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atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 10/14/2008 4:31 PM (GMT -7)   
I am new to this board and want to introduce myself. My name is Shawn. I am 34 and married with a four year-old daughter and live in Arkansas. I was diagnosed with Crohn's in 2005 just before we moved to Arkansas. I had not had any problems with the disease and had pretty much written it off until April of 2008.
 
I weighed 208 when the problem started. I started having some mild cramping and gas pains. I waited about 4 weeks to try and get in with an internal medicine doc in town about it. It was another two weeks before I did get in to see him. He put me on Pentasa and a multivitamin. I was losing weight pretty slowly at first (which I needed to lose about 15 pounds anyway). I went through a bought of daily vomiting and terrible nausea for about a week in August. He put me on a medrol dose pack and added protonics. By this time I was down to 188 pounds and getting concerned about how fast the weight was coming off. The nausea and vomiting got under control, but I was still having some abdominal pain. Everything was slowly improving until early September when I started another round of vomiting and nausea. I vomited for 19 out of 22 straight days. I was talking with my doc and he added entocort to help reduce the symptoms. This was not working real well. So he dedcied to refer me to a specialist in Little Rock. When the office called me, it would not be until late October that I could be seen.
 
Late September I went to the ER with abdominal pain that felt like someone was cutting me open with a knife, nausea, vomiting, and dehydration. I was down to 177 pounds that morning (I graduated high school at 195). They put me on IV fluids and checked my potassium levels. I was at 2.9 and should have been around 3.5. they did a contrast CT Scan of my abdomen to see what the problem was. They determined that it was just a major flare of the Crohn's. I was admitted to the hospital to continue fluid and potassium replacement. When my interal doc came around later that day (my wife had not met this doc), she cornered him on moving up the specialist appointment since it was five weeks away. He said that if he could get me in that day, would I be willing to go. We said yes. Three hours later, they transported me via ambulance to the Baptist Hospital in Little Rock. I was placed under the care of a different specialist (one with lots of Crohn's patients at different stages). I stayed in the hospital from Sunday night until Saturday morning. When I got out, I was back up 184.5 but did not have any good plan in front of me yet. The doctor sent me home without nausea or pain meds (big mistake). I ended up calling his after hours number and getting some of both.
 
I went back to see him on Wednesday (October 1) and scheduled a pill cam for the next day. He put me on Prednisone 30 mg once a day and stepping down over 5 weeks. The results of the prednisone were amazing! I had an appetite for the first time in months. I was not feeling too bad after the first week on prednisone, but then had my first step down. I have not been feeling great since. I am down to 164 pounds now and getting really sick looking. Everyday now is a question mark of will it be a good day or bad. I have vomited twice in the last 36 hours and talked with my GI's nurse this morning. She asked if I could make it until my next appointment on Monday (follow-up from Pill Cam). At this point I had taken phenegren and a lortab, so I said yes. I have a feeling it may be a long weekend.
 
I have been talking with my wife about my concerns but I know it is wearing on her very badly too. She is scared that I am not going to make it through this and she will end up having to raise our daughter alone. It is hard for me, and for her I know, not to give into the fear that this disease is creating. I am hoping to gain some valuable information and support on these boards. I have a feeling that I will be venting here for a while until everything gets back under control. Thanks in advance for any support or information you pass along on here!
Shawn
 
Diagnosed with Crohn's in July 2005.
Currently taking Pentasa & MP6


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/14/2008 4:51 PM (GMT -7)   
Two things to suggest: diet and probiotics. For info about the diet, see: PecanBread and there's a thread about diet from this forum here. Probiotics here means a Lactobacillus bacteria supplement available from your local health food store. Look for one that is kept refrigerated. Neither of these will affect your meds, but you can ask your GI about them if you think it good. I would also suggest that you research info on the vitamin needs for Crohn's. Doctors often don't check the details of vitamin and mineral requirements carefully enough so you may not have enough of some vitamins or minerals in your supplement. There are some threads on this forum about vitamins and minerals - just do a search.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/14/2008 5:08 PM (GMT -7)   
Shawn,
You have been through quite a lot already with this insidious disease!
Just wanted to welcome you to HW, the best place to come to - to vent and to get advice from knowledgable and compassionate people.
Jo

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 10/14/2008 6:13 PM (GMT -7)   
First of all, you and your wife can rest assured that you WILL be around to raise your daughter. Period. You definitely have it bad right now, and you have my sympathy, but you will get through this and will get better - either with different meds, surgery, diet changes, or all of the above. So be patient, but be assertive with your doctors.

How long have you been taking the 6MP? What's your dose? It's possible that is contributing to, if not causing, your nausea and vomiting -- it's one of the side effects for some people (not all).

A stricture could also cause the vomiting. Did the CT scan show a stricture (a narrowing of the intestine)?

Also, let us know what the capsule endoscopy results are.

Since you do seem to have highly active disease right now, you might be a good candidate to jump right up to the "big guns" of medications, namely Remicade, Humira, or another along those lines. At this point, with your severity, Pentasa is probably a waste of time and money.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/14/2008 6:48 PM (GMT -7)   
Hi and welcome to Healing Well . It is a bit scarry at first and it takes some time to get straitened around with meds. Low roughage diet helped me alot and ensure can help with the weight lost ,My potassium was low too when I first got diagnosed. B-12 is another thing alot of us have problems with. Hope they can tell you more when your test is in. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 10/15/2008 7:28 AM (GMT -7)   
My doctor put me on a high fiber diet when I left the hospital. Some of the stuff I have been reading about diet and Crohn's says to stay away fropm high fiber food because it is too much bulk. Does this sound strange to anyone else?

I have been on 6MP for two weeks now, but don't know the exact dosage. I take two pills once a day. When I was in the hospital I not only had the CT scan, but I had an endoscopy, colonoscopy and barium swallow series. the barium swallow showed a narrowing at the end of the small intestine and start of the large. The endoscopy showed only mild inflammation of the stomach. and the doc did not say much about the colonoscopy results. I am getting anxious for my follow-up on Monday afternoon. I am seriously considering asking about another med because my wife and I neither one think the Pentasa is working. I am guessing it is not strong enough.

Another question: What do you guys recommend for OTC pain meds? There are times that I get to hurting a little bit or get a headache, but I don't want to take a lortab because I need to function at work. I am hesitant to take ibuprofen, which usually works really good for me, because of the flare of the Crohn's. Tylenol does not seem to cut it though. Just wondering what your thoughts were.

Shawn
Shawn
 
Diagnosed with Crohn's in July 2005.
Currently taking Pentasa & MP6


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/15/2008 4:35 PM (GMT -7)   
Hi Shawn Ibprofen is not good for Cder's as it causes bleeding . I don't take pain meds as I only have joint pain and so I take an occasional tylenol. Hopefully others will come along and answer your question. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 10/15/2008 5:16 PM (GMT -7)   
Welcome to HealingWell Shawn! Sorry you are having such a rough time right now, but things will eventually get better. You are having a major Flare right now ( its the nature of our disease). One thing I'd worry about now is hard fiber. I don't think you need that right now, in fact if your bowel is partly obstructed or badly ulcerated, it could really do you serious harm. Have you ever though of trying a liquid diet temporarily? Maybe resting your bowels might be best right now.
As for pain meds, since I have had to endure frequent kidneystones thanks to Mr. Crohn's, I have frequently used up to 15mg of Hydrocodone at work. I found that after awhile your body will adjust to the meds. As for OTC meds, only Tylenol is safe for us, most NSAIDS can increase or cause intestinal bleeding..
Hang in there!

Sincerely,
Matthew

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 10/15/2008 5:35 PM (GMT -7)   
Welcome!

The disease is really scary when first diagnosed (and even after one has had it for awhile). A few months after I was first diagnosed, feeling absolutely horrible, I looked at my dog and honestly thought he was going to outlive me. I didn't even think I was going to make it to age 30 (I was 25 at the time).

Now I look back and laugh (kinda) but am saddened that I genuinely felt that I wasn't going to make it very long. As long as you listen to your doc, (try) to stay positive, keep the faith, and FIGHT you will be fine. Just take care of yourself!

You will make it through this beast! Take care and please keep us updated!!

-Emma =)
turboemma.blogspot.com/


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 10/15/2008 9:15 PM (GMT -7)   
Sounds like ur going thru the sme thing i went thru the end of my small intestine (terminal illium,illum) was very narrow bout the size of a lil finger,i was in pain basically every day,very bad nausea,pentasa doesnt do much apprantly,think its time to bring out the big guns for medication.I never got prescribed any pain meds while i was sick which was kinda mean :(
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/15/2008 9:57 PM (GMT -7)   
Tylenol does not work very well on inflammatory pain because it is not anti-imflammatory. The simplest way to get anti-inflammatory benefits is to take a good probiotic. There are a large number of different combinations of bacteria available, some better than others. For simplicity, here is a link showing a good one. You can probably get it from your local health food store (phone around) but there are many different combinations that have the name Primadophilus from Nature's Way, so you need to get the one shown. You don't want formulas that have Bifidobacter bacteria in them and you don't want one with added FOS (a pre-biotic or bacteria food source). If you scroll down the page, there are three other offerings that are not suitable. The first one does not have as much anti-inflammatory action from the selected strains and the other two have bifidobacter (bifidus) strains in them.

The narrowing at the end of your small intestine is probably responsible for your vomiting. You may be having partial blockages there as food passes that spot. I am a bit surprised that you have been put on a high fiber diet when you have this restriction of the bowel. How is the fiber taken? If you are taking a fiber supplement, that could be trouble. Also, if you are getting fiber from wheat bran, that may also cause problems. In my case, I had to eat some wheat so that they could check me for celiac disease and so I added a wheat bran cereal to my diet. That lasted two days before I decided that the pain from eating the cereal was a sign of serious trouble if I kept it up. Reactions to wheat and gluten are a common experience here, even though there is no diagnosis of celiac.

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/16/2008 9:36 AM (GMT -7)   
The best thign I have found for headaches is Exedrin Tension Headache - it contains NO aspirin, just tylenol and caffeine. This is the only hope I have of stopping headaches.

I imagine we all have been where you are now. I got down from 130lbs to 92lbs when I first got sick. I too was sure I would die. This too shall pass. I agree that you should go on a liquid diet for a few days. Sometimes this is the only help for it. Once you go back on food, you need to keep a chart of what food you ate when your next flare comes. Some can eat high fiber diets. I cannot bare fiber. Everyone is different.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 10/16/2008 3:39 PM (GMT -7)   
Beave,

My 6MP dose is 100 mg a day. I started taking it about two weeks ago. I have read that it can take 3 - 4 months to now if it will work, is that right?
Shawn
 
Diagnosed with Crohn's in July 2005.
Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Potassium Supplement, Enalipril 10 mg/day (Blood Pressure), Prednisone 15 mg/day (currently), Lortab for pain & Phenigren PRN


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/16/2008 4:00 PM (GMT -7)   
Yup, that's correct.
Dx'ed in 1999. No surgeries.

Current meds: 100 mg 6MP. Just finished prednisone taper. Udo's Choice Probiotics (30 billion).
 
Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 10/16/2008 4:01 PM (GMT -7)   
The standard/typical dose for 6MP is about 1.5mg per kg of body weight.  If you take your weight in pounds and multiply by 0.68, you get the dose.  So a dose of 100mg is about right for somebody weighing 150 pounds.  If you weigh more, that dose might be a little low - though it's definitely in the ballpark.  Since you said you weigh around 180, a dose of 125mg might be a little more appropriate.
 
Yes, 6MP is a slow-acting drug, unlike prednisone.  It usually takes 4-6 weeks to start noticing benefits from 6MP, and it can be as much as 4-6 months to notice full benefit.
 
If that's too long to wait, you can either stay on prednisone longer, until the 6MP has more time to kick in, or you can move on to Remicade or Humira, which also can take a few weeks but are generally more effective than 6MP, especially for more severe flareups. 
 
Staying on pred longer can sure do wonders for you symptoms; but the longer you're on it, the tougher it is to get off it, and the more long-term side effects you can have.  A few weeks is a fairly standard course, but when you start talking several months, that's getting too long.  Although some people are on it for years -- and that's only to be done if nothing else works.
 
As for the nausea, have you noticed it get worse since you started the 6MP?  It's often hard to tell if nausea is coming from Crohn's or coming from the medication.  Since you had nausea even before starting 6MP, it might be just from your Crohn's.  But 6MP does cause nausea in some people.  That's why I asked.  It's something to consider.
 
Since you said your test results showed narrowing of the end of the small intestine and beginning of the large, that's *probably* why you've had nausea and vomiting.  Narrowing of that area is very common in Crohn's.  I'm a little surprised they said for you to be on high fiber with that type of narrowing; usually they recommend LOW fiber, low roughage diets.  But everybody is different in the diets they tolerate, so you might just need to experiment and keep a food journal.

Post Edited (beave) : 10/16/2008 5:07:09 PM (GMT-6)


atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 10/16/2008 6:24 PM (GMT -7)   
Thanks, Beave! I am going to talk to my doctor on Monday and ask about the fiber part of the diet. I wonder about the high fiber being too much roughage to go through the narrowing. As for my nausea, I have only had a few bouts with it since being on the 6MP and think that it is probably Crohn's and not med related. I am also going to talk to the doc on Monday. I have noticed the last couple of times I have had to take a Lortab, that instead of lasting multiple hours I am only getting about two hours of pain free time. I hate to use something stronger, but may need to consider having it on hand at least for some of the bad days. I appreciate all of the information and thoughts you are putting my way. I am still so "new" to this disease and trying to learn as much as I can as quickly as I can. Thanks Again!!!!!!!
Shawn
Shawn
 
Diagnosed with Crohn's in July 2005.
Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Potassium Supplement, Enalipril 10 mg/day (Blood Pressure), Prednisone 15 mg/day (currently), Lortab for pain & Phenigren PRN

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