Hello,
I did this backwards and posted in the IBD Crohns general with a sorta question yesterday, but, didn't post here so I am bouncing around. But, here is my summarized version of my story and letting you all know I am here...
I was 9. I had symptoms since Kindergarten and finally I had a colonoscopy at 9 and that was it- Crohns. My Dad had been diagnosed with Crohns when he was 17 so my PCP at the time ended up apologizing to my Mom that I had not been diagnosed sooner as they "probably should have done the colonoscopy when I first started having symptoms." When my Dad got the news he cried- it was the first time and one of only two times I have ever seen my Dad cry.
I was 16. From 9-16 I was fairly stable. I took sulfasalzine and had mild Crohns. Then when I was 15 I started losing weight. My PCP at the time thought I had an eating disorder. I had no idea what was happening as I just started losing weight. At an annual check up with my GI doc. she took one look at me and said "why didn't you call me sooner?" I don't know why I or my parent's didn't think of it- denial I assume.
I was 17 and Remicade has first entered the market. After the scary weight loss at 15 my doc. had switched me to a brief course of Prednisone and we tried other meds. such as 6mp, asacol etc. and I kept getting sicker so I started Remicade. Remicade was awesome.I felt great, except when it wore off...back then it was so new and there wasn't a lot of information out about it. Eventually the duration between infusion and sick got shorter and shorter until one day I had an infusion and I had Anaphylaxis. I just stopped breathing, my Mom was with me she alerted nurses and they got me back to stable. Between the reaction and the fact I was getting sicker we stopped Remicade.
I was 18. I had just started college. I was on Methotrexate. I self-injected in my freshman dorm room. I kept getting sicker. I had a massive GI bleed Spring Semester and had to take a week of medical leave. I returned and could not get up the four flights of stairs to my dorm room. I would walk up two then sit on the landing waiting for my energy to return. I refused to give up on school.
I was 19. It was my sophomore year. I kept getting sicker. My doctor began to really talk about surgery, I just "want to graduate first." By winter break I was so thin and kept having GI bleeds. My doctor placed an NG feeding tube right after Christmas. I went back to school rocking that thing. I started to gain some weight, I started to feel better.
I was 20. I was on Thalidomide. I thought it would be a great idea to mess with the automated monthly survey about if I was pregnant or not and pressed 3 for "don't know." It was not as funny as I thought it was. Took me a bit to get it all figured out. Thalidomide was a weird experience. It did not work.
I was 22. I finally graduated- 4-5 medical leaves, NG feeding tubes, and burning through ALL crohns meds. available I graduated. Through fistulas, extreme weight loss, bleeds, liquid diets, and pain I finished what I had begun when I entered school. As a graduation gift I started the new latest and greatest miracle drug- Humira.
I was 23. Humira failed me. There was nothing else but Protocolectomy.
I was 24. I had my large intestine and rectum removed and was outfitted with my brand new stoma. I had active fistula when they did surgery. I got a post-operative infection. It channeled into vaginal wall. I had more surgery and procedure to take care of infection. I ended up with a wound vac. One year to the date of my surgery I was cleared surgically and sent out to figure out what my life would look like.
I was 25. For the first time in my life I was eating tacos, Chinese food, cheeseburger, salads...I finally had a life where Crohn's was NOT a daily consideration. I thrived. I got a master's degree. I visited friends in other states not worried about long drives in the car. I lived my life fully with the knowledge that most of what I did on a daily basis I could never have done prior to the protocoletomy.
I was 31. I went out to dinner with my partner. We had Chinese food. At 3am I woke up and knew- I was in serious trouble. By 10am I was in agony and unable to move. By noon I was vomitting. By 2 I was in the ER and admitted with an NG tube- obstruction.
I was 32. I started Cimzia. I had a CT scan. I had a Crohns flare.
I was 33. Cimzia side effects were not worth it. I was struggling to figure out what this whole obstruction meant and what my life was going to develop into. I started Entyvio.
I am 34. On Entyvio I started having symptoms, my pain increased until it was everyday, I had episodes of severe vomiting, my quality of life declined. Entyvio failed me. I became prednsione dependent again. My small town doctor sent me back to the major teaching hospital and this month I had an illeoscopy and MRE and switched doctors- the small town cuts back on travel time but the lack of resources in rural healthcare are not so helpful for Crohns. My doctor found during the illeoscopy that I had ulcerations, fibrosis, inflammation etc. He had to open up stenosis and got about 10 cm in. The MRE was not much better...the MRE showed fistula, a small abscess, severe inflammation and I was upgraded to Severe Crohns. I start Stelera on March 13th.
More than likely I am heading towards a resection. I am mad, sad, grieving, and scared. I am fairly attached to my small intestine and would rather it stay intact. I hate living in pain. I HATE that my diet now consists of carbs. and only carbs. I cry a lot and I am mad a lot. I hate those years of remission for making me know life without being sick and I am also so grateful for them. I am scared if I have surgery I will end up with a post-op infection. I am scared that Stelera won't work. I am pissed that my partner has to go through this- he has not known me sick and I would much prefer that he never had to. But mostly, I am prepared. I am prepared for the worst and hopeful for the best. I am hanging on to the fact that pain does end and that everything happens for some reason even if I don't like it. I am grateful to have found this forum and I am grateful for my small town doc. sending me to the teaching hospital again. I am grateful for the love I do have from my partner and family and I am grateful that this new doctor has been my Dad's doc. for over 20 years so I have a personal reference. I am grateful that I have a Dad who gets it and I am grateful that I am stronger than this ********.
So that long rambly thing is the summary of my story and journey from diagnosis to severe Crohn's to remission and now back to severe Crohns. Thanks for being here.
-Jenny
(current meds. Prednisone. PRN: opiates, medical marijuana, zofran...starting Stelera this month)
I did this backwards and posted in the IBD Crohns general with a sorta question yesterday, but, didn't post here so I am bouncing around. But, here is my summarized version of my story and letting you all know I am here...
I was 9. I had symptoms since Kindergarten and finally I had a colonoscopy at 9 and that was it- Crohns. My Dad had been diagnosed with Crohns when he was 17 so my PCP at the time ended up apologizing to my Mom that I had not been diagnosed sooner as they "probably should have done the colonoscopy when I first started having symptoms." When my Dad got the news he cried- it was the first time and one of only two times I have ever seen my Dad cry.
I was 16. From 9-16 I was fairly stable. I took sulfasalzine and had mild Crohns. Then when I was 15 I started losing weight. My PCP at the time thought I had an eating disorder. I had no idea what was happening as I just started losing weight. At an annual check up with my GI doc. she took one look at me and said "why didn't you call me sooner?" I don't know why I or my parent's didn't think of it- denial I assume.
I was 17 and Remicade has first entered the market. After the scary weight loss at 15 my doc. had switched me to a brief course of Prednisone and we tried other meds. such as 6mp, asacol etc. and I kept getting sicker so I started Remicade. Remicade was awesome.I felt great, except when it wore off...back then it was so new and there wasn't a lot of information out about it. Eventually the duration between infusion and sick got shorter and shorter until one day I had an infusion and I had Anaphylaxis. I just stopped breathing, my Mom was with me she alerted nurses and they got me back to stable. Between the reaction and the fact I was getting sicker we stopped Remicade.
I was 18. I had just started college. I was on Methotrexate. I self-injected in my freshman dorm room. I kept getting sicker. I had a massive GI bleed Spring Semester and had to take a week of medical leave. I returned and could not get up the four flights of stairs to my dorm room. I would walk up two then sit on the landing waiting for my energy to return. I refused to give up on school.
I was 19. It was my sophomore year. I kept getting sicker. My doctor began to really talk about surgery, I just "want to graduate first." By winter break I was so thin and kept having GI bleeds. My doctor placed an NG feeding tube right after Christmas. I went back to school rocking that thing. I started to gain some weight, I started to feel better.
I was 20. I was on Thalidomide. I thought it would be a great idea to mess with the automated monthly survey about if I was pregnant or not and pressed 3 for "don't know." It was not as funny as I thought it was. Took me a bit to get it all figured out. Thalidomide was a weird experience. It did not work.
I was 22. I finally graduated- 4-5 medical leaves, NG feeding tubes, and burning through ALL crohns meds. available I graduated. Through fistulas, extreme weight loss, bleeds, liquid diets, and pain I finished what I had begun when I entered school. As a graduation gift I started the new latest and greatest miracle drug- Humira.
I was 23. Humira failed me. There was nothing else but Protocolectomy.
I was 24. I had my large intestine and rectum removed and was outfitted with my brand new stoma. I had active fistula when they did surgery. I got a post-operative infection. It channeled into vaginal wall. I had more surgery and procedure to take care of infection. I ended up with a wound vac. One year to the date of my surgery I was cleared surgically and sent out to figure out what my life would look like.
I was 25. For the first time in my life I was eating tacos, Chinese food, cheeseburger, salads...I finally had a life where Crohn's was NOT a daily consideration. I thrived. I got a master's degree. I visited friends in other states not worried about long drives in the car. I lived my life fully with the knowledge that most of what I did on a daily basis I could never have done prior to the protocoletomy.
I was 31. I went out to dinner with my partner. We had Chinese food. At 3am I woke up and knew- I was in serious trouble. By 10am I was in agony and unable to move. By noon I was vomitting. By 2 I was in the ER and admitted with an NG tube- obstruction.
I was 32. I started Cimzia. I had a CT scan. I had a Crohns flare.
I was 33. Cimzia side effects were not worth it. I was struggling to figure out what this whole obstruction meant and what my life was going to develop into. I started Entyvio.
I am 34. On Entyvio I started having symptoms, my pain increased until it was everyday, I had episodes of severe vomiting, my quality of life declined. Entyvio failed me. I became prednsione dependent again. My small town doctor sent me back to the major teaching hospital and this month I had an illeoscopy and MRE and switched doctors- the small town cuts back on travel time but the lack of resources in rural healthcare are not so helpful for Crohns. My doctor found during the illeoscopy that I had ulcerations, fibrosis, inflammation etc. He had to open up stenosis and got about 10 cm in. The MRE was not much better...the MRE showed fistula, a small abscess, severe inflammation and I was upgraded to Severe Crohns. I start Stelera on March 13th.
More than likely I am heading towards a resection. I am mad, sad, grieving, and scared. I am fairly attached to my small intestine and would rather it stay intact. I hate living in pain. I HATE that my diet now consists of carbs. and only carbs. I cry a lot and I am mad a lot. I hate those years of remission for making me know life without being sick and I am also so grateful for them. I am scared if I have surgery I will end up with a post-op infection. I am scared that Stelera won't work. I am pissed that my partner has to go through this- he has not known me sick and I would much prefer that he never had to. But mostly, I am prepared. I am prepared for the worst and hopeful for the best. I am hanging on to the fact that pain does end and that everything happens for some reason even if I don't like it. I am grateful to have found this forum and I am grateful for my small town doc. sending me to the teaching hospital again. I am grateful for the love I do have from my partner and family and I am grateful that this new doctor has been my Dad's doc. for over 20 years so I have a personal reference. I am grateful that I have a Dad who gets it and I am grateful that I am stronger than this ********.
So that long rambly thing is the summary of my story and journey from diagnosis to severe Crohn's to remission and now back to severe Crohns. Thanks for being here.
-Jenny
(current meds. Prednisone. PRN: opiates, medical marijuana, zofran...starting Stelera this month)
