abcess, stomach bulge LRQ???

Hi all,

It's been a long time since I've been here or posted anything. I'm back because I'm currently experiencing the worst problems I've ever had since my diagnosis of Crohn's. I'm one week out of the hospital after a 16 day stretch in. When I finally caved in and went, and subsequently was admitted, I had a bulge (mass?) in my LRQ of my abdomen. The pain the last 2 days had nearly been unbearable and I just overall felt horrible. It didn't take long for the ER Doc to admit me or consult a surgeon. When the surgeon came, he suggested that I had an abscess and sent me for a CT scan to confirm, which it did, with a possible fistula. The abscess was apparently 7cm in size and I believe they said bound to the abdominal wall. Anyhow, when my blood tests came back my INR levels were too high and nobody would perform the CT guided drain until I was <1.2 (Initially I was 1.7). Several FFP transfusions were done and 1 actual blood transfusion when my HG level dropped to 80 one day. Eventually my INR levels were reduced to 1.4 and a radiologist at another hospital was willing to do the CT guided drainage at that level, so I was transferred by ambulance. Afterwards I was sent back to my original hospital and spent another couple of days until they felt I was good to go. The entire stay I was on IV antibiotics, I believe Flagyl and Cypro. I was given pill forms of these when discharged.

When I left, I still had a mass along the LRQ and the Doc. ordered an MRI for me which isn't until Aug. 31st to find out what that is. As I had no pain and was beginning to eat well again, there didn't seem to be any urgency about this. A couple of days ago, I noticed the mass appearing larger and some pain beginning again. Also, my stomach on that side feels very "full". Today, the pain is still there but tolerable, and nothing like it was when I first was admitted to the hospital.

During my hospital stay, I got to see my regular Gastroenterologist one day. He advised me that the draining was a waste of time and that it would only fill right back up and he absolutely wanted me transferred to a hospital in a much bigger city where he recommended a well-known and respected surgeon should remove the abscess and possibly do a resection as well. My admitting Dr. tried to follow this up but the recommended surgeon was on holidays and his replacement looked over my CT scans and stated I did not need surgery, drainage should suffice. My GI warned me that if I don't get this done soon I face serious possible complications such as sepsis and that basically, I'm playing with my life. He actually scared me as he was very adamant about his recommendations. On the other hand, the surgeons all seem not too concerned and think drainage is the way to go.

Sorry for the long post, but here is my questions.
- Anyone been in a similar predicament as me and what happened?
- Is it possible I can avoid surgery (never had one before and I'm quite a baby, lol! I'll do what's necessary though, but would love to avoid it if possible)?
- As my pill antibiotics run out tomorrow, should I request more? I've been on 2 weeks of IV and another ~8 days of pill antibiotics - all Flagyl and Cypro.
- Do you think I'm risking staying home with this mass and the pain reappearing and would probably be way better off back in the hospital? (Please say "stay home, it's all ok!" lol)
- My family Dr. weeks ago warned me that my long term usage of prednisone would cause an abscess (how right he was) and so I stopped taking it altogether (after tapering) - but it's only been ~3-4 weeks since my last prednisone.
- other than my antibiotics (which run out tomorrow) I'm not taking anything else, except pain meds when needed. Is there something I can take to help reduce inflammation that's not hard on the stomach? (Years ago, I took indocid/indomethacin for many years but had to stop when first diagnosed with Crohn's, then took prednisone for ~3 years - but stopped as mentioned above, mostly to control my Ankylosing Spondylitis.)
- I can't think of anything else at this point, but have you got anything else to mention/warn me about I haven't already touched on?


I would love to hear from people who've had similar experiences as myself and what they went through. I'm trying to inform myself as much as possible so I don't have to blindly trust the Doc's. as I did during my recent hospital stay. I appreciate any responses at all. I'm also so glad this site is here as it's my goto site for information regarding my health problems. I may not post much, but I sure read a lot! Thanks :)

-Pat

Thanks Ivy, I certainly appreciate your reply. I've had many warnings about not messing around with this but I'm kind of stuck between a rock and a hard place. I can't demand Ottawa (that's the hospital my GI wants me to go to, but the surgeon there suggested I get the original abscess drained) accept me and if I go to emerg at my local hospital (Sensenbrenner, Kapuskasing ON) I'm sure they'll admit me but all they'll do is insert another IV and put me back on saline, Flagyl, and Cypro. I'm not knocking Sensenbrenner as they are full of great Doc's and Nurses but they don't have the equipment (eg. CT scanner) so they'll arrange to have me either sent to Timmins, via ambulance, or fly me to Sudbury - to have another CT guided drainage. I don't think drainage will help anymore nor does my GI and since I'm not anywhere near the pain level I originally had when first admitted, I'd much rather be at home. With my Ankylosing Spondylitis I absolutely dread another ride in an ambulance...and btw, I had no idea how horribly riding those things are!!! ~3 weeks ago was my first time ever in one and I so hope my last, lol! You would think those things would have awesome suspensions to cushion the ride for patients like me, or car accident victims, etc. but I digress ;)

That's very scary about the patient who ended up paralyzed. Again, I've been warned about it erupting and entering my blood stream as well, potentially causing sepsis and possibly (probably!) death. I'm definitely not trying to mitigate the situation I'm in. :(

Your advice about not relying on this forum as a sole source of info is very sound. I'm not. I do appreciate what I'm learning here though, and this time I want to be much more informed about my problems before entering a hospital again. At this point, I'm 99% sure it's inevitable I'll be enduring another hospital stay. It's not a matter of if, but when...for sure. I am slowly learning about this more and more, from this site and through google as well. What I'm finding is sort of mixed...some people are lucky and can avoid surgery and some need it right away. I've also found that having a mass, described at one site as 'sausage like', in the LRQ is not abnormal with Crohn's. I'm trying to follow up on that now and wonder if maybe the abscess is not filling back up (due to the much lower pain levels) but that the mass...whatever it is...is growing and causing the 'full' feeling like bloating that I'm having. If I can find out more about this then hopefully I can also find how it's remedied. I know about Remicade and I'm waiting to start it, but obviously the abscess is delaying that now. They refuse to administer it as I guess an abscess is an infection and they don't want to mess with my immune system while I have it. I am wondering if there is some other kind of medication that I can safely take that will help me.

Again, sorry for the long posts as I'm always afraid I'll leave out pertinent information. I so appreciate you taking the time to read these and also to reply and all I'm doing now is researching as much as I can while hoping someone here might give me more information that I can use. All the while, I'm monitoring my pain and swelling levels, and for any other symptoms that may arise, at which point I WILL drop everything and head to emerg. Hopefully I'm not jeopardizing myself but my current thinking is that nothing can be done in a hospital that I can't do at home right now, I'm utilizing my time here researching and educating myself more and more about Crohn's (should have done this much earlier instead of waiting until problems arise...hindsight is definitely 20/20!), I'm far more comfortable at home than in a hospital, and the biggest thing is that I'm with my wife and kids! :)

Ivy: no, I didn't notice the link until you mentioned it, but after I'm done posting this reply I'll be following them...thank you! Also, your other advice is sound too and I'm waiting till morning (~4am now, can't sleep, 5 more hours until my family Dr's. office opens!) to consult my family Dr. with questions and now a 'plan of action'! ;)

Something else I've noticed; although currently I feel full I'm also feeling hungry. I've realized that the last few days I've had to eat frequently throughout the day, but I can't eat much at one time as it makes the pain worse. I've tried many times to try and understand what I can eat and what I can't, and it's been a very frustrating exercise. What may seem to be ok one time, can cause severe cramping and bloating another time. I do notice there are a few things that consistently cause problems but the rest I'm not sure of at all. My wife gets frustrated with this and I don't blame her!

Anyways, although I see many people here avoid dairy, I rarely seem to have problems with it so lately I've been trying to eat one or two yogurts a day (this was also advised by a nurse to me during my hospital stay as she theorized that the massive amounts of antibiotics I've been on may have killed some of the 'good' bacteria in my stomach and the probiotics may help restore some of it), I snack on ~2-3 small slices of cheese a few times a day, and I'm now trying soup and my wife bought me some ensure (haven't tried it yet, but going too) . Right now any type of bread seems very 'heavy' on my gut and I'm kind of avoiding it, so sandwiches are out. I know this may seem ludicrous, but I've had popcorn a couple of times that seems to be ok and I LOVE shrimp, dipped in garlic butter, and been having small amounts of that too without any noticeable problems. Other than what I've listed, I don't know what else to eat. I love things like chili, most vegetables, bread, many fried foods, and salads with italian dressing but don't dare touch any of these as I know I will suffer later. So, anyone have some diet advice? From some of my reading so far, it does seem like eating small amounts frequently throughout the day is the right way to go...do you agree? Some days I don't feel like eating but this time around I'm going to force myself as the last time I avoided foods, I went 2 weeks and became very weak and dehydrated (also avoided drinking enough fluids). I am having a few bowel movements per day (normal for me) and don't seem to be having any unusual problems in that area...with the only somewhat difference being that my stomach does seem to be making more noise than normal after each meal.

Ok, I'm off to read "Dealing with Abscesses and Fistulae"! Thanks again and I'll be back in a bit :)

-Pat

It's frustrating, isn't it? What works one day becomes dangerously painful the next. And yes, it's incredibly frustrating and tiring and costly for whoever does the cooking and the shopping!

I think if milk works for you, then go for it! You'll know if it causes you problems.

Don't lose heart. My guess is that you'll find that your diet broadens once your symptoms get under control.

A lot of us find that the best thing we can do is listen to our body. If small regular meals work for you, then eat small amounts regularly. If you're craving protein or dairy or whatever, then work with that too. As with pregnant women, often the sick body knows what it needs, and will tell you.

Other people will post here with different perspectives, so just use your common sense and education and intuition, and maybe do a bit of experimentation and consultation with professionals, to work out what is best for you.

All the best,

Ivy.