- Joined
- Mar 8, 2011
- Messages
- 31
need support!
Hi everyone,
I just joined this today and i am so very happy to have found it! My story is pretty long so i apologize in advance for the long post but i want to explain all i have been through so that i can hopefully get some much needed support and advice! Ok here i go.....
I am a 34 years old mom, i got my gallbladder removed back in 98 a month afte i had my twin boys! I had some issues with the after effects, everything went through me for a long time! After suffering a few years like that I saw a gi doc and she did a colonscopy and an endoscopy.....they found nothing wrong with me ad told me it was ibs, and to continue to live on immodium! So i did and i of course had good and bad days but just lived like that! Then i started to have rectal bleeding, went to my primary care doc and she said it was ibs and that i had hemroids....so i still continued to live like that!
That is utntil i started to drastically loose weight.....but i didnt want to go to the doctors and get told the same thing that it was ibs...well in august of 2007 i started having bad rectal pain and just thought it was the hemroids acting up. A few days later i couldnt move, called my doc and they called in pain med and anal cream, well a few hours later i ended up having pus and a ton of blood coming from my rectum, so i immediately went to the emergency room! I found out that it wasnt a hemroid that was bothering me, but i had a very large perianal abscess that had burst and had fistulasand my whole body was being infected. I needed emergency surgery, but i couldnt have the surgery right away becasue my blood levels were so bad that i needed blood transfusions. This was all so scary for me and i had no idea what was going on!! after getting 3 units of blood, and already on IV antibiotics and pain meds i had the surgery and the surgeon put in drains.... A gi doc was called in as well to take on my case as everyoe said that these are all symptoms of Crohns disease, which i had not heard of until this day. The surgeon was convinced that i had Crohns disease! I also got daily iv iron infusions while in the hospita, and i was started on a total of 16 Asacol pillls a day! The gi doc then did a colonoscopy while i was in the hospital! i ended up in the hospital for 10 days! Went home to a visiting nurse everyday, then i found out i also had kidney stones, i had a cat scan done in the hospital too! I went and followed up with my gi doc, and he said that the colonoscopy did not show that i have Crohns disease, but he was "treating me as if i did". i had a second surgery dec of 07, it was a fistulotomy. I had now lost over 60 pounds in 5 months. I also had to continue to follow up with the surgeon very often because of the drains, and she told me that she has been a colon rectal surgeon for a long time and there is no doubt in her mind that i have Crohns!! UGH..... So my symptoms improve some what but then i had good and bad days! My gi doc then said that he wanted to start me on immunosupressive therapy......i the mean time i found out i was pregnant, so that was out of the question. I had a great pregnancy, continued the asacol through it, and took the prenatal vitamins and iron becasue i was still anemic! I was so happy that i was doing so well! I had a C-section as precaution, in case i had any smal fistulas or abscess.....had my son sept 11, 2008!! And that is when i startedto go down hill again! I put off goig back to the gi doc becasue i was exhausted and was dealing with issues with my baby! After loosing 45 lbs ad suffering from rectal bleeding with every bm, i finally went back to my gi doc! He talked about doing an endoscopy.....had insurance issues, and i finally had that test a yr and a half ago! he also switched me to Lialda 4 pills per day, and i forgot to say i am on prilosec as well! He found nothing with the endoscopy, celiac was neg, and everything else was as well! I was anemic still so i had to increase my iron pills to 3 or 4 a day! i also was defficient in folic acid so i had to start taking folic acid everyday! I again had problems with my insurance so i was not able to follow up with my gi doc as i should have. Well i continued to loose weight( now it is a total of 60r more pounds ) I am the smallest i have ever been inmy life. I am 5'11'' and i wiegh 135 pounds. This past nov i started with really bad rectal pain again to the point that i couldnt sleep and the bought of diarhea was horrible, going 10-15 times on a very bad day, and i started to bleed. This concerned me, so i called to make an appointment with my gi doc. he called me back that evening and scheduled an emergency colonoscpy for the following day! So now i had to clean myself out in excruciating pain! I was crying all night long in pain! well i had the colonoscopy done....they needed to give me the maximum about of medication, my blood pressure was low to begin with and the was terribly low after all the meds, so i was there for over 5 hours and i had the hardest time waking up. He decided to do bloodwork. He also told me that he did not see signs of Crohns disease, but i did have ulcerated fissures, and hemroids(which i knew about) and he said that i was very swollen! So he said that i should see a new colon rectal surgeon and that i should see a Crohn specialist! He called me before i got home and said that i am severly anemic and that i need to see a hematologist, becasue i had NO iron at all in my body and my blood levels were low! ( i dont kow why he didnt have me go straight to the er) So a few days later i saw the hematologist who said i needed blood transfusions, and iron infusions...becasue the iron pills were not working. i had my first iron infusion that day, and got scheduled for the blood a few days later after getting more bloodwork! In the mean time i was still in horrible rectal pain....finally got an appointment qith the new surgeon( and i wish i went to my other surgeon) He said i needed surgery.....he said a hemroidectomy, a lateral anal sphincterotomy and something else! he said it would improve my quality of life. The surgery was going to be scheduled for january, but when the secretary called to schedule it she could hear the pain i was in so once again i had an emergency surgery. ( and i wish i looked more into what was being done) My gi doc called in the mean time and said that once i am healed from the surgery he wanted me to get the pillcam endoscopy done! and that he thinks that i have severe IBS from getting my gallbladder removed in 98. The surgery was a night mare, and i have to say that i am not having the sever rectal spasms everyday, but my poor rectum is still so swollen and i am still having some bleeding with BM. I have still been seeing the hematologist and a few weeks ago finally finished 8-10 iv iron infusions.....she also said that my b12 was borderline and she had not checked my folic acid.....i just had bloodwork done a few days ago, and i will call tomorrow for the results, i was finally being checked for the folic acid and she was further looking into my b12. I also fially had the pillcam endoscopy done yesterday, and i am waiting on the results of that! I apologize again for the long post and i know that there is so much that i left out becasue i was trying to just give the main details in the hopes that someone will read this and tell me what they think!! I am so frustrated with everything going on and the docs ot knowing what it is, all the research i have done points to crohns, but im not a doctors! I am not going to settle for a diagnosis of severe ibs.....my bodys not absorbing nutrients and vitamins and i just want to know what is wrog wioth me so i can get proper treatment and try to live a normal life! The surgery i just had, i wish i never had, but i will leave that for abother post! thank you so much for reading this and i hope that someone out there can help me out and talk to me cuz i feel so alone! Again thank you!!!!:sign0085:
Hi everyone,
I just joined this today and i am so very happy to have found it! My story is pretty long so i apologize in advance for the long post but i want to explain all i have been through so that i can hopefully get some much needed support and advice! Ok here i go.....
I am a 34 years old mom, i got my gallbladder removed back in 98 a month afte i had my twin boys! I had some issues with the after effects, everything went through me for a long time! After suffering a few years like that I saw a gi doc and she did a colonscopy and an endoscopy.....they found nothing wrong with me ad told me it was ibs, and to continue to live on immodium! So i did and i of course had good and bad days but just lived like that! Then i started to have rectal bleeding, went to my primary care doc and she said it was ibs and that i had hemroids....so i still continued to live like that!
That is utntil i started to drastically loose weight.....but i didnt want to go to the doctors and get told the same thing that it was ibs...well in august of 2007 i started having bad rectal pain and just thought it was the hemroids acting up. A few days later i couldnt move, called my doc and they called in pain med and anal cream, well a few hours later i ended up having pus and a ton of blood coming from my rectum, so i immediately went to the emergency room! I found out that it wasnt a hemroid that was bothering me, but i had a very large perianal abscess that had burst and had fistulasand my whole body was being infected. I needed emergency surgery, but i couldnt have the surgery right away becasue my blood levels were so bad that i needed blood transfusions. This was all so scary for me and i had no idea what was going on!! after getting 3 units of blood, and already on IV antibiotics and pain meds i had the surgery and the surgeon put in drains.... A gi doc was called in as well to take on my case as everyoe said that these are all symptoms of Crohns disease, which i had not heard of until this day. The surgeon was convinced that i had Crohns disease! I also got daily iv iron infusions while in the hospita, and i was started on a total of 16 Asacol pillls a day! The gi doc then did a colonoscopy while i was in the hospital! i ended up in the hospital for 10 days! Went home to a visiting nurse everyday, then i found out i also had kidney stones, i had a cat scan done in the hospital too! I went and followed up with my gi doc, and he said that the colonoscopy did not show that i have Crohns disease, but he was "treating me as if i did". i had a second surgery dec of 07, it was a fistulotomy. I had now lost over 60 pounds in 5 months. I also had to continue to follow up with the surgeon very often because of the drains, and she told me that she has been a colon rectal surgeon for a long time and there is no doubt in her mind that i have Crohns!! UGH..... So my symptoms improve some what but then i had good and bad days! My gi doc then said that he wanted to start me on immunosupressive therapy......i the mean time i found out i was pregnant, so that was out of the question. I had a great pregnancy, continued the asacol through it, and took the prenatal vitamins and iron becasue i was still anemic! I was so happy that i was doing so well! I had a C-section as precaution, in case i had any smal fistulas or abscess.....had my son sept 11, 2008!! And that is when i startedto go down hill again! I put off goig back to the gi doc becasue i was exhausted and was dealing with issues with my baby! After loosing 45 lbs ad suffering from rectal bleeding with every bm, i finally went back to my gi doc! He talked about doing an endoscopy.....had insurance issues, and i finally had that test a yr and a half ago! he also switched me to Lialda 4 pills per day, and i forgot to say i am on prilosec as well! He found nothing with the endoscopy, celiac was neg, and everything else was as well! I was anemic still so i had to increase my iron pills to 3 or 4 a day! i also was defficient in folic acid so i had to start taking folic acid everyday! I again had problems with my insurance so i was not able to follow up with my gi doc as i should have. Well i continued to loose weight( now it is a total of 60r more pounds ) I am the smallest i have ever been inmy life. I am 5'11'' and i wiegh 135 pounds. This past nov i started with really bad rectal pain again to the point that i couldnt sleep and the bought of diarhea was horrible, going 10-15 times on a very bad day, and i started to bleed. This concerned me, so i called to make an appointment with my gi doc. he called me back that evening and scheduled an emergency colonoscpy for the following day! So now i had to clean myself out in excruciating pain! I was crying all night long in pain! well i had the colonoscopy done....they needed to give me the maximum about of medication, my blood pressure was low to begin with and the was terribly low after all the meds, so i was there for over 5 hours and i had the hardest time waking up. He decided to do bloodwork. He also told me that he did not see signs of Crohns disease, but i did have ulcerated fissures, and hemroids(which i knew about) and he said that i was very swollen! So he said that i should see a new colon rectal surgeon and that i should see a Crohn specialist! He called me before i got home and said that i am severly anemic and that i need to see a hematologist, becasue i had NO iron at all in my body and my blood levels were low! ( i dont kow why he didnt have me go straight to the er) So a few days later i saw the hematologist who said i needed blood transfusions, and iron infusions...becasue the iron pills were not working. i had my first iron infusion that day, and got scheduled for the blood a few days later after getting more bloodwork! In the mean time i was still in horrible rectal pain....finally got an appointment qith the new surgeon( and i wish i went to my other surgeon) He said i needed surgery.....he said a hemroidectomy, a lateral anal sphincterotomy and something else! he said it would improve my quality of life. The surgery was going to be scheduled for january, but when the secretary called to schedule it she could hear the pain i was in so once again i had an emergency surgery. ( and i wish i looked more into what was being done) My gi doc called in the mean time and said that once i am healed from the surgery he wanted me to get the pillcam endoscopy done! and that he thinks that i have severe IBS from getting my gallbladder removed in 98. The surgery was a night mare, and i have to say that i am not having the sever rectal spasms everyday, but my poor rectum is still so swollen and i am still having some bleeding with BM. I have still been seeing the hematologist and a few weeks ago finally finished 8-10 iv iron infusions.....she also said that my b12 was borderline and she had not checked my folic acid.....i just had bloodwork done a few days ago, and i will call tomorrow for the results, i was finally being checked for the folic acid and she was further looking into my b12. I also fially had the pillcam endoscopy done yesterday, and i am waiting on the results of that! I apologize again for the long post and i know that there is so much that i left out becasue i was trying to just give the main details in the hopes that someone will read this and tell me what they think!! I am so frustrated with everything going on and the docs ot knowing what it is, all the research i have done points to crohns, but im not a doctors! I am not going to settle for a diagnosis of severe ibs.....my bodys not absorbing nutrients and vitamins and i just want to know what is wrog wioth me so i can get proper treatment and try to live a normal life! The surgery i just had, i wish i never had, but i will leave that for abother post! thank you so much for reading this and i hope that someone out there can help me out and talk to me cuz i feel so alone! Again thank you!!!!:sign0085:
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