Crohn's Disease Forum » Your Story » Backwards...Crohn's was all I knew, now I am back

03-03-2018, 07:41 AM   #1
Join Date: Mar 2018
Backwards...Crohn's was all I knew, now I am back


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 bullshit.

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.

(current meds. Prednisone. PRN: opiates, medical marijuana, zofran...starting Stelera this month)
03-03-2018, 09:42 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome, Jenny. I am sorry for all you have been through. I am glad you have your father's doctor. I hope the stelara works for you. You will always have support here. Come anytime. Keep us posted.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-03-2018, 07:46 PM   #3
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Trysha's Avatar
Join Date: Aug 2009

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Hello Jenny
That is quite a very sad that all this has been with you throughout your young life.
It is good that you are with a good group of doctors and that your father is cared for by the same group.
Hopefully the Stelara will work well for you and that you will have a happier time of it.
03-03-2018, 08:21 PM   #4
my little penguin
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Join Date: Apr 2012

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Big hugs
My Ds was dx at 7
He is only 14 now
But started Stelara in August of last year .
He just had a check up scope two weeks ago
Visually clean and biopsy showed mucosal healing percgi

Stelara does work for some
But it can take every bit of 6 months to work fully .
A bridge med is typically needed .
DS - -Crohn's -Stelara -mtx
03-03-2018, 09:50 PM   #5
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Maya142's Avatar
Wow, that is quite a story! I will show it to my daughter - she is in college and struggling. I want her to see how you struggled and made it through.

She spent the last few months of her senior year of high school with a feeding tube in (NJ not NG). She now has a permanent J tube in her belly.

Fingers and toes crossed that Stelara is your miracle drug . Hang in there and know that we will be crossing our fingers for you!!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18

Crohn's Disease Forum » Your Story » Backwards...Crohn's was all I knew, now I am back
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