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08-10-2011, 02:12 PM   #1
jesseiam2
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Here's a story...

No, not of a lovely lady, but of a guy named Jesse!

So here is the story. I first started getting sick when I was 22. I started to lose weight and had abdominal pain. I thought it was ulcers. So I went to see my PCP, who sadly wasnt available and I saw the nurse practicioner. He agreed with me. Gave me some ulcer meds and said to come back in 2 weeks. After 2 weeks and 20 more pounds lost, the same NP said to keep taking the same med and try back again in 2 weeks.

I was a bit fed up and wanted MY doc. I insisted in seeing him, especially since I had lost over 50 pounds. (now I was a bit overweight, around 230 pounds before the weight loss, so I wasn't totally unhappy!)

My doc agreed something was wrong and scheduled a coloscopy. He went in and BAM there it was. Right at the juncture of the small and large intestine. Now 13 years ago, I had never heard of Crohn's disease at that time. There were no TV commercials for it and it wasnt something that was very widely talked about. Even today its still not as well known as some diseases but it was even worse back then. (Do I sound old yet? In my day....)

I saw my GI doc and a surgeon and they both agreed, they could maybe hold back the disease with drug therapies for a month or two, but surgery would be needed. (no Remicade, Humira, or Imuran back then). I opted to get the surgery and by the time I left the hospital I was 14 inches of bowel shorter and over 100 pounds lighter. I took Prednisone and Asacol for a month or so post surgery and then....

13 years of remission!!! No drugs, the occasional issue here and there that all Crohn's patients deal with. I had 2 bouts with Gout (I had no idea how painful that was, and I thought Gout was for old folks, think Ben Franklin old).

Suddenly about 3 months ago I started feeling off. Went to my PCP, who said to go see my GI, who scheduled a colonoscopy. Didn't make it to that appointment. ER here I come! I had a blockage, and spent 5 days getting pumped full of steroids and morphine. After a lovely colonoscopy and a small bowel series (anyone else love the vanilla flavored barium?), they agreed, it was back and decided to go the drug route. Prednisone, prednisone, and more prednisone. Then Entocort with a side of Prednisone. Pain meds (Oxycodone) and nausea meds (cant remember the name) as needed. I had a short revisit to the ER due to blood in places that blood shouldnt be (if you get my drift). The GI doc decided it was time to get agressive. My Crohn's was combined with something called C-Diff (a really nasty stomach bacteria that shouldnt be there). More drugs (anitbiotics). I just had tons of tests to check to see what levels I will be placed on for the next new and exciting set of drugs, Humira and 6MP.

Now I will admit, and its evident from most of the posts in this forum, Humira and 6MP both scare the bejesus out of me. My feeling, the side effects of those cant be as bad as the long term side effects of the steroids. I have the worst steroid acne, night sweats, weight gain, and anger issues on that stuff. Cant wait to be done with them. I am one of the fortunate with really awesome insurance so the costs associated with these new drugs wont be a financial strain like they are for many folks.

Bottom line, I want what I had for the last 13 years. To be pain free (for the most part). I have a 16 year old daughter, a 14 year old son and a wife who need me back at full capacity. I need me back at full capacity. Any advice, comments, thoughts, ideas, ect? Leave em here!

Thanks to all for reading and chat again soon!

Jesse
08-10-2011, 02:29 PM   #2
jesseiam2
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Forgot to add, when the surgeon went in, the bowel had separated itself and the gastric juices started eating through my insides headed to my back (I know, yucky) and almost ate a hole through my back to the outside world. He had no idea how bad it had gotten until he got in. I still have back pain from the damage it did inside. It was quite gruesome. Was told if it had traveled the other way, vital organs could have been damaged, so I am quite lucky.
08-10-2011, 03:06 PM   #3
Jessica
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Jesse,

I'm glad you got 13 years worth of tasting the good life. I'm so sorry that it had to be that short though.

Welcome to the forum, and best wishes to getting back to remission quickly!
<3
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08-10-2011, 03:24 PM   #4
xJillx
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Hi Jesse and welcome! I am sorry your 13 year run of remission had to come to an end. How long have you now been on Humira and 6MP? Have you seen an improvement? Many have done well on both. So, let's hope this treatment plan does the trick and puts you back into remission soon and for a long, long time.
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I am still sick and so confused...
08-10-2011, 04:47 PM   #5
jesseiam2
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I am not on them yet, he is running all the pre-drug tests now to decide what dosage. Said I will get started at the beginning of September. Isn't giving samples fun?

Thanks to you both for the kind words. One of the biggest challenges with Crohn's can be the emotional aspect of it. When you feel this bad for this long, its hard not to feel down. Its something all of us have to deal with. Keeping a positive mental attitude is so important. Do not let it beat you, beat it. Even if the battle is hard.
08-10-2011, 04:53 PM   #6
muppet
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I hope you'll post your complete experience with Humira. I'm very interested in every aspect of this drug and people who have been on it awhile don't always remember the early details.
08-10-2011, 04:56 PM   #7
jesseiam2
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I will. If it helps others to know, then I will keep it updated here as the timeline changes. I go back to the GI for the results/first set on Sept 6th.
09-07-2011, 01:36 PM   #8
jesseiam2
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So I started 6MP yesterday, 100 MG, (approx 1 MG per KG) which is a lower dose than normal. My GI doc said he wanted to go low to start cause this drug scares him a little bit. (way to instill confidence huh?) I have blood work next week and then every 2 weeks after. He also reduced the Entocort from 3 pills to 2 and gone completely in 3 weeks.

I start the Humira as soon as it arrives. My insurance has a great program where I only have to pay $100 for a 90 day supply of the drug but its all via mail order pharmacy, so no going to a local drugstore for it. They are sending someone out to show me how to inject it. I have a background in emergency medicine (former EMT and Cardiac Tech) so I am sure I know what I am doing but not gonna buck the system on this one.

The GI doc went over all the possible side effects and lets just say that if they wanted to go for a scare tactic to avoid taking the drug, he could certainly deliver! He plans to take me off one of the 2 drugs after a year, assuming they both work. He also said I have plenty of scar tissue so that even if the drugs work I might still need surgery to remove it. They are sending out the Humira pens. I have read up on all the Humira and Imuran threads so if you are planning to take any of these drugs and havent read up, do so. Great info.

GI doc wants to see me in 5 weeks assuming there are no issues between now and then. Lets hope the blood work stays clean and I get no severe reactions to these lovely drugs. Once I get the Humira and start taking it I will update here.

BTW - so far no real side effects from the 6MP (had a small headache but couldnt swear that was drug related) I feel a little weird, but nothing I can specifically put my finger on and no swearing it was drug related either. To try to explain weird, my muscles dont ache, I am just more aware of them existing, cant call it pain. Makes sense? My head isnt swimming like on pain meds, but its not completely clear either. Could be allergies though, tis the season. My fatigue is actually better today than it was prior to the med. Was waiting for my pee to change color as per the reading material. Hoping for a cool shade of blue or even grey! No such luck, normal pee.

Anywho, updates as they become available!
09-07-2011, 04:42 PM   #9
kjw1112
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i'm very interested to see how this goes. i'm glad you're keeping everyone updated
09-07-2011, 05:40 PM   #10
Natalie38
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Hi,

I am on Humera, but I was taking it for Anklyosing Spandalitus. I have been on it for 3 years, (also was on Enbrel). I decided to take a break from it because i was lasting longer and longer between injections. Truly, the less of that I have to inject in my body , the better. Some of the possible long term side effects scare me very much. Anyway, took a break from the Humera for 2 months, the KABAM, I am sick.. so sick..lost tons of weight, got to know staff in hospital(haha) colonoscopy, cat scan, 5 weeks throwing up and diareah. I was diagnosed with CD. [B]All because i stopped my injections.
Now, afetr a bout of prednisone, I am taking the injections again.
What did I learn from this? I may have had chrones for awhile, but the Humera was coping with the symptoms. I had no idea.

hmm.....
09-13-2011, 08:53 AM   #11
jesseiam2
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So I have been on 6MP for a week now, still waiting on the Humira to come in the mail. Let me preface this by saying that I havent really been eating, this has been a rough flare and eating has been very painful. The first couple of days on 6MP I really didnt notice any difference at all. Saturday rolled around and I felt kinda rough, but nothing special. But Sunday was the worst day I have had in a VERY long time. It wasnt Crohn's bad, it was side effects bad. I slept all night Saturday, felt horrible when I woke up at about 7:30, went downstairs to my recliner and slept most of the day away. I couldnt keep my eyes open, it was like I hadnt slept in weeks. I couldnt even stand right, I took a shower before bed, but had to use a shower chair cause I couldnt stand up that long. I called out of work Monday and today. Neither day was as bad as Sunday, but they still were rough. I ate a little something last night. I chewed each bite 100 times, lol. I dont think its affecting me badly, my stomach hurts but I think its hunger pains and not Crohn's pains. Hard to tell, I have hardly eaten in a week.

I think my body is adjusting to the 6MP, I am guessing thats been the problem, I need to go get a blood test in the next day or so. I have been freezing and sweating a lot, sleepy beyond normal, and weak. Anywho, keep you all posted as things change, hopefully the Humira shows up soon so I can get a whole new set of side effects!
09-13-2011, 09:27 AM   #12
muppet
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While you wait for Humira are you on anything else but 6MP? 6MP by itself won't induce a remission for you, but it will get up to a maintenance level and help retain a remission once you're in one.
09-13-2011, 11:59 AM   #13
jesseiam2
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Entocort, thats it.
09-13-2011, 12:03 PM   #14
muppet
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That sounds pretty dubious to me... Why aren't you on some sort of ASA while you wait for the Humira? What's the hold up on the Humira, again?
09-13-2011, 12:59 PM   #15
jesseiam2
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It was ordered, but the way my insurance works it had to come from the mail order pharmacy. They were supposed to start at the same time. We both thought I would have it by now.
09-17-2011, 07:50 AM   #16
jesseiam2
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So an update, the last several days has been miserable. I have been running a low grade fever. I have oral thrush. I cant get enough sleep. I am freezing cold and cant quit sweating. I had my first set of blood tests back and my C-RP dropped from 140 to 51.7 (which is good) and all my other levels were normal.

The doc prescribed Fluconzole for the thrush. I demanded he switch me from Entocort back to the Prednisone (even though I hate Pred, it works) so he gave me 40 mg/day. He increased the pain med cause it wasnt working anymore. The Humira arrives next week so I will start that Friday so I have the weekend to recover from any effects it gives me. I havent eaten hardly anything in over a week but I am gonna try again today. The pred is in full effect, boy did I sweat heavy last night and I am certainly not sleepy anymore.

I have always hated the side effects of Prednisone, but 6MP blows that out of the water for me.

On a positive and personal note, I won a competition at work (was a 3 month competition) and won an iPad! WHOO HOO!!!

I hope these posts help someone and if someone has specific questions about my experiences adding these drugs I am happy to answer.
09-18-2011, 05:58 PM   #17
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its good that you added pred to your meds, it takes time for 6mp to start working.
Welcome to the forum and hopping you start feeling better soon!
09-24-2011, 07:28 AM   #18
jesseiam2
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UPDATE!

The prednisone worked wonders, as it usually does. I was able to eat again and it knocked the inflammation down. Now I cant quit sweating and am on edge a lot, but eating and less pain are more important.

So I took my first loading doses of Humira yesterday. 4 injections, right in the upper thigh. Not the most comfortable thing I have ever done. I froze a wet washcloth before hand so I could numb up the area a bit and let the drug come to room temperature, then "POP" X 4. One of the injections hurt, the rest just stung a little. The fattier the area, the less the pain. I got a slight headache shortly after, and my legs felt a bit like jelly. Next doses are in 2 weeks and its only 2 shots, so that should be better. When I woke up this morning I really didnt feel any different, which is really good because I was expecting some side effects, like tiredness (at a minimum). Its still early and who knows, anything can happen.

Unless something happens I dont see my GI for another 5 weeks. They will keep me on the 6MP for another 6 months minimum provided my body can handle it and the lab results consistently come back regular. I stay on 40MG of Pred for the next 2 weeks then we start to ween back on that.

Until next time...

jesseiam2
09-24-2011, 11:47 AM   #19
David
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I'm glad the pred is working for you. I pray the Humira is the answer you're looking for
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10-20-2011, 01:13 PM   #20
jesseiam2
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UPDATE - This has been one horrific month. Tuesday, October 4th, I was having extremely painful abdominal cramping, I hadnt eaten hardly at all over the last week, I started running a fever of 103, I was shivering uncontrollably, I was barely able to stay conscious. I was afraid I was having a severe reaction to the 6MP. I called my GI and he told me to come to his office right away. His office just so happens to be at the hospital in one of the medical buildings. As soon as I walked in, they took one look at me and put me in a wheel chair and wheeled me down to the ER and had me admitted.

After a dose of my old friend Dilaudid I was feeling happy and friendly (gotta love those narcotics, legal ones of course) but my fever was still up and they did all kinds of tests. Upper GI, X-rays, cat scans, ect. They saw lots of damage right at the junction where my previous surgery had been done and since I had only got worse over the last 5 months of medicinal intervention, surgery here I come. They removed about 6-7 inches of intestine and installed a lovely railroad track of staples on my stomach. I was back to eating the next day, which was amazing given it took almost a week before they allowed me to eat the last time (tons of changes happen in 12 years). I went home on the 13th with marching orders of no lifting, driving, walking much, using stairs much, low fiber diet, ect ect.

Saturday the 15th comes around and my back started hurting. I had gone to the bathroom but the pain was getting worse. By 3am I was in tears. Now understand, I have a very high pain threshold. I have been in pain a long time, and I have NEVER cried due to pain, until then. My god it was incredible and unbearable. Back to the ER I go. I sure wish I could get sick during the day as opposed to waking up my wife in the middle of the night. Anywho, Dilaudid my old friend was administered, and I was shocked. The first dose might as well have been water in my vein, no effect at all. I was mean as hell and in so much pain I could have done very unspeakable acts to anyone who came near me. Dose 2 - on a scale of 1 to 10, my pain went from 10 to 9.95. They went to Fentanyl, which after 3 doses of that finally got my pain to the point where I didnt want to kill someone. They x-ray tech came and got me and apparently had no clue that touching my abdomen might get her axe murdered. They thought I had an abscess at the surgery site. They inserted a giant skewer, sword, dagger, or shishkabob into my side so they could drain it. Luckily it wasnt an abscess, but I had busted a blood vessel inside somehow (could have happened going to the bathroom, turning over, or just because) and because there are open spaces in my back from previous damage, it filled them up putting untold amounts of pressure and therefore pain on me.

9pm - Tuesday October 18th, my surgeon came in, said the test results showed no infections, and the sword in my side hadnt drained almost anything since they drained it putting it in, so I was given a clean bill. He said "this might hurt a little bit" and pulled the sword from the stone that is my side. He was wrong, it didnt hurt a little bit, it hurt a lot of bit. He removed the staples and sent me back home. So here I sit, bringing you all up to date. I can go back to work Monday (thank goodness).

My surgeon was fantastic. He was the same guy who did the first one. If you are near Richmond, VA, see Dr. Timmerman. One of the best of the best. Even more fantastic was my wife. I really dont know how she does it. Between both our kids, her working for the Federal Reserve, and dealing with me, she is truly a Superwoman. Doc took me off 6MP (which is great, I really hated that drug). My next dose of Humira is tomorrow. Its the first dose after the 2 sets of loading doses. I have my follow up with the surgeon next Friday, but I cant imagine any more set backs. I feel good today, went out, got a haircut and a few other things. Once the muscles all heal and the hole in my side finishes healing, I should be good to go. My gut feels fine, I eat, and they plumbing is working. Still a little loose but to be expected.

This was long so thank you for reading, I wanted to bring you up to date for those who wanted to know. Any questions about the procedures or what happened, I am an open book, you need only ask.

Hugs and kisses to all!

Jesse
10-20-2011, 02:47 PM   #21
Terriernut
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Jesse....gobsmacked here. I'm hoping that you are on the road to recovery and 13 years of remission again after all that!!!
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10-20-2011, 03:16 PM   #22
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Wow, what an update. You've had a crazy time lately! I hope you're well on the road to remission now.
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10-23-2011, 04:44 PM   #23
jesseiam2
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Thanks all, feeling 1000% better today, not quite as tired as I have been, gets better each day! I go back to work, but then on vacation in 2 weeks on a Caribbean cruise. I have never needed a vacation as badly as I do now, and I know my wife feels the same for herself! Hopefully another 12 years of remission is in the works for me!
10-23-2011, 08:18 PM   #24
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Oh my God Jesse I am so sorry, that sounds just awful. I'm so glad you are doing alright now. Hopefully relaxing in the Caribbean will set you off on nice long remission. You've been through it all, it sounds like. Keep feeling better!
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10-23-2011, 08:19 PM   #25
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You poor thing. I'm so sorry.

*hugs* to you!
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