Hello all! This is my story.

[adrianna]

Hello everyone!

I am kind of at my breaking point with Crohn's so I wanted to share my experiences and get any feedback, comments, support or advice from y'all! This is an extensive site and very welcoming. Thanks ahead of time for any replies.

I guess I'll start from the beginning. First you should know that my father has Crohn's Disease. He had a pretty severe case of it in his late 20's. Twice he was admitted to the hospital and they told him that there was a good chance he might not make it. He weighed 98 lbs, could not keep any food down on his own and had extreme blockage. This was still a time when the disease was unheard of so treatment was nowhere near it is now.

When I turned 18 I started to experience severe cramping. I went to the emergency room 8 times my Freshman year of college with doctors telling me that I most likely had an ulcer that they could not find. I ignored it and just went on with the symptoms for another 2 years. Then they were not that frequent only hitting me once every few months. Eventually the pain was becoming more of a monthly/weekly occurrence so I decided to see a gastroenterologist and get serious about finding out what was wrong with me. I had a colonoscopy that came back clear, the capsule swallow test that came back fine and finally on an Upper GI Endoscopy they found a small area that they believed was Crohn's disease. The doctor was hesitant to make the diagnosis but since my symptoms and genetic history matched, he did. He put me on Pentasa (that 16 pills a day stinks!) I was on Pentasa for 2 years with no relief or changes and finally quit taking it. I was also put on prednisone twice with no relief. Again, I decided to ignore it and try dieting and cutting out things that I knew hurt. This past year (I'm 26 now) I have started seeing a new gastroenterologist because this is now taken over my life. We have done a colonoscopy, Upper GI Endoscopy, Upper GI x-rays, CT scans, blood tests and my insurance denied the capsule swallowing test. ALL tests came back completely normal. You would think I would be happy to hear this but I'm so upset it just has me in tears. I have so much pain and discomfort and to not be able to find out why is so aggravating. Now I don't know if maybe I DON'T have Crohn's and it's just IBD. Or, maybe I'm just a big baby? This is what I constantly think.

Here are my current symptoms:

5-10 bowel movements a day
75% of bowel movements consists of explosive diarrhea
ALL bowel movements are some type of diarrhea
I have cramps all over my stomach, they do not reside in one area (my GI keeps getting angry with me because I cannot pinpoint a location but I promise you I can't tell where it's coming from, it just all hurts). I will however say that it often feels lower rather than higher but it is not prominantly on the left or right side.
I do not have any pain unless it is associated with a bowel movement.
I have had no weight loss at all, ever, unless I have dieted on my own.
My blood tests are all fine except for a slightly elevated c-reactive protein level (between 2 and 4).
I am currently only taking Nexium for acid reflux.
The more explosive the bowel movement the more pain that is associated with it.
I have a lot of gas, more than is normal I believe.
I have a lot of heart burn, sometimes so severe it literally burns my mouth when it comes up.
Somedays I am so tired I feel as if someone drugged me.
I often run a low grade fever.

If this is Crohn's, of which I just don't know anymore, it is very different from my father's. I've researched Crohn's for 7 years now and I understand that it can be very different. When they diagnosed me, they diagnosed the Crohn's in my duodenum and my father's is in the ileum.

I am currently waiting to hear back from my doctor on which medicine he wants to blindly give me since we are out of testing options. I really don't want to do this

Thanks for listening everyone.

 

[imisspopcorn]

:welcome:
Hi Adrianna,
I'm glad you found this forum. There are many other people here that have not gotten an absolute diagnosis. I can't imagine how frustrating that must be for you. Check out Habba syndrome on the internet. It has some of the same symptoms as IBD but it is related to the gallbladder and not absorbing bile salts. Your symptoms do sound like Crohn's but it's puzzling because you didn't respond well to steroids. I hope you get some answers and relief soon. There is a lot of good info and support here.

 

[adrianna]

Thanks ladies!

to imisspopcorn (love the name, popcorn is a BIG no-no for me), I had my gallbladder taken out two years ago. It was crazy actually, I went in for an ultrasound for Crohn's and they found that I had gallbladder stones. I didn't have any symptoms or pain that I attributed to the gallbladder. When they opened me up my gallbladder was shot and I had 52 gallstones. Craziness.

In regards to the steroids, I was only on them for a short while. I'm not sure how long you are supposed to be on them but I believe both episodes was only for a two week duration. Those were the only two medicines I have tried. My first doctor wanted to put me on Remicade but it almost killed my father. He had horrible horrible side effects so genetically they didn't want to try it with me.

It just always amazes me how different my symptoms are from my father. For example, he cannot drink any milk and has a hard time with dairy products. Whereas milk makes ME feel much better, I think maybe it calms the acid (I have terrible acid reflux, so bad that I went from having no cavities at 23 to 15 cavities at 24 and my dentist said my saliva had the strength of battery acid lol). Also, my father is fine with spicy salsas and orange juice and I have a terrible time with the two. Orange juice, popcorn and alcohol are the three main things I absolutely will not touch.

The main reason my doctors keep ruling out other IBD's is because I do wake up at night with cramps and of course the fact that my father has it.

The severity of my determination to get this thing taken care of was because about 4 months ago I had stomach cramps so bad I hit the floor and almost fainted in the hallway here at work. Since then I have had two more similar episodes at home. It just amazes me that something that causes so much pain is not showing up in all of these tests.

Thanks again, and have a blessed day everyone!

 

[adrianna]

Another note about the Habba, I have looked up Habba Syndrome before and usually it is not associated with cramping. My cramps can be severe so I have always ruled that out. Also, if I remember right (it's been awhile) I think that Habba patients have a heightened cholesterol and mine has always been fine.

 

[Crohn's 35]

HI there and welcome to the forum, you and your dad and the combo sounds alot like mine, I have had my gallbladder removed and pains in the stomach that eventually localized to the right area. It is not uncommon to have both CD and IBS, when there is no pinpoint explanation that is what they put it too. I too landed in the Hospital from Remicade, but tried Humira and it did help but eventually had to go back on Prednisone starting at 40mg. I am probably in your dad's age group, my older sister has both UC and CD, and pretty severe, as she bleeds. My older brother UC, so it can run in immediate familes. I have had many times over that I have had alot of pain and it either doesnt show a thing or very minimal and therefore not always taken seriously. I have had two resections and with my first took Entocort. My GI doesnt recommend Cimzia as the other two didnt work. It really just goes to prove that we are all different in every case. Narrowing is very hard to not get blockages and treat it. It was for me. I couldnt take all the weight loss and pain with a 4 year old. She is now an adult and she is fine, so far. I hope you can find some relief soon. Try not to stress as it doesnt cause Crohns but agrivates it. Take care! Welcome again!

 

[adrianna]

Hi Jettalady, thanks for the response. Sounds like you have had a rough journey! I'm the only sibling that has stomach issues. And, have not had any problems with weightloss. I will mention here though that I have an insane metabolism. My thyroid is fine and it actually fascinates my doctor. I'm a tad overweight but you wouldn't know it by looking at me. I consume anywhere from 2,000-4,000 calories most days. I have always ate a lot and this is probably why I have so much pain! If I would stop shoving my face maybe it wouldn't hurt so bad haha This all got brought up when I woke up during a procedure and they almost could not give me enough anesthesia to keep me out. (I have the same problem at the dentist, I metabolize the anesthetic too fast). My father also has extremely high metabolism but unfortunately cannot eat as much as myself to keep his weight on.

It's very comforting to hear that others have had pain with no signs showing up on tests. That seems to be the most frustrating part of all of this.

 

[adrianna]

Also, gosh I know I'm typing a lot but it feels so good to get it all out! What do you guys do for pain relief? My last doctor gave me Lortab, 30 a month. That seemed to help the achy feeling but did nothing for the stabs of pain because they wouldn't work fast enough. I've tried Tylenol (I was told not to take Ibuprofen or anything with it) and it doesn't work. I'm allergic to Ultram/Tylenol 3. I use a heating pad sometimes at night to help but I obviously cannot do that at work.

My current doctor refuses to prescribe anything for pain. He says that pain relievers only worsen the symptoms overall. BUT, there was a little green pill that I took a few years ago, it melted under my tongue. It wasn't like an addictive pain reliever and was made for the stomach area specifically. It worked pretty good and was fast acting, does anyone know what that was?

 

[adrianna]

I thought maybe it was Bentyl but I couldn't find dissolvable tablets online, maybe I missed them though.

I talked to my doctor today. He said that he is still hesitant on perscribing a medication since he was unable to find anything in the tests. Argh Instead he wants to try a more mild steroid, like budesonide. I'm meeting with him on Monday to see if that's really what he wants to do. It's annoying because he is acting like nothing is wrong since he cannot find anything. He said the only thing he is worried about at this point is dehydration and wants to keep an eye on my c-reactive protein. That doesn't help my explosive D or pain though. *sigh*

 

[atcig]

Welcome Adrianna

 

[adrianna]

Thank you atcig.

UPDATE: I met with my doctor today. He's starting a round of Prednisone just to see if it will work this time. He also perscribed me Phenergan because I've been increasingly nauseous. He also told me to drink pedialyte since I have been using the restroom so much. My CRP was up again (he didn't tell me how high). It's crazy how much it fluctuates.

Also, has anyone had problems with thin blood? The last two times I've had my chem panel done the nurses have commented on how thin my blood was and asked me if I take blood thinners. Never been a problem before and I'm not sure what causes it.