Newbie Story

Hi!

My name is Becca and I've been diagnosed with Crohn's disease for a few years now. I was lucky with my diagnosis in that it only took one colonoscopy to diagnose it. The doctor told me it was "textbook Crohn's." Anyway, I was in college at the time and had to take a break until I got better. I started on Remicade which put me straight into remission, but as most of you know it is a ridiculously expensive drug.

I continued college and graduated almost a year ago, planning to move down to Louisiana from Ohio to work in the movies. Last summer however, I developed a fever that would not go away. It lasted literally all summer and I got diagnosed with Histoplasmosis (a lung disease/bacteria thing) caused by my immune system being down caused by the Remicade.

I was instantly taken off the Remicade (which I was planning to get off anyway because of the price) and luckily was able to get into a drug study for Histoplasmosis. I got better from that and was able to make my move in February of this year with a roommate.

I was doing fine until I thought I was having a flare up in May. I put off going to the ER because I remembered how essentially useless it was. Then one morning a severe pain woke me up and I decided to go to the ER. I found out I had a tear in my bowel. I was hospitalized and had to have surgery to remove 4 inches of my intestines.

Anyway, I'm six days away from my month mark past the surgery and I'm doing okay. I met with my new GI who seemed fairly helpful. He wants to start me on Pentasa and since there didn't seem to be any Crohn's in my system after they removed the tear, he wants to wait two months to see if it stays gone.

I'm mostly symptom free minus this one really horrible bathroom issue. I keep having diarrhea and I started taking Imodium-AD which the doctor said he recommends. It took care of the diarrhea but now I feel constipated. And if I push too hard in the bathroom, I get nauseous. Today I almost vomitted into my bathtub which is a horrible experience. I mentioned my nausea to my doctor and he didn't seem to say anything about it.

I haven't started taking my Pentasa yet 'cause I'm waiting for some money to come in, in case it's expensive. So I'm hoping that takes care of the some of the problem. It's just such a catch-22. The diarrhea medicine takes away the diarrhea but makes me feel constipated, ugh. Also I get cramps after I use the restroom, like I still have to go but nothing will come out. Taking hot baths sometimes offers temporary help, but it's still miserable.

Anyway, I joined this forum 'cause I needed some support and you know to feel like I'm not alone. My mom has mild IBS so I can talk to her about the grosser symptoms but she lives a good 15 hours away now. My roommate's supportive, but I already feel so self-conscious having to be in the bathroom for longer than a healthy person so I don't like really discussing it with her.
I always try to remind myself that people have it worse than I do and that I've been lucky. I got diagnosed quickly and I've spent most of my time in remission except for the recent surgery, but I dunno it still sucks you know?

If anyone has any advice about the nausea while having a BM, it would be greatly appreciated. If not, I'm glad I found this forum and hope to be able to help anyone I can. Thanks!

Hi Becca and a big welcome to the forum Sorry to hear you are having issues but I'm glad the surgery went well. Diarrhea is quite common after resection as the bowel settles down again, so it may only be a temporary thing. I do have a few issues with it since the op, but not on a regular basis and I find if I avoid fatty, oily foods it helps.
I'm going to tag Dusty Kat as her two children take Psyllium Husk which is a natural treatment for D and she'll be able to tell you a bit more about it.

Hi becca81 and :welcome:

I'm sorry to hear about the issues you are having post op and also having to worry about money for medication.

There are two very different schools of thought when it comes to dealing with Crohns post operatively. Some GI's will not prescribe any maintenance medication and the others do. For my own children they were started on Imuran immediately post op and have had very good results with it.

They do both suffer with bile salt malabsorption diarrhoea following their resections and my daughter was initially put on Questran Lite. It is a powder you mix in water and it helps absorb the salts and bulk up the stools. It did work for her bit she found it very unpalatable so refused to take it.

Both of my children have used Imodium and again it works for them but they are not overly happy with it as it tends to cause them cramping and bloating.

A few years ago Sarah happened upon psyllium husks, they work in the same way as the Questran does. It was initially recommended to her by the GI but in the forum of Metamucil which did not agree with her. Eventually she found the natural husks in the supermarket and after some trial and error they did the trick for her. I do believe that over the years there has been some natural uptake as well so that now she only goes once or twice a day and it is formed. She had surgery 7 years ago next month and has been in remission since that time.

My son had surgery just over 2 years ago and he started using the psyllium straight up and it has also served him very well.

Please have a look at this thread:

http://www.crohnsforum.com/showthread.php?t=13856

If you do down this track please note that you should not any medication or supplement 1 hour before or two hours after taking the psyllium as it may affect their absorption.

Diet can also affect things as well and as Helen has found oils and fats affect my kids too.

Also with your small bowel involvement and now resection please ensure you keep a track of your blood levels of the following and treat any deficiencies:

Iron Studies
B12
Vitamin D
Magnesium
Zinc

Good luck and if you have any questions please don't hesitate to ask!

Dusty. xxx

Hey Becca,

Sorry you had to go through all that, as people above said you are not alone with Crohn's. That's not what you specifically asked, but let me just comment on the use of a few meds you are taking.

5-Asa: there are quite a few threads on here on the usefulness of Pentasa for Crohn's. It's rather questionable whether it really works. 5-Asa works rather superficially, which for UC patients can induce remission, but for Crohn's patients it's much harder to get to remission and stay there with Pentasa. Docs are increasingly phasing it out as a long term treatment.

Remicade: You mentioned you got problems with it, but that you also dread the price. Not sure whether you have insurance now or not, but biologics including remicade are still the best long term treatment. Normally people who started with remicade, but had problems with it, switch to Humira these days, which definitely has one of the best chances of inducing remission in patients these days.

What you haven't mentioned in your post is whether your doc or you ever considered immunosuppressives (azathioprin or 6mp). It's still a rather good option to help get people into long term remission. I have been on aza for 10 years now (with a 2 year hiatus) and while it didn't work for me all the time, I have been in remission for years after my surgery in 2003 with aza and also in deep remission (basically no symptoms at all, no diarrhea at all, no pain, no cramping) for the last 1 and a half years (of course not just because of the azathioprin, but also because of managing Crohn's long term through sport, vitamin therapy, stress relief etc.). I am also mentioning immunosuppresives, because they are definitely the cheapest Crohn's meds out there. One month supply of aza clocks in at 20 bucks (generics). While you also need blood tests every two months, they aren't extremely expensive either.

One quick point about imodium: this is a rather controversial topic. You said your doc has said it's ok to take it. I had GIs tell me to never take it and some told me the occasional use is ok. Imodium can potentially increase inflammation, but that is not clear. Personally, I would rather try to get the inflammation under control and into remission with no diarrhea than to mask symptoms through imodium.

I hope you'll get to remission soon. My suggestion, as above, would be to think about long term Crohn's meds other than Pentasa.