The biggest abscess the Dr ever saw & late Remicade thoughts

[scuffy]

Hi all,

I've been a lurker for years but usually find the info I need which I have greatly appreciated. This time I'm in over my head, or had it up to my butt, or something! Needing advice, support, whatever I can get.

I'm 36 and have had Crohns since I was about 25. Nothing is ever normal or easy about my body. It took a long time to diagnose because one symptom I've never had is weight loss. Quite the opposite, I'm overweight and no amount of diet or exercise helped. I have a very high pain tolerance but once I reach it, its basically out of control. I also have a very high drug tolerance and low doses of anything are like sugar pills. My GI doctor is very well respected but also very conservative. When I was 30 I got appendicitis and they also had to remove 13 inches of colon. My CD wasn't under control even though we thought it was.

Fast forward to now. We still thought my CD was under control as I'm basically asymptomatic. Or, if I have pain I can't feel it. I haven't been on CD meds in years.

So, one Sunday I woke up and went to work for some overtime. I only made it 2 hours because of fever, chills, lethargy and of all random things my "tailbone" hurt. This continued all week and add in I couldn't urinate on demand anymore. (48-60 ounces of water at work and no potty success until 5-6pm at night. This can't be good). Plus my rear started leaking mucous. A lot. I started using canasa suppositories thinking my CD was acting up. My tailbone and now right butt cheek hurt. A lot. Made it to chiropractor Friday and they said my sacroiliac joint out and bulging disc above it. Next week I was at chiro almost every day. Pain getting worse not better. Went to my doctor for potty problems and she had a fit. Apparently that same spinal area houses nerves to bladder and bowel and sciatica. Who knew? I didn't relate not peeing to my tailbone hurting. Lab work showed kidneys already having problems. So, by the next Friday I was in the ER to get MRI and hopefully a shot in the spine. Dr did MRI and read results. Said L4-5 was herniated and referred me to neurosurgeon for more help. Got vicodin which I told them didn't work for me. Ugh. He did cursory look at my back, with panties still on. Soonest I could get into referred neurosurgeon was next Thursday. At that point I had missed several days of work because I couldnt sit at my desk. My DR told me not to go back until I saw NS. Thursday finally came & dad drove me to appt. NS knew right off this wasn't just a herniated disc. He said it is herniated but very minor. He did visual exam and saw red inflamed area on right butt nearly the size of his hand and told me I had an abscess and needed to go to ER ASAP. So off we went.

The ER resulted in surgery to drain and put in a seton and a 16 day hospital stay. He told me later it was a plugged anal duct that was the size of a grapefruit! They drained 400ml from it! Truly the biggest he'd seen and he didn't know how I was even functioning when I came in. They called in a GI doctor who put me on imuran right away and Remicade once the antibiotics were stopped. They had an antibiotic specialist too as they didn't want me to get sick in hospital. That first seton hurt something fierce. It was big and protruding past my cheeks so it was impossible to get comfortable. I was also straight diarrhea so GI did a colonoscopy and said it was one of the most inflamed colons he'd seen in a while. Great, prior to surgery I had no real symptoms. He said I'm the kind of patient that needs aggressive ongoing treatment, such as Remicade, as we can't rely on my body to tell me when it is in a flare. I have since switched DRs to him. Another surgery was done a few days before I left hospital to put in smaller drain. For a couple weeks that felt better.

Out of hospital for 3 weeks almost now. Slowly improving and getting strength back but still basically bed ridden. Still in pull ups with a liner although fiber has slowed things down. I have a BM about every other day but fairly soft. Then lots of pain and runny stuff for about a day afterward. Its a vicious cycle. Plus I have no control over surgical site being held open with the seton. Ugh. Percocet was doing ok as my pain improved. If the pain is severe its not enough, not even a double dose. This past week pain increasing daily and now seeing a little red on TP from wound area.

To make this more of a mess I'm now 10 days late for my 2nd Remicade infusion because the pharmacy has been difficult every step of the way. If I'm lucky I might get it Friday. I see the surgeon tomorrow to discuss a surgery date for my next smaller seton.

I wonder if this increasing pain is due to Remicade wearing off? I'm so tired of pain. I should be getting better not worse. The pain meds aren't even phasing it now. It's like it was in the beginning, almost.

Sorry this is so long but its been a heck of a journey to get to this point. The mental anguish of all this has been almost as bad as the physical. I'm at the end of my rope and don't know what to do next. Today it was a pity party and tears but that didn't fix anything.

Any advice or encouragement appreciated.

Thanks,
Jen

 

[lgpcarter]

Oh, wow. You have certainly had a rough go. I'm glad you have posted your story. There are lots of people with lots of experience that will hopefully comment.

Yes, delay in Remicade could definitely be causing return of symptoms and pain, especially since you are just getting started with the drug.was it today you were to get it?

Laura

 

[scuffy]

Hi Laura,

Thanks for the note. Yesterday I did finally get my 2nd infusion of Remicade...only 12 days late. I really hope it kicks in soon! I also saw the surgeon and they said everything appears to be healing up just fine, no signs of infection or anything . They are going to put in a smaller seton next week. That will be my 3rd one. My current one is made out of some pretty hard or tough strings and it feels like they doubled it because there are at least 4 "tails" sticking out. They are spread apart a bit and the slightest shift or movement makes them poke, poke, poke that tender area. I've seen others say they got silk setons...that seems way softer in theory. I wonder if I have to or should ask for that. Any input is still appreciated.

Thanks

 

[lgpcarter]

I am waiting my number to come up on the waiting list (likely mid 2014) so I too can be the lucky recipient of a seton, so I don't have a lot of experience, but I always ask lots of questions. It definitely can't hurt to let them know the current one is too poky and ask about the material for the next one bit may be determined by its purpose (cutting vs non-cutting) and size. The surgeon I saw last week indicated mine would be floppy.

 

[Jennifer]

I'm sorry you're going through this scuffy and I hope you'll start feeling better soon. *HUGS* Are you able to go to pain management or are you doing that already (pain management is more likely to prescribe stronger pain meds)?

I'm going to tag some people to see if they might be able to help as I have no experience with abscesses.

Absentminded, xX_LittleMissValentine_Xx, DustyKat, PsychoJane, Pointy_ears, the more recent issue is in post #3. Thank you.

 

[DustyKat]

Hey scuffy,

Whoa, you surely been through wringer!

I'm sorry that I can't be of any help to you re the abscess and seton as I have only had experience with the intra abdominal type. Remicade is renowned for being particularly good at healing perianal disease so I hope the pharmacy gets on board and the Remicade is your wonder drug at healing things up and in doing so get rid of the pain! Good luck!

Dusty. xxx

 

[Pointy_ears]

Hi scruffy sorry to hear what you've been going through. I've had three perianal abscesses and I know what a pain in the butt they can be.

Being an NHS patient unfortunately we only get one standard type of seton and some times they can get a pointy and pokey luckily mine is quite comfy 99.9% of the time. But I have to admit that it took me months to get comfortable with it!

I'm not too sure about remicade, hopefully one of the other guys will know a little more about that. I hope you feel better soon.

 

[scuffy]

Thanks for the replies. I have learned I have a draining seton and not a cutting one as apparently it goes quite a ways up inside and above some muscles. They replaced the really pokey one with a silk one and that part is more manageable. it still hurts like mad and if I shift just right it pulls in the wound and sends me jumping out of my skin.

I am still plagued with constant pain, a deep unrelenting ache in my right cheek where the abscess was. I also feel it in my lady bits, like someone gave me a wedgie and made it sore down there. That too is constant.

Drainage is also constant and unrelenting. I am still wearing pullups with an extra liner in them day and night. Its so embarrassing. I was starting to get panicky and depressed over it all...I wasn't even sure if it was mucus, pus, or what...but there is always so much. The GI Dr. told me Friday it was good drainage, it means my abscess is healing internally. That it is granulation tissue. I've heard of granulation tissue before but thought it was external only...not this yuk draining out of me. But, knowing that did relieve some anxiety.

I also still have stool going thru the hole even though they are fairly firm. Let me tell you about pain...I'm down for the next 24 hours. Thank goodness I am only going every 2 or 3 days (but I'm not constipated ). I feel like my life revolves around BM right now.

The remicade got straightened out after a fashion. I had my 2nd dose around 4 weeks and the 3rd on schedule at 6 weeks although that was another insurance fight because they said it was too soon after last one, even though they were why last one was late. Next one set for the 8 week cycle. It does seem to help with D and stomach pain and energy. Hopefully it will help the fistula too.

I'm still off work as I still can't sit or drive. I see the surgeon tomorrow for another follow-up. I'm so done with this pain.

Thanks again for listening. Speedy healing to you all.

 

[nogutsnoglory]

I have had a few absecesses which caused a lot of damage but nothing like yours. Tagging kwalker who has had a very large and aggressive abscess.

 

[KWalker]

Thanks for the tag ngng. Unfortunately I don't have as much time to actively check the forums as of late but if I do get a tag I'll always post and help out when I can.

Ngng is right. I have a long history with abscesses and have had two rather large surgeries for them. While I haven't had surgery since 2011 now, I was left with a 7.5" incision from the abscess which is now basically a draining scar.

I opted to not have any sort of Seton just because of the reviews I've read about them and many people saying they didn't really work for them. Of course everyone is different and that was their opinion but that's the route I went.

If you haven't had surgery that long ago and your abscess was bad, don't expect the draining to stop anytime soon. Although my drainage varies, I'm still draining today which is actually just over two years because I believe it was around the middle of November that I had the surgery. For years now I've had to wear menstrual pads in my underwear because before hand the drainage would sometimes leak through my pants. Even during the occasional heavy drainage now I don't get anything through the pads. I've never used pull ups or any other method so I can't compare but I just use a no name brand from Walmart which is the longest and thickest and I have no complaints. I'm sure it's also a lot cheaper than depends, pull ups, or anything else.

I'm currently on Cipro and Flagyl for the abscess, but nothing else. I went on a diet for my crohns that really help and I actually was able to go off the medicine without having problems, but due to financial/time restrictions I had to stop the diet.

Although I've been on and off the cipro and flagyl for years now, I have now been on them continuously for probably just under a year and don't really plan on stopping anytime soon because they seem to really help me. Although I do still drain, that's the extent of my problems and I don't experience pain or any other problems so now it's just more of an annoyance.

I remember ngng being on the two medications without any luck but everyone is different and I would talk to the doctor about going on them if you're interested. I experience nausea and headaches for the first week or so which is common but I don't have any side effects now from them. I take 1000mg of each every day.

Holly can actually help to on with the Remicade but as far as I know remicade is not useful for healing abscesses. I know her doctor made her wait until the abscess was healed before going on remicade.

Hmm, I feel like I probably haven't helped much. If you have any questions don't hesitate to send me a private message if there's something you're embarrassed about (I've experienced it all with abscesses) or of course feel free to post in here and I will keep an eye on the thread.

Oh, and I'm 23 year old male. I know we're different in age but I just thought I'd reassure you that you can still have a normal life while dealing with abscesses once the pain subsides. When I was at my worst I literally couldn't move and was taken to hospital by ambulance and spent weeks in the hospital but now like I said it's nothing more than an inconvenience

 

[Rocking on]

Hello! I am new here and saw your post. I have suffered with Crohns for 16 years. I am now 46. About 8 years ago i had a terrible abscess that required surgery. My routine was to pack and unpack the wound twice a day with gauze. Wife had to help. It was easily the worst thing i had dealt with but it did heal. Any shred of dignity was lost at that time, hopefully substituted with humility.

About 15 months ago I developed another Perianal abscess. I treat at the mayo. For various reasons, they chose not to do much on this one. i did go into surgery for it and they told me to expect a seton, but when i woke up it was like they did nothing. The surgeon told me they made an incision and it would drain internally. It hasn't. The abscess formed a fistula and drains externally. This has required me to wear Walmart depends because it is constantly draining. It's an extreme annoyance, but for some reason they still dont want to operate, citing concerns with incontinence and other complications. It is not extremely painful, just highly inconvenient.

Surviving the Perianal abscess deserves a Medal of Honor. Crohns is bad enough but the abscess is just the cherry on the pain pie. Please let me know if i can share any other insight with you. I've dealt with just about every issue chronic crohns can throw my way.