minnietoty said...
Hi,
For ten years, I used to suffer from severe constipation (I've had it for 29 years since my birth), moderate cramps and normal weight loss and docs considered this to be IBS. In 2007, I started to develop severe abdominal pain, fever, a quick weight loss and persistent diarrhea. Since then and till now, I have had 2 colonoscopies, 2 endoscopies, 1 enteroscopy and a proctosigmoidoscopy in addition to a number of CTs and MRIs. All these , except for the proctosigmodoscope and enteroscope , showed normal mucosa and like you, there were hyperplastic lymphoid follicles with mild active inflammation in both the colon and intestines. The proctosigmidoscope (July, 2011) showed chronic proctitis and enteritis. I'm still not diagnosed with Crohn's but I was told that proctitis are the cause of the crazy D.
You mentioned that you have been well on Salofalk and then no use? I'm just wondering about this as I used to take Salofalk for two continuous years and then I stopped it because of a severe flare up. Seven months later, I had a new one and was put on pred which I'm still on now for 2 years. Salofalk used to make me better but it could increase D.
Now, I'm on methotrexate injections as I failed azathioprine and imuran. Honesttly speaking, it's not that good. I do suffer from horrible nausea despite of taking Zofran. Add up, those mouth ulcers that are spread all over my mouth and gums and can be painful 24/7 and fatigue. I can't o to work the day following the injection and had to arrange my schedule (I'm a college teacher) to take that day off.
I agree with a lot of other fellow crohnies that you should see another doc as it might not be Crohn's and turn out to be a digestion problem.
Did you try those spasmolytics designed for IBS? I used to take them when they thought that I had IBS and they really made me feel better then.
Take care!
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Current meds: Methotrexate im injection/week, Pentasa enema (before bedtime), Pentasa tablets 2g, Pred (tapering 7.5 mg and should switch to Entocort), Nexuim 80 (GERD and gastritis for 13 years now), folic acid supplement, 3 mutivitamins.
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Hello!
Thank you for your answer!
I found many similarities in your diseasse with my curent status. You are still not diagnosed?!!! I have lost my words. Your current status sounds that you are very very ill and I can not imagine how are you able to work? I can't. Simply can not! :(
I think every word is illusion since your life is real full of pain and If I think that it my be mine on nex minute - well
to be honest - just started telling myself everything will be OK. But? I am not that sure next momment.
So was right when told that hyper. limp. follicles are sing of inflamation. Doctor said me that and in another sentence
that this is nothing to worry about
. Oh, Yea!
Salofalk: have been on for a month. Everything OK. Then doctors did not find anything and told me to tapper it. So I did.
Mistake? I do not know.
Def. I have to do something. Right now I am considering to start LDN. I would, If was able to get it somewhere. It s not easy. And another doc, yes. But I ran out of opportunities, because they only check prev. results and said me everything is OK.
So your Crohn's had spread because you were not diagnosed, as I see. And your are still not diagnosed. I wish there would be a way I could help you. And help me.
Did not take spasmolytics. My conspitation lasted longest for two months. In worst case I gone to WC 1/week!
What about
biologics for you? When?
You also take care! We read each!
YP9