Hi, My name is Matthew Christenson. I was diagnosed with Crohn's when I was 14 (I am now 33). My disease, while never in remission, had been livable up until oct 2013 (prior to that I had only had one bowel resection- in oct 2005) In October 2013 I had another bowel resection and since then it has just gotten worse and worse. I never recovered from that surgery, and had another resection in dec 2013. In Feb 2014 I had a perforation and had another surgery. While still in the hospital recovering from that surgery I had another perforation and yet another surgery. This time my doctor put in a temporary jejunostomy. My ostomy was so high in the intestines that I had to have a picc line and be in iv hydration about 20 hours a day. That hospital stay lasted 36 days. In october 2014 I had my ostomy reversal surgery preformed and I am still in constant pain no matter how little I eat (Including an all liquid diet). No one has any answers as so why I am in constant pain. I have been referred to many different doctors (my current doctor is sarah glover at shand's in gainesville) I am just wondering if you guys had any suggestions that we havnt thought of or havnt tried.
5 surgeries in a year, need some advice
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I am on tysabri right now. And a fentanyl patch. Anytime I eat anything I get horrible cramps. I am going to ask my doctor about referring me up to mayo clinic, or maybe down to cleavland clinic. Im just not sure what other treatment options there are. (Ive tried remicade, humira, imuran, azathioprine, cimzia, asacol, and numerous clinical trials)
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Hi Matthew, I'm sorry to hear of the awful year you have had. You say that the doctors have no answers in respect of your pain. I'm I right in understanding they are not thinking it's is down to the Crohns directly?
I can only speak from the point of view of multiple surgeries (inc bowel surgeries). I've not had five in a year, but went through three in ten months when I was first dx and that was bad enough. What I was thinking was that your last op was only in October. Although you shouldn't be in this much pain still, your case is not an ordinary one. Surgery is trauma and that can get forgotten. To have so many major ops in quick sucession, moving on to the next before you've recovered from the last will have sent your body into overdrive. There will still be lots of general inflammation in your abdomen (aside from crohns). So one thing that might help is simple time. I wouldn't loose hope on that score yet.
It is also not unfeasible that all that surgery has caused other problems. When nerves have to send messages of pain over and over again, structural changes can occur that lead to pain being mantained overtime (when the original source has gone). This is a complex area and one that has really only been appreciated in the last decade. There are doctors who specialise in this. This might be something to look into in the future if things don't change down the line. You could also have pain from scar tissue / adhesions but thats probably been discussed with you.
I really do feel for you and I hope you get this worked out. In the meantime be kind to yourself...its still early days.
I can only speak from the point of view of multiple surgeries (inc bowel surgeries). I've not had five in a year, but went through three in ten months when I was first dx and that was bad enough. What I was thinking was that your last op was only in October. Although you shouldn't be in this much pain still, your case is not an ordinary one. Surgery is trauma and that can get forgotten. To have so many major ops in quick sucession, moving on to the next before you've recovered from the last will have sent your body into overdrive. There will still be lots of general inflammation in your abdomen (aside from crohns). So one thing that might help is simple time. I wouldn't loose hope on that score yet.
It is also not unfeasible that all that surgery has caused other problems. When nerves have to send messages of pain over and over again, structural changes can occur that lead to pain being mantained overtime (when the original source has gone). This is a complex area and one that has really only been appreciated in the last decade. There are doctors who specialise in this. This might be something to look into in the future if things don't change down the line. You could also have pain from scar tissue / adhesions but thats probably been discussed with you.
I really do feel for you and I hope you get this worked out. In the meantime be kind to yourself...its still early days.
