Do you have Crohn's in more than one location, and if so where?
Small Intestine (Ileum) - 0.0% - 0 votes
Stomach and Duodenum - 0.0% - 0 votes
Esophagus and Stomach - 0.0% - 0 votes
Large Intestine (Colon) - 60.0% - 3 votes
Small and Large Intestine - 40.0% - 2 votes
Entire digestive system - 0.0% - 0 votes
Posted 3/17/2014 4:13 PM (GMT -6)
It has been a while. I just wanted to see how many of you have had issues with your Crohn's starting in one place and progressing to another? I was diagnosed with Ileitis 12 years ago, but had an emergency CT scan done this morning of my abdomen with showed severe inflammation in the left colon. I have been having pain in the lower left side by my hip bone since Friday but thought it was related to my cycle. I have always had pain on the lower right, so didn't think it was Crohn's. Docs are letting me stay home and starting me on antibiotics and Entocort. Anyone else have Crohn's in multiple locations?
Posted 3/17/2014 5:47 PM (GMT -6)
I had inflammation in rectum, cecum and TI.
If you are having pain on the left I dont' know what entocort will do for you. It's primarily meant to treat inflammation on the right side. Uceris might be a better choice. What meds were you on up until now?
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Pentasa (3g/day)generic Colazal ( 96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1
Posted 3/17/2014 6:19 PM (GMT -6)
Mine started in my TI and has since appeared in my stomach, esophagus and, most recently, rectum.
30-something female. Crohn's ileocolitis dx2/06. Inflammatory arthritis dx 9/09. GERD dx1/13. Asthma dx4/13. Raynaud's. Chronic headaches+migraines. Chronic chest pain. Anxiety.
Meds: Remicade, 150mg Lyrica, 800mg Gabapentin, 50mg Trazadone, 25mg Zoloft, 1mg Klonopin, 100mg Topamax, Zyrtec, Zantac, Nifedical for Raynaud's, Maxalt for migraines,
Pentasa, Prednisone, Entocort, PPIs
Posted 3/17/2014 6:50 PM (GMT -6)
My Crohn's was in my terminal ileum and entire colon from 2007-13. Dunno about before that, though, as my first hospital was more secretive than the CIA: almost literally the only thing they told me was "you have Crohn's disease". Must have pained the doctor to tell me even that much. Er, anyway. If I had to gauge from symptoms alone, I would say I did not have pancolitis in the beginning or, if I did, it was extremely mild.
I need to try to find out. Well, I don't 'need' to, but it's bugging me.
By the way, left-sided Crohn's colitis is a lot rarer than right-sided CC, but I have heard of it, so you are not unique. Do you still have ileitis? PS: In agreement about Entocort not being much good for left-sided disease, unless you are talking about the enema...
Dx Crohn's in summer of 2000.
Tried and failed: 5-ASAs, Azathioprine, 6MP, Remicade, Methotrexate, Humira.
Diet didn't make any difference either.
The only med which worked was Prednisolone, so I ended up steroid-dependent.
Had surgery 2/13 - subtotal colectomy with end ileostomy. Currently on no meds and in remission. Also prone to depression and anxiety. Ask me anything >_>
Posted 3/18/2014 8:07 AM (GMT -6)
My CD started in my rectum and now I have severe inflammation of the cecum. Would have been nice if my doctor told me; it took me getting my own colonoscopy results because I was feeling so ill and he wasn't helping me. So I am seeing a new doc next week. It's horrible when you can't trust or rely on your doctor.
Posted 3/18/2014 11:14 AM (GMT -6)
My Crohn's started on my anus with perianal crohn's skin tags, they were mistaken for hemmies (this was when I was a teenager, I had no bowl issues until my early 20's) after having my first baby (she was 16 months old at the time) I slowly started to have more frequent (but formed still) bm's and my anal tags were really bothering me so I went in for an unnecessary hemhoroidectomy and they banded them--the perianal crohn's skin tags that is) after that surgery things became instantly worse, D started then I was dx with CD as soon as my GI at the time saw the anal tags he knew what I was dealing with, he scoped me and sent me for all tests to confirm I actually had CD and at that time it was affecting my small intestine, colon, rectum and anus.
For 2 years it affected all those areas, then it cleared up in the small intestine, has stayed constant (flaring for the entire 23 yrs to date) in the colon, anus with the tags, on and off over the last 2 decades with the rectum...CD makes me sick, I haven't enjoyed life forever and last september I developed my first fistula (rectovaginal fistula) they put my on Humira, I haven't been passing anymore gas through the vagina but my CD still pretty much is rampant with lots of daily BM's and frequency...my rectum is bad off right now and my GI said that if biologics don't reverse my inflammation and put me into remission I'm looking at an ostomy, but as far as I'm concerned I will not get an ostomy, I'd rather be dead...CD has taken my desire to live away along with everything else, the idea of wearing a bag will not fix any of my emotional/mental issues that has been brought on by this disease. If anything I'm sure it'll make me feel even worse mentally/emotionally, so it's all pointless IMO.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~
Posted 3/20/2014 6:39 PM (GMT -6)
Thanks for the info everyone. Sorry for the delayed reply. I had to go to the ER on Tuesday night because my abdominal pain was so severe that I blacked out and fell on the floor. Fortunately my husband caught me before I hit my head. I awoke 2 minutes later to severe nausea and vomiting. Very scary experience. Went to the ER and after 15 hours of scans and tests, and an allergic reaction to Dilaudid (a pain med) they finally decided to admit me. Basically I do have severe Crohn's inflammation in my left descending colon and a kidney infection caused by e-coli bacteria . I am at home now with lots of drugs. I had just begun Entocort when I wrote the post, but the doctors also put me on high doses of prednisone. I feel very uncomfortable taking both. That seems very excessive. I am also on Bactrim and Zofran. Any thoughts on the double steroid dose? I am thinking it would be better to stick to straight prednisone and do the taper as planned then start back on Entocort after prednisone is finished, if that is the best option. I am also on 100 mg of Imuran and have been for over a year. What is the best 5-ASA drug for Crohn's Colitis. I am not sure if my Ileum is still affected. I haven't had a severe flare since 2010. Any thoughts?
Current Medications: Imuran, Dexilant, Apriso, Topiramate, Lisinopril, Lotemax drops, Restasis, Vitamin D and Calcium, Iron supplements, Vitamin B-12 monthly injection
Diagnosed with Migraines 1992
Diagnosed with Crohn's Disease 2002
Diagnosed with Fibromyalgia 2009
Diagnosed with Anemia 2010
Diagnosed with Raynaud's 2011
Diagnosed with UCTD/Lupus 2012
Diagnosed with Sjögren's Syndrome 2013
Currently it is Thursday, June 20, 2019 10:06 AM (GMT -6)
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