Slow healing wounds - is it crohns?

[seattlesounders]

Folks, I'm new here so please forgive me for any redundant questions.

I'd love your guidance on whether my symptoms sound like Crohns or something else.

Background: 3 months ago I had rectal surgery to remove some hemorrhoids, and address a fissure (LIS and fissurectomy). The doc said I'd be healed in 2-4 weeks.

Roll on 3 months, and the docs are scratching their heads on why I am not healing. I recently had my second colonscopy for Crohns and the results came back inconclusive. Yet I do have ulcers in my Illeum and healing ulcers at the site of my hemorrhoid removal. My surgeon said that "my wounds were healing horribly".

Other symptoms I have include -
-I have always got mouth ulcers when I was run down from when I was a kid, and found B vitamins helped keep these away.
- Post surgery, I found certain foods especially caused me wind and made me go to the toilet and but I've since eliminated brewers yeast, dairy and wheat so that I now only go to the loo once or occasionally twice per day.
- Some tenderness just below my waist on the left and right hand side.
-Weight loss of 20 pounds over those 3 months
-Continued pain and discharge from the wound site.

I feel like choosing to address my fissure was the worst move I could possibly made - especially because we have a new born son, and I can barely bend down to pick him up or properly support my wife when she needs me most.

Finally as I read your posts, I realize what brave people you going through your own similar challenges, so I wanted to thank you in advance for any guidance you could offer.

Seattle

 

[archie]

Hiya and welcome. it's hard to say if it's crohns or not but certainly your symptoms warrant further investigation. What do your blood tests look like? The weight loss would be of some concern. There are people on this forum that non healing fissures are a problem also and they might be able to give you advice. I think you should maybe get a CT to try and establish the abdominal pain. Hope you get some answers soon.

 

[DustyKat]

Hi Seattle and :welcome:

I'm so sorry to hear that you are going through all this.

Certainly most if not all of the symptoms you have listed could be attributed to Crohns.

I understand you questioning the decision, that is only natural, but you made that choice based on what you knew and were told to expect at the time so don't be hard on yourself.

The thing to address now is why you have a wound that won't heal. Since this is not normal I would start with a run of blood tests. Have you had any done lately?
If not ask for a full blood count, urea and electrolytes, liver function tests, inflammatory markers (CRP & ESR), B12, Folate, Iron Stores and Vitamin D.
Question the doctors about the ulcers in your ileum, what do they think is causing them? and perhaps ask for some imaging to be done...MRI or CT Scan, with oral and IV contrast, for a start and go from there.

Even if these tests return as normal, I mean it would be great not to have Crohns but... continue to pressure the docs for answers. At the end of the day a wound that does not heal in a young man is not normal so something else is going on. One of those things may well be inflammation from untreated IBD.

Good luck and keep us posted!

Dusty. xxx

 

[hannah-rose]

Hiya, your symptoms sound quite similar to mine (see signature below). I had chronic fissures for years that eventually turned into an infected perianal ulcer which was drained and all the gunk and gross tissues scooped out (yum) and I was left with a large, but healthy, open wound. It has since failed to heal above a certain level and my many doctors and nurses have tried EVERYTHING to get it to heal. I've been unofficially diagnosed with crohn's and my next step is infliximab

 

[seattlesounders]

Thanks for the helpful replies folks, honestly I feel sometimes i get more from a post to a forum like this then seeing my doctor!

Hannah, first off I'm sorry to hear of the issues you are going through. Those ops must have taken alot of bravery! You mentioned your docs tried everything, can you tell me -
1.Which steps you tried in the past?
2. How did you determine that your wound would not heal further? I ask because I have had some healing in those 3 months, and it makes me wonder how much longer I should wait before trying medication?
3. When do you feel pain? Post op, I can go to the loo,without too much pain but it then aches for the rest of the day. Wondering if you have something similar or different?

Dusty and Archy, thanks for the bloodwork tips, I'll follow up on those this week.

 

[hannah-rose]

Thanks for the helpful replies folks, honestly I feel sometimes i get more from a post to a forum like this then seeing my doctor!

Hannah, first off I'm sorry to hear of the issues you are going through. Those ops must have taken alot of bravery! You mentioned your docs tried everything, can you tell me -
1.Which steps you tried in the past?
2. How did you determine that your wound would not heal further? I ask because I have had some healing in those 3 months, and it makes me wonder how much longer I should wait before trying medication?
3. When do you feel pain? Post op, I can go to the loo,without too much pain but it then aches for the rest of the day. Wondering if you have something similar or different?

Dusty and Archy, thanks for the bloodwork tips, I'll follow up on those this week.

Hey I feel the same! Well only because I come here first for information then talk it through with my Doctor to make sure I'm getting the facts, but if I emailed my Doctor as many times as I posted on this forum, i think he'd ditch me...

Let me answer your questions for you:

1. I've tried wound packing with kaltostat and scorbiscan, I've tried silver dressings, iodine dressings, honey dressings, I've tried two different types of antibacterial wound gels, I've tried twice daily salt baths, I've tried lying on my front for four weeks and airing my butt crack, I've tried drinking actimel and eating lots of chicken, and I've tried a six week course of strong antibiotics and I've tried 4 weeks of using a topical steroid ointment. So I've tried a lot of stuff!

2. It's been determined that it wont heal because I had my operation in January and it's not September and I still have a large, deep wound. There has been healing at intervals during that time, but it should have healed in about three months or so.

3. I have a lot less pain than I did pre-op, but that's because my ulcer was infected. Now, if I have soft, regular bowel movements, I don't experience any pain really, except minimal stinging that doesnt bother me much at all. However, if I'm constipated, yes it hurts but it's not unbearable. After I first started using the very strong steroid my wound got much more painful and washing with the shower head, drying with the hair drier, and applying dressings became quite agonising.

I hope this is helpful, I'm seeing my GI Dr tomorrow and I'll let you know what treatment route he wants to take

Hannah xx

 

[seattlesounders]

Thanks Hannah. You're right you have tried a few things there. Nice that you got some healing in though to take the edge of that pain. How did doc appointment go today?

 

[hannah-rose]

Heya sorry I've been rubbish on here, I've been a busy bee over the weekend. Drs appointment went well, My GIs putting in my application for Infliximab (seeing as all the above have failed). So I'm hoping, and even though I'm not religious, PRAYING, that it works

 

[seattlesounders]

Glad apt went well. I'll be praying for you too. Btw
Discovered manuka honey this week. Seemed to help w
With my inflammation.

 

[hannah-rose]

Yep manuka honey is supposed to be good, at least its all natural, which is a bonus. And it smells lush

 

[seattlesounders]

Okay folks some updates on my side. I had my promithius blood test results and the results were again inconclusive. There must have been some healing from the site at which i had surgery because I can now poop with just a little pain and walk without a limp (Thank you God). I still can't bend down without a sharp pain and certainly couldn't run yet (4 months from date of surgery at this point). My gastro wanted me to wait a couple of weeks before escalating to Dr Hanauer. If you guys were in my situation would you try and wait this out or follow up with this specialist? If so any suggested next steps/questions for him?

Thanks so much

 

[littlemissh]

Hi Seattle,
If I had ulcers in my terminal ileum I would want to know exactly why as soon as possible. If you have active ulcers/inflammation you want it dealing with before it causes scarring etc.

I would go for the second opinion as soon as I could.

 

[DustyKat]

I agree with littlemissh, I would definitely go to the specialist.

Did you have the other blood tests and if so do you have the results?

Dusty. xxx

 

[seattlesounders]

Hi folks some updates - Littlemissh and DustyKat, I have taken your advice and scheduled an appointment with Dr Hanauer at University of Chicago. Only issue is that he is so booked up the earliest I could get in is Feb next year.

My question for you folks is that to avoid multiple flights to Chicago, what should I ask him to do during my first visit?

As background:I'm nearly healed from my butt surgery, but I am anxious that I'm not taking any preventative treatments if I do have Crohns. Other issues I'm worried about - I do get canker sores when I miss sleep, and my urethra seems a little inflammed. It doesn't hurt when I pass water, but I'm still concerned about this. I have some occasional mild pain on the right hand side of my abdoman, and have noticed that when I eat either too much wheat, dairy or yeast I'll get Diorrhea.

DustyKat, I just took the GI doc's recommendation on blood work, and they told me no elevated antigens associated with Crohns if that makes sense.

Thanks for any thoughts on guidance offered.

 

[seattlesounders]

Some updates:

I'd say my wounds are 80% healed but there is a small bump on the inside on my butt that hurts. I'm unsure if this is just a healing hemorroid wound or a fistula which scares me stiff. It does hurt if I sit on my butt for a long time or if I have a more solid poop. How would I know if it is a fistula?

Secondly my appointment with Dr Hanauer is in February. My GI is sure it is crohns but just wants opinion on how best to treat. Would medications heal a fistula or would I need surgery again?

Finally given how sure my doc is that it is crohns, should I ask for a CT scan? Essentially does the amount of damage internally influence the medication dosage/type or result in a different action?

 

[DustyKat]

Hey seattle,

I'm so sorry I haven't kept up with this.

It is good to hear that your wounds are healing! I don't know much about perianal fistula's so maybe drop by the fistula and abscess forum and ask your question there as well...oops! just went to link and I see you have been there. :lol:

The biologics, Remicade/Humira, are very good at healing fistula's in the anal area so perhaps that may be an option for you over surgery, if surgery is still a consideration.

Since you have ulcers in your ileum I think a CT scan or CT Enterogram isn't a bad idea, it may not necessarily affect your course of treatment but it will at least allow you see just how extensive the disease is in that area as a colonoscopy is only of limited value past the large bowel. I don't think it ever hurts to have it as a reference point.

Good luck!

Dusty. xxx