So miserable. need support!

[JustThatGirl]

So I've been a member for awhile now, but I haven't been on in a long time.

My.Crohn's is driving me crazy. I've had it for years now and haven't felt well for about 3/4 years.

I'm on Humira since August (2014), but sometimes I'm a little late getting my prescription filled. I was supposed to do an injection last Monday, but I couldn't afford it so I'm not getting it until this Tuesday. I also went over a month without at the beginning of the year due to switching insurances. I just called and got the copayment down to $5.00. I'm hoping once I'm on it regularly and consistently, I'll start feeling better.

So to start things off, I've been going to the restroom nonstop. The thing is, it's not even that loose of a bowel movement. It has the same urgency, however, as diarrhea. I'm so sore. It actually gives me cold chills and sometimes I vomit. I finally broke down and got some Imodium. I've never taken it. Will it even help since it's not technically diarrhea? Has anyone experienced this with the constant urgency but not loose stools? What helps?

I'm also way underweight. I'm typically about 105 and now I'm 85. I have no confidence and hate my body. I'm so skinny so NOTHING fits. This has been going on since before I was diagnosed. I just want my old body back. My gastrointestinal just tells me to be patient. I don't get hungry like a "normal" person. I just lack an appetite or get nauseated when eating. I saw a nutritionist last week, but she had no advice. I'm drinking Boost and carnations breakfast drinks. I need to gain!

I'm always so tired and nauseous. It's typically only nauseous enough to make me not Want to eat and feel bad-- but not usually enough to vomit . Next is the occasional but excruciating pain. Whyyy? I can't do crap. My GI gave me Bentyl, but honestly, I don't notice a difference. So it's either go to the ER and get ANOTHER bill, or just suffer.

I hate this disease. I don't care for my GI. I feel as if he doesn't listen or care. He just tells me to be patient. I have been for almost four years. I don't even know what to do about my weight anymore or just feeling well. I got Shingles last month. That sucked, too.

 

[cantthinkstr8t]

So I've been a member for awhile now, but I haven't been on in a long time.




I'm also way underweight. I'm typically about 105 and now I'm 85. I have no confidence and hate my body. I'm so skinny so NOTHING fits. This has been going on since before I was diagnosed. I just want my old body back. My gastrointestinal just tells me to be patient. I don't get hungry like a "normal" person. I just lack an appetite or get nauseated when eating. I saw a nutritionist last week, but she had no advice. I'm drinking Boost and carnations breakfast drinks. I need to gain!

I'm always so tired and nauseous. It's typically only nauseous enough to make me not Want to eat and feel bad-- but not usually enough to vomit . Next is the occasional but excruciating pain. Whyyy? I can't do crap. My GI gave me Bentyl, but honestly, I don't notice a difference. So it's either go to the ER and get ANOTHER bill, or just suffer.

I hate this disease. I don't care for my GI. I feel as if he doesn't listen or care. He just tells me to be patient. I have been for almost four years. I don't even know what to do about my weight anymore or just feeling well. I got Shingles last month. That sucked, too.

I am sorry you are going through all this.

First: Is there another GI you could try? I supposedly have the best GI dr in my city. He will tell anyone that listens he is actually the best in the country. I can't stand him. I used to be able to laugh his arrogance off, but now it is getting annoying.

As for body image issues: I am not as underweight as you, but am a size 0/2. I used to be a size 8. I look at myself in the mirror and feel like a stranger is looking back. No one seems to understand that I do not want to look like this!!

I hope things get better for you-until then, vent away!

 

[FrozenGirl]

I second looking into another GI. I know that treatment takes time to work but 4 years of misery is unreasonable. Imodium might help, just be cautious and take in moderation. Have you had blood work done lately? That could be one reason you are so tired is if you are anemic or low in b12.

 

[UnXmas]

Hi, we recently started a weight gain support group: http://www.crohnsforum.com/showthread.php?t=71109

I have to wear children's clothes sometimes. You're not alone in this.

Imodium is very safe with few side effects and can be taken in high doses as long as there is no possibility that you have a bowel blockage. The reason for that I hope is obvious, but blockage is the one situation in which Imodium and Crohn's don't go well together. Before I got an illeostomy I used to take a lot of Imodium. I think it's possible it could help even though you don't have diarrhoea; it doesn't treat diarrhoea, specifically, it just slows the bowel down. The longer stool is in your bowel, the more water is absorbed from it. So it should reduce the volume of stool, which could mean you will go less frequently and with less urgency. But it could go too far the other way and make the stool too hard and make you constipated. Start with a low dose and work up.

Have you tried many meds for nausea? Let me know if you'd like suggestions as there are many options out there.

I hope you'll get some effective treatment under way as soon as possible.

 

[24601]

I'm sorry you're going through this and that you don't seem to have a supportive or responsive GI to help.

From my perspective reading your account, I think it's really important to know whether you have active disease as uncontrolled disease could explain all of your symptoms - nausea, lack of appetite, fatigue, frequent bms and pain. When you have a Crohn's diagnosis that's always the first think you should look for too. Sound obvious right? But when you've had a GI telling you to essentially ignore your symptoms for an extended period it's easy to forget - everything you are suffering through may be caused by uncontrolled disease and the aim should always be to get rid of active disease.

And of course just because you are on Humira (even with an uninterrupted schedule) that doesn't mean it's working for you - whether you're a non-responder or are not at therapeutic levels.

Have you had any bloodwork done recently? Or imaging or scopes?

It might be the right thing for you, if you have a high level of inflammation right now, to go on a first line treatment like steroids or Exclusive Enteral Nutrition (which might also help with weight gain) to get you into remission (or closer to remission) and give the Humira time to get to therapeutic levels and to assess whether Humira is working for you at this point in time (you may have had response in the past but lost response - Crohn's treatment is in my opinion far more about vigilance than patience!!! Patience can be the opposite of what we need if disease is going unchecked!)

If you feel like your GI doesn't listen or care then he almost certainly is not the right GI for you (I'm also basing this on my own experiences with GIs...I think often you know if someone is not a good doctor for you and yet it's exhausting to change GIs but ultimately worth it). It also doesn't sound like he is a good GI for you too since you have been so unwell for so long and he hasn't changed your treatment.

Whatever is happening with your health you need and deserve closer monitoring, better explanations and more help and someone who is open to changing your treatment if you are not responding.

Good luck!

 

[EvieBaby]

I'm so sorry you're going through this. My doctors are very quick to give me the brush off and its infuriating. I regularly have urgency and often have accidents and bleeding but no one seems to want to do anything about it. I've been feeling bad for a long time but nothing seems to work. I do take immodium once or twice a week, especially if I know I'm going out somewhere and won't be at home to eat and it does seem to work for me.

I really hope you can find someone who is willing to help you and not just need to have their ego inflated.

 

[JustThatGirl]

I am sorry you are going through all this.

First: Is there another GI you could try? I supposedly have the best GI dr in my city. He will tell anyone that listens he is actually the best in the country. I can't stand him. I used to be able to laugh his arrogance off, but now it is getting annoying.

As for body image issues: I am not as underweight as you, but am a size 0/2. I used to be a size 8. I look at myself in the mirror and feel like a stranger is looking back. No one seems to understand that I do not want to look like this!!

I hope things get better for you-until then, vent away!

I'm stuck with this GI until I get off my mother's insurance. That'll be in August.I know what you mean, I hate seeing my bony image in the mirror. Strangers comment all the time. I just want to cry every time someone tells me, "you're skin and bones. Don't you eat?"...

Sorry. I'm being a big baby about it. I'm just tired of being patient. Thank you for understanding

 

[JustThatGirl]

I second looking into another GI. I know that treatment takes time to work but 4 years of misery is unreasonable. Imodium might help, just be cautious and take in moderation. Have you had blood work done lately? That could be one reason you are so tired is if you are anemic or low in b12.

When I went in August I had blood work done. I had low potassium so was prescribed medicine. I went back in November because I was still feeling crappy. He acted like he didn't know why I was even there. "Just be patient" is all he'd say.
I had my mother go with me in August and November just for support. At my appointment in November, he asked if I'd been taking my Vitamin D supplement and I told him no. I didn't know I was supposed to be taking any. He got extremely rude and told me he can't help me if I don't help myself. He claims that he told me at my last appointment my vitamin D was low. No he didn't and my mom confirmed that. He said well you only take it once a week, can you handle that. Then told me to not come back until July.

So, I'm still lost. My mom says if it's the Vitamin D that I'm supposed to take only once a week, I'd need a prescription. He never gave me one. I got some OTC but have no idea if they're the right kind/dosage. I'm scared to even say anything next time I see him.

Does anyone else have low vitamin d? what do you take? Do you notice a difference in energy or anything?

 

[JustThatGirl]

Hi, we recently started a weight gain support group: http://www.crohnsforum.com/showthread.php?t=71109

I have to wear children's clothes sometimes. You're not alone in this.

Imodium is very safe with few side effects and can be taken in high doses as long as there is no possibility that you have a bowel blockage. The reason for that I hope is obvious, but blockage is the one situation in which Imodium and Crohn's don't go well together. Before I got an illeostomy I used to take a lot of Imodium. I think it's possible it could help even though you don't have diarrhoea; it doesn't treat diarrhoea, specifically, it just slows the bowel down. The longer stool is in your bowel, the more water is absorbed from it. So it should reduce the volume of stool, which could mean you will go less frequently and with less urgency. But it could go too far the other way and make the stool too hard and make you constipated. Start with a low dose and work up.

Have you tried many meds for nausea? Let me know if you'd like suggestions as there are many options out there.

I hope you'll get some effective treatment under way as soon as possible.

Thanks. I'm headed over to that group ASAP. I'm so tired of being underweight..That's my biggest complaint over everything.. the pain, the nausea, the fatigue..

I'm glad you guys can understand.

I had Promethazine last year but ran out. It makes me jumpy and agitated. What other options are there?

Thanks <3

 

[JustThatGirl]

I'm sorry you're going through this and that you don't seem to have a supportive or responsive GI to help.

From my perspective reading your account, I think it's really important to know whether you have active disease as uncontrolled disease could explain all of your symptoms - nausea, lack of appetite, fatigue, frequent bms and pain. When you have a Crohn's diagnosis that's always the first think you should look for too. Sound obvious right? But when you've had a GI telling you to essentially ignore your symptoms for an extended period it's easy to forget - everything you are suffering through may be caused by uncontrolled disease and the aim should always be to get rid of active disease.

And of course just because you are on Humira (even with an uninterrupted schedule) that doesn't mean it's working for you - whether you're a non-responder or are not at therapeutic levels.

Have you had any bloodwork done recently? Or imaging or scopes?

It might be the right thing for you, if you have a high level of inflammation right now, to go on a first line treatment like steroids or Exclusive Enteral Nutrition (which might also help with weight gain) to get you into remission (or closer to remission) and give the Humira time to get to therapeutic levels and to assess whether Humira is working for you at this point in time (you may have had response in the past but lost response - Crohn's treatment is in my opinion far more about vigilance than patience!!! Patience can be the opposite of what we need if disease is going unchecked!)

If you feel like your GI doesn't listen or care then he almost certainly is not the right GI for you (I'm also basing this on my own experiences with GIs...I think often you know if someone is not a good doctor for you and yet it's exhausting to change GIs but ultimately worth it). It also doesn't sound like he is a good GI for you too since you have been so unwell for so long and he hasn't changed your treatment.

Whatever is happening with your health you need and deserve closer monitoring, better explanations and more help and someone who is open to changing your treatment if you are not responding.

Good luck!

What is Exclusive Enteral Nutrition? At my last appointment, he did say some people need something along with Humira instead of Humira by itself. He said he wasn't ready to put me on anything else yet.

I haven't had blood work done yet. No scopes or scans since January 2013. Although, I do believe I'll be getting one scheduled when I return, if I'm still doing this crappy.

Thank you for your support..I'll definitely be switching GIs soon as I can. I'm stuck for now think.

 

[UnXmas]

I had Promethazine last year but ran out. It makes me jumpy and agitated. What other options are there?

Thanks <3

I'm currently taking prochlorperazine for nausea. I used to take domperidone, which can also help with appetite. Wikipedia has a full list: http://en.m.wikipedia.org/wiki/Antiemetic

I'm taking Vitamin D that my GP prescribed. It's on a weird dosage schdule where I took a capsule a day for a while and then went to one every two weeks. I often have low Vitamin D because I get sunburnt so easily that I always have to wear sun cream. I don't feel any better when my levels go up though.

 

[24601]

I really think this GI is not only just not right for you but that he sounds like a bad doctor because of his failure to communicate and the lack of monitoring of your disease in terms of scans and scopes. Without that imaging any doctor is just guessing about what's going on inside.

I'm really sorry that you don't have access to a better doctor until August - is there any way around that?

If it were me I probably wouldn't bother to see this doctor again (especially since your appointment isn't until July!) because he doesn't sound at all helpful and the things he says are upsetting. I would go to the ER if you have severe pain, fever and vomiting because they can at last do scans and rule out anything urgent. I know it's expensive but there could be something that needs urgent treatment. Is there any chance that would get you access to another GI consult too?

Exclusive Enteral Nutrition is when you have only a liquid formula diet without normal food and this helps to treat inflammation for a lot of people. Usually it's done for 6-8 weeks and that can be enough to get people into remission and then their maintenance treatment does the work to keep them in remission.

Some people do need more than humira to stay in remission and that would normally be the addition of an immunomodulator like azathioprine, 6mp or methotrexate.

Exclusive Enteral Nutrition could be a good thing to try right now since you're struggling with weight loss and the inability to take in adequate nutrition. Although there are some specialist IBD formulas like Modulen and Peptamen, any complete nutritional drink like Boost or Ensure will give as good results for most people.

I hope you can get some relief from this and find a good GI - I'd start looking for recommendations now because it's really helpful to hear from other people about their experiences with GIs that you could choose and then you can get ahead for seeing a new GI in August

 

[cantthinkstr8t]

When I went in August I had blood work done. I had low potassium so was prescribed medicine. I went back in November because I was still feeling crappy. He acted like he didn't know why I was even there. "Just be patient" is all he'd say.
I had my mother go with me in August and November just for support. At my appointment in November, he asked if I'd been taking my Vitamin D supplement and I told him no. I didn't know I was supposed to be taking any. He got extremely rude and told me he can't help me if I don't help myself. He claims that he told me at my last appointment my vitamin D was low. No he didn't and my mom confirmed that. He said well you only take it once a week, can you handle that. Then told me to not come back until July.

So, I'm still lost. My mom says if it's the Vitamin D that I'm supposed to take only once a week, I'd need a prescription. He never gave me one. I got some OTC but have no idea if they're the right kind/dosage. I'm scared to even say anything next time I see him.

Does anyone else have low vitamin d? what do you take? Do you notice a difference in energy or anything?

I have low vitamin D and was given a prescription from my family Dr. I also take potassium.

I take zofran, phenegran, and reglan on pretty much a daily basis. My family Dr is the one who prescribed them. I do not care much for my girlfriend either.