Frustrated
Hello everyone I’m new to the forum. I was diagnosed with clostridium difficile in August 2018. I took an antibiotic in April of 2018. And started having bad stomach issues on & off. Then the end of August I felt like if I didn’t get help I was going to die. I went through 3 rounds of antibiotic to try to get rid of it. And they failed each time. It’s crazy-antibiotic can cause it. But it takes antibiotic to cure it. So I ended up needing a fecal matter transplant. Went through that. Cured the cdiff. My digestive system has always been finicky. But, this last year it has been horrible. I went to a 2nd GI dr because my original just didn’t know what to do anymore. After making a 3 hour one way drive. This being a 2nd trip & the drs assistant walking in. She said “it’s Friday & you’re my last patient, my brain is shutting off” I just couldn’t bring myself to take the office seriously. That moment I just felt I’m never gonna get anything figured out here. Waste of time. So I went back to my original dr. He agreed to do a colonoscopy & EGD. See if there were any changes with in the year of my other 2 colonoscopies. Every thing looks wonderful he said. Other than acid reflux and a small hiatal hernia. He said he didn’t know what to do next. And asked if I had any thoughts. I said could we do the pill cam. He said they don’t do it in their office. But could get me into someone that does. I had to go on antibiotic last month for a sinus infection. My stomach ache I have had for 4 months straight mysteriously went away? So I told the nurse I was feeling better. And I didn’t wanna have any testing if I was feeling good? She said she agreed & to call back if anything has changed.
So here I am last week my stomach issues started coming back. I’m just trying to get through the day as positive as I can. But inside I’m just so sad & bummed. I never know when I’m gonna have bad diarrhea or what’s gonna set me off. I’m sitting here on the couch & my stomach is just gurgling & rumbling and making all kinds of noises. I never know if I have gas or I’m gonna poop my pants you know? I took a bite of a banana & swallowed it. And my stomach instantly reacted. I called GI dr. Nurse said I need to get ahold of primary dr. And see about another cdiff testing. Normally the GI dr calls it in. Especially if their office is concerned about it. So I go tomorrow to chat with primary dr. Then from there will determine if I need to call GI dr back. My insurance wants a small bowel follow through test. Before they will approve the pill cam test. I was trying to not get any of this done. As our deductible started over. I started trying to get things going in November. My deductible was met & was covering 100%. But now it’s just a “it is what it is” kinda thing. I was ready to give up. But my husband sent me a link to here. And I have been reading things like “be your own best advocate” “dont give up” “fight for your health”. So thank you to those who encourage to not give up. I was just ready to give up on myself again. It took me 8 years of fighting to figure out I have active Lyme Disease & 4 other co infections. So I knew what it is to keep fighting. I only give up for a short time & get back to fighting again. I sat and cried on the toilet this a.m. I just couldn’t stop the crying. Missing who I used to be. Missing being able to eat normal foods. It’s not even that I miss any certain kind of food. Just for the most part not having any thing. That majorly made me ill or triggered what I call a flare of some sort, I have had tummy issues on and off for years. I will get sick sometimes. And I will vomit and have bad diarrhea. Lose a bunch of weight. Not be able to get out of bed for 2 weeks. But this last one hung on for 4 solid months without the throwing up. I just barely ate. The hunger pain is better than the pain I get from eating. If that makes any sense? I lost 25lbs this go round. Last May I was in Cali visiting family. Ended up in the ER with bad tummy pains. Said colitis. But, I just don’t know anymore. I’m thinking it’s time to stop eating much again. Because it’s the only option I have for now. I hate to say I wish one of these tests would show something. I never want anything bad to be majorly wrong. But an answer would sure be nice. The dr just keeps saying infectious IBS. And there isn’t anything that can be done.
Thanks for listening
- I'm so sorry for all that you've gone through. It sounds exhausting and overwhelming and not unlike things I experienced before I was diagnosed. It sounds like you already know how to be your best advocate, and while it takes energy and momentum, I hope you can find those things through support here. My best advice is to push for the pill cam - that's how I was diagnosed with small bowel Crohn's after having symptoms for 6.5 years. Here's a few posts that tell a little more of my story
https://inflammatoryboweldisease.net/living/trust-your-gut-irony/
https://inflammatoryboweldisease.net/living/nine-years-later/Please let us know how you're doing. I'm thinking of you!
Warmly,
Amanda (team member)Thank you so much! I read your story! And let out a little gasp when I read that you’d go for a month or so & be ok. I do this! I just don’t understand! I go for some time & I’m fine. And then all the sudden I’m not fine! And it used to not last for so long. But 4 months of this has got me wondering if this is my new way of life. I know in my heart it isn’t IBS. The first GI dr diagnosis is IBS. And people that know I’m not well say they think it’s IBS or an allergy. Someone said well I work with a lady that had the same issues. She’s allergic to Lectin. So maybe you need to stop eating foods with Lectin. I know people are trying to be helpful. But it’s actually not helpful & it’s super frustrating. I just want them to be my friend not trying to be my dr!
Do you have bleeding? People have said to me it can’t be crohns you’re not that bad off. Well first of all they don’t know how I feel & im good at faking it! I smile and I laugh & I just try to get by. Without crying all the darn time & im trying to not get depressed. But they have zero clues what I’m going through. Surviving off of cheez-its, graham crackers, potatoes, toast & soup and a few other foods. Losing 30lbs in 5 months. Not on purpose. It feels pretty bad to me! Ugh.
Hi
- I'm so glad that you saw some of yourself in my story, and I hope it gives you a little hope that in time, you'll get to a better place health-wise. I very rarely have had bleeding, but like you, I'd have extreme pain, nausea/vomiting/diarrhea, quick and unintentional weight loss, etc. I also found safety in foods like carbs, and then I supplemented with nutrition drinks like Ensure or CorePower Elite which have a lot of protein and I could sip during the day. I'm thinking of you!! <3
Warmly,
Amanda (team member)
I am so sorry you are dealing with all of this. Reading through your post, all I could do was relate. In the beginning before I was diagnosed, I went through similar trials.
Deep breaths. Don't give up. We are human and it is normal to have moments of frustration and being tired and feeling like giving up. But always push through and find the strength to continue advocating for yourself. Like Amanda suggests, I too say to push for the pill cam test. You could definitely have something going on in your small bowel which a colonoscopy does not show.
Start there and take things one step at a time. But don't give up! We are here rooting for you, always.
Elizabeth (team member)
Thank you so much for replying! Was curious with Crohns do you have diarrhea all the time? Or does it change? I’m going for a small bowel follow through tomorrow. And then my new GI appt on Monday. And hoping my results will be available to him. So we can get this pill cam scheduled! My insurance said I have to have the small bowel follow through first. Before they will approve the pill cam. I am extremely nervous about it. Having to drink the barium. I was gagging years ago when I had to drink it for a test. My tummy is not good and my gag reflex is worse than it was years ago Eeks!!
I went to my new GI dr today. He was very thorough, listened and was kind! He asked me lots of questions my first GI dr never asked. Sent me for some blood work. One being a test for IBS/IBD. He said it wasn’t a very good test. But we’d do it to see what it brought up. And sending in results of my small bowel follow through to insurance company. So they can work on getting the pill camera approved! He said if that didnt show up. He would have to do more searching. He said sorry he didn’t have medication to offer me. Since we don’t know what is going on yet. He mentioned Crohns & the concern of it. Said my fevers, diarrhea/loose stools and weight loss was concerning. It just felt good to be heard and receive feedback!
Hi
- I'm so glad that your doctor listened to you, gave you feedback, and seems to want to help you find some answers to feeling better! Please keep us updated, we'll be thinking of you! Warmly,
Amanda (team member)
Update- went to swallow the pill camera this past Monday. It was a receive and send it lab type of test. Sent in yesterday! How long does it typically take to get results from this? And I had a blood test done. Testing for IBD related illnesses. Do you know why this test takes so long to get results back?
Hi
, I'm so glad that you got the pill camera test done! I'm sorry that it's taking you a while to get results. When my doctor ordered the test, he reviewed the results in office, and I heard back from him within a few days. Have you followed up with your doctor to find out when to expect results?
I'm thinking of you!
Warmly,
Amanda (team member)
