Sit back and get comy - its been a LONG 24 year trip

[Mandalee]

sorry this is a long story but it has been a long journey with Crohns. I have had it for 24 years of my 38 year life. and for the first time - I'm going to share the whole long excruciating tale.

I have been a member since 2012. I joined after I had surgery that year - probably while on my pain meds because I completely forgot for 3 years that I had an account :ybatty:

Picture it: It's 1991, Robin Hood: Prince of Theives and Thelma and Louise are one the big screen, Mike Tyson is all over the news for rape, The US is headed to Kuwait to lead Operation Desert Storm... and this 13 year old girl probably missed it all because she was in the bathroom.

Ok, that's not helping my long story get any shorter LOL so here it is: Diagnosed in the spring of 1991. I had a year or more of tests and misdiagnoses. I had blisters in my eyes, earlier that year (told it was Herpes) then Uclerative gastritis where nothing but my esophagus and stomach were lined with tiny uclers. I was finally diagnosed with Crohn's disease and told I my cells in my intestines were like having "Pre-cancer"... Good idea to tell that to a young teen. I was convinced I was going to get cancer and die by 35. Thank God I was wrong! I'm 38 now (crap - No i'm not! Not until next month anyway). I've had 3 surgeries & probably most types of complications at one point or another. Been on at least one drug from every class of drug they make to treat Crohn's. I have never had cancer, AND I still even have (some of) my colon!!! Whoo hoo.
I started out on sulfa-drugs in middle school - lol funny story of what happens to a kid who drinks orange juice on an empty stomach to take sulfa drugs before school. Said kid ends up in school office to tell them they need to call a janitor to the back hall bathroom because it looks like someone projectile vomited orange foam everywhere. I didn't think they needed to know it was me - but at least I gave them a heads up before class - I was a thoughtful kid :devil:

I will spare you the drugs lists and all the details of my life in bathrooms across the world - for real: Do not use rest areas in Italy - its amazing how long you can hold it when you see one of those!

I had my first 2 resections at once at age 18. (appendectomy and ileocecectomy with partial colectomy) aka: end of small intestine where my appendix was was removed as well as a section of my sigmoid colon.
After that I was not on many meds, if any at all at times, and fairly long stretches of remissions with intermittent flares. I dealt with perianal disease during that time so I had serious butt pain with fistulas and fissures and hemroids - just my intestines seemed content. :thumleft:

Age 26: I was engaged. My fiance took a contractor position in Middle East with US Goverment... start of stress and flares... went on Remicade. WONDER DRUG!!! :dusty:
That worked for about 8-10 months only though before I needed to add Imuran as well. I had a stricture form and was in immense pain after eating. The thoughts of dying before 35 really started creeping back in, especially when laying on the floor of a hotel bathroom in Germany wondering what the hospitals there were like. (didn't' go, flew home because I was scheduled for surgery the following week and wanted my family there)

Met with a new GI for a second opinion 2 days pre-op and he said I did not need to have surgery when there are drugs I haven't tried. Enter Humira.
It wasn't the night & day wonder drug I hoped but it bought me 4 years!!
but during this time, I got married, and divorced and almost lost my house to foreclose so stress was no stranger. When the stress slows, the flares start.

I had regular visits with a surgeon during this time and finally when adding other drugs to the mix wasn't working, they took me off Humira (weird thing: it was around this time my fistulas and fissures miraculously disappeared...) and scheduled me for surgery. This was April 2012. 17 years between surgeries is pretty darn good since they told me 7-10!!

Surgery went well. I stayed at my parents for a few months since my house had too many stairs. I kinda felt like a kid again. :ghug::ghug::ghug:
But one day I'm out shopping with my parents and I went to the store restroom because I started to cramp. so much discomfort. I ended up waiting for them at the front of the store leaning on a display. My temperature spike and my abdomen started to swell and my inscision started to leak clear fluid. Went to ER - surgery failed, had leaked, and caused an abscess to form. I had a drain tube inserted through my gluteus maximus into the abscess and a drain pouch strapped to my leg, admitted for a few days, put on tons of antibiotic :hallo3: and sent home.

Go back for Radiology CT to get drain removed: admitted instead. Abscess not getting smaller and so I was put on TPN. Good bye food. that sucked. I now hate jello and popsicles as that was all I was allowed for the next 3 months. July 2012 return to radiology to have drain removed - no better, admitted for surgery #2 for resection and drain removal. Success! kind of... though not really feeling great ever. Off TPN, then to thick liquids, soft foods, then resume regular diet.. back home home, back to work by Sept. 2012.

December 2012: colonoscopy follow-up - Everything OK, but then week after never ending watery diarrhea and flu-like symptoms start. Dx: C. Diff infection. Then, Feb 2013 C.diff; April 2013 C.Diff; June 2013 C.Diff , Aug, Nov., Feb. 2014 C.diff:sign0085::sign0085:
Time for new GI. Go through process to find a stool donor. I was so desperate I had embraced idea of a poop transplant! Even started a social media page to inform others of the power of poop! after reading artilcle of same title. yep. really did that. no luck. no donor passed health screen and its expensive (now companies are specializing in providing poop pills and poopsicles oo:
I somehow, by some miracle, just eventually responded to treatment!
First negative result for C.Diff August 2014. Two freaking years with a C.diff infection (went through 8 various treatments)
I must add that during this time I could not be on any Crohns' meds so the infections didn't get worse since I was already not responding to treatments.
Went in for follow-up with GI to get full lab workup and start on maintenance meds. and have routine colonscopy. Labs were great and I just started Cimzia last month. I am highly disappointed though because my Crohn's is active and I have uclers occuring at the same surgery site where sm & lg bowel meet. crappy.
keeping fingers crossed Cimzia is my next wonder drug! Happy to hear from anyone that has had positive experience with it!! please. needing happy thoughts
:Karl:

So that's me -
Mandalee

 

[24601]

Hi Mandalee! I'm sending you lots of positive make-that-Cimzia-work vibes! I don't have any experience with Cimzia myself but I wanted to say hi because I do have experience with a long journey with Crohn's. It's been 19 years for me this spring since diagnosis and one day I may even get around to posting my story! You did such a good job of condensing your experiences...I think if I ever write mine I'll drag things out so much it will be the longest post in the history of the forum but long story short dx age 17, now 36, stricturing jejunoileitis, four surgeries, pred, azathioprine (bad reaction), pentasa (useless), budesonide :ymad:, Elemental 028 :thumright:, pig whipworms, 6mp :thumbdown:, Remicade (okay but not so much), methotrexate (finally an immunomoduator I can tolerate:dusty, Humira (okay but my disease doesn't really respond to it :facepalm and now heading towards a stem cell transplant...and that's me. So :welcome: I hope Cimzia is your drug :cheers:

 

[Mandalee]

Hi 24601! thanks for replying!
Its always interesting to hear from others who deal with similar situations in life and for as long - I always see those newly diagnosed and parents with kids that have it on forums but those of us who have dealt with it for decades aren't as prevalent. I am so thankful for social media groups and forums so people have resources. I felt so alone for so many of my early years with this.
I have to ask about the pig whipworms... I have not heard of that. After my first negative test for C.Diff, I still had symptoms and a antibody blood test showed I had Strongyloid parasite infection as well. I know now that IBD patients aren't only more susceptible to these infections due to reduced immune systems but we are more sensitive to the symptoms - so many people have parasite and bacterial infections they will never know about because of the plentiful good bacteria in a normal healthy gut - we get them and they just take over.
I'd also like to hear more about stem cell transplant - I will have to search the threads for more about that. Also, the SSI treatmenta I keep seeing so much about on here is new to me
Thanks for introducing yourself! It was nice to hear from you.

 

[24601]

Yes, it's certainly a different world now for those with IBD in terms of getting access to information and and the ability to talk to others with the same disease. When I was diagnosed in 1996, my mother had been to the library to read a real medical reference book that she could actually hold in her hands and turn the pages of!!! I mean the internet existed, but with very little content and no useful forums...they were all just chat rooms with people pretending to be someone completely different from who they were. It really was a different world.

I think it would have made such a difference if I had been able to learn from and talk to others going through the same thing. Although possibly I might have been terrified at what might be ahead. That's part of the reason that I've not been that active in forums over the last 19 years (well minus the first couple before the internet really got going) because I'm worried about scaring newbies with my story. But the world is different now in terms of treatments too, and all the better for it. As my doctor says, "There has never been a better time to be diagnosed with Crohn's". So that's something nice that we can say to the newbies...you know along with "Sorry, you got this!" because let's be real this is still not a diagnosis that anyone wants.

I guess we see all these new patients on forums because that's when people most need information and advice and support but I guess some of them go into remission (not something I've ever known exactly!) and they're off doing better things! I hope that's true! I think with some of us who have had it for so long we're kind of so used to dealing with it on our own that we continue to keep to ourselves. That and not wanting to scare people! But I definitely think we have lots of useful advice and experiences to share. That's my hope anyway! Makes me feel like it wasn't all for nothing. Plus I think it can be really helpful when youare battling something for so long to have somewhere to talk to people who understand and have a sounding board for ideas about symptoms and treatments and just to kind of encourage you to keep going.

Also, yes, Crohn's parents are amazing! They do so much research and pursue every possible avenue. I have so much admiration for Crohn's parents! And appreciation for my own Crohn's mom - without whom I almost certainly would not have made it this far.

Okay, so, pig whipworms. I tried those back in late 2004/early 2005 when it was thought they might be beneficial for Crohn's patients and decrease inflammation in the gut. I know some people have deliberately infected themselves with a parasite but mine were the expensive sterile kind bought from a lab in Germany. They didn't do anything noticeable for me but I did have some really bad strictures which needed surgery so that may well have meant I couldn't notice anything good happening. Here's a paper (though I feel like there hasn't been much talk of them being a promising treatment recently) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774382/

Here's a 2014 review that obviously doesn't think much of the TSO treatment: http://www.ncbi.nlm.nih.gov/pubmed/24442917

I'm glad I tried it though!

I'm hopeful about the stem cell transplant. I know to not expect it to be a cure as we tentatively though of it 10 years or so ago when they started doing it for Crohn's. I'm in the UK so it will be an autologous transplant not like the ones they have started doing in the US with donor stem cells. I'm told that remission would be expected to last 9-10 months after treatment but we'll just start me back on meds after the transplant. I don't honestly know if I'd choose to have it with donor stem cells if I had the choice. It's riskier but the benefits stand to be greater. Crohn's disease...always with the hard choices, eh? Except I don't actually get the choice But I figure if an autologous stem cell transplant is the best insurance that my money can buy, then that's what I'll go for. Well, that's how I'm trying to view it. Tbh, it still feels like a hard choice!

Yes, the SSI treatment sounds interesting! I really don't know much about that but I keep meaning to read more. Have you thought about applying?