Crohn's Disease Forum » Your Story » Hi everyone

05-02-2011, 11:51 AM   #1
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Join Date: May 2011
Hi everyone

Hi everyone. This is my first time trying out a blog so please bear with me if I don't know the ropes perfectly just yet!

I saw a GI specialist in 2000 after months of pain and diahrrea about 10x/day. He did several tests - a partial sigmoidoscopy (?), a small bowel follow-through, barium enema, blood work, etc. At 26 years old, I was a mother of 2, and diagnosed with Crohn's in 2001. Shortly afterwards, the specialist retired. I had gallbladder surgery in 2003. I had no Crohn's complications for years, taking Salofalk everyday (1000mg 3x/day... I think). In 2007 I started to have a lot of pain and frequent loose bm's. I kept going back to my GP who would send me for an x-ray and find nothing. She kept telling me that it would take me months to see a new GI specialist so I might as well just do without as long as I could. In late 2007 I went to the ER with severe pain. They would diagnose me with some foolish thing, and send me home. After 3 trips they realized that I had a stone lodged in my bile duct and that it needed to be removed ASAP. This was how I got in with my GI specialist.

I spent the next couple of years trying various medications in varying dosages. I ended up on Imuran 100mg 2x/day and up and down dosages of Prednisone over a period of a few years. I couldn't seem to stay off the prednisone for any amount of time. Finally after a week's stay in the hospital in 2009 for an ileus, my specialist put me on Humira 40ml/2 weeks. That seemed to make no difference so after a couple of months he adjusted it to 80ml/2weeks. After a couple of months, that started working and I had nearly a year without problems (most of 2010), except for the consistent joint pain which seems to go with this.

I'm 34 now, and early this year, I started having flare ups again. The doctor adjusted the Humira dosage again to 80ml/10 days (my insurance company must hate me). That didn't help. He mentioned the possibility of surgery several times, but I think he wanted to give Remicade a try first. I was hospitalized in February for a few days and put on IV steroids. They also did bloodwork, an x-ray and CT Scan which showed mild inflammation. I felt somewhat better so when I was released I was put on oral steroids.

After a month I started feeling worse again. My specialist was out of town so my GP upped the prednisone to 50mg, then 75mg the following week when there had been no change. I ended up in the hospital early in April and put on IV steroids which made no difference. I saw a new specialist because mine was still out of town. He was very thorough and promptly ordered a colonoscopy (which I had never had before!). He did a CT Scan again to compare to February's scan. There was little difference and he was doubtful that the colonoscopy would find much. While still in hospital I had the colonoscopy. As soon as I came to afterwards, he told me that there was significant scarring in the ileum, that it was virtually blocked from the scar tissue, and that it would require surgery. The following day I had an ileo-cecal re-section. I was released from the hospital 6 days later. It's been almost 3 weeks since the surgery and I am still recouperating at home. I have to be careful not to overdo it, which gets frustrating. I still have to rest a lot but I'm getting better. I'm looking forward to some time in remission! I have an appointment to see my GI to find out what drugs to stay on to maintain remission. I must admit that although I always respected my GI, I'm disappointed that he didn't do a colonoscopy sooner. It might have saved me months of suffering.

Last edited by Suzy; 05-02-2011 at 12:00 PM.
05-02-2011, 12:59 PM   #2
Catherina's Avatar
Join Date: May 2011
Location: Paleo Faliro, Greece

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Hi Suzy,
Understand your frustration but ......... alas, the more you work yourself up, the worst it is for your Crohn.
I also understand your thing with your GI. I always think when things like this happen that they are also only people. They have huge responsibility, usually much more patients than they should have per day and hence less time to spend on each patient than they should. I wished my GI would be more sensitive to me and that he would sit down and talk with me instead of running in and out of examination rooms and throwing around orders on what his staff should do. However, he sees more than 60 patients a day and has to make diagnoses on 15 or more colonoscopies a day. I think I would strangle a few patients every day.
Anyway, knowing his problem does not help you of course. If your physisian cannot keep his head cool, you should. You could suggest certain things to him, drugs etc. You can find a lot of information on drugs on this site and you will get a lot of suggestions of people that passed similar situations. By the way, I have colonoscopy at least once a year - standard procedure for Crohn's patients as far as I know whether they have symptoms/flares or not.
05-02-2011, 03:38 PM   #3
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Join Date: Jan 2011
Location: Pennsylvania

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Yes, Suzie, good question - why did your GI not have a colonoscopy sooner?! I think that certainly could have saved you months of suffering. I am so very sorry. I consider myself lucky because the first test my GI ordered was a colonoscopy (which gave me my diagnosis immediately) - she didn't mess around!

I hope you have a speedy recovery and have years and years of remission!!

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
05-02-2011, 03:47 PM   #4
Join Date: Apr 2011
Suzie, welcome aboard!!! I second Jill's post! Wishing you well! Jan



Vitamin D
Multivitamin w/D

Diagnosed: March 1999
05-02-2011, 04:14 PM   #5
Senior Member
CDDad's Avatar
Join Date: Mar 2010
Location: New Jersey
Hi Suzy,
I hope this surgery does the trick for you and you have a very long remission. I'm in remission and still on Humira to keep it that way.

Good luck!!!
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
05-02-2011, 04:25 PM   #6
Senior Member
bruscar's Avatar
Join Date: Jan 2009
Location: wexford, Ireland
Welcome aboard Suzy !!
5 surgeries,(so far!)Crohn's colitis,permanent ileostomy,post herpatic neuralgia (from shingles)
05-02-2011, 06:13 PM   #7
ameslouise's Avatar
Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Hi Suzy and welcome!

Where are you located? Just wondering why a doc would ever tell you " that it would take me months to see a new GI specialist so I might as well just do without as long as I could." That sounds crazy!!!

Hope the surgery does the trick for you and that you get to enjoy many good years of remission. I am recovering from surgery myself - 8 weeks post op - and am finding that I still get exhausted easily! So take it easy. You cannot get enough rest! I know it's hard with kids, but hopefully your kids aren't too small anymore and can understand you need to rest!

Take care of yourself, so you can take care of them!

- Amy
05-05-2011, 11:00 PM   #8
Join Date: May 2011
Location: perth, Western Australia, Australia
Hello suzy. I am 35 and the mother of a gorgeous almost 5 yr old daughter. It sounds like our stories are extremely similar as i am affected where the ilieum is and have stricturing so badly there that even the scope during a colonoscopy( they tried the infant scope) could not get through. I havent been rushed in for surgery as they are going to do and MRI soon to determine the length of damage. Apparently i may be able to have a stent like item inserted should i meet measurements or an op should i not. Please keep in touch with me as i think your support would be of great help should i need to go down the op path or the latter. Support from another mum out there who knows only too well how difficult it is to stay calm when your not feeling so good and still find the strength to do all the things your children require of you throughout each day. Hope you av loads of support from your friends and family to help you when your not feeling so good. certainly helps no end!!!!
05-07-2011, 08:01 AM   #9
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Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

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Hiya Suzy
and welcome

Lots of rest now, don't overdo it!
Take care
Joan xxx


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!


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