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Crohn's Disease
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Posted 1/1/2011 11:18 AM (GMT 0)
I'm not usually one for doing this, but this has been a very supportive site, so here it goes. Bare with me....

I was diagnosed with Crohn's while in the service, back in 1993. I had general ups and downs before that. They thought it was my appendix, but discovered Crohn's. I did pretty well for a few years on Pentasa, then flared again. Hospital, Pentasa, few years of doing OK. Flared again, Remicade. Few years OK. Flared again, more Remicade.

I did really well on Remicade for about 8 years. One day woke up feeling "strange". Limbs felt heavy, had trouble walking. By that evening I was in an ambulance and into ER. Discovered I had Guillian-Barre Syndrome. It was narrowed down that it was caused by the Remicade. A very rare side affect. I think I am number 14 in the world to have Guillian-Barre caused by Remicade, at least according to my GI. (my 15 minutes of fame?). Anyway, went completely paralyzed from the neck down, luckily didn't need to go on breathing support. Spent a month in the hospital, 4 days in acute care, the rest in a specialized rehab unit where they taught me to walk and function again. A real fun ride! Great people there, though. Finally recovered from all that, and the months of out patient therapy.

GI says "no more Remicade, too risky". He feels that re-introducing Remicade might trigger the Guillian-Barre again.

So, it's been a full year without Remicade. This fall I really started to feel the flare coming on. I had rapid onset of high fevers reoccurring ever few days, bloody stool, all the good stuff. GI put me on Flagyl and upped my 6mp. Trouble with me and 6mp is that when I start getting above 50mg/day I start getting really fatigued. We are splitting the difference and doing 75mg/day for 3 days a week, and 50mg/day for the other 4 days a week.

Trouble is that it doesn't seem to be working. The Flagyl has stopped the fevers, and I'm thankful for that, they got really scary a few times. I'm really starting to flare now, lots of strong stricture pain. Not a lot of blood, but pretty regular small amounts ongoing for a few months now. It's 3am Pacific Time, and I've been up since about 7am yesterday. I've got one Excedrin PM in me to help me sleep and just had to pop one Norco to knock the gut pain down enough to sleep, just waiting for it to kick in.

I've got an appointment on Monday afternoon to see my GI, and I think we are going to have to try something different. The pain is getting worse, and the increased 6mp doesn't seem to be doing much. GI says Humira is the next step, and that 'should' be OK with the Guillian-Barre, we hope.

I feel like utter and total crap, like the disease is winning again. After spending a month in the hospital, I'm not looking forward to any more time there. I'm in pain, I'm tired and I'm getting down right cranky about all this. As much as I didn't enjoy the whole Guillian-Barre experience, I'm really missing my Remicade. It worked so well!

Well, at least it's never boring!

Thanks for letting me vent.
Posted 1/1/2011 11:53 AM (GMT 0)
Wow! Your Crohn's has NOT been good to you. I'm sorry to read how rough it has been and is for you. I'm glad you found us and were able to vent some of your frustration w/us. (((hugs))) to help you thru this and hope and prayer that you find some relief and a new med that works for you.
Posted 1/1/2011 3:03 PM (GMT 0)
(((HUGS))) So sorry you have had such a rough time. Hoping and praying that the Humira does the trick for you and you are feeling better soon. Hugs!
Posted 1/1/2011 4:52 PM (GMT 0)
Wow! I really feel for you. There are a lot of aspects of your story I relate to. In many way I may be at the start of your story or in-between the lines. I am a military wife, in the middle of an awful flare, my husband is deploying in 3 days and I have 3 kids, and a full time job. I START Remivade in about a week. I have tried everything else -natural,diet, meditation,predinsone, accupuncture,etc... It has never been under control. I have a new wonderful specialist that gives me hope that Remicade will be my answer. I too feel like complete CRAP! No pund intended (ok-pund intended) and very alone in this becuase I have to be the "strong military wife/mom who can handle everything. I am truthfully sacred out of my mind. The last time he deployed I was in the hospital for 14 days and all hell broke loose. I have strong faith in God and I know He is in control but the fear still creeps in on me. I don't feel like being with my kids because I am grouchy from being in pain for so long. I don't want them to see me this way. My friend tells me this is the time to teach my kids the difference between "intent" and laziness. "Mommy doesn't intenet to lay in bed all day sick"-"Mommy would give anything to go outside and paly with you"-" Mommy didn't intent to miss your play". It is hard because I am a 100 miles an hour type of person when I am well and then a flare hits a BOOM I am stuck to my house. Luckily I have an amazing job for a non-profit that I can do most of my work from home. But my public-speaking is on hold and my social life is at a dead stop. After a month of being sick, people start to forget about you. The phonestops ringing, the help stops coming. I am down today. With that said, I do trust God, I do count my blessings that today is another day that I am breathing, loving, living, even in pain- there is joy.
Posted 1/1/2011 4:55 PM (GMT 0)
ok -obviously I need speel check!! :-)
Posted 1/1/2011 7:57 PM (GMT 0)
Thanks, I needed that, both the venting and the supportive and caring words.

I'm feeling much better today, probably part the Norco, and part getting some sleep.

God and Faith play a big part in my dealings with this disease, I'm usually pretty good about accepting whatever comes my way, but occasionally I run out of strength and the disease wins. I always feel a bit weak when that happens, but I've been learning to cut myself some slack.

Thanks!
Posted 1/1/2011 8:03 PM (GMT 0)
Lady PooPoo,

I can understand a bit of your predicament, being in the service (US Coast Guard) at the time when I was diagnosed was really difficult. I was single at the time, so I had no support from family, and little support from my unit. I was discharged about 6 months after diagnosis due to being "unfit for service". Not a high point of my life, but it did get me home and back with family. I can't understand how hard it must be to have your husband deployed while you are going through this. I did have one guy on my ship who's wife was very sick while we were out underway and we could all see how hard it was on him. I hope your husband gets lots of support while he is away. Double difficult to have to deal with children depending on you. I've been home with my son over the Christmas break, and have had to just stay in bed a few days. He's been really good about hanging out with me and just watching cartoons. Keep the faith, and I'll be praying for you!

I really hope and pray the Remicade works for you as well as it did for me, (well, except the Guillian-Barre Syndrome part, you don't want that).
Remicade was my wonder drug, I enjoyed many years of symptom free living while on it. I could go long periods of time where I could even forget I had Crohn's.
Posted 1/1/2011 8:12 PM (GMT 0)
Good LORD dude, we all get that way. It really is OK to have those feelings.  You should most certainly cut yourself some slack.  It is a heavy load sometimes.  You are not alone in those feelings.
Posted 1/1/2011 8:18 PM (GMT 0)
Thanks MDF, I'm learning. My wife has rheumatoid arthritis, and when we got married I figured I'd be the strong one looking after her. Turns out it's been the opposite. She's spent a lot of time looking after me, and visiting me in the hospital.

With the Guillian Barre, I learned a lot. Ending up paralyzed for a month taught me that I really needed to let go and let people help me. I really feel that it was a pretty straightforward message from God telling me to get a clue and learn to let others help me out. Probably one of the best things that came out of that whole experience.
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