eat food while u are doing the test? Hmmm...intriguing....

Click to expand...

Wow, I have heard of eating light for 2 days prior to a colonoscopy, but not 5 days beforehand! From what I read, yes, the idea of eating lightly is so the prep will go easier.

For the pill cam, you usually have to fast from noon the day before and have a full prep like a colonoscopy. You then swallow the camera early in the morning and wear the monitor/belt to capture the images. You can go on with your day and can usually can eat a light lunch 2 or so hours after swallowing the camera. You will return to the doctor's office usually about 8 hours later to return the belt. The camera will pass through with a BM; it is rare it gets stuck.

Jill, thanks for all the good info! I started the prep diet today, which is just a low residue diet, the day before is liquid only, I can do ANYTHING for 4 days, right? My 3 yo daughter is also stayin home w me this week, she has double ear infections and a sinus infection, this week should be LOADS of fun :/

I'm getting nervous about the colonoscopy, I'm a big sissy when it comes to anything I have to be anesthetized for. I dont do well with the meds they use. My anxiety is kind of getting the better of me, I'm starting to want to cancel the test. I'll admit it, it really scares me...I don't like being drugged like that.

I had my colonoscopy, the results are still out, but he said he didn't find any proof of UC or Crohns. He took a biopsy in my small intestine to see if I'm eating contaminated (gluten containing) food. Then, he found a polyp, close to my rectum, he tells me " its concerning to me that you have a polyp at such a young age, so I sent it off to find out what it is." Talk about freak me out! I won't find out until next Tuesday. Until then, I'm still having the same symptoms and still losing weight. I've gone back to eating more meats because I'm tired of being so exhausted and hungry, but the aftermath makes me regret it. The pain is tolerable at times but also unbearable at other times. He mentioned an ultrasound to follow, but "we will discuss that more in clinic". Has anyone also had this happen? What about polyps at such a young age (26)?

Well, that is good news that no evidence of IBD was found. When you say he took a biopsy in the small intestine, do you mean perhaps the terminal ileum? I don't believe a colonoscopy can get into the small intestine. But, regardless, I am glad he took biopsies. You'll have to let us know the findings of those.
As for the polyp, I don't really thing that is anything to be alarmed about. I know many people our age (I am 27) who have had polyps. Obviously, this will be something to keep an eye on, but again, I don't think it should be worrisome. Again, let us know the results of the testing.
Try not to stress out too much, that will only make you feel worse. And, perhaps, is adding to your weight loss. When I stress out, I lose weight very quickly. Try think about positive things, such as the fact that you may not have IBD! Good luck and keep us in the loop!