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New from Wisconsin

Hello all,
I was exeriencing a lot of diarrhea, nausea, severe stomach pain especially after I ate something, this all started about 2006.

I attended a fun filled Women's night in Feb, 2007, at the local college where women get to meet others and check out the latest and greatest stuff that is being sold. I met a woman who did Iridology (and other holistic treatments and/or tests), she looked at my iris' and told me that I needed to see a GI immediately because something did not look right for my intestines. Talk about a shocker, I kept thinking how did she know. My sister-in-law who is also my best friend, was with me and insisted that I see a doctor to have this checked out since my father had died of colon cancer. Four months later I had had enough and decided to seek help (after using about 2 weeks vacation for being sick).
The colonoscopy showed moderate to severe Crohn's Disease. Started taking Pentasa 2-500mg pills 3 x a day, rest when possible, avoid stress etc.

You all know the routine.

Thankfully, I have never been hospitalized, but do have to have a colonoscopy every 3 years and see the Dr. every 6 months. He did increase the Pentasa to 4 - 6 x a day if needed and wants to start me on either Prednisone or a low dosage of chemotherapy (not thrilled with either of those options).

Two years ago I quit my job due to the stress and working 60-70 hours a week, with my boss wanting to add more job duties to my schedule (yeah, like I could handle any more). I took it upon myself to say "Enough was Enough" and thankfully my husband has been a huge support.

For about the past 6 months, I have felt that I am getting worse again and am not sure what to do. The past 4 days, I have slept for about 16 hours a day, feel like someone has taken a baseball bat to my joints, headaches, loss of appetite etc.

Any advise from those who have had it much worse than me would be greatly appreciated.

I look forward to hearing from all of you.

Sandi
 

Angrybird

Moderator
Location
Hertfordshire
Hello Sandi and welcome to the forum :)

Just to confirm is the Pentesa the only med you are still currently on? To me this seems an odd med to have been given if you have moderate to severe crohn's as at best this is only usually used in mild cases. When did you last see your GI doc and are you able to get an appt with them quickly at all? It does sound like you could be experiencing a flare and stronger meds may be required I'm afraid. If you are however really reluctant to this another avenue to look into is enteral nutrition as this can have good results at inducing remission without the side effects of the steroids, be prepared for a potential maintainence med long term though. Another thing it is worth having checked is your vitamin levels, it is common for folks with crohn's to have deficiences in this area and a low B12 for example can contribute to your fatigue.

I will be keeping fingers crossed that you can be feeling better soon, please keep us updated on how you get on.

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Hi Sandi and welcome to the community.

I echo Angrybird on all counts. When you said you're only on Pentasa I cringed.

When was the last time you had testing done to evaluate the full extent of your disease?

All my best to you.
 

Cat-a-Tonic

Super Moderator
Hi and welcome, fellow Wisconsinite! What a small world, I am from Oshkosh, lived there from birth until I graduated from college (I live in Madison now). I can't add much more to what the others have already said, but wanted welcome you to the forum. :)
 
Pentasa is the only Crohn's med I am on at this time. My surgeon (the one who did the colonoscopy) was the one who put me on this and has suggested recently that I go on Prednisone or possibly low dosages of chemotherapy.

Since I originally posted, I have been back to my primary care physician and will be seeing a GI doc the first part of January. My PCP, feels it is time for me to see a specialist that can be more up to date on what my current issues are and may be able to provide treatment better than my surgeon.

I hope all goes well until then, and can keep hanging on. Keeping the tempations down during the holiday's is always hard (that pie always looks and smells so good).

Thank you all for the support.
 
Hi and welcome, fellow Wisconsinite! What a small world, I am from Oshkosh, lived there from birth until I graduated from college (I live in Madison now). I can't add much more to what the others have already said, but wanted welcome you to the forum. :)


WOW, I live in Van Dyne. Just wish there were some support groups in this area
 

David

Co-Founder
Location
Naples, Florida
Ah, the battle with temptations. I feel you :)

I'm glad you're getting in to see a GI. That makes me feel a lot better. Please keep us updated as to how you're doing and let us know what the GI says once you get in to see them.
 
I was able to see the GI 2 weeks ago today. He started me on 6-mp along with staying on the Pentasa. He gave me meds to help with stomach cramping and nausea. I realize that the 6-mp is new, but WOW, since starting on it, I have felt great (after about 3 days). I go back in for a liver check and to verify if the 6-mp is working. I cannot believe how fast it worked for me. I am staying very positive and look forward to a long remission.
 

Cat-a-Tonic

Super Moderator
That's a great update, so glad to hear it! I also hope you have a nice long remission! Stay warm in this crazy cold snap we're having. :)
 
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