• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Charm's story

charm's story

Hi my name is Charm and I have Crohns
Start in the beginning. At age 14 I had my first round of ERYTHEMA NODOSUM. These are red bumps of varying sizes on the shin. These bumps ranged from 2 inches high by 3 inches wide to quarter size and a ½ inch high. At the time (1966) all the specialists thought it was a strep infection of the skin. I was treated as though it was an infection with penicillin. I had a very severe penicillin reaction the following year. Now since seeing my gastro Drs, I found out that Erythema Nodosum is actually an autoimmune disease and associated with Ulcerative Colitis and Crohns disease. Who would have thought? My gastro Drs have all said if I had had a colonoscopy done at that time while I was having the Erythema Nodosum, it would have shown that my bowel was most likely involved at that time. I do not remember having any diarrhea or constipation. I was just a kid and kids don’t generally watch what their body is doing. Well at least I didn’t. This went on for years, generally not as bad as my first year with Erythema Nodosum when I had 17 bumps down my shin. The following year it switched from my left leg to my right leg and I went thru hell again with the treatment. I had Erythema Nodosum bumps off and on for the next 15 years, though none were as severe as the first two years I had it.
On to more recent history
My first colonoscopy was at age 49. I was having terrible pains in my rectum and they would shoot up my rectum and then forward towards my abdomen. Results of the scope were perfect. Nothing at all showed up in that scope. The pain I was having was called Proctalagia Fugax. This can affect anyone at anytime and it’s very, very painful. Nothing can be done for this problem, because it is usually over before any med would actually help it. Usually it lasts 5mins to a half hr. Mine, I must say, lasted generally 4 hrs up to 24 hours with the lingering pain. Not fun.
6 years ago in April, I noticed a huge change in my bowel habits. I suddenly started having uncontrollable diarrhea with blood and mucus. Not having any idea what was going on I just ignored it the best I could and started noticing a slight drop in my weight. This actually was a good thing since I am of the larger size. Well, it kept getting worse and after the summer I decided to see my regular Dr. He checked me and agreed I had blood in my stool and sent me to my gastro Dr. I love my gasto Dr. She is wonderful! Of course I had to have another scope (it had been 2 years since my last one) and this one said I had Ulcerative Colitis – no evidence of Crohns. So for the next 4 years I was put on all sorts of meds for U.C., none with aspirin because I am severely allergic to aspirin also. Well, over the course of the 4 yeas nothing ever helped. Remicade was the last choice and after about 6 months off and on with that I started to have reactions with it. During this whole time I spent most of my time on Prednisone because of my allergies I had very little leeway to try new drugs. Finally in August of 08, I was in a bad way and had to have another scope. Low and behold, it showed Crohns. At this point my Dr said it was time to go off to Mayo Clinic. I saw Dr. Sunanda Kane in Nov. of that year at Mayo Clinic. She agreed that I did in fact have Crohns disease and not U.C. Her recommendation was to have my large bowel removed. This would take care of the Crohns because it hadn’t spread to the small bowel yet and it would hopefully take care of the skin rash I have all the time along with the joint involvement. When I returned home, I contacted my gastro surgeon and set up a date for the surgery for January, 2009. I decided that having my large bowel removed and living with an Iliostomy forever was better than the past 2 years of my life being tied to the toilet and not able to go anywhere. I made it through my oldest daughter’s wedding, but I almost missed my 2nd daughter’s wedding. I did have to leave the reception quite early and made it home just in time. This is no way for anyone to live, always in fear.
Surgery
The surgery went ok. It is a very difficult surgery. My incision was 14” long, I am not new to surgery at all, I have had more than my share, but this one was worse than any before. I ended up being allergic to the pain med I was on so once I said no more meds I seemed to start getting a little better. I was sent home after 7 days only to return because I developed an abscess. Back in the hosp for another week I had a drain put in thru my bottom. The Dr must have been in quite a goofy mood that day because he put the stop cock on my butt, where I sit. I was to drain and flush this twice a day for the next 2 weeks after I got home. Thank goodness for my husband and my son. They had to do this for me. Finally things were going well…. Or so I thought!
During the summer of 09 I started having some pains in my lower abdomen, about the area of the bladder. They would only seem to happen in the early morning when I was having my coffee. I told my regular Dr about this but didn’t push it. I finally decided in November to call my gastro surgeon and he said it was almost time for a yearly check up so in early December I went in and he ordered a ct scan. The scan indicated two hernias. One was small on the incision. The second was approximately 4 inches in diameter around the stoma. There wasn’t any rush to get the surgery done but he recommended I shouldn’t put it off for too long. I opted to have it done right away. So on Jan. 8th of 2010 I had my next surgery to correct the hernias. Well I also had severe scar tissue that developed and it took the surgeon an extra hr to dig and remove that. I was sent home after a week in the hospital only to be re-admitted 5 days later with an infection. The cultures from this turned out to be positive for MRSA. So my incision was opened completely and I had to have a wound team change my bandages every day. I was put on a PICC line for my IV’S so I could eventually go home when the wound vacuum was approved. This took almost 2 weeks. Once again for the grace of my husband and son I have to have IV’S for the first 4 weeks I was home, not to mention the wound changes. I had a nurse who came in 3 times a week but since the incision was right next to my stoma the ostomy bag kept leaching into the wound and contaminating it. So sometimes I was having everything changed 3-4 times a day. It was a very bad time for all of us. The only good things I kept thinking the whole time in the hospital and while home recovering was, I want to be able to play with my grandkids and I want to spend time on the end of my dock up north laying in the sun watching my husband sail by on his windsurfer. So far the summer of 10 is looking pretty sweet!
June 2010
During this time of recovery, I noticed my rash was coming back. It’s on my hands, arms, legs, chest, neck and on one eyelid. The steroid creams that the Dr was giving me just weren’t doing anything for the rash so I went on Prednisone again to try and put the rash into remission. I am currently on my second round of Prednisone and I am hoping this time it will help. When I am on the higher doses it does well, but once it drops to 20mg’s it stops working and I start all over with the itching, bleeding, burning and scratching. So far I am hoping this 2nd round works.
I also had a nose culture done to see if my MRSA was gone. Results were positive for MRSA so I am now on a nasal antibiotic. For how long I have no idea but it has to be taken care of. One would think that 8 weeks on very strong IV antibiotics would kill just about anything , but I guess that was too much to hope for.
I know this is quite long, but my hope is to either help someone out there who has the same problems as I do, or did, or to possibly have someone read this and say “HEY WE KNOW WHAT TO DO FOR THAT.” As for having an Iliostomy, I don’t regret it for one second. It’s the best thing I could have done for myself and my family. I have been married to my husband for 33 years (this July). We have 4 kids and 3 grand kids so far. I am not going to sit back and just watch my life go by from the bathroom. I have way too much life left to live…. Driving my wonderful husband crazy is one of my best and most enjoyable activities. You never know what this old lady will do so watch out world because I’m back!
 

Astra

Moderator
Oh wow Charm
that's quite a story! and inspirational too, you'll be a great asset to this forum!
Someone here will know exactly what you've been thro, hope they can help you too.
So big welcome, glad you found us,
lotsa luv
Joan xxx
 

Lisa

Adminstrator
Wow Charm - what a story!!!

What does your rash look like? I developed one in April that hasn't gone away yet - mine came on after a bout of strep.....
 

Nyx

Moderator
Welcome to the forum :) I think we should start the "big honkin' scar club"! I have a 12" scar from my colostomy surgery this past December.

What a story you have! I can't relate to the rashes, as I never had those (thank goodness), but I can relate to living my life from the bathroom. My stoma was the best thing I've ever done too.

Keep up your good attitude! And keep us posted as to how you're getting on :)
 
Wow! What a journey you've been through. I think you'll find both support and chances to be supportive, especially with all your experiences. Welcome to the forum!
 

Dexky

To save time...Ask Dusty!
Charm, I hope you are in for a well-deserved and very long break from all your ails.
 
a note about my rash.
the rash starts out like dry skin only thicker. then it itches so bad that as i scratch it opens up and bleeds. once this happens it stops itching and just starts spreading, then after about 12 hrs the itching starts all over again... as i said prednisone only works at the higher doses, the steroid creams will help for a few days then they quit working. i have tried anti-fungal creams and again they may work a few days then nothing. i guess it just has to run its course like the diarrhea did. only problem is my hands sting and burn when they get wet. oh well its another day....
 
Hey what is that paso? I had a rash kinda like that, it started off like insect bites but then after 2 weeks they went crusty like dry skin on top.
 

Lisa

Adminstrator
Hey what is that paso? I had a rash kinda like that, it started off like insect bites but then after 2 weeks they went crusty like dry skin on top.

Gutatte Psoriasis.....what I apparently got after a bout of strep...and am STILL dealing with! Another auto-immune 'joy'.....
 

Astra

Moderator
Lisa
I've got that back on my chest! had it on my legs ages ago after taking azathioprine, got it back now on Entocort, so pissed off with it!
Been to docs, he said it's common with our meds, he sees it all the time, and has given me Miconazole + Hydrocortisone 2% cream for it.
yeah, AID joy, alright!
 
the rash kind of looks like eczema but only a tiny bit. when this starts it looks like very tiny little clear bubbles then within a few mins it starts itching ungodly, then i scratch it and it opens then its fine for a while. if this makes any sense at all. it just keeps doing this. they hardly ever scab over they just stay red and very itchy. i must say the ones on my legs do scab over sometimes. anyway if this makes any sense i will be surprised.
i have been to the allergist had tests and they all came back fine. ( this coming from a person whos allergic to everything... i started laughing when this allergist told me i am only allergic to oak trees yeah sure.! the other dr was a dermatologist she did a couple of biopsies and it came back as a topical rash nothing to worry about. this was good so now at least when i am going crazy itching and scratching i at least know its nothing to worry about!" sorry but i get tired of dr's who really don't seem to try and understand what i am saying. moving on....
 

Lisa

Adminstrator
If you get pustules - it could be a form of pustular psoriasis........I have that too on my palm and ankles/feet.....don't always get 'true' pustules - sometimes just little blisters....

my biopsies came back as 'eczema' for my rash - although all signs and symptoms point toward the guttate!.....even the derm thought it was that!
 
If you get pustules - it could be a form of pustular psoriasis........I have that too on my palm and ankles/feet.....don't always get 'true' pustules - sometimes just little blisters....

my biopsies came back as 'eczema' for my rash - although all signs and symptoms point toward the guttate!.....even the derm thought it was that!
the only thing my biopsies said was a topical rash. when i asked what i should do for that the dermatologist said well she wasn't contacted for that only to do the biopsy.
as for psoriasis its not that and as for the eczema its not that either. but one of these days i will find the right answer. thanks for trying to help. have a great day today.
 
Top