Advice Needed

[Jenamonkey]

Hi everyone and thanks in advance for reading my post. I am having some issues and I'm not sure what to do. I've had pretty constant abdominal pain all week. In the past, the pain was more acute and localized to either the right or left side, not both sides. This has been pretty much nonstop for a week plus and it's getting worse. I've also had really bad fatigue. I'm not bloated or anything, and the pain's not debilitating, but it definitely hurts. My GI has been out of town for 2 weeks, and can't see me until June 5th (she also refused to prescribe anything to me over the phone). I finally went to a GP yesterday and had her prescribe me some prednisone, as I couldn't imagine dealing with the pain and fatigue of this relapse for another week and a half.

I guess I am just scared that something is really wrong with my guts given the length and severity of the pain. I've never had any fissures or an intestinal ulcer or anything, so I don't know what the signs would be. I don't have any blood in my stool, is there any other sure fire signs?

I am just feeling a little overwhelmed. I went to a counselor earlier in the week to help me get a little perspective and within 5 minutes of our session starting he mentioned how Crohn's was all psychosomatic. Needless to say I will not be going back to see him. My son is also 3 months old, and while I'm not getting a ton of sleep, I know the difference between Crohn's fatigue and "oh you're just a new mom". Yeah, I was "just a new mom" before my disease started flaring. Now I'm a new mom who just went back to work with active crohn's and a GI that decided to leave with no backup whatsoever.

I scared that something is going on with my guts, or even with my ovaries, that's not just "normal" Crohn's. I hate to run to the emergency room (I've only been once in my adult life and it was when I was diagnosed in 2009), but again, this pain is long lasting, doesn't seem to be linked to eating anything, and different than what I've felt in the past.

Any advice is really appreciated. Would you all just wait to see your doctor on June 5th? I can call her office on Tuesday and ask her advice too. Or would you go to the ER? We also have urgent care facilities here, but I don't know if they can do xrays or ultrasounds. If you've had any similar experience, where there any symptoms that I'd DEFINITELY be having? I don't have fever or vomiting, although I'm nauseous.

Sorry for the long post, I'm just having a rough week.

 

[NancyHany]

Do you have any diarrhea ? I also dread ER but when you have to go your body LET YOU KNOW that you have to go. If the pain is more than a 5 all the time then I suggest you go to see what is wrong, better safe than sorry. I hope you feel better soon and keep us updated.

 

[Jenamonkey]

I had D earlier in the week but today I've been ok. It's not one of my typical symptoms though. On the pain scale, it's bearable, I'm just worried something is wrong. I think if I knew it was just normal pain, I could probably ignore it, but since it seems different I'm freaked out and concentrating more on it. Thanks for responding! I'll post if i figure anything out.

 

[Trysha]

It might be best to go to the ER
Your symptoms sound unrelenting--- better be safe than sorry
Feel better soon
Hugs and best wishes
Trysha

 

[Jenamonkey]

I'm beginning to wonder if this pain is actually really bad period cramps on top of my normal Crohn's pain.. I'm only 3 months post partum and I'm exclusively breastfeeding, so I didn't even think about it. I'm going to feel totally stupid and enormously relieved if I start soon. If nothing changes by tommorow morning I'm going in to urgent care though.

I haven't had debilitating cramps since high school. I am hoping this is what it is!!

 

[Jenamonkey]

Thank you all for your help.

 

[Txarmywife]

Hi Jena sorry you're not feeling well. You know your body best so if the pain is too much for you or you think something is wrong...go to the ER or urgent care. Urgent care generally all have X-ray, ultrasound and ct equipment and are usually quicker and cheaper than the ER. You mentioned that your GP gave you a script for Pred...I'd give it a few days to see if that helps. If its a flare causing your pain you may fix the Pred does the trick to tide you over until you can at least call your GI again on Tuesday to ask for advice or a quicker appointment. There isn't a colleague of your GI you could see? I'm sure that's really frustrating...believe me I've been stuck in between appointments myself recently and it sucks! Esp when you feel so crummy and can't even see someone to get relief. I was in your position and I went to the ER Thursday and unfortunately got admitted to the hospital. But my gut (rather literally) told me something wasn't right. I think we know our bodies pretty well and what's normal for us so listen to what your body is saying. I actually started flaring when my son was 3 months old also. I think the stress and hormones readjusting along with an infant contributed to flares post partum. I hope you get some help soon.


I also noticed ur in Austin I'm at Fort Hood we r neighbors!

 

[Jenamonkey]

Hi! I just wanted to send an update. It was definitely not cycle related .. all Crohn's. I think *thinking* it might have been cycle related helped me relax a little though and ignore the pain. I'm still having some pains, but nothing as severe as I was having. The prednisone kicked in yesterday on day 3, and I have a LOT more energy, which has seriously improved my state of mind. I just want to say THANK YOU to everyone who responded. For me, the worrying and feelings of being alone are the worst part of this disease. Your words of encouragement really helped me through the weekend. I really appreciate you all reminding me to trust my judgement and trust my body.

@txArmyWife, we are neighbors!! And I see you're expecting #2! Congratulations!!

 

[ThatsWhatSheSaid]

I am glad to hear that you are starting to have some relief. Crohns is very isolating because you can surround yourself with people who love you and care but they don't really understand. At least for me, I often look ******, have lost weight and have mouth sores. But that is about the only visual indicators anyone has as proof to what I am saying I am going through. Plus, and I wanted to start a thread on this at some point, people are always asking how I feel and how I am doing out of kindness but I feel I am letting them down if I don't say I am doing better, you know? I hate to even tell my mom and fiance sometimes because of this. Anyway, very happy for you that you are feeling a smidge better!

 

[Jenamonkey]

@ThatsWhatSheSaid - You are so spot on with the feelings about letting them down! It can be such a catch 22. I don't want to constantly talk about how sick I am because frankly, if there's nothing more I can do about it, I don't want to think about it. The flip side to that is if I don't "complain" enough to my husband he just assumes I'm fine and we end up getting into an argument because I don't ever want to do anything. I feel like a complainer if I tell him how I'm feeling, but if I don't then it's easy for him to forget that I am in fact sick. It can be such a no win.

On the looking shi*tty, I am willing to bet you are way hotter than you feel most of the time ;-)

 

[ThatsWhatSheSaid]

That's probably true. :ycool: Make-up does wonders! Probably why I love it so much!

How did your pregnancy go? Were you in remission when you got pregnant? If so, did you stay in remission throughout? Were you on any meds during the pregnancy? I see you are on Remicade now. Do you like it? Did you have any side effects?

Something has to change with what I am doing because it is not working presently....I've been holding out on going on the stronger meds because they scare me and I don't want to put that in my body before I have kids, you know? But I don't really know if I have the option to wait because I understand that it is bad to get pregnant when you're not in remission. I just am waiting on calling my GI until I have a plan for myself because I know what direction he wants to take me in. I'm scared about most of the drugs that are available as options, you know?

 

[Jenamonkey]

I was actually on Remicade, Pentasa and prednisone when I got pregnant. I took the Prednisone for pretty much my entire 1st trimester, was on the Remicade until the beginning of my 3rd trimester and continued to take the Pentasa the entire time. It was a planned pregnancy, so I did a lot of research on the Remicade before I started taking it as I knew we wanted to have kids in the near future (and the Remicade isn't just something you start and stop taking). Hearing from ladies on this forum who had "Remicade Babies" helped me immensely when I was faced with deciding on my treatment before we started trying. I think I was in the same boat as you, I dreaded putting all the drugs in my body, but I also knew I had to address the Crohn's.

I guess you can say I was in remission when I got pregnant, but it was due in large part to the steroids. I did stay in remission for my entire pregnancy once I tapered off the pred and I have to say I felt FANTASTIC. My doctor says remission happens a lot of times during pregnancy because your body is suppressing your immune system so you don't reject the baby. Really, when we decided to start trying, I had determined that there probably wasn't going to ever be an IDEAL time, so I had to trust in my doctor and all the research I'd done and just go for it.

As to the affects of the drugs on my baby, from what I understand the most common issues with steroid use during pregnancy are low birth weight and preterm delivery. My son was 5 days late and weighed 8 lbs 10 ounces! I'm currently exclusively breastfeeding him on the Remicade, Pentasa and prednisone (although I wait 4 hours to feed him after taking the pred just to be on the safe side) and he's doing great.

As far as Remicade and pregnancy, all studies I found indicated it's safe. If I have another baby while on Remicade, I will most likely continue the Remicade throughout the third trimester. The studies I read indicated that it probably doesn't pass through the placenta until the sometime in the 3rd trimester, which is why I skipped a treatment. From everything else I read I also gather that the molecules are likely too large to pass into breastmilk, and even if it is, I believe the baby would just digest it like a protein and pass it into it's stool. I read a study that tested the Remicade levels of babies who's mother's took Remicade throughout the 3rd trimester and then EBF (exclusively breastfed) the infants. While they did have traces of Remicade when they were born, those levels quickly fell. That was enough proof for me that breastfeeding on Remicade was "safe". (Sorry to go on about breastfeeding, but breastfeeding for a year has been shown to help decrease a child's risk for Crohn's so it's really important to me!)

I totally understand the not wanting to go on the stronger meds though. I was really freaked out about the drugs and trying to get pregnant (you can probably look for some of my posts on here asking people to share their experiences with me!) I will have to say I'm pleased with my current meds and I'd would really encourage you to try one of the "bigger gun" meds if what you're on isn't working. I was really resisting getting back on the prednisone, and the difference in how I feel right now as opposed to yesterday morning (it really kicked in last night) is INSANE. I am sitting here thinking "why did I wait so long to get treatment?" and "how in the hell did I not realize how much the symptoms where affecting my everyday life and attitude". We went to visit my Mom last month for 10 days and I think I left the house 4 times. I can't believe that didn't trigger an "oh wait .. this isn't normal!!" for me.

Anyway, that was a LONG rambling response! I'm no doctor, but I now have first hand experience with it all and I would love to share it with someone. I was really worried about exactly what you said, and reading all the studies and talking to women who had been there and done that really helped ease my mind.

 

[ThatsWhatSheSaid]

Ha ha no!! That was a perfect response. Exactly the kind of feedback I was looking for. And I didn't know that about crohns and breast feeding! I sincerely appreciate your help. I have found a lot of solace here in the last few days and am very grateful.

Did you experience any side effects going on the Remicade? Are there risks associated with it? I don't fully understand the differences between the 'big-gun' medicines but my GI doctor wants me to do a 6mp. I know I've said it on other threads, don't remember if I did here and I'm on my phone so it's a little more annoying to try to navigate...anyway sorry if this is redundant but I also have panic disorder. My fear with the 6mp- in addition to not being allowed on it for 6 months prior to pregnancy- is that it can also cause cancer even in patients only taking it for crohns treatment. But the signs to watch for with this fast killing cancer are all crohns symptoms. I don't know how well that would go for me. I'm afraid I'd experience a normal crohns symptom and whirl into a tizzy thinking I had this horrible cancer. I know my fiancé is really hesitant about the 6mp from the research we've done. Is Remicade just a different biologic?

 

[Jenamonkey]

I haven't had any side effects associated w/ the Remicade. I do know some people have allergic reactions to it, but I haven't had any and I took a 6 month break from my infusions. Of course, I just had "ramp up" infusions (one infusion, then 2 weeks later the 2nd, then 4 weeks later the 3rd) and I'm not seeing any relief yet. I am going to ask my doctor about getting that antibodies test when I see her (FINALLY) on Friday. It's possible I've built up a resistance to it.

I wish I had more info on the 6mp, but I'm afraid I don't know a lot about it. It seems like Remicade would be a better option for you if you're considering pregnancy, since it's considered a Cat 2 pregnancy drug, which is the same as Tylenol. As far as Remicade increasing your risk for cancer, I read a really interesting study before I started my treatments that postulated the Remicade didn't do anything to CAUSE the cancers, but that it might have exacerbated the situation if you were already predisposed to them. I can't find it now though! For whatever reason, reading that made me feel a lot better.

Oh and I TOTALLY get worrying about symptoms that could be normal Crohn's, or you know, CANCER. When I got pregnant, I still had some gut pains and until I had my first ultrasound I was convinced I had an ectopic pregnancy. I have come to realize that most of the literature out there really does a disservice. The drug companies just put a big DO NOT TAKE THIS MEDICATION UNDER ANY CIRCUMSTANCES DURING PREGNANCY, when really there's no evidence at all to support that, they just don't want to be held liable. I really wish they'd just say "We don't know, so use your own judgement." That's why I like reading the actual research papers that list the test group size and everything they adjusted for.