Hi, I have had Chrohn's for about 15 months, I have been admitted to through the emergency department at the hospital three times due to severe flare- ups.
First time I got so sick I ended up in ICU after, ( I managed to get day release form hospital to walk my Daughter down the isle on her wedding day, how could a Dad miss that). I am feeling much improved after release from hospital about three weeks ago.
The only problem I am still having is severe left groin pain (like a hernia pain which I have had a couple). The Gastro Doctor when I asked about the pain just said it's all part of the Chrohn's but no explanation as cause/cure.
The pain is so severe that I need two Endone painkillers just to get up and moving in the morning, pain range 8 to 10. I am lately experiencing similar pain during the remainder of the day. I have contacted the hospital a number of times by email or phone calls and have never gotten any indication of why I have the pain. I did go to a different hospital that treat me for osteoporosis and type 1 diabetes, the Doctor checked the area for a groin hernia and said I had what appears to be a minor hernia but was not consistent with the amount of pain in the 8 to 10 range (I have reasonable tolerance to severe pain). I am seeing my specialist on the 1st August, I hope to get this sorted out then as I have be very disappointed with the lack of medical support, I also think it's really poor to be living on painkillers without any explanation as to what is causing this problem. If anyone has had similar problems I would appreciate some information on the cause/cure if they got something that stopped similar conditions. Thanks Ian
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Have you ever had a fistula? could possibly be that. When I had groin and peritoneal pain I was rushed thru for CT in case it was what they call a pelvic collection due to infection. Are you experiencing spikes in temperature - esp in the night?
Im not surprised by your frustration regarding lack of medical care.
Thanks for your reply, my temperature seems stable, the fistula I asked about in an email to the IBD Nurse but got no reply. I have waited this long for an answer to the severe pain, I am seeing the Gastro. Doc. on Monday, I am not leaving his office until I have a satisfactory answer to this problem.
Sorry you're in pain hun. I've had full intestinal crohns for 26 years now and nothing has changed. Over those years I would (and still do) get various pains and issues that seem almost impossible to link to IBD! Every time something new cropped up my medical team would lay the blame on Crohns. To a point I rarely see any Dr now unless its an emergency. Its this along with everyone only having a vague knowledge of basic care for all IBD patients (Nurses, GPs, Jr Drs etc that haven't specialised) but especially the teenagers (I was 15 on an adult ward, surrounded by peope saying they were dieing of crohns and the nurses didn't or couldn't treat me properly! I was a scared child!) that made me go into nursing! With that and the wonderful world wide web I began to understnad that 9 times out of 10 one way or another most issues after IBD DX can be traced back to IBD. Whether directly, or secondary because of the effect our diet or lack of has on our total bodies. Or the steroids damaging our fundamental make up, the cytotoxic meds screwing with our immune system even more (Yay cos that what we need when our immune system hates us eh?) the TNF blockers doing things that were unheard of when I was first ill even the fact that Auto-immune issues don't like to be lonely so they gang up virtually everything is linked to The Great IBD!!
Now, don't get me wrong, I'm not telling you to suck it up and get on with it, you have the one thing I never did. The internet! Ignore all the pity party and the sites that say if you have a headache and a cough you're dying, go for the BNF sites, or acredited sites and even have a look around forums etc (see if any have medical staff on their memberships etc!) Find out facts of what this could be, might be and definitly isn't, print them off. Talk to support groups on line see if anyone has had this and even talk to your IBD nurse or surgical gastro nurse (if you can find one email and ask their opinions, most will help if they can!). Then go to see your specialist, make sure its the head honcho you see and lay that proof on him/her!
You could always do what I had to do as didn't have a lot of choice but to except and agree with your dx so far, take the pain killers and hope it goes away.......but! AI diseases don't like to be alone! I had groinal cysts, alot of them, over the years. I was told the odd 2 or 3 were normal in IBD. I listened. By the time i had to have my bowel removed I had 5 or 6 permanent ones, they were surgicl removed and would come back. After my op and now only on my maintenance meds these cysts held a party in my pants! I now have 9 permanent tracking cysts, 3 part timers and once a month they double up for a week. I actually have Hydradinitus suppurativa. A close friend of IBD but so close in the early stages they can look like IBD issues. At a closer look and investigation they would have found it at stage 1 where it would have been quite manageable. By the time I had my op 5 years ago it was stage 2, got worse when I came off the meds and is now 2/3 borderline! With nothiing I cn do but suffer, wait for it to get worse then go back on the meds that have severly damaged the rest of my body when I took them for IBD, wait for them to fail then go under multiple surgeries for the rest of my life to skin graft and remove glands in a cycle!
This sounds like I'm trying to scare you, I really don't mean to but if it gets you researching and browsing and being a pain to your GI until they do more than just brush you off with its IBD then good! I'm kinda happy I'm scaring you! It may not be HS like me, it could be IBDor secondary issues but it could also be one of the plethora of alternative auto immune conditions masked by the IBD at a stage you could ease the symptoms.
Google has given us a chance to not just obey and follow our medical teams, the ability to research and question and find our own answers is a miracle (believe me, I came from a small town with a tiny library where I had to do my pityful research!!)Our Med teams will hate it, you will annoy them by going in nd saying..'I read this online' but most good teams will also know that not every Dr knows everything and the days of Patients possibly knowing more than they do is well and truly here. If your team don't listen get a new team! A new hospital! A new Dx!
Go and do what people like me never had the chance to do....Stand up! Tell them you want more than the 1st dx and show them the proof etc!
Thanks for your response, I am determined to get some answers and help on Monday, I don't think I have found the best sites that that cover all I need to know. I am fighting too many medical conditions at the same time, will be glad to get off some of the meds. that mess up the type 1 diabetes. Not doing too bad though, think I have gotten on top of it now.
I am fine at the moment with no other problems except the pain.
Seen the Gastro Doc. today, sending me for an ultrasound, tested me for a hernia, none found, I asked could it be an abcess ? He said maybe and offered that the condition plays funny with nerve endings ? Hopefully I can get the ultrasound done tomorrow.
Ultrasound showed two small hernias, still can't get over the pain from these, I have had a few hernias before but they were never this painful. No sign of any bowel connection, so that's good. Going to see a specialist on the 11th, hoping I will not need an operation.
It turned out to be a hernia which was operated on and repaired then kidney stones that were removed. Now doing well, Crohns is not giving any bother due to infusions
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