I'm new to the forum & am diagnosed with Crohn's. Just want to give some hope!

[Keepingfaith]

Hello all! I am 15 & have been diagnosed with Crohn's(in October) but when I found this forum my heart dropped because I know it sucks to be undiagnosed! Here is a story of hope for ya'll!:

I've always had GI issues. I've been seeing a GI since I was 2. My issues were constipation though. I went to the ER every two days with full fecal impactions(that's right. EVERY two days). At the age of around 4 I had a scope that ruled out everything and I got the "IBS" diagnosis.

I had several "mini flares" as I call them. Then I had my Gallbladder removed at age 13(2nd youngest in the hospital's history). That's when all HECK broke loose. Apparently I was septic & I stayed in the hospital for a week afterwards. I woke up from surgery with excruciating pain in my joints & after countless doctor trips I was told by a Rhuematologist it was "Mono". Eventually, the flare spontaneously ended.

Fast forwarded to February 2011 & I had my first MAJOR flare. I was so sick & miserable. I saw 4 GI doctors, a neurologist, a rhuematologist, my GP, A THERAPIST!(A doctor told me it was 'in my head') & multiple other specialists.
I had 4 scopes done, pill cam & 2 upper GI's in 5 months. All of my scopes showed nothing as well as the pillcam.

In August of 2011, I landed in the hospital for severe dehydration. A doctor gave me a referral to a family friend of hers, a GI doctor. She told me if anyone could figure it out, it was him. I wasn't convinced but I figured I had nothing to lose. He immediately ordered a SBFT & the report showed I had a huge mass in my lower right abdomen. My GI immediately scoped me because he thought I had a cancerous tumor. It turns out, it was a defect in my colon caused by Crohn's. My Crohn's formed an inflamed "pocket" so to speak and it was filled with poop! That is why I was always "constipated"! It's amazing to look at the pictures of my scopes from previous GI's & the one I had that confirmed my Crohn's. It is a night & day difference! I don't understand how my bowel looked completely inflamed, as opposed to the previous scopes done a few months prior.

Now, I have a severe case of Crohn's. The biopsies show that it affects my esophagus, stomach, ileum, whole colon, and rectum. I have lost 90 pounds in one year & have failed so many medications & I haven't even been receiving treatments for a year yet. I got drug induced Lupus from the Remicade(that sucked!) & I can't digest many pills. I couldn't even digest the prednisone. I lost 20 pounds while taking it, and I took it for 6 months.

So, don't give up! The simplest tests can help you get a diagnosis!

If you are interested into seeing for yourself how inflamed my Colon is, I'll email you a pic from my last scope

 

[Rebecca85]

Wow! Thanks for sharing your story. But I'll pass on the scope pics!

As for the pred- doesn't it come in a soluble version where you are? And have you tried enteral nutrition as that can be just as effective at getting you into remission.

 

[Keepingfaith]

I was actually hospitalized to receive the IV form for a month! I then just "tapered" like anyone else would. It didn't do much for me so it was like taking "sugar" pills Hahahha.

My inflammation has gone down a lot and I have been maintaining my weigt for a month but I recently found blood back in my stools and have lost 5 more pounds oo:

I'm going to discuss with my GI about maybe doing tube feedings or something simmilar? I can tolerate a lot of foods, I just can't absorb a lot of it. As of now, I have an agreement with my GI that I will eat 2 snacks a day & a meal but lately I've been cheating and have only been eating a meal & snack(that's because I have to with the pills). I really am interested in EN! I've done NG feedings before & that was amazing for me!

 

[StarGirrrrl]

Thanks for posting

I have been sick and exhausted all tests (apart from laparoscopy- surgeon refused, and Pill Cam, health authority won't fund) along with tapping out a GI, Rheumy and Endocrinologist. I don't know what to do next Because they keep finding inflammation in my blood but no tests (a WBC scan found belly inflammation but never found again, even with the best test you can get, a PET/CT) have found it so I have reluctantly accepted a short steroid trial. Then they want to do long-term steroids but I can't commit to that right now.

 

[allieinwonder]

Thank you for posting your story here for others to read and be inspired by! I know when I was completely undiagnosed (I am diagnosed now, not a completely solid diagnosis, but they know something is wrong) I read these kinds of stories for hours a day, trying to keep up hope that I wasn't insane. I know everyone here will appreciate your story as well.

Also, welcome to the forum! You will find a ton of awesome people here in your same situation to talk to. Hope to see you around!

 

[Tesscorm]

Thanks for posting! Very inspiring!

Just FYI, my son did enteral nutrition through an NG tube and had very good results. Hope it can do the same for you if you decide to try it! There is a subforum for EN under Treatments.

Also, under Treatments, you might want to have a look under LDN (Low Dose Naltrexone) - it's quite a safe drug, very few side effects and some members have had success in using it. It's not often offered as a treatment by GIs as the drug was initially developed for other illnesses but, as I said, there have been studies in its use for Crohns (and other auto-immune diseases) and number of members here have found it works for them.

Good Luck!!

 

[agirlwithadisease]

Wow I neverd thought that you ocan have GI problems when you are very young. Before i was diagnosed with Crohn's my PCP and Therapist told me it was in my head aslo. Like when i was younger i felt something was wrong and i told my Doctor at the time that im having problem and she was like i wan't you to do x-rays and that was it. But there was nothing that they could see. After that i started to have Arithis badly in my knees and hands. I still feel pain in my joints. But when it finally hit me i started to go WAY down hill. my weight was 115 and it dropped to 83 in less then 1 month. I was very dehydrated. It took the doctors awhile to figure my case out. But like you i also have a severe case of Crohn's. I had 20 fistulgas and 2 Large abcesses the size of softball.

I am truly sorry for what you have been thurough but like you said "don't give up!" and that is hard because you want to give up because you think that this is the end of my lfe when it is truly the beginning =D

 

[fosterschick]

god bless you , lets hope you can get some relief from the pain soon , thanks for sharing the story it helps keep the likes of me sane !! ive had the 'all in your head' diagnosis too !! x

 

[Keepingfaith]

Ya'll aren't crazy & thanks for the support & prayers! I know I'llI pray for the "undiagnosed club" every night. It's one thing to be sick but to also have no idea what's causing you so much pain is just miserable! It may take A LOT of time but when you're finally diagnosed you can go back to the doctors who called you crazy & rub it in their face that you do have a medical disorder!

It feels SO good (=

 

[dannysmom]

Thank you so much for this post! I really hope you get a treatment to make you feel better!

 

[texasboy21]

I am so glad to see I'm not alone in this whole deal I am having a colonoscopy tommorow to see if I have chrons right now my gi seems to think I do...I hurt in my intestines so much...I just hope they are able to tell me what's wrong and what to do to make it better...Does anybody who has chrons feel fatigued all the time before your diagnosis? Anyway just thought I would say thank you to all the members for the support....

 

[dannysmom]

I am so glad to see I'm not alone in this whole deal I am having a colonoscopy tommorow to see if I have chrons right now my gi seems to think I do...I hurt in my intestines so much...I just hope they are able to tell me what's wrong and what to do to make it better...Does anybody who has chrons feel fatigued all the time before your diagnosis? Anyway just thought I would say thank you to all the members for the support....

Good luck w/ your scope.
Fatigue is my son's worse symptom ... but he is undiagnosed. I think the fatigue level varies with Crohn's patients.

 

[Jackie010307]

I couldn't agree with the op more! I was in this club when I first joined the forum. I first remember having symptoms at age 14 (1994) but I may have had symptoms before that. Whenever I mentioned it to a dr back then I was told either it was all in my head or I was looking for attention. Several gi doctors as an adult also told me it was all in my head, and by that point I was overweight so then that was another reason for my problems. I finally found out a month ago today that I have colitis! It can take years, especially if no one is listening. I found out the hard way that sometimes, no matter how insistent you are, there are doctors who will never listen. I've had more doctors that I can count, and I finally found one who does listen. Keep trying, and don't be afraid to find a new doctor. Remember, you are paying them, not the other way around. As much as many of them will never admit it, you CAN fire them! It took me over 16 years to finally figure it out! I think not knowing exactly why your body is doing what it is doing is sometimes the hardest part. Once you have an answer you can make a plan for dealing with things.

 

[anyone]

Thanks for your post. It gives me some hope!

 

[Keepingfaith]

No problem! Getting diagnosed is only half the battle believe it or not. If/when you get diagnosed remember: Just because the first, second, third & maybe even fourth medication you try doesn't work for you, it doesn't mean anything.