New to Forum and Frustrated!

Hello all, I just started with this site today but I found it 2 days ago and cried reading posts that related to me. It's been so hard having no one truly understand what I am going through. My boyfriend and family are loving and supportive but they just don't get it.

Here's the shortest version of my story. Don't feel the need to read, I just have to get it out there.

Summer of 2009. Driving home from a trip (in the passenger seat thank goodness) and started having severe stomach cramping unlike anything I have ever experienced. I'm an athlete, pretty tough, and feel like I have a high pain tolerance. But this knocked me down hard. I was squirming in pain and no position was comfortable. Finally I told my boyfriend to get off the highway. We pulled into a gas station and the second I stood up out of the car everything went black and I stumbled my way through the gas station knocking things over until I puked and passed out right there on the floor. After awhile of laying on a gas station floor the pain passed and I slept the rest of the way home. Called the doctor and he said it was probably a flu bug...

3 months later I start getting nauseated after everything I eat and suddenly I have 3 external hemmorhoids the size of blueberries and I went a month without solid stool. Went to the doctor and they said stress of being back in college even though I was a junior at the time and loved school.

Then came the fissures and the throbbing pain associated with them. Finally got referred to a GI and had a colonoscopy. Results showed granulomatous colitis. Started on Asacol...3 pills 3x a day and Diltiazem gel for the fissures. Stomach aches and dizziness...the week after I would stop Diltiazem a new fissure would appear. Still fluctuated between 3 weeks of constant diarreah and constipation. I was miserable.

Nothing changed for a long time. To date I have had a colonoscopy, small bowel follow through, Prometheus test, Celiac test, Upper GI scope, Gall Bladder Ultra Sound, HIDA test (for gall bladder functionality) and a CAT scan of my gall bladder is coming up next. The result of all these tests are that I have inflammation and irritation in my esophogus, stomach, duodenum, small intestine, large intestine, and colon. Yup all the way through my GI tract.

The worst part day to day is the stabbing feeling around my anus after every bowel movement that lasts for 6-12 hours. And then sometime just hurts because it wants to. My doctor has prescribed numerous creams for it but nothing works.

I've been on Prednisone with little or no results. I'm now on Omeprazol and Asacol and Diltiazem and a "hemmorhoid cream" that does absolutely nothing. The pain is debilitating every day. I'm 21 years old and I don't want to do anything because I'm burdened by pain. Not to mention rip roaring nausea everytime I so much as have a sip of water.

At this time my Doctors think I have something in the Crohn's, Colitis, UC, family but haven't been able to pinpoint what exactly. It's so frustrating and impossible to explain how much the pain impacts me daily. I'm glad to have found people who just understand.

Sorry that was so long, haven't had anyone to unload to. If you made it through all of that just let me know if you have any advice.

Kait.

Dear Kait,
You have really been thrown into the deep end of the pool, haven't you? I can't really give you concrete advice. I keep telling newbies that there is no checklist for this crappy stuff. I wish there was.

My advice is this: listen to your body...sometimes the doctors will roll right over your concerns. Get PLENTY of rest; hard to do as a college student, I know. Find something to eat that is safe. You have got to eat, hon. I know it hurts, believe me. Stay out of stinkin' thinkin' territory. Depression gets many of us & it just makes things so much worse.

You can & will survive this! I have been dealing with CD for 26 years, I was dx at 19. I have a very rich, rewarding life. You can too.

Keep coming back. Support from those that understand is so precious.
:hang:
Michele

Hi Kait! Unfortunately, it can take some people years to get a diagnosis. There are many on here still waiting. You must not give up and keep trying to get answers, so you can start appropriate treatment. I am happy your doctors haven't dismissed you, and do recognize something is going on, but I hope they can figure out exactly what that is soon. I wish you luck and please keep us posted!

Hi welcome

You have found a great place with plenty of friendly supportive people. I hope that your doctors can pin point what it is and diagnose you soon and get you on the right treatments to get you feeling well again.

Welcome to the forum, Kait.

Glad you found a place where you can relate to a whole group of people. Sometimes it can be tough for people to get a diagnosis, but I hope you find the forum useful in obtaining knowledge about what you are going through and maybe suggestions your doctors might not have thought of. In the very least it's a place where you can vent to people who know exactly what you are going through and that might make your journey a little less difficult

Thanks you guys. Just being here is such a blessing. I am so glad to have found such a wonderful community online!

CT scan on the 22nd! Just got the call today!

Good luck with the ct scan, keep us updated

Welcome to the forum! I too am new here and i am so happy to have found it! Everyone here is awesome, and its so nice to have people know what you are going through! I am being treated for crohns....but now docs are questioning if i do have it1 It is so frustrating to have so many things wrong and not know for sure what it is! I too have anal fissures, amongst other problems i have had! The pain is horrible, so i know what your going through! i just recently had surgery ( wish i never did).....it was an anal sphincterotomy, and the pain was so much better, but now the pain is coming back....i dont think the ulcerated fissures are healed and i am suffering incontinence!! It sucks!! I hope that you somehow get relief from the pain you are in and that the doctors can figure out for sure what it is!! Look forward to talking more!!

Welcome to the forum, Kait. You are in the right spot to receive the support and kindness that you need. Inflammatory Bowel Disease can be a scary thing, especially if you are new to it, and your loved one do not understand the nature of the disease. Please make yourself at home. There are many wonderful threads to visit that should answer some of your questions, or lead you on the path to help. Hugs to you.

Kait,
Welcome to the forum, You are definitely in the right place for support. I am fairly new here to the forum, and everyone has been very kind and understanding. No need to apologize for your long post. It is good to get it all out there for us to hear what is going on with you. You have had some pretty rough times and we all know what that is like. It took me 4 years to get diagnosed and treated, lost insurance through divorce and now trying to get treated again.

I hope they find the answers to help you heal soon.

You are in my thoughts and prayers

Hello, yeh i know how you feel about not being bothered to do anything. Im 27 and used to be athletic (jogging, kickboxing, rock climbing) havent done any of those in months now due to a flare

Personally i find if i can keep a little fitness in there (bit of walking, gardening etc) it helps move my bowels and the pain. Also as said find some comfort foods, when feeling low these can be a great perk up (i enjoy homemade chicken soup or rice with chicken and cheese sauce). You may find some foods (and drinks) do irritate your stomach so make a note of these and try and keep away from them.

Good luck in your diagnosis and hopefully you will get back to normal some time

Hi Kait,
When I had some bad anal pain a few years ago, my doc prescribed AnaMantle cream for me. It comes with an injector and you inject in there. Anyway, what a life saver for me from these painful anal spasms I was having. Each dose would give about 12 hours of relief.
Good luck!

Hey Kait

Welcome to the forum hunny
So sorry to hear what an awful time you've had. I'm keeping my fingers crossed you get a quick diagnosis and meds that can help you deal with this.
You'll get plenty of support and valuable information on here so have a look around. In the meantime hang in there hunny and take it easy.

Hugs

Paula
x

Kait, your story makes me so sad for you. My best advice is to learn as much as you can and become part of your medical team. You will help them better diagnose you and treat you and you will also be able to evaluate your doctors. Trust me there are good and bad doctors and many of us have changed doctors with good results. I wish I could make you feel better, everyone here does too. But I know that it's a small consolation, but comforting all the same, to at least feel you are understood and yes we understand what you are saying and feeling! I wish for you some peace from this disease and I wish it comes soon!