Crohn's with possible Pyoderma Gangrenosum by

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I was first diagnosed with Crohn's when I was 21, and like everyone else went through years of surgery and steroid treatments and felt because it has been quiet for a number of years now that it has decided to leave me alone now that I am 70, no such luck!!! Had a bad case of cellulitis and after a lot of antibiotics, biopsy's and investigations "Pyoderma gangrenosum was queried. The ulcer looked horrific, like as if I had been shot and was just displaying an exit wound of major proportions. The worst thing I have come up against with this, because it is a rare complication, is getting the Doctors to agree. The condition was extremely painful and although it is beginning to show signs of healing. It has been an uphill struggle with only my local nurses helping with compression bandaging. Now 5 months since it developed and I feel I have about another 6 months to go before it heals. Has anyone else out there suffered from this?  If I am honest I am worried it will come back again and they will still be deciding whether or not it is a PG!!!!. 

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  • Posted

    I am not sure if it PG. However my Daughter who also has Crohn's has been admitted to HDU 3 times in the last 3 Months with Cellulitus

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    • Posted

      Hi - Thank you for replying to my original letter. Did your daughter have a high fever with her cellulitis? It must have been bad if they took her into hospital. I don't know how old your daughter is? but I can tell you that before I was diagnosed with Crohn's I would have been about 21/22, I had terrible sores on my legs and they recently thought it could of been that, that caused the cellulitus to keep happening. Crohn's is such a nasty complaint which you learn to live with. I can tell you though that the ulcer with ordinary cellulitus would be about the size of a 50p piece, whereas what happened to mine which led them down the PG road is that the wound looked as if I had been shot, but all I had was an exit wound which was horrific to look at. Truly hope for you and your daughter that it is not a PG. Although I can tell you it is healing with compression bandaging which I expect your daughter is having now anyway. 

      Best wishes

      Sheila

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    • Posted

      Dear Sheila51371.

      I have 4 Children all in their 30s, They ALL have Crohn's as do I, and my 2 Eldest Grandchildren are under investigation. My Kids were around 8yr when they first showed symptoms but it took yrs of suffering and investigations for other things before they were diagnosed and about 11yrs passed before my 2 Daughters had to have major surgery and they were at long last diagnosed. Making my Daughter 19yrs. She had a very very High fever with her Cellulitus on both occasions.

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    • Posted

      Hi, and I thought I had it bad! Can I ask you to tell me how your Crohn's started to become active? I know with me that at 21 I went on holiday to Spain and caught what I think was dysentry, which was enough to set the Crohns off. Never went back to normal after that and everyone thought I had cancer. Wanted to eat - could'nt because it hurt so badly, so you lose the habit. Interested because it appears to have really taken hold in your family. Anyway, to get back to your daughter - did they have to give her very strong antibiotics, ie not the usual ones given by the Drs. but ones which brought down the nos shown in her blood picked up by microbiologists. As far as I know these should read about 12 especially if you have Crohns,  but with this my score was something like 250. I say this because I think the shock of this caused the leg to break out.

      I am wondering if this happened to your daughter the wound looked horrific, and as I have said before looked as if I had been shot and it was an exit wound with no entry. If you look up PG on line you will see how nasty the lesions look. All I can advise is that you or she keep a very close eye on it. Your daughter is young to have such a complication. If you want any more information let me know.  Best wishes  Sheila  

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    • Posted

      Sheila, Mine just started when I was quite young and manifested itself by Mouth and Vulval ulcers. My Daughter however was 19 and on Holiday in Gran Canaria when she felt unwell. on her return she went to hosp and was admitted. She had her appendix out but that was normal. She had a perforation to her Bowel, left undetected for 6 days, she needed surgery and had her lge bowel removed and a Colonoscopy. Which is now reversed. They are still unsure why it has run through the entire Family XXX

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