Update for Colon and Stomach issues

jktin008

Hello,

Sorry, this will be a bit long. I am a 32 year old female.10 weeks ago, I started feeling very ill, vomiting and had to use the bathroom 8-14 times a day (diarrhea). At first I was thinking it was just a stomach bug, so just did the best I could to stay hydrated and try to eat when I felt up to it and ate foods on the bland diet. After about 2 weeks, the symptoms seemed to be getting worse and I started to notice some blood and cramping in the lower left side of my stomach. My husband said "hey, maybe you are pregnant?!" I was thinking, yeah maybe! So, we go out and get several tests. I take my urine the next morning to take the tests, and noticed my urine was an amber color. None of the tests were positive, but I decided I need to go to my regular doctor. I called to make an appointment and they asked why I was coming in, then the receptionist put me through to the nurse who started talking to the doctor. My doctor then told me to go to the ER because I am very dehydrated. My doctor was right, I was dehydrated and needed a lot of fluids. After being hydrated with IV fluids and given antibiotics (still don't know why they gave me those because they told me my labs seemed overall ok and no infection seemed to be present), I was released. They did not run any other tests other than blood and pregnancy. They tried to get a fecal test from me, but at this point I did not trust them so I chose not to provide one because I did not already trust the people caring for me and it was gross. I know, I should have complied and I am stupid not to, but I wanted to get out of the hospital. They were not very nice to me and they told me I had a stomach bug.They told me to take 2 days off, gave me two more very strong antibiotics (Flagyl and Cipro)-but I still don't know why when they told me I did not have an infection and would not answer me when I asked, Bentyl (for stomach cramps) and Zofran for vomiting. They also told me if I was not better in a week to go see a Gastroenterologist (GI doctor).

Regardless of my objections, I took all the medicine they prescribed. Two weeks later, still not better, but I did not trust the ER assessment. So, I go to my regular doctor and run some tests. I have blood in my stool and the same symptoms. By this time I have now lost 25 lbs on top of being in pain a lot of the time. He tells me this is not a stomach bug (gastroenteritis) and that I need to be seen by a GI doctor because it looks like I may have something more serious. Colon cancer and Irritable Bowl Diease/IBS also run on both sides of my family. My grandfather is a two-time survivor of colon cancer and my mom has had cancerous/pre-cancerous polyps removed in her 40s.

To ensure that I go to a GI doctor, my doctor said he will not give me any more Bentyl (the pain medicine I am now reliant on to eat anything because now everything I eat makes me instantly use the bathroom or vomit and be in pain without it) and made a referral to a GI doctor for me and has his office call for me to be seen as soon as possible because my doctor is recommending I get a colonoscopy asap. Because GI doctors are VERY booked up around where I live (booked for months in advance), I have not been able to get in to one yet and I have been deal with these issues for 10 weeks. Even my doctor's office has been trying to get me in earlier, with no luck. On top of all my symptoms, I am now more weak and exhausted all of the time. I have also now lost 45 pounds too.

Though I still have most of the same symptoms, I have noticed today that my pain is not as bad and I am able to eat a little bit more. For the first time, I also did not have to take Bentyl to eat. And though I still have diarrhea and vomiting, it is not has much (only about 6 times a day). I do still notice some blood, but not as much.

If this all goes away, do I still need to go to GI doctor for colonoscopy? I just don't want to waste my time/limited funds and be treated like I am a crazy fool (like they treated me in the ER) or be poked on with an anal probe when I don't really need it.

Thanks

Hello All,

May 15th I FINALLY was able to get into a GI doctor after I went to my old PCP doctor and she pulled some strings to get me in to a GI the next day!!

My symptoms came back with a vengeance since my last post and the GI doctor will be doing a Colonoscopy/Endoscopy/Biopsies all at once while I am under anesthetic. Everything is set up for May 30th.
I have had to also do a bunch of blood tests, stool studies and a skin biopsy (because I seem to have Erythema Nodosum all over my legs, the dermatologist say.Skin biopsy will confirm that once I get the results). I should be getting all my results from the tests within a week.

I start prep for procedures May 27th.

I am pretty scared what they are going to find, but I am also ready to have a game plan to feel better now.

rivka_m

I'm glad you're scheduled for the colonoscopy, etc... I've had a couple now and as others have said the prep is the worst. You're unconscious for the procedure.

I'm not a doctor but I have ulcerative colitis and the symptoms sound nearly identical. The good news is that if it is UC or Crohns, there are treatments.

Let us know how it goes! And don't be shy about asking for drugs to treat the symptoms even if you don't have a diagnosis yet.

jktin008

Thank you Rivka_M.

I got a little of the blood work back from the doctor. She said that I test negative for Celiac Disease and does not think I have Irritable Bowel Syndrome. She thinks I have some kind of inflammatory bowel disease- like Crohn's or Ulcerative Colitis (like you said and you have).

She said she will know more after the procedures are complete and have all the biopsies/blood work/other test results back all after May 30th.

Regardless, I am so ready to find out whatever it is so I can get relief.

Two down and ruled out. We'll see what is found.

Best Wishes
-Jackie

jktin008

Update: The best news- NO CANCER!!!! But,It is either Crohn's or Ulcerative Colitis. I will find out for sure in a week or so after biopsy results, but my doctor feels like it is Crohn's Disease more. I also have some kind of non-related stomach disease that produces too much acid called Erosive Esophagitis.

I went through the prep using Prepopik, and though it was like drinking Draino, it wasn't as bad as I thought it would be. Honestly, that was the worst part of the entire Upper Endoscopy/Colonoscopy/Biopsies. Prepopik also sounds far better than anything else because it is only two 5 oz doses and it has a somewhat pleasant, orange sweet tarts flavor. Then you drink the recommended glasses of clear liquids after. It works pretty fast, or did for me, so do the prep in the bathroom on the throne if you can. I recommend it for bowel prep if you can get it. The no eating was not an issue for me so much either because I don't really eat to begin with due to the amount of pain it causes.

I had both procedures done at the same time and they loving called it a "double dip". My procedures were at 10 am and I was done by 2:30 pm-recovery from anesthesia and all. I don't remember anything because I was under general anesthetic.

My doctor waited for me to wake up and brought me a ton of really gross pictures of my stomach and colon. She said I have a lot of acid,erosions and inflammation in my stomach from some kind of stomach disease she thinks is Erosive Esophagitis that she will confirm once the biopsy comes back. Also, unrelated, I for sure have an inflammatory bowel disease-most likely Crohn's Disease but I have to wait for the biopsy on that too. The doctor said I have ulcers throughout my entire colon starting at the *kitten* going all the way up to the ileum-which is reflected in the pictures she gave me. At first she thought it was more Ulcerative Colitis, but when she got past my colon, she started to see it was more like Crohn's. She took several biopsies and will need the results to confirm which one.

My doctor also decided to not wait to treat me. She put me on a high does of Prednisone (for temporary treatment only she said), Dexilant and Asacol for now until she gets everything back. After that, we will determine what everything is and determine the best course of treatment to get me to remission as quickly as possible and stay there. I feel like my doctor is really great and I am receiving the best of care.

After all this, I am feeling really blessed and so happy I did go through with it all. Though IBD will be a life-long issue I will now have to be mindful of, I am so happy to know it is not cancer and that relief is on the way!

Cheers
-Jackie

rivka_m

I'm glad to hear it's not cancer! As you know, UC and Crohn's have treatments. Prednisone will probably make you VERY HUNGRY, all the more so if you weren't eating properly before diagnosis due to the symptoms. I lost something like 15 pounds in 2-3 weeks on a bad flare then gained it all back plus more very quickly - I was SO hungry! Anyway there's a good (if not very active) UC group here, I'm sure there's a Crohn's group as well.

Lots of learning ahead for you, I hope the prednisone gets it under control quickly. If not, there's a bunch of drugs out there. I'm on Remicade and it worked well for me but it's expensive - not sure if money is a factor for you, I'm in the US so it is.

I've never had Prepopik, I get Miralax/Gatorade which isn't bad but you have to drink a half gallon. I'll keep Prepopik in mind for next time.