How do I know when a hernia is really bad?

As most of you know my history with all my complications and multiple surgeries over the past year and a half.  Well, as a result of all that, I feel like I am 4 or 5 months pregnant.   I suspected I had the hernia pretty much right after the last surgery but  my surgeons partner said no and she was covering at that point.  She is a great surgeon but doesnt have alot post op experience for stuff like that.  Anyway, nothing would have been done at that point but I knew something was wrong because I have having abdominal pains and I felt a hard knot inside and we could see a bulge.  She did send me for a CT scan but it was negative.  I saw my surgeon for my 3 year follow up, in October which was 7 or 8 months after my last surgery - I went over all that had happened since I saw him, told him all the abdominal pains I was still having - he touched my stomach for 1 second and said immediately I had an ulcer.  Just to make sure = he had me lie down and cough in a few positiions and he said it was definitely there.  I have no idea why she couldnt tell all those months ago - I could feel it and see it.  At this point and for the past year, I couldnt close my paints due to severe abdominal pains.  nothing could touch my stomach not even my underwear - I went out and bought bikini's - really low ones - felt like a teenager.  I walked around with my jeans open and no elastic waist pants.

He basically said withmy  history, he wasnt in a hurry to operate unless it was really necessary and he didnt think this was really necessary.  If I told him that I really wanted it done, he would have done it but I didnt really want it done either - with all the surgery, pain and suffering Iwent through - no way.

Well, it is now another 8 months, and I feel like it is growing more.  I feel it is getting harder are larger.  The pain is terrible at times.  I really dont want surgery, so I am afraid to go to my surgeon.

My question is - how to know when a hernia is bad enough that it needs to be operated on???  Mine is an incisional one.

You have been through so much...more than just about anyone who I follow on these boards.  I hate to hear this for you.

Because it is incisions are you in danger of another obstruction?  Can your intestines become trapped in the opening, or is that not possible.  If you cannot button your pants that is quite an issue.  What does he suggest if he does not want to repair it.  What complications can occur?  Please keep us posted.  I pray he/you find a solution that will remedy this once and for all.

I actually can zipper my pants most of the time now but when the  cramp**** I the hit, I have to start to open them a bit but I  cant wear any elastic waist pants or close the button.  I know part of this is still a result of the healing and probably alot of scar tissue from my illiostomy and reversal which is what cause so much pain for the past year.

He told me that as long as the pain was off and on - and not really that severe, he really didnt want toput me through another painful open surgery after all I had just gone through.  those surgeries have caused such havoc on my system and in some sense still are.  As you must rememeber, I almost didnt make it through them.  I have an immune deficiency so any major surgery on me puts me at high risk for infection and even possible sepsis which happened to me with the perforated colon and 3 times with my kidney stone surgeries.  I was walking around for days and didnt even know I had a fever and turned out ai had 103.5 with major urinary sepsis and it was in my blood too.

So, needless to say operated on this can be just as risky.  I also had a wound infection that had to reopened up and drained and then I had to pack it for 1 month with the reversal.  So, infection is a big problem for me.  I do get IV gamma globbulin monthly to help with this but sometimes it just isnt enough.

I have a horrendous spine and no one will touch me for this reason.

I am not really sure of all those answers, I just know he said it could wait but that was back in October.  I am supposed to go back for a follow up - Oh, I just realized in counting the months, I was supposed to be there in April.  I have been going through so much that I lost track of time.

I am also afraid of losing all the weight I lost last time.  I got emaciated and couldnt absorb anything I ate and ended up on tube feedings for quite some time which was horrendous they were for 14 hours per day hooked up to an IV pole  and this was at home for about 6 weeks.  It has taken me over a year to gain back the weight I lost and am finally where I need to be = it has been really  hard to gain it too (unfortunately by eating things I shouldnt be)

I am so afraid of surgery again and being in the hosptial long term.  It was hell and dont know if I can get through it.  I was pretty close to suicidal when it happened.  I kept telling the nurses and surgeons that they should have let me die.  I was in really bad shape back them and dont want to go through any of that again.

I also have very little family and basically alone most of the time which makes it even hardern.I have never been married and have no children.   My dad lives in Florida (I live in NY) and he came to see me 2 times because it was Thanksgiving weekend, so he was here visiting the rest of the family (although he was here for 2 weeks, I saw him twice)  My one brother was good - he came about once or twice a week and he lives an hour from the hosptial and works full time, so I appreciated that - he was also with me also with me almost all the time during the first 4 or 5 days when things were really bad and he had to make medical decisions for me.  My other brother lives in Boston but he also was here for Thanksgiving but he didnt come to see me or even call me to see how I was.  THat really hurt.  I have an aunt and uncle and they came a few times but nothing from any of my cousins.  It is very sad.    this is one thing that being so heavy all my life has really affected my life.  Another problem I have and this sounds sad, but I run into terrible problems finding a ride to the hospital when I need to get there for the surgery and then again when I need to come home.  Not having family is tough and when you need rides, it makes it impossible.

I also because they removed so much of my colon and a small part of my small intestines, I have so much more malabsorbtion - mainly calories, protein, fat and now iron.  I was doing so well with the tender irons and then they just stopped like overnight.  I was faithfully taking 4 of them per day and in one month, my ferritin dropped from 110 to 20.  My Hematologist almost freaked.  He never saw such a big drop so fast.  He did say it was dangerously low and I wasnt actually anemic but if my iron kept going down like that by the next month, I would be in big trouble and didnt want to take any chances.

I started about 2 weeks later - I had about 5 of them so far = 3 were tiny doses because I was allergic to it years ago when they gave huge doses, so they started at a really tiny dose and increased from there with major premeds and I am doing great with them.  No reactions and I am up to normal dosing for todays requirements - 200mg each dose and my ferritin last week was 238.  He is going to give me 2 more plus the one I had today and then hopefully it will be enough to hold me for awhile.  if not, he said I can come more often or just monthly for maintainance.

If the pain continues to get worse = I will definitely go back to my surgeon and see what he says.  He did tell me that I could get an abdominal binder but I couldnt find one that fit = they were either too lose or so tight that I couldnt close it.  I know they need to be tight to hold you in but I couldnt get it closed and the big one I could close like nothing - it was crazy - there should be more sizes.

I will keep you posted and let you know when I know more.

Sorry this is so long.  Sometimes I just get long winden since so many times I have no one to talk to.

thanks for listening

I always appreciate your posts and you sharing your story.  To say you have been through more than anyone I read from on here is an understatement.  You are an amazingly strong woman. 

Do you have a good support system?  I never hear complaining from you.  You are matter of fact about this and approach it head on.

I'm almost always at the end of a click if you ever need to talk.  You offer so much to us on the forum.

Thanks so much for your support.  Unfortunately, these boards are pretty much my only support.  I have tamily but they are spread all over the East coast - I am in NY, dad in Florida with new wife (my mom died in 1998 - she was my biggest support), I have 2 brothers - 1 in New Jersey and 1 in Boston.  Most of them dont really want to hear about my medical problems and they certainly dont understand them

It is always very helpful for me to come on these boards and that is why I get so long winded sometimes - I need to get things off my check.

thanks again.

rbb

I had an umbilical hernia repaired before my knee replacement.  It didn't bother me much but on days it was sore, it was pretty sore and after my knee they didn't want any surgery for fear of infection.  So I did it to get it over.  It was easy but I know the hernias are different and we are different.  So I don't know.  I guess my fear would be bowl obstruction and if it is possible to strangulate.  If it hurts really bad, sugery may be the only answer.

I would have the discussion with your doc about the pros and cons of surgery again.  Dasie brings up a very good point about strangulation of intestines - that can be a dangerous condition.  If it's not the case, that's great, but you should get it checked out.

I had my incisional hernia repaired twice and it wasn't that terrible but I didn't want to wait around to see if it strangulated.  I had intermittent pain that was terrible but only short lived, thankfully.  I just didn't want to take any chances and had them both repaired as soon as possible.  The last surgery was pretty rough but they used mesh and the pain is gone and I was told the chances for another hernia there are small.

I remember reading about your recovery and I thinkthat might be why I am so scared. I know you had such a hard time and after the 4 surgeries I went through for complications 1 1/2 years ago, the thought of another extremely surgery, I dont know if I can handle that.  I finally weaned myself off of dilaudid and back onto percocet for my daily pain and the thought of going back on dilaudid daily really kills me.

I will go get it checked if it gets worse and will probably make a follow up appointment in the month or so anyway since I am over due.

thanks for experience.

My thinking was that getting it repaired before it got too out of hand was probably going to be easier on me then waiting.  I would talk to your surgeon and get his opinion on any risks with not fixing it.  My concern was that because mine was small it was more of a risk of strangulation then if it was larger from what I understood.
I hope I am done with surgery myself and I completely understand you not wanting to have another one if it isn't totally necessary.  Good luck whatever you do.