Thanks Mom2oneboy! How did the abscess start?
My son was dx after 6 months of severe illness. He was losing a lot of weight (about 8kg I think), fevers, severe anemia to the point of struggling to walk and catch breath, lots of dh and pain. It was truly heartbreaking, and so frustrating trying to convince the Drs that we needed to do something!! They just kept telling me he had a gastric virus or infection etc (as we had just returned from living in a developing country) and kept giving him antibiotics. And yet my child is struggling to breathe and walk!!!!
I did a lot of research and believed it was IBD or celiac. My GP said, no, I don't think so!! Finally got in to see a PedGI (there are only three in our entire state!) who did immediate colonoscopy and came out to tell us he had definite Crohn's, no need to wait for biopsy confirmation. He was put on Imuran and 50mg pred immediately. The pred helped straight away with the pain and inflamation; but within two weeks we realised that he was having a SEVERE reaction to the pred. He was shaking from loss of muscle control and became quite paranoid. Got in to a Psych who talked PedGI into removing him from pred immediately as he is definately allergic. I don't think it helped that he was on such a high dose when he weighed so little at the time!
So, slowly off the pred, no more paranoia, praise God!!!
He continued to improve, though his iron has never gotten back above 6 (it was registering less than 2 when first dx) and I have found that every iron I have tried (and there has been a lot, liquid, tablet, natural, you name it!!) gives him stomach cramps. I am now considering investigating infusions, but it frustrates me that this is all done on my research and not from my Drs suggestions! I know they want to treat the cause, not the symptoms; but this is his life now, and his exhaustion is really something that holds him back. (sorry for the rant!!)
Anyway, he seemed to get better and better, but I was never told he was technically in remission. (Mind you it is hard to get the PedGI to give me his actual results!) As he got well it got harder for him to comply with the meds and harder for me to give them, as they wanted to up the imuran as he gained weight (he has gained 10kg since dx, but is still very thin for his height!) I stopped watching him have his meds, started just reminding him. A month later he admits he is only having them every 2 or 3 days!! This was a month ago. Then he says, "Mum, my bottom is itchy". I thought it was just from frequent bm, (he has continued to have them once or twice a day, but they were always explosive dh, sorry if it's tmi!) The next day he says his bottom hurts and is lumpy. It's late at night. We call my bro-in-law, who is a GP. He thinks it is external hemorrhoids, so we try creams. Next morning he can't walk and is in agony!! We call the GI, of course he is not working and can't see us for a week. We call the GP, they can't see us till next week either, (it is Thursday). We call the GI who says he will call the GP at home and request he see us immediately. We get a call that the GP can see us the next day.
By this time he is in so much pain and my heart is breaking again. He has two enormous 'hemorrhoids' and my husband is away for work on an overnite trip!! We slowly get in to the Drs and he takes one look and says they are thrombotic hemorrhoids and he has to drain them, they can't be left like that. Honestly, I can't even tell you how horrible the next 15 minutes were. As soon as the Dr cut in he realised they were abscesses. I wanted to vomit and faint. I had to hold my son down. We were both crying. It was something that only you guys could understand really. I tried to be so strong for him. We got home and within hours he was feeling so much better but was still quite traumatised; but I was a mess emotionally. I cried, actually I sobbed, until no more tears would come. Has anyone else been there? (It has taken me a few weeks to come to terms with the pain he went through having multiple abscesses drained with a local, I am so mad at myself!! But I didn't know any better!!! I do now. I now know that my son needs to see a PedGI for anything other than a script, and that I need to keep my head out of the sand, and keep researching and learning from others in the same boat; thus I found my way onto this forum!!)
We got in to the PedGI, he is now on Flagyl for at least 6 months. (And I have learned my lesson that I need to watch him swallow his meds every day!) If they continue to drain the Dr doesn't want to touch them (and we are happy with that). He is now back on his meds religiously!! He is good about taking so many. We have him on heaps of vitamins and probiotics because he needs them atm. He is having a salt bath every day and showering after a bm. Does anyone have any other suggestions? I check the size of the abscesses once a day, (which I hate having to do to him!!) and they go up and down each day, but they never have gotten back to where they were. We have decided to try and let them go as long as he is not showing signs of infection and they are not growing huge and still draining. Most days they are the size of kidney beans. Is this normal??
Sorry for such a long post, but it has been good to finally get it all out!!! I have not really shared the whole story before in one sitting because so few people understand!!
Thanks guys, blessings,
Ams xxx
