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Quick update to my seemingly never-ending cycle

Since my surgery last January, I've still had problems. My new doctor did all kinds of tests and I am in fact still flaring and not in remission like my last doctor had stated.

Last thursday I started getting a worsening "ache" in my lower right quadrant, and didn't think much of it. Friday and Saturday it was becoming so unbearable. I finally went to the urgent care on Sunday and they basically gave me fluids, pain meds, and nausea meds and sent me on my way with no testing. I was told to follow up with GI the next day.

I talked to my GI and he had me get some labs done. My CRP which was at 3.4 on March 5th had jumped up to 85 when drawn on Monday. Meanwhile, I'm still taking the vicodin they sent me home with and making it through the days. My doctor called me again today and wanted me to have labs drawn again to check my CRP and my liver enzymes. My liver enzymes have been highly elevated for a while now, but this time seemed they were even worse. I have an appointment next week for an MRCP as they think I may have PSC.

Anyway, I was told to bump up my entocort back to 9mg a day, and if my CRP comes back higher then they're thinking of admitting me to the hospital to have a fast track to testing and figuring this out quick. He's afraid I have an abscess or maybe I had a partial blockage that has started to resolve itself. Can they just fix themselves? Also, if I had an abscess in there, wouldn't I have a high fever and stuff like that? I've never had an internal abscess, so that's a new one for me.

Thanks for taking the time to read this :) It's always something with me!
 

Cat-a-Tonic

Super Moderator
Aw Manzy, I'm so sorry to hear this. Your last update that I read, the one about juicing and being able to eat a salad, was so positive - I really hoped you were on the path to feeling well long-term. As for your questions, I don't know much about abscesses and haven't had one myself, so I don't know if they can just go away on their own. I would guess it would probably have to pop and drain first? Not entirely sure though so hopefully someone else with more knowledge in that area can help. A partial blockage could be able to go away on its own, but of course it also could worsen and become a full obstruction. And if there is a partial blockage, there's probably a reason for it, like narrowing/strictures, so I would think the underlying issue causing it would have to be addressed. At any rate, I hope you can get it figured out without having to spend a lot of time in the hospital. Good luck with the liver stuff too, I hope it's not PSC! Sending you a big hug and hoping for a better update next time!
 
Thanks cat :). I know. I was doing so well and it went down hill quickly. I just don't understand the stupid disease. It's very frustrating!
 

Cat-a-Tonic

Super Moderator
I don't understand it either. I wish there was just some magic treatment that worked well for all of us. I'm sure it is really frustrating, I feel frustrated for you! It's crazy that your CRP jumped that high in just a month. When do you get it tested again? Are you feeling any better at all since upping your dose of Entocort?
 
I had another blood draw done yesterday, so he's going to call me today and let me know what to do. The pain has subsided a lot. I'm really thinking that maybe I had a partial blockage and it just resolved itself on its own?
So I do feel a bit better than I was :)
 

Cat-a-Tonic

Super Moderator
That sounds promising and I'm glad to hear it! I hope you continue feeling better and that the issue has resolved itself. I hope the bloodwork comes back good too!
 
Thanks cat :). Bloodwork still came back bad, but we have agree that it the pain comes back that I go right to the ER where my doc can see me. I have that MRI on Wednesday and he's hoping it will give him a better picture of what's goin on. In the meantime I'm ok. Feeling really dehydrated and faint when I am up for very log, but I'm making do.
 

Cat-a-Tonic

Super Moderator
Best of luck with the MRI! And I'm sure you know the drill, but please go get IV fluids if you continue being so dehydrated. Good luck and I hope you're able to take it easy and rest up until Wednesday.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Just saw this - hope you get sorted out soon! Have you ever been checked for kidney stones too? something else to look for as the pain can present as abdominal (mine did!).....
 
Well, I had te MRI and my GI called me this morning. It looks as though I do have significant sclerosing of the bile ducts, but so far I have no liver damage thank goodness. He said it does seem as though I have PsC, but he wants the hematologist to confirm it. I see him on may 10th. I'm hoping he proves me wrong! I've been quite upset his morning about it. I feel a bit hopeless and as if somehow I did this to myself. That's crazy, right?
 

Cat-a-Tonic

Super Moderator
Even if it is PSC, you didn't do it to yourself so please try not to be hard on yourself, although it's normal to be sad about something like this. Sending you a big hug! I'm going to tag Dexky here because I believe he's said his son has PSC, and maybe he can give you more info. I don't know much about PSC myself so I'm sorry I can't be of much help. Best of luck on the 10th, hun. I hope they are wrong and it's not PSC after all.
 
Thanks cat :) I think you are right. I forgot, but I do think dexky's son has it, too. I will let u know when I find out for sure.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Manzy, yes unfortunately EJ does have PSC. He's been dxed with it for a little over 3 years. He's been on ursodiol (a bile thinner) for all that time. He hasn't had any ill effects from psc so far. To be completely honest, I really don't know as much about it as I should. It's very frightening to read about and I just can't. I am a background member on PSC Partners on facebook. You may want to join as most of the members are adults with the disease. There are many post transplant success stories on there:)!!

I'm sorry to hear it though Manzy:( It's a serious disease and you've had so much trouble keeping your ibd in check. I hope they've caught it early enough that you have many years before you have to consider transplant.
 
Thank you dexky! I will look into it on Facebook. I sent you a message too there :) I was freaking out a bit earlier today and didnt quite know what to do with myself. It is so scary reading about it. I really hope I have a long time as well. I'm so glad ej is doing well.

The MRI also showed that my crohn's has spread again further up I to the small bowel, but that just disnt seem as prudent to me at the time then hearing about the PSC. I am trying not to freak too much until I see the hepatologist, but it's hard!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Think positively Manzy!! They are learning more every day and by the time you (or EJ) might need transplant they may be able to cure it:)! I saw an article recently that an Israeli research doctor had isolated the gene responsible for sclirrosis (not the same, I know) but they believed this would lead to advanced treatments for liver disease. I am short on details but I try to focus on the positive:). Also, I saw an article that some docs figured out how to keep a liver alive outside a body!! Again, no detail but gooooood news for anyone facing liver disease! I'm sure it's just the beginning!!!
 
Thank you!!! I am trying to think positively! That's why I'm happy that I don't have liver damage yet, which is great news for me now :).
 
Whew. Finally, after a week of nonstop vomiting and upper abdominal pain, I am finally feeling better! I was switched from entocort to prednisone, since it seems that the Crohn's was getting worse despite the entocort. I'm down about 15lbs, so I'm hoping to be able to gain some weight back. I'm not really underweight, but under the weight I feel comfortable at. It's just such a weight off of my shoulders when I can finally eat and not feel so crappy. I have a long way from feeling "good", but I feel SO much better!

Now, if I can just get this stupid anxiety out of the way about meeting with the hepatologist, I think I will feel lots better. I don't see him still until the 10th ad the suspense is driving me nuts!
 

Cat-a-Tonic

Super Moderator
I'm glad to hear a somewhat positive update from you! I hope things continue to get better. Pred is great stuff for appetite and weight gain, that's for sure! :) Hang in there, not long now until the 10th. Best of luck, I've got my fingers crossed for you and am hoping for some good news.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Good to hear you're feeling better Manzy! Hopefully your anxiety is unfounded and you can leave one support group behind:)!!
 
I am scheduled for a liver biopsy on Monday the 20th. Unfortunately, the GI and liver doc have ruled out other possibilities for my liver abnormalities and have concluded that I do have PSC. Hopefully, by some miracle, they'll find out monday that its not, but I tested negative for everything else. I believe the goal of the liver biopsy on Monday is to see what stage the PSC is in.

On another note, I am feeling a bit better again. I had another week of not being able to eat and with severe nausea and vomiting. We upped my prednisone, and I finally started my Cimzia shots a couple of weeks ago, so hopefully all of that will really help me out soon :) It's been a bit of a roller coaster ride over the last few weeks, but I'm coming out okay. I'm feeling better about the PSC issue over all and am much more relaxed about the whole ordeal.

I hope all of you guys are feeling well!
 
The saga continues!

I had my biopsy done last Monday. I do have PSC. I also have grade 5 out of 8 fatty liver disease, which makes no sense to me whatsoever. I'm not near overweight or anything. Anyway, I also have inflammation of the liver. They think I could possibly have autoimmune hepatitis as well, but since I am on steroids right now, the test came back inconclusive.

As far as the Crohn's goes, well, I'm not sure what's causing my problems right now. I've been having the nausea and vomiting and nasty diarrhea again. I went to the ER last night and got fixed up. They wanted to admit me, but I drove myself since the husband was with the baby, and I just thought that would cause a headache. Anyway, I still wasn't feeling well when I left, I normally feel 100 times better after getting fluids. This morning, I'm still feeling weak and my heart is racing. I have called my GI doc as the ER doc told me to follow up with him today. I'm thinking I will probably have to go back in, which is fine, I should't have been stubborn yesterday about it. It just makes it all hard with not having any family out here and having the little one. Luckily, my husband is a Marine, and they have been awesome about giving Tom the time off that he needs through everything I've been going through. I just feel guilty about it all, and I don't know why.

I want nothing more than to just freaking feel better and be able to take care of my little one, and not feel like a horrible parent.

I know things will get better, but with all of this new information I think its all getting to me.
 

Cat-a-Tonic

Super Moderator
Oh goodness, I'm so sorry to hear it, this is terrible news. :( I didn't even know there was an autoimmune type of hepatitis! Is there treatment available for any of these issues? What did your GI say, did he ever call you back?

Sending you a big hug. I hope things can somehow improve, even just symptom-wise if nothing else.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
(((Manzy)))

None of this is your fault Manzy!! You're a wonderful mother doing the best you can in a shit situation! Sadie will understand all that someday and be stronger and more compassionate for it! You just take as good care of yourself as you do her and Tom!!
 
Cat- autoimmune hepatitis is treated with steroids, so that's why they can't rule or our totally yet. My I did call back and he have me some potassium pills to take and some pain meds and told me to come back to ER of I got feeling worse. Well, this morning I was feeling worse so I came back and the er six talked to my GI and I am being admitted. They're giving me IV steroids and pain/ nausea meds and want to do some tests to see what the heck is makin me so ill. I honestly thing I'm just flaring again because I haven't kept the steroids down much.

Thank you Mark for the encouraging words :) it's just been so hard lately with all of this going on, and now I'm far away from home and don't have much help, so when I get so sick it makes it harder. I know tom is by himself to take care of Sadie. And him taking off work and everything! Ahh there's a lot of guilt and I know it's stupid. :(
 

DustyKat

Super Moderator
Oh Amanda...:hug::hug::hug:

I am so, so sorry to read all this. :( I hope you can get things stabilised and you are then starting to feel better. Lord knows you deserve it!

Sending loads and loads and loads of love, luck and healing thoughts your way. :Karl:

Dusty. :wub:
 

DustyKat

Super Moderator
AND a big hug to Miss Cutie Patootie! :kiss:

You must miss her so when you are in hospital. :ghug:
 
Thanks dusty :)

I am back home now. Was in for 3 days. Had an endoscopy and MRI and I have severe inflammation which is why I was throwing up so much. I am back home and doing better, but still in a great deal of pain and having some bad depression. I'm sure it's because of the steroids and all the other things going on. I just want I feel better!

The hospital stay was a bit if a nightmare. Woke up the 2nd night at 3 in the morning in terrible pain and realized my vein had blown. They stuck me a total of 18 times trying to get a new line started. Next time I'm just going to ask for a picc line or something!

I'm tolerating liquids well, but still cannot eat. I'm on 60 of pred so hopefully that will fix thugs quick.
 
I did miss my little munchkin very much!! Tom was so great taking care of the both Of us while I was in! :) she was super excited to see me though!
 

DustyKat

Super Moderator
Bloody hell, what a nightmare! :(

I'm not surprised you feel the way you do hun, you have already been through so much without these latest setbacks. :hug:

Sadie is absolute treasure Amanda and no doubt the light of your life but even for a person with robust health a little one surely takes its toll, so you have that on top of everything else too. Not that you would have it any other way mind! :)

Thinking of you, :heart:

Dusty. xxx
 
Sadie really is awesome :) That little girl makes me so happy (most of the time! LOL).

I had a followup visit with my GI yesterday and basically just checking in to make sure I'm okay after my recent hospital visit. I have to stay on 60mg of pred for another few days and then I'm going to start tapering week by week.

I had started Cimzia about 6 weeks ago, but my GI and a fellow of his agreed that its not working quickly enough as I need it to. They are going to try and start me back on Humira in hopes that might help quicker and better. They didn't seem to think Cimzia was all that great as far as treatment goes. I was on Humira for about 4 years and stopped taking it after I had Sadie because I had a huge stricture in the small intestine. They're hoping that it's been so long that I've been on it, maybe it will work its magic for me like it had done before. Fingers crossed! :)

They vomiting has mostly stayed at bay, but I haven't really tried to eat much since I've been home. I threw up yesterday a little bit, but I tried to eat something I really shouldn't have, so I'm sticking to the mashed potatoes and rice I've been doing.

My energy level is low, and my patience/temper has really been taking a toll on me, and I'm sure Tom and Sadie. I'm really trying my hardest! I'm just so thankful I have such a loving, supportive husband through all of this.
 

DustyKat

Super Moderator
Oh man Amanda, I hope more than anything the Humira weave its magic for you again.

Sending loads of love, luck and healing thoughts your way...:Karl:

Dusty. xxx
 
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