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12-11-2016, 08:41 AM   #1
Chelsey79
 
Join Date: Mar 2012

My Support Groups:
Pregnancy Prednisone abscesss and Drain

It has been a very long time since I posted on here. For the last three years I have been on cimzia shots and the worked great up until February 2016. I have crohns in my terminal ileum and in February everything just stopped working. I I went from having 6 loose bowel movements a day to 0 for a whole week and I ended up in the ER with them doing an enema that never had any result it was awful. Drove to a second ER and they finally did a CT where I was then diagnosed with proctitis. Super painful but antibiotics helped clear that up pretty quickly.
After this experience I switched Doctors hoping to find someone more active in treatment of my disease. It took two months to get in with my new GI. Finally got into see him and was still on cimzia but had noticed that it was no longer boosting my energy like it did in the first year and I was having more frequent bm. He agreed to do a colonoscopy to see if cimzia was helping or not, in July 2016 of this year. July came and I was so nauseous the week of the procedure I cancelled it. The nausea continued and two weeks later I found out I was pregnant with my 3rd baby. Very stressful considering we had not planned on having a third anytime soon, but I was optimistic because during pregnancy my Crohns has always improved and even gone into remission.
This was different. I continued on my cimzia until September. My bowel movements slowed down again. Every 2 days then every 3 then even further. I associated this again with pregnancy. Went to my ob and they suggested I stop taking iron. (I'm severely anemic btw)
Then everything went downhill. I started having severe pain after eating. Up high and usually worse and night and in the morning radiating to my back. The pain was so intense it took my appetite away completely. This continued for two weeks. I saw my GI and my GP we tried Flagyl, Prilosec, tons of Miralax which caused a trip to the ER for dehydration. Then the nausea started and they added a pill for that as well. One ER trip finally ended up on Prednisone. 40 mg a day and they sent me home also hoping it would work. I began to be concerned for the baby. Which no one seemed to check but no one would treat me or my problem because of the baby either. 8 dr appointments 4 ER trips later I finally refused to leave the ER. My dr came to the hospital and ordered a MRI.
MRI showed a two inch abscess in my small intestine and also a fistula nearby never having had any of these complications I was terrified. They placed the drain after doing a second MRI three days after iv antibiotics the abscess only grew in size. Having the drain placed was awful. I was told I would feel relief after, which never came. I was still having severe pain they couldn't get under control. One night of horrible pain and they finally used enough Dilotid to calm my pain. The drain had about three days of constant fluid output but after that it slowed down a lot to just a few drops and day. They plan to do a drain study coming up on the 19th. I was discharged from the hospital and send home with Percocet, Prednisone 20 mg, and Augmentin. Started new entyvio infusion three days after being discharged but I was told it would be a while before it starts working . Week 1 after first loading dose I was taking 2 Percocet a day and everything seemed to be looking up. No side effects. Week two without an infusion has been hell. I had to start taking the pain meds every 6 hours on the dot. The pain is awful so severe I can barely move when it wears off. I get my second loading dose tomorrow and I am praying for some relief. I really want to get off the steroid and the pain meds asap for the baby. This whole flare has been so emotionally and mentally exhausting I never knew this could be so awful. Especially being pregnant. Really could use some support or just encouragement or any info about abscesses and fistulas. Do they all hurt this bad!? Should I go back and get a repeat MRI? They have told me I potentially need surgery / resection after baby is born, I really hope not I have been lucky to avoid surgery so far. Any answer is so appreciated ❤️
12-17-2016, 06:00 AM   #2
DustyKat
Super Moderator
 
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Join Date: May 2010
Location: New South Wales, Australia
I am so sorry to hear of all you are going through, and to be pregnant as well!

I can only speak of my sonís fistula and abscess, also located in the terminal ileum. He did have really severe pain with his too and could he could barely walk. His was located on the psoas muscle and he had a pigtail drain inserted. He did up requiring a resection as the abscess was connected to the fistula and the chances of it ever closing on its own were next to non existent.

I assume you still have the drain in as they will be doing a drain study?

I donít know what a drain study is but my son had a sinogram done a few days after having his drain placed. This was where they injected contrast to see if the abscess was connected to the fistula. I donít know if this what a drain study is and I donít know what imaging options are open to you aside from ultrasound and MRI. Either way I do feel you will need extensive follow up so they can continue to monitor your progress and I imagine that should include an MRI??

Hope it all soon settles and you have lasting relief!
__________________
Mum of 2 kids with Crohn's.
12-17-2016, 10:39 AM   #3
Chelsey79
 
Join Date: Mar 2012

My Support Groups:
Thank you so much for replying! Yes I have a similar drain in and same situation basically. I came back to ER yesterday to get a follow up MRI because my pain was so out of control. The abscesss I had before has grown 2 cm in three weeks and I now have another one next to it. They had started me on this new entyvio hoping it would help along with the prednisone, but I have read entivyo takes a long time. It's so hard to decide what to do they said my options are to place 2 new drains and drain these accesses and hope I don't get any more throughout pregnancy. Or I can have surgery now on this one part of my small intestine and it will hopefully heal with no complications and I won't have an ostomy. Was his surgery successful during a flare? I have no idea if I should do the surgery now or wait, baby is 22 weeks and after 24 weeks they won't even consider operating because baby would be too big.
12-17-2016, 04:11 PM   #4
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Your situation is certainly a more unique one as you have your pregnancy to consider.

My sonís surgery was delayed 3 months as they wanted to ensure the inflammation had changed from acute to chronic. In other words, once the acute inflammation was dealt with the area of bowel affected should have reduced so the resection wouldnít be as extensive. Mind you as it turned out with my son the size of the area affected had never changed since his diagnosis, what they were actually seeing on the scans wasnít widespread inflammation of the bowel but a phlegmon (another type of abscess) on the front of the abdominal wall. Unfortunately all imaging can have limitations and they never really know what is going on until they get in there. In his case he had no issues post surgery and he remained in remission for 4 years.

The only issue you may face with doing surgery during a flare is the amount of bowel that needs to resected would be greater than if you are operated on when the flare is settled. The reason being you canít anastomose (join) two inflamed sections of bowel as it wonít heal, the joins must free of disease. So for example, when flaring you may have 30cm of bowel affected, add to that a few centimetres each side for clear margins, plus being in the terminal ileum you would likely need to remove the ileocaecal valve and the caecum as you canít rejoin the bowel to these structures so that would add another say ?12cms?. Therefore all up you may have something approaching a 50cm resection. If on the other hand, using my son as an example, the chronic inflammation was reduced to 10cm then the same op would result in about 28cm of bowel being removed. ***Please bear in mind I am only using estimates here for the amounts of bowel being removed during a flare and I may be way off!

This is often the reason a temporary stoma is created when a resection is being done whilst flaring. It allows the for a minimal resection to take place and the stoma then allows the bowel to rest and the remaining inflammation to subside prior to the reversal being done.

I think you need to have a long and in depth discussion with the surgeon and for him to explain to you, as best he can with what he has on imaging, how much inflammation is present, how much bowel he thinks he would need to resect, what the exact procedure is he would be performing, that is a resection of small bowel only or a right hemicolectomy (where the ileocaecal valve and caecum are removed, and what does he think your chances are of needing a temporary stoma. Again bearing in mind that he wonít really know what he is dealing with until he gets in there and sees with his own eyes.

It is such a difficult time for you. I think because of your situation you can really only be guided by the doctors and it isnít unreasonable to ask them what they would do given they were in the same situation. If they are male ask what they would advise their wife/partner/sister to do.

Sending you all the luck in the world that you are able to achieve lasting relief with whatever you choose!
06-11-2017, 03:53 AM   #5
Rubo1983
 
Join Date: Mar 2016
Location: Dublin, Ireland
It has been a very long time since I posted on here. For the last three years I have been on cimzia shots and the worked great up until February 2016. I have crohns in my terminal ileum and in February everything just stopped working. I I went from having 6 loose bowel movements a day to 0 for a whole week and I ended up in the ER with them doing an enema that never had any result it was awful. Drove to a second ER and they finally did a CT where I was then diagnosed with proctitis. Super painful but antibiotics helped clear that up pretty quickly.
After this experience I switched Doctors hoping to find someone more active in treatment of my disease. It took two months to get in with my new GI. Finally got into see him and was still on cimzia but had noticed that it was no longer boosting my energy like it did in the first year and I was having more frequent bm. He agreed to do a colonoscopy to see if cimzia was helping or not, in July 2016 of this year. July came and I was so nauseous the week of the procedure I cancelled it. The nausea continued and two weeks later I found out I was pregnant with my 3rd baby. Very stressful considering we had not planned on having a third anytime soon, but I was optimistic because during pregnancy my Crohns has always improved and even gone into remission.
This was different. I continued on my cimzia until September. My bowel movements slowed down again. Every 2 days then every 3 then even further. I associated this again with pregnancy. Went to my ob and they suggested I stop taking iron. (I'm severely anemic btw)
Then everything went downhill. I started having severe pain after eating. Up high and usually worse and night and in the morning radiating to my back. The pain was so intense it took my appetite away completely. This continued for two weeks. I saw my GI and my GP we tried Flagyl, Prilosec, tons of Miralax which caused a trip to the ER for dehydration. Then the nausea started and they added a pill for that as well. One ER trip finally ended up on Prednisone. 40 mg a day and they sent me home also hoping it would work. I began to be concerned for the baby. Which no one seemed to check but no one would treat me or my problem because of the baby either. 8 dr appointments 4 ER trips later I finally refused to leave the ER. My dr came to the hospital and ordered a MRI.
MRI showed a two inch abscess in my small intestine and also a fistula nearby never having had any of these complications I was terrified. They placed the drain after doing a second MRI three days after iv antibiotics the abscess only grew in size. Having the drain placed was awful. I was told I would feel relief after, which never came. I was still having severe pain they couldn't get under control. One night of horrible pain and they finally used enough Dilotid to calm my pain. The drain had about three days of constant fluid output but after that it slowed down a lot to just a few drops and day. They plan to do a drain study coming up on the 19th. I was discharged from the hospital and send home with Percocet, Prednisone 20 mg, and Augmentin. Started new entyvio infusion three days after being discharged but I was told it would be a while before it starts working . Week 1 after first loading dose I was taking 2 Percocet a day and everything seemed to be looking up. No side effects. Week two without an infusion has been hell. I had to start taking the pain meds every 6 hours on the dot. The pain is awful so severe I can barely move when it wears off. I get my second loading dose tomorrow and I am praying for some relief. I really want to get off the steroid and the pain meds asap for the baby. This whole flare has been so emotionally and mentally exhausting I never knew this could be so awful. Especially being pregnant. Really could use some support or just encouragement or any info about abscesses and fistulas. Do they all hurt this bad!? Should I go back and get a repeat MRI? They have told me I potentially need surgery / resection after baby is born, I really hope not I have been lucky to avoid surgery so far. Any answer is so appreciated ❤️
Hi there I'm so sorry for everything your going through and I'm hoping I might be able to put you at ease a little, I too had an abdominal abscess and fistula while pregnant with my daughter, the pain from the abscess was horrific but wasn't an awful lot they could do with being pregnant, I had mild crohns and unfortunately my pregnancy eccelerated it and it was severe, in the end they had to admit me to hospital and drain the abscess twice as antibiotics weren't working and rare they do with abscess, my daughter was born a little early but had no major problems and is happy and healthy now and I was on multiple antibiotics, anti depressants from everything, steroids, infliximab and pain killers so please don't be worrying about getting off them asap I understand your concern but going into a major flare without your meds could have serious repercussions for you both, I had to have a bowel resection months after and was gutted but I have to say it's been the best thing ever!!! I have my life back my kids have their mom back and I'm so grateful to my surgeon. People always said to me you will look back in this time as a memory and at the time I was like yeah whatever your not going through it, but believe me once your better and you have your baby in your arms it will all be a distant memory. Chin up and pm me if you want x
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