That seemed to work so Ill try again.
Hi all,
I have never used blogs before but have been hearing for years from ppl that i should join one to discuss my situation and finally it got bad enough that i feel no choice.
I first started getting symptoms when I was around 20 or 21 and studying abroad. I started getting terrible pains and diarea and lost 40 pounds pretty quickly. I went to drs there who didnt seem to know what it was. I came back to the states had tests done and was diagnosed with crohns disease.
I was recommended to go to Dr lichtiger in NY as he was supposed to be the expert. He tried me on all sorts of oral meds that seemed to be doing nothing. I tried pentasa, keflax, donnatal, bentyl and many others with no affect at all. He thought since my disease was most active in the spot where meds would be absorbed that none would work. We decided to try remicade injections. I was hesitant bec of the risks but didnt have any other choice. It worked and i was symptom free for about a year and a half!
At that point i met my wife and was engaged when things started up again. I needed something to helpquick before the upcoming wedding so we went on Humira. It worked quick enough and i was able to enjoy the wedding and the first few months after. After about 8 months i was sick of giving myself injections every other week and was feeling pretty ok so i called the dr and switched from humira to a mixture of levaquin a pretty intense anti biotic and entocort some sort of a steroid. This must have been a strange thing to be on long term bec every other dr i spoke to was suprised i was on it so long but it was working so i didnt care too much.
This is where things got interesting. We were expecting our first child and decided to move to Minnesota where my wifesfamily is from. At first i had my dr in NY refill my meds and answer my questions from afar. We switched insurances to a state program because i was out of work since the move. They wouldnt cover levaquin so i switche to something similar called avelox.
Bad move. Within a week i was hospitalized with a flare up. at this point my dr in ny didnt feel comfortable and told me i need to get a dr locally. I did that. Things went from bad to worse as i was back in hospital a few more times that year as nothing was helping. I started getting the craziest pains and was vomiting everything i ate. For about 6 months things were getting proggressively worse. It came to the point where i was taking painkillers at least once or twice a day and spent so much time just lying in excrciating pain on the floor. I cant tell you how many times i was grocery shopping and had to stop what i was doing in middle of the store and just keel over in pain.
I was also vomiting anything i ate. I tried cimzia another injection type drug and also azathyoprine but it did absolutely nothing.
My dr recommended going to the mayo clinic as that is in minnesota and apparently the #1 place for digestive problems in the country.
I saw a dr tremaine there who said that things were pretty bad and surgery is only real option. we tried tacrolimus as one last shot first but it did nothing.
I scheduled a consult with a top surgeon. Things were so bad by the time i saw him that even though he was booked solid for 2 months he made sure to squeeze in my surgery that week! In the end they did a major resection this past august and removed about 20 inches of the narrowest intestine he ever saw. He told me it was like a babys pinky and no wonder anything i ate or drank was coming back up. I stayed in the hospital a week and the recovery at home was another 6-8 weeks.
At this point i still had no job because the whole year i was here i spent in pain and couldnt focus properly on work.
I thought the surgery would let me be symptom free at least for a few years but boy was i wrong! Its now 6 months after surgery and I was just released from the hospital for the 3rd time SINCE SURGERY! I spent 4 days there with another obstruction. All 3 obstructions were at surgery spot. They now want to do another surgery. I have no interest since luckily i found a job about 2 months ago and cant afford to take so much time off so soon. PLus there is no guarantee that it will be any different this time. They think its a mechanical problem like scar tissue or the way the last surgery healed up and that no meds will help. They think thay can do it laproscopically but again they said that last time too and it turned into a pretty major thing. PLus at the age of 27 i am nervous to alraedy be cutting for the second time its almost like i want to save it for god forbid a worse time.
Anyway now i have no other options since i tried all meds orally already. i am currently on 6MP but obviously not doing enough. Plus i tried all the biologic injections already and apparently they cant be used again once you stop the first time cause ur body builds a defense to it so wont be affective plus more risks.
It seems surgery is my only option unless i want to keep having flares every 8 weeks or so.
I am currently waiting approval from insurance company to get another opinion from mayo clinic again. maybe they have some new treatments. I am not interested in the test drugs though cause i dont wana be a guinea pig they try things on.
Anyway thats the basics of my story.
Thanks for reading i know it was long feel free to give me any suggestions or feedback.
If anyone is from Minnesota or knows some other drs they would like to recommend let me know.
Thanks again
Hi all,
I have never used blogs before but have been hearing for years from ppl that i should join one to discuss my situation and finally it got bad enough that i feel no choice.
I first started getting symptoms when I was around 20 or 21 and studying abroad. I started getting terrible pains and diarea and lost 40 pounds pretty quickly. I went to drs there who didnt seem to know what it was. I came back to the states had tests done and was diagnosed with crohns disease.
I was recommended to go to Dr lichtiger in NY as he was supposed to be the expert. He tried me on all sorts of oral meds that seemed to be doing nothing. I tried pentasa, keflax, donnatal, bentyl and many others with no affect at all. He thought since my disease was most active in the spot where meds would be absorbed that none would work. We decided to try remicade injections. I was hesitant bec of the risks but didnt have any other choice. It worked and i was symptom free for about a year and a half!
At that point i met my wife and was engaged when things started up again. I needed something to helpquick before the upcoming wedding so we went on Humira. It worked quick enough and i was able to enjoy the wedding and the first few months after. After about 8 months i was sick of giving myself injections every other week and was feeling pretty ok so i called the dr and switched from humira to a mixture of levaquin a pretty intense anti biotic and entocort some sort of a steroid. This must have been a strange thing to be on long term bec every other dr i spoke to was suprised i was on it so long but it was working so i didnt care too much.
This is where things got interesting. We were expecting our first child and decided to move to Minnesota where my wifesfamily is from. At first i had my dr in NY refill my meds and answer my questions from afar. We switched insurances to a state program because i was out of work since the move. They wouldnt cover levaquin so i switche to something similar called avelox.
Bad move. Within a week i was hospitalized with a flare up. at this point my dr in ny didnt feel comfortable and told me i need to get a dr locally. I did that. Things went from bad to worse as i was back in hospital a few more times that year as nothing was helping. I started getting the craziest pains and was vomiting everything i ate. For about 6 months things were getting proggressively worse. It came to the point where i was taking painkillers at least once or twice a day and spent so much time just lying in excrciating pain on the floor. I cant tell you how many times i was grocery shopping and had to stop what i was doing in middle of the store and just keel over in pain.
I was also vomiting anything i ate. I tried cimzia another injection type drug and also azathyoprine but it did absolutely nothing.
My dr recommended going to the mayo clinic as that is in minnesota and apparently the #1 place for digestive problems in the country.
I saw a dr tremaine there who said that things were pretty bad and surgery is only real option. we tried tacrolimus as one last shot first but it did nothing.
I scheduled a consult with a top surgeon. Things were so bad by the time i saw him that even though he was booked solid for 2 months he made sure to squeeze in my surgery that week! In the end they did a major resection this past august and removed about 20 inches of the narrowest intestine he ever saw. He told me it was like a babys pinky and no wonder anything i ate or drank was coming back up. I stayed in the hospital a week and the recovery at home was another 6-8 weeks.
At this point i still had no job because the whole year i was here i spent in pain and couldnt focus properly on work.
I thought the surgery would let me be symptom free at least for a few years but boy was i wrong! Its now 6 months after surgery and I was just released from the hospital for the 3rd time SINCE SURGERY! I spent 4 days there with another obstruction. All 3 obstructions were at surgery spot. They now want to do another surgery. I have no interest since luckily i found a job about 2 months ago and cant afford to take so much time off so soon. PLus there is no guarantee that it will be any different this time. They think its a mechanical problem like scar tissue or the way the last surgery healed up and that no meds will help. They think thay can do it laproscopically but again they said that last time too and it turned into a pretty major thing. PLus at the age of 27 i am nervous to alraedy be cutting for the second time its almost like i want to save it for god forbid a worse time.
Anyway now i have no other options since i tried all meds orally already. i am currently on 6MP but obviously not doing enough. Plus i tried all the biologic injections already and apparently they cant be used again once you stop the first time cause ur body builds a defense to it so wont be affective plus more risks.
It seems surgery is my only option unless i want to keep having flares every 8 weeks or so.
I am currently waiting approval from insurance company to get another opinion from mayo clinic again. maybe they have some new treatments. I am not interested in the test drugs though cause i dont wana be a guinea pig they try things on.
Anyway thats the basics of my story.
Thanks for reading i know it was long feel free to give me any suggestions or feedback.
If anyone is from Minnesota or knows some other drs they would like to recommend let me know.
Thanks again
