Lost and Lonely and Miserable...can't handle this

[lalaland6971]

Hi I am 35 years old, single mother of three kids. I have always been pretty healthy but about 2 years ago I started feeling just awful, gradually nausea, and diarrhea took over. They put me on Carafate and Prilosec thinking it was an ulcer. Well I never got better, some of the symptoms have lessened, but now the constant burning pain in my gut is sometimes unbearable, poo & gas sometimes smells like something died in me. Week and half ago I had a colonoscopy and an endoscopy done, they say there is ulceration with granuloma in terminal ileum, gastritis in stomach. No H.Pylori. They immediately put me on antibiotics, which helped a little but not a whole noticeable lot. I actually have had regular poo since antibiotics which actually smell like normal poo also. Dr said that if the first course of meds didn’t work then there are stronger ones to try. They have not said yet what they think is wrong. I have been thinking Crohns all along, but the dr would never check until this other doctor said colonoscopy and that. I go back to dr tomorrow and might have an answer, but I am so depressed. The pain is unbearable sometimes that I cannot deal with it. I started having this weird burning feeling on other side of gut, dr did not see anything during colonoscopy on that side, but it has flared to exactly what I am feeling in the terminal ileum where dr did see ulceration. Sometimes my gut feels so enlarged and I can barely poo, but I don’t know 100 percent if it is Crohns till tomorrow. I am just tired of the pain and cannot deal with it anymore. I have been dealing with by myself for so long and can’t handle much more of it. I need anti-depressants but medicine makes the gastritis worse and I get stomach cramps from meds. I just do not know what to do and where to look for advice on all this. I have read and read about Crohns and a lot of the symptoms match what I have, but I do not have any bleeding, diarrhea stopped long ago with Carafate. I just don’t know, any advice is appreciated. Also will the biopsies show Crohns? I have read all about it but how do they actually diagnosis you?

 

[Cat-a-Tonic]

Hi, welcome to the forum. What antibiotics did they put you on? You mentioned previously having bad-smelling poo, which makes me wonder if you might have something like c-diff. I haven't had it myself, but I have a friend who is a CNA and he mentioned once that c-diff poo smells weird (he described it as "sweet & sour chicken that's gone rancid"). You mentioned no H pylori, but did they check you for other infections such as c-diff?

Yes, biopsies can show things like Crohn's or microscopic colitis. I'm presuming they biopsied the ulcers in your terminal ileum? When do you get the biopsy results back? Hopefully you will have some answers soon.

Does the Prilosec help with your gastritis? I have severe GERD which in turn can cause gastritis attacks, and I was on Prilosec for awhile, but over time it lost effectiveness. I was put on a double dose but that lost effectiveness over time too. I'm on Nexium now which works better. I wonder if you might need something a little stronger than Prilosec since it sounds like your gastritis issues are pretty severe too.

I haven't heard of antidepressants causing gastritis to become worse - have you talked with your primary care doc about that? Hopefully there's a different antidepressant you can try that won't affect the gastritis.

 

[lalaland6971]

they put me on Antibiotics ciprofloxacin and metronidazole. I do not know about the cdiff or if i have been tested, but probably not because I would know if they did test me. Prilosec does help but if i take to much my stomach cramps really bad. So I have to open a capsule and "adjust" it. I go to the dr tomorrow and get the results. I do not know all of this has worn me very thin the past year and not knowing and not being treated properly.

 

[Susan1978]

Hi,
Am so sorry to hear you are having such a rough time right now. I was thinking exactly what cat-a-tonic was thinking about the c-diff when you mentioned the odor being so bad. I have had it many times and it can be pretty awful. My doc has always diagnosed my c-diff from a stool sample. When I have had it, I was put on those same antibiotics and the diarrhea lessened, but it took a good week or so of being on the meds to feel better. It can be pretty painful, but then again, so can Crohn's. I really hope you get some clear cut answers tomorrow! Be sure and let us know what you find out.

By the way, I have some family that lives in Hickory, what a beautiful place it is!

 

[Honey]

Hi there ,
I hope all goes well for you at the doctors tomorrow. Yes, it is scary having lot of pain but once the right treatment is found for you, you will feel better. There are stronger treatment for severe Crohns viz Remicade infusions. I am on the latter and it is working.You do not really want to go there , if meds will bring down the inflammation. It has its own unwanted side effects!! Make sure you drink plenty as that can make you dehydrated and then very sick. Avoid foods you know trigger it eg. for me that is rich creamy or cheesy sauces! Let me know how you are. Best wishes.:bigwave:

 

[lalaland6971]

In 2002 my appendix ruptured, then in 09 my gallbladder function was at 14%, so that was removed. After I lived next to a bathroom...lol...till my body adjusted to not having it. Then in 2011 i started feeling ill and it went down from there. It started in 2011 with watery poo that stunk...gas that stunk. pain started in abdomen and they put me on carafate for ulcers, but they were literally guessing because they never looked inside. The carafate took care of whatever had been going on with the watery poo. But the pain has never fully went away. It is so hard to explain it all. But my guts feel like there is burning and feels like they get swollen. They did take biopsies of everything, and the ulcer in the terminal ileum. Results are in and headed to dr first thing in the morning. He said there was no swelling when colonoscopy was done and I just want to feel better and the pain to stop. Even though dr did not see another ulcer, I can feel another has started on the left side of my gut, which now makes the pain and "swelling" ten times worse. Just really hard to deal with this anymore, I have no family here and no support system. Just praying for the best tomorrow and praying that I can get some meds that can get this under control fast. Pain gets so inbearable sometimes. Thanks to all that has answered, just knowing that there are others out there that I am able to talk to helps me so much and I do not feel so alone today. I am glad I found this website....

 

[Honey]

Hi there,
I hope you get on O.K. at the doctors and get relief from that pain. I feel for you. You are not on your own when you can say how you feel on this site to people who understand!!! Let me know how you get on. Thinking of you. :goodluck:

 

[SoOoO CoNfuSeD]

Good luck tomorrow. I'm sorry to hear about what you're going through. Though i know it isn't the direct cause, i do know from experience and research that stress, depression and anxiety have a lot to do with how your gut is reacting. It's a vicious circle. We get stressed because of how we're feeling and then we feel horrible because of our stress. One aggravates the other.. i hope that knowing exactly what's wrong with you will be the beginning of the end of that vicious circle. I know it certainly helped for me...

 

[lalaland6971]

Well went to dr yesterday and all biopsies came back. Shows inflammation. dr says early signs of Crohns. Then Dr sent me for this blood test, prometheus ibd diagnostic and prometheus crohns prognostic. They said it was some kid of DNA test. but I do not understand what that means or exactly what this is for. Dr put me on Another round of Flagyl, Protonix and carafate. Said when test gets back depending on what it says they will add some other medication. All so confusing, but no offense Dr is great but it is hard to understand hima and he does not explain things very well...he is foreign and his english is not very good..any input would be very helpful because I am more lost than before...

 

[thomkath]

I hope the meds work for you and you feel better!

 

[Honey]

Hi there,
It takes time to get the right diagnosis and treatment that suits your condition. We all respond differently to meds as we are individuals. I hope you will soon feel better. Rest and do not worry. Best wishes.