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03-13-2013, 10:28 PM   #1
Starlight
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Long time no post!

Its been sooo long since I have posted here! I've just been so busy and kept putting off and off and next thing I know its been over a year, almost 2 years since I posted!

Just a brief "history" since most people probably don't remember me. I was diagnosed with crohns when I was 11 years old. When I switched to a adult doctor, he changed the diagnoses to UC instead of crohns in 2006. Till this day im still really not to convinced its UC. I've just had to many symptoms that go more towards crohns like mouth ulcers, fissures, fistulas, ulcers in my esophagus, when he first scoped me, I had been on different kinds of meds and most everything localized out to my large instestine, so thats why he changed it, but either way the treatment is mostly the same.

At time he scoped me,(in 2006) I was bleeding heavily, living with mouth ulcers (literally would have 20+ ulcers at a time, 10 or less was considered relief, made it next to impossible to eat) My large interstine, mostly the lower parts, were in pretty ruff shape. The next day, after starting having severe cramps, I went to the ER, and had more blood test, and a CT scan. I was anemic, almost needed a blood transfusion. I was told if my levels was a point lower I would be getting a transfusion, but luckily I didnt have to. I was admitted for the night and started remicade that night. Within a few days the bleeding stopped and my ulcers started going away. I stayed on the normal dosage for a few months, but after still fighting with mouth ulcers a lot he put me on the double dose 10mg/kg every 8 weeks which I have been on since. Cant believe I've already have been on remicade for 7 years!!

After a few years, I started to really hurt when I went to the bathroom and even after I would spasm and have bad urgency type pain for hours after. Every night. I was fine during the day, but it was after I had a BM that it did this, at first it wasn't every time, but at the end when I finally said something, it was every night. Pain would be so bad at points, i'd lay in bed with my teeth chattering. it was I tend to hide things and just suck it up so I didnt say anything. In 2010(after this had been going on for a little over a year) I was scoped again figuring the remicade must not be working to well anymore, and he discovered a fissure. I was then sent to a colon/rectal specialist surgeon who did botox to treat fissures. I went to see her, and after exam, she couldnt really find a significant fissure to really explain why I was hurting so much, I dont think she really believed me at first but she said she would go ahead with the botox injections. So while I was in surgery for that (they sedated than GOD) she discovered along with the fissure, a fistula and hemmorhoids. So she did the botox, repaired the fistula and she said the botox should help the hemmorhoids as well. Well I got half relief for about 3 months. About how long she said the botox would last. The Botox is meant to relax the muscles around the area long enough for the fissure to heal. It didnt heal.

So once again I just sucked it up because I was pretty discouraged at this point. I thought for sure this would work and I would finally not hurt every night and it didnt fix it. Another thing I was mad at and I guess just having a pity party over was why a fistula? So many people are put on remicade to help with fistulas because remicade tends to work great at healing them and thats the one thing it apparently didnt help with me. I had been on remicade for 4 years at that point, so obviously it didnt help it.

So im still fighting with this crap. I've once again just been sucking it up, I sit on a heating pad every night because it helps with the pain. I take tylonal fairly often and only when Im desperate I take a loratab or use one of my lidocaine rectal creams. I usually have a BM at night, never during day( thank God since it hurts so much) Some nights are worse than others, usually sitting on a heating pad will do fine and I can get away with just tylonal, sometimes not even having to take tylonal, but nights when it happens late and im trying to get to sleep because I have work the next day, I'll resort to my loratab or the lidocaine cream. I didn't use those often because im funny about running out of things. Im wierd like that. I've gotten to the point where before it even gets bad, I know the feeling (its hard to describe) and know whether its going to be a particularly bad night, or not to bad and i'll sometimes take tylonal before I even go to bathroom in attempt to prevent. Sometimes it worked, sometimes it didnt.

Anyway, I finally called the doctor yesterday. I was prepared to just go back to the doctor that did the surgery and see what else she could do. This is not the same Doctor as who first did scope that discovered the fissure, I had to switch doctors in 2011 thaks to insurance reasons and remicade. (of course the one meds that has pretty much given me back my life is one of the most expensive, and being on a double dose, without insurance my remicade is average $17000 every 8 weeks. Insane huh?) Thank God for insurance!

So now he had put me on the things called rectal rockets for 4 nights in a row. I'll be doing my 2nd night tonight. Soon ugh. Then after Im finished with those, i stary hydrocortisone suppositories 2 times a day for 14 days. Fun fun. If this doesn't work, he will send me to another surgeon thats closer (the one who did the Botox is 2+ hrs away from where I live, so long drive) that would surgically repair it I guess. Hopefully this will work and I can avoid that but Im honestly not holding my breath. It may work if it is the fissure causing the pain, but what if the fistula came back? Dont know if this will help that. Guess I'll find out! He said I'll be due for a scope this July but he will do sooner if he has to, but prep would be bad with a fissure. Honestly I didnt find it any worse than usual my last one in 2010 and I had it then( didn't know at the time) But will see, Ive never had a scope done with this doctor yet.

Anyone else done this treatment for fissures? If so, how did it work for you? They arnt to fun as they are much bigger than the average suppository. Last night was my first time ever doing one, I was already hurting and when I first put it in, I wasnt to sure if I could do it, it hurt soo bad and was sooo uncomfortable. It thought for sure I would be getting no sleep for next 4 nights. But thankfully they added lidocaine in them and they melt fast so soon I barely even felt it! So crossing fingers this works! And if it does, cross extra hard to doesn't return!

Kudos to anyone who read through all of this. This was much longer than I thought it would be! lol I tend to ramble. I'll try to be more active than I was!

Last edited by Starlight; 03-21-2013 at 10:52 PM.
03-18-2013, 12:45 AM   #2
Jennifer
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Hi Starlight and welcome back! I've never had a fistula or fissure so never had those treatments before but hopefully moving your thread here will help you get some more responses.

Fistulas are more common in Crohn's disease than Ulcerative Colitis. http://ibdcrohns.about.com/cs/relate.../a/fistula.htm Also according to the forum wiki, fissures do not happen with Ulcerative Colitis but they do with Crohn's. http://www.crohnsforum.com/wiki/Croh...rative-Colitis Your suspicion of being misdiagnosed may be correct. If possible you could get another opinion from a different GI.

Also if you liked that surgeon you saw who was 2 hours away is it possible for someone to give you a ride? My GI and surgeon were 4 hours away from me and it was worth the trip.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-21-2013, 10:02 PM   #3
Starlight
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Thanks for moving the post! I noticed after I posted I should have put it it's section, but I wasn't sure how to move it.

Looking back on my old medical records we copied, from she I was first diagnosed I see it read diagnoses as crohns colitis. It stayed this way like I said till 2006 when I switched doctors who by then, it had localized out and he changed it to UC. This is not the GI I'm currently with since I had to switch. My current GI has never scoped me yet. That will probably come in July unless he decides he wants to do it sooner.

Thanks for the links!! I'll defiantly look over them. It's not because I need a ride to the surgeon I went to that lives 2 hrs away, my mom could drive me, it was mostly since she was the closest doctor thy did Botox treatments so that's why they sent me to her. My doctor said if these suppositories doesn't work, that he will refer me to a doctor to repair it surgically that is only an hour away from where I live approx.

And as of right now, that looks like what might have to happen. The rectal bullets seemed to help a little,it didn't hurt as much to go and not bad of pain afterwards, now I've been on the hydrocortisosone suppositories twice a day for a week now and the past couple of days havnt been to good. Not the worse I've had, but I started bleeding yesterday. This has happened off and on in the past from it, and it always stops after a few days, but it obviously mean it isnt helping that much. I go for remicade April 9th( was supposed to be the 2nd but my doctor won't be in that day apparently) and I have an appointment to see him that day as well, so ill see what he says. I still have another week of these twice a day suppositories so I guess will see, but I don't take it as a good sign that It started bleeding after I've been doing these, including the rectal bullets for about 11 days now. I would think it should have somewhat improve?

I have another refill on the rectal bullets( I forgot to mention when first started these things, I was joking to my mom how long till take off after inserted? Lol!) so I'll probably do another 4 days of those fun things after I finish out the hydrocortisosone suppositories.

These fissures and fistulas are a pain in the butt! Pun intended.=)
03-21-2013, 10:59 PM   #4
Jennifer
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It sounds like the treatment helped somewhat but clearly not enough if the bleeding has returned. Hopefully the Remicade will help. Its often used to help treat fistulas. Keep us posted on how you're doing.
03-21-2013, 11:53 PM   #5
Starlight
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Unfortunately I doubt the remicade will help. I've been on it for 7 years, and I was diagnosed with the fissure and fistula after had been on it for 4 years at that time. So they started while I was already on remicade,not before.=( it it hasn't helped yet, I doubt it I'll suddenly change.
03-22-2013, 12:15 AM   #6
Jennifer
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Ah right, sorry. Maybe you could talk to your GI about trying Humira or possibly Cimzia (or anything else really).
03-23-2013, 10:12 PM   #7
Starlight
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I'm gonna see what my doctor says when I see him on the 9th. I'd really be hesitant to stop remicade if this can be fixed some other way with not having to switch. Remicade has helped me with everything else so much, I'd rather stick with it until I can't anymore. Before it I was living with constant mouth ulcers and was basically bleeding out slowly, and remicade helped that within just a couple of days, and since i started ive had no significant bleeding( other than the occasional couple of days from the fissure, before it wasnt the fissure causing it) once a while I'll still get a bout with ulcers, but no where near the amount I got before starting. It gave me my life back! And especially since remicade isn't something you can restart again after stopping, I'd rather try out other treatment options before resorting to switching.

I'll keep yall updated!
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