Just looking for support/to tell my story

[justbreathe8]

So…Im new here and this is my first post. Ill give an overview of my story:

Im happy and basically healthy for my whole life, never really had any medical problems and then...October 31 2012 I got my wisdom teeth pulled (age 28) and was put on Norco for pain. Took the norco about 4 times a day for about 2 weeks. No one ever warned me that it made you constipated (maybe I should have already known that, but I didn't) and then one day I strained too much during a BM and there was blood and extreme pain. After a little bit I went to a GI doctor who examined me and told me I had external and internal hemorrhoids, gave me some suppositories and cream and I was on my way…. then one day I had a small lump on the outside of the area which i was watching closely and it kept getting larger until one day it was about the size of a grape. This was the most pain I had been in so far and so i had an emergency visit to the colorectal surgeon who drained it, put me on cipro and flagyl and said I had a fissure…

we tried different things to heal the fissure over a few months, the pain never went away and then it turned into a fistula and June 2013 I had my first surgery for a fistulotomy. He also found a small abscess and drained that. He said the abscess was small and didn't need a seton (I was very happy about that) and I should be fine… Pain still never really went away, then comes October 31 of 2013 where I went to the ER bc the pain was so bad I couldn't stand it. Had a CT scan and an abscess was found… I was admitted to the hospital for the night with surgery to drain it scheduled for the next day. I awoke from surgery to find out he had put in a silk seton ( I was totally bummed but hoped this would solve the problem of all of the pain)… pain still wasn't gone (the pain usually comes right after a BM, which i have every morning as soon as i wake up, and stays for about 6 or 8 hours and then by the time night comes, the pain is mostly gone).

6 weeks later, pain was still there, call the surgeon to go for an appointment, and he tells me I need ANOTHER surgery because he thinks I have another abscess and fistula. Dec 10, I go to get surgery and wake up to find out I now have 2 setons. And he changed my first seton to a rubber one.

After a few days, it seemed like I have less pain then I have had in months. I finally have a little bit of hope. After this last surgery he says I might have crohns. But I can't have a colonoscopy right now because the prep/diarrhea might reinfect the fistulas. So currently I am undiagnosed as having anything. I went for a check up 2 weeks ago and he said everything looks good and it looks like the abscesses are draining well, and have to go back on january 31st to look at them again.

Im not sure that I have a question, I guess Im just looking for support. I have good days and bad days. I have days when Im like yes! Im getting better and this is going to be it! And then I have bad days where Im in pain and I think the abscesses are back or Im getting a new one and Im so depressed and I can't get out of bed. Its really hard for me because I went from being "normal" and working out all the time and partying with my friends, to some days not even being able to get out of bed. And now, even with the days when I feel fine, I can't stand up for too long, or over exert myself. Yes I know, this isn't the end of the world, and a lot of people are worse off then me, but for me, this is the worst I have felt in the 29 years I've been alive. Ill be 30 at the end of this month and wanted to have this huge celebration when I was healthy, but now I don't even care what we do do celebrate. My husband and I wanted to start trying to start a family, but that is on hold for now. Luckily my husband is AMAZING and picks up the slack for me, but some days I just feel useless. and its hard because I don't know anyone who has what I have and all of my friends know and they are all there for me, but its like no one REALLY understands because they haven't gone through it. Even when someone asks me how I am, I just smile and say ok, because no one wants to hear someone say they feel bad all the time.

I guess my question is, how do you guys get through your bad days? This is just the beginning for me, and any tips for the pain or the worry or how to cope with multiple setons would be greatly appreciated. Thanks for reading my story!

 

[afidz]

Hello, and welcome to the forum!
I am going to tag nogutsnoglory as he might be able to give you some advice on pain management and dealing with accesses and fissures, I have never had them.
Its great that your husband is so supportive, it really can make the world of a difference. All you can do is take it one day at a time. Try not to think to far ahead of your self because you can stress your self out that way.
Other than the abscesses, do you have any other symptoms of Crohn's that you have noticed? Have you had any blood work done recently?

 

[justbreathe8]

I guess the only other symptom I have is that when I wake up in the morning (every morning), I have cramping and I have to have a BM and its pretty much immediate. And sometimes the cramping doesn't go away totally and I know ill have another bm in a few hours. But besides that, nothing. I went for a regular physical the other day, but have to go back on friday to do the blood work because it has to be when I haven't eaten anything. What does the bloodwork usually show?

 

[QueenFox]

Welcome!

I read through your story and really wanted to send my best wishes your way. I have 2 perianal fistulas and 1 rectovaginal fistula, they are some of the most frustrating and nasty things I have experienced in the 10 years since I was diagnosed with crohns/colitis (doctors still are unsure which). I hate that anyone has to experience them.

While you are waiting to see your doctor have a look around at all the forums here and research a bit about the different treatment options you may have. While we all hope the diagnoses isn't Crohns if it is please know that it isn't a downhill spiral or a horrible life sentence filled with illness. Once you have a diagnosis you can have a more targeted treated to getting better and you can feel happy and healthy again I promise! I have been able to go the university, have a boyfriend, have a career, travel, party with friends and feel happy regardless of having this disease. It just happens to throw some interesting curveballs at you from time to time.

Now onto the setons and fistulas...When I had setons it took me a good few weeks to get use to them. I think it took roughly 5-6 weeks till I felt confidant to move around fairly normally. For sitting for long periods a therapeutic donut cushion was a must and I still use even after my setons were removed as my fistulas are still not healed. My surgeon also told me to have 2 sitz baths a day which really helps clean the area and you feel so much better after it. My fistulas are still draining stool (no pus or blood) so I have to wear pads constantly and it does feel icky but I do feel better with using wet wipes, calmoseptine to help the irritated skin and a travel bidet. I don't have much experience with cramping it has been the one thing I have never had the whole time and I thank my lucky stars for that. Others I know find resting, peppermint tea, a heat pillow and a bit of loperamide helps get them by. If it is more bloating or gas feeling I use something with simethicone in it.

It can be frustrating because healing takes a long patient process while you are already feeling unwell but there is tonnes of support here so you can vent away or ask questions. Hope you keep that chin up and know things will get better

P.S. The bloodwork may be to show if there is any anemia cause by bleeding - which may indicate crohns. This would account for you not being able to eat, this is just a guess though.

 

[justbreathe8]

Thanks so much Queenfox! I appreciate the encouragement! Yes, its definitely very frustrating especially when it started out as a fissure and I thought okay this will heal and ill be back to normal! And now here I am 6 months later still in pain with 2 setons!

I do the sits baths about 3 or 4 times a day and it definitely helps. I also put bacetracin on the "blowhole" as my surgeon calls it (the hole that the surgeon made) because that seems to get irritated as it heals over. I keep gauze in-between my cheeks at all times for the drainage. Thanks for the other tips, I should get myself a heating pad and see if that helps at all. And yes, the being patient thing is what I have the hardest time with I think. It just seems never ending and one thing after another. ugh! Im glad I found this forum because its definitely a big help and calming feeling knowing that I'm not alone in dealing with these darn things!

How long did you have your setons in before they got taken out? Did the abscesses shrink and heal and thats why they took them out but you still have the fistulas?

 

[dave13]

I was diagnosed this past November with crohn's and have had a resection 11-25-13. I found this forum shortly after and it has helped me a great deal.I urge you to come here when you feel down and have questions. I have benefited from the support here and found a lot of answers to my questions.The support here has been as good as any medicine. :ghug:

 

[justbreathe8]

Thanks for your reply. I have found this forum very useful indeed!

 

[nogutsnoglory]

Thanks for tagging me Afidz. Justbreathe I'm so sorry to hear about your nightmare of a mess! Grapefruit sized? Ouch. Unfortunately once these things start they are very viscous and can be a really long cycle. It started with a tiny abscess for me and turned into more of them and multiple fistulas. After numerous meds and surgeries the doctors basically told me my only option was an ileostomy. I don't want to depress you but just want you to know how serious these little buggers can get.

Hopefully the seton coupled with meds will do the job so you don't need to go that route. It's a more extreme route and thankfully not too common. As for pain management I found lying down and not putting pressure on the spot is best, donut shaped seat cushions or foam pads are helpful. Many really like sitz baths, I never found them helpful but they help keep the area clean so they are critical.

Best of luck on healing and keep us posted.

 

[justbreathe8]

Thanks I appreciate it. Yes, in the back of my head i know an ileostomy is possible. Im prepared for the worst, but hoping for the best. And no, not grapefruit (thank God) just the size of a grape. Thanks for responding

 

[QueenFox]

How long did you have your setons in before they got taken out? Did the abscesses shrink and heal and thats why they took them out but you still have the fistulas?

I had my 3 setons roughly 7 months, with my surgeon re-adjusting them once to make them more comfortable around 2 months in. They were removed because I had started humira to help close them and no more pus or blood was draining from them, just stool. Unfortunately humira has not worked for me so I am now looking at starting remicade or I can choose to go the ileostomy path. Every person has their setons in for a different amount of time ranging from a couple of months to years...you can choose to have them as long as you wish (or persevere) as long as the site is not infected.

Many find humira or remicade beneficial in healing their fistulas (along with managing other crohns symptoms), for me the main issue is the constant flow of stool from all the fistulas - I had my whole large colon removed and have a jpouch so do not have fully formed stool. So with these fistulas its like a muddy puddle down there. If you do in the future find yourself having humira or remicade it can take anywhere between a few days to 3 months to start working.

I hope just posting on here and airing your burdens has helped you feel a little better today :ghug:

 

[DCCrohns]

As a 33 year old, active woman just a few weeks into recovery after advancement flap surgery (and trying meds - including Remicade & Humira, setons, etc. over several years), know you're not alone in your struggle or frustration.

There are good and bad days but keep your eyes on your goal of getting better...and, most importantly, surround yourself with good docs, nurses, friends & family.

 

[theOcean]

I'm so sorry you've had to go through this... it is fortunate to hear that your husband is such a great support for you! I know my SO has been great to me throughout my fistula experience, too.

For pain I never really found that medications helped at all (but that might be that I'm unlucky)... for day-to-day I just find it's best to try to lay down when you can, to sit on something well-cushioned when you're upright, and to do your best to keep things clean! I always find my fistula hurts me most directly after BMs because it isn't clean. When I was in the hospital I was given a squirt bottle to help clean the area (really helps, actually!), plus wet wipes and things at home. What helps best is a shower for me, though, so I can clean it properly. I know a lot of people do sitz baths, too.

Otherwise... honestly, joining a forum like this is good, and just surround yourself with people who understand or who make you feel better. Feeling positive goes a long way, although I know it's not always the easiest thing to achieve. Good luck!

 

[justbreathe8]

@queenfox- thanks for the info, my GI doctor suggested starting remicade if I do have crohns. and yes, I def felt better after posting! I hope the remicade will start working for you!

@DCCrohns…my surgeon mentioned something about the flap surgery to try and close the fistulas with each seton once I get them out… how is that going so far for you? Have you had to just lay in bed while your healing or are you able to be semi active? I hope your having success!

@theocean.. Im glad your SO has been supportive too! I think thats a big part of recovery and feeling as normal as possible again!! yes, the setons hurt directly after a BM and then the pain seems to go away as the day goes on, unless I have to go again. then it seems like the pain starts over again. I was reading other people mention the squirt bottle! No one ever gave me one, but I have some at home that maybe I will try. I purchased the sits baths that fit inside the toilet and they come with a IV type bag that you fill with water and the tube lets more warm water in the bath. I figured out that I could use the water that comes out of the tube in a similar way as a squirt bottle…I just aim in and the pressure is just enough to clean it but not too much where it hurts. Maybe that will help someone

 

[DCCrohns]

@justbreathe8 - I am 3 weeks and two days out and I think today I turned a corner. The first few days post-op weren't too bad since the local anesthesia was still in effect (combined with pain meds); however, it's been rocky since then and I've been pretty much restricted to the house, although trying to incorporate more walking by taking my dog out.

I am still on heavy pain meds and sitz baths and change my dressings every few hours. The right pain med is key, as it allows more mobility and I think that aids with BMs and drainage.

I was surprised by the fact that with the flap I am still passing stool it seems from there, and for a while I was in pretty severe pain for 4-8 hours after each BM (radiating through my rear and thigh), as the pressure seemed to allow fluids and BM material to build up behind the flap. I was concerned and saw my surgeon a week out and he wasn't concerned and thought the area looked pretty good despite my feeling like death.

I go back on Friday, so here's hoping now I'm on track in his opinion and feeling better personally! I will note that my CRS brought in a plastic surgeon for the procedure and he became my primary doc on this. I'm still off my Humira (suspended to help healing) and no longer on Cipro and Flagyl, which I was on with Lialda with my setons in place before.

Hoping for less drugs and surgeries in 2014...and wishing healing & health to all!

 

[justbreathe8]

Thanks for the information. Its nice to hear other peoples experiences with what I'm going through/going to go through. It sounds like your doing relatively well! Thats great to hear. I hope things continue to look up for you and that your appointment on friday goes well and you hear good news. Im hoping the same for 2014! Thanks again for sharing your experience! Best of luck to you and keep us updated!

 

[DJW]

Hi. I've had mine since 19. Been to college, university, new jobs, vacations, sports, etc. Didn't have problems and never felt the need to tell anyone. Hope this helps ease the anxiety.

 

[justbreathe8]

Yes, it does. Thank you very much.

 

[mish2575]

Many find humira or remicade beneficial in healing their fistulas (along with managing other crohns symptoms), for me the main issue is the constant flow of stool from all the fistulas - I had my whole large colon removed and have a jpouch so do not have fully formed stool. So with these fistulas its like a muddy puddle down there. If you do in the future find yourself having humira or remicade it can take anywhere between a few days to 3 months to start working.

I hope just posting on here and airing your burdens has helped you feel a little better today :ghug:

Hi Queen, Wanted to chime in for you: Remicade worked for my fistulas. Humira, I dont think it is at all. I have an appt in a couple of months, i'm going to ask for Cimzia (?) or a MM card for CBD oil (or both).