Crohn's Disease Support Group

Hello guys!

I was wondering if anyone else has had any difficulties with a wound/incision not healing very well.

It has been 5 months since surgery, and there is a 2" part of my incision that won't heal and close. It is constantly getting infected!

I have been going to wound clinic for 3 1/2 months. Dr has been cutting the opening wider every week. Packing it daily.. which we have used 5 different packing materials!

Had CT last Wednesday, no fistula or other reasons why it won't close.

Wound Dr wants GI Surgeon to open me back up to figure out what's going on. GI Surgeon won't, since I have had major difficulties with last 4 surgeries. Says it hasn't been long enough of a recovery time for me. If the CT had shown something major, he would open me. Otherwise he wants me to wait a while.

But honestly, I don't know how much more patience I have! I have only had 2 'good' months in the last 1 1/2 years!

Everyone says, "Hang in there, it will get better." But it isn't... sorry for whining... its just getting really hard. Nausea & vomiting have gotten worse, depression is getting evil.

my boyfriend has Crohn's so I can't understand your pain, nor his. However, he came out of surgery and went on vacation over the past two weeks (two surgery's in two years) He had to have drains put into his back to drain out a spot in his colon. The spot where the bag was is now infected two weeks later. However, a ray of light, his hole from the drain last year closed up nicely, with out any infection. I know this is litereally doing nothing to help, but I wanted to tell you at least, you're not alone! Don't give up! Things with this illness may not get better, do everything you can to make the best out of this life right now. I wanted to send you this because it looked like no one got back to you...you are not alone. The hole in Kev's back is about a finger in circumference. Keep your head up!!

Hi! It's difficult to say why the reasons are that a wound will not heal properly, although, I do believe that if you are on immunosuppressants at the moment-it might be playing a huge role in not allowing you to heal and having this many infections. 3 1/2 months is absurd, in my eyes (telling you honestly). You know what? I'd ask... if you are stable enough, if you could temporarily skip the immunosupressants-that is, if you are on them. Are you taking antibiotics at all for the infection? The nausea and vomitting sounds like sepsism, if you have a fever accompanying them. Why not take your temp. and if you have a fever... maybe take a trip to the hospital and see what they can do for you, (maybe you need an IV of antibiotics).

I'd be more pushy about maybe getting another referral to another surgeon... although, if you've had a history of problems like this, maybe that direction is not the one for you.

I am so very sorry that you are inflicted with this. What a pain! You must be frustrated, I'd be too!!! Hang in there and I hope everything goes well. I hope any of this was helpful to you in your present situation. Keep us posted would ya?! xo

Hi Jojo!

No I am not on any Crohn's meds, they just recently took me off the antibiotic (was on almost continously since January).

I have had dye tests for fistulas, Ct Scans & ultrasounds. Everything normal.

Fever off and on, 1-2 degrees above normal. Nausea & vomiting they think is due to Crohns. Which is normal for me. But it has increased since January.

They won't open me back up for another 3 months, since I had a very bad surgery last year. Still trying to bounce back from it..

I am just frustrated! I go through up to 5 ilio bag changes a day, skin is so broke down it hurts all of the time...

I didn't know if anyone else has struggled with healing or not. It seems like the older I get, the worse my Crohns gets, the less success I have with healing properly.

In the dumps...

Awe Tori! I'm so sorry! Well... the Crohn's meds being outta the picture isn't even a plus here, in your current situation then. There's no getting off of what you aren't on. it's a terrible time right now, for you. I really wouldn't blame you for being in the dumps. Hopefully someone will respond to you about the healing that can actually help you!!!! That's all I've got though, unfortunately. I wish I had all the answers in the world for you and fix you up myself!!!

It sounds "off", with your situation, but I'll tell you anyways... that the worst I get is minor cuts and bruises that don't heal for months and months, but then again, I haven't had any serious surgeries for at least 4 years and I am on immunosuppressants.

I had a hole that had a drain tube-from an absess-that didn't heal for 6 months.

What you are going though sounds so horrible and I belive it must be for you! I'm thinking about you and I hope you come out the other end of this still in one whole piece, lady!!!! I honestly have to tell you, that the fevers don't sound good with the nausea and vomitting! I'm trying not to sound too much here, but it's a red flag to me, even thogh it seems like a harmless on or two degrees!!!! I can't believe they are considering that much time in between to take another look. There must be another reason that you haven't been informed by them about with yet, another surgery. There must be complications that they just wont risk your life over!!!!

I said "hang in there" as to say, even though you are feeling the pain and frustration, there will be a conclusion to all of this in time. In time, you are here and you are doing all you can and that's all you can do . I am just saying, keep doing what you are doing!!! You will get through this, it just really, really, really sucks right now (that's the meaning of my "hang in there")!!! It seems so insensitive though, especially since, you are the one going through this and not like those around you are at the moment. I hope I didn't offend you!

I just really don't know what else to say other than I hear your pain, I pray things get better for you and keep posting, for sure! In my thoughts and prayers!!!! xoxo

Keep the posts coming though-there's so many poeple here-someone must have what you need!!!!

Hey tori. I myself am a Crohn's patient...who can't seem to get the dang flare ups under control. I've been in and out of the hospital 4 times over the last three months and still all my GI does is put me on the steroids, tell me to keep taking the cimzia(because it hasn't been long enough to know if it's failed me even though I've been taking it all year), and to call him even though he never gets my messages or calls me back. I'm still having the constant stomach pains accompanied by nausea, dizziness, headaches/migraines, and occasional back pains but still he won't do anything so I totally understand your pain about something not healing when it should or doctors that don't do their jobs. I just dropkicked my physician to the curb because I don't have 20 bucks to keep going to see him when all he does is give me half ass first year medical advice. I'm about ready to do the same with my GI. It sounds like you're in a lot of pain. I haven't had any surgeries for my Crohns(even though my doctors have kicked it around quite a bit), but the constant flare ups have me always in pain from head to toe and I rarely feel like my doctors are doing anything to actually treat the Crohns, just temporarily stop it. So no, you're not alone. I don't truthfully have any helpful suggestions. But in my experience, it's nice to have somebody to talk to who can relate to your problems. I just wanted to put my two cents in and to say that if you need to talk, I'm always here and open. Good luck and keep us all posted.

Thanks for the support guys!

Jojo, you didn't offend me. I have literally been through heck and back last year. I have not had good luck with meds since Remicade stopped working (4 years ago). Crohns got so bad my GI sent me to University Hospital. That's when surgeries began, emergency Iliostomy and major difficulties with wound healing and bag issues.

I was very ready for having a bag. The Crohns pain got so bad, I was literally confined to the couch for 6 months, crawling to the bathroom and not 'living'. Which was very hard on my mental status, especially when I was trying to give my daughter the wedding of her dreams and the birth of her 1st child.

They won't do surgeries to close together, since I went into septic shock last year. Then having difficulties this year. They don't want my body to get used to antibiotics, since they have to give me IV riders when I am in the hospital. Plus they are hoping my body will adjust better to the Ostomy with more time between resects.

Awna, it sounds like you are where I was 2 years ago. My GI dragged his heels when it came to surgery. I refused to take anymore steroids!! I have medical issues from being on them for so long (15+ years).

I would definately find another GI!!!! Do you have access to a University Hospital or Mayo? The doctors there seem to have a better understanding & up to date knowledge of Crohns. At least in my experienceand from what I have heard from others.

It doesn't sound like the Cimzia is working. You should have noticed changes within 4 weeks if it was. They are talking about starting me on Methotrexate injectable. But want to do the scopes first, incase I need another resect.

I really understand what your going through! I hope you find a GI who understands and will help you. Remember, don't back down from them, be authorative in your care and most of all, ask questions.

I wasn't that way through most of my treatment. It took until I was so sick and tired of being 'sick and tired'!! So I took the bull by the horns and went face to face with it! I told my doc what I wanted to achieve with his therapy and what I was and was not willing to do.

I know it sounds like I was being a bi*ch about it. But it needed to be done, for MY health. I wish you luck and remission in the near future! Keep me posted on what goes on.

Thanks tori! Well they said they don't want to do any surgery unless it's absolutely necessary. In my case, they can still control it with medicines. I mean, I was only diagnosed a few years ago. So I guess they're still hoping that they can control it. I've already been through four GI's trying to deal with this crap. And right now, i may be in the process of another flare up. The trouble is is that I'm still on the dang steroids from the last flare up. My Gi is still cycling me off of them. I don't know if I have university or Mayo near me. I usually don't have time to deal with things like this because I'm still trying to get my finances in order. They've taken a bigger hit than anything else. This is the problem, last flare up I told the doctors I didn't want steroids and not to give them to me because I wouldn't take them. But they gave them to me anyway saying they were something else. I didn't realize it until I went to leave and they gave me the prescriptions because they couldn't just stop me. This is why I hate the medical industry. I'd almost rather face it on my own. I'm sorry to hear that you've had it so rough Tori. It sounds like you've been screwed massively. It;s too bad normal people like us can't suee the medical industry for such problems and get away with it like rich punks can. right?

LOL Awna! So true about 'rich' people!

Regarding the steroids.. no you can't just go off of them. You have to 'step-down' slowly. Otherwise you can do more harm than good. It took me 2 years to step-down! Wishing you luck with it!

I hope your finances get better. I remember the 'tough' times I went thru trying to adjust going from working to getting disability approved. Sometimes medical finances can be more difficult than Crohns itself. Just try to remember, everyday stress is a huge impact on flare-ups. So do as much as possible to lower the stress at home. Keeping your home 'stress free' definately helps with Crohns management.

I think we were "let go" by my daughters GI, he put her on steriods they did nothing so after she swelled up like the blueberry girl in Willie Wonka he stepped her down off of them and she did. He said NO to the 6mp's (is that right) because she thought she had a reaction to the first one and then he had a EXPENSIVE blood test done (Not allowed by insurance) and said her liver can't process them. She tried Humira for 3 months and had a reaction so we said no more steriods, no more humira I talked him into Asacol (?) He didn't think it would do any good but he gave it to her then as he left he said "since she wasn't under treatment she didn't need any followup appointments.... She seems to be better now then she was even a month ago