HealingWell
Search Close Search
☰

depression is hard to fight or is my problem self pity

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/21/2012 7:52 AM (GMT -5)
Today is a bad day for me I just want to cry, I went to the dr on thusrday. he told me I couldnt take the entocort no more because of side effects. so he switched me to a nother round of flagyl and pentasa, he said if i loose any more weight he is sending me to the university.I lost 5 lbs in 2 months. But I cant stand to eat I eat  I get sick and the pain. So saturday and sunday I took immodium so I could eat, I feel awful today I had stomach cramps last nigh so bad. I couldnt sleep and today I am bloated, now the dr says I am not convinced its chrons I think it may be a bacteria, I am so sad today. I dont know why I have been sick along time. Why am I sad, I used to eat regaurdless of the pain, I ate I got sick. Am I just tired, or am I a whiner?? I hate being sick. In total in 7 years I went from 140 to 131lbs is that so bad, I needed to sound off. The pharmacyst said pentasa is a last resort drug because I have tried the rest and they didnt work. The entocort after the first eight weeks started working, I thougt about the ocp 3, and accupuncture. something different any thoughts??

thanks for being there. smilewinkgrin

Posted 5/21/2012 8:42 AM (GMT -5)
I'm so sorry you are in so much pain that you don't want to eat. Has your doctor done any tests to confirm a crohns diagnosis? Tests like a colonoscopy or endoscopy? If not, I highly recommend doing so.

Also, pentasa is a first line medication - it is like taking Aspirin for your intestines. There are way more powerful drugs that canbe used to treat crohns disease.

I think not having a diagnosis and course of action to relieve your pain and suffering can be very demoralizing and depressing. However, your weight loss doesn't sound extreme. 9 lb loss in 7 years is pretty nominal if you ask me. I don't think it is alarming. When my husband was first diagnosed, he lost somewhere between 45-50 lbs in 6 weeks! Now, that was alarming. He went from 185 lbs to 135-140 lbs in that time.

Hang in there. I hope you can get a clear disgnosis soon. In the meantime, have you considered bolstering your diet with meal replacement drinks like ensure to keep your calorie count up? I did this with my husband once he was able to take in liquids, and even now, if he flares, I supplement with these to keep him taking in adequate calories.

PV
Posted 5/21/2012 8:59 AM (GMT -5)
I had a colonoscopy in april no changes just inflamation.the capsule showed ulcers in my small bowel. but he isnt sure what I have, I am confused. He said his concern is I lost 5 lbs in 2 months, but overall its not alot. I am just tired of the cycle, I eat I get sick. I dont hardly even get hungry any more. I tried ensure, and protien bars. they give me the diaherra. I called the pharmacy because I am on entocort and pantesa, I am winding down on the entocort but I cant quit it cold turkey. Yesterday so I could eat I took 3 immodium last night I had such stomach cramps and today I am exausted, My sistrer recommended I try aloe vera, but the lady when I went to order discouraged it because I have a heart condition. I just want to get better. I have only had One remission sicne 1993, I have lived on immodium. I am sick of being sick. What does you husband do to get remission??? thankyou.
Posted 5/21/2012 9:01 AM (GMT -5)
Nah, I don't think you're a whiner. Some things just wear you down after a while. I was a bit like you in that I used to eat whatever, regardless of the consequences, but eventually I became too sick and tired of doing that. So I ate less. Lost weight. More than 9lb, I have to say, but it was over a couple of years and not in a few weeks.

Anyway, how underweight you are depends on your height. If you're a shortie like me it wouldn't be underweight at all. If you're a strapping six footer, then it's definitely underweight.

I second meal replacement drinks like Ensure. You could even do an Ensure diet only for 4-6 weeks. It's quite safe, as long as you have enough calories. And a liquid diet is actually a proven method of getting into remission. Even if it doesn't get you into remission, it still would likely make you feel better. I have actually done such a diet, only with Fortisips instead of Ensures (you can only get Fortisips in the UK/Europe, as far as I know). It didn't get me into remission, but it did help. It was also a relatively painless way of getting in more calories.

PS: I'm assuming you were diagnosed with Crohn's in the past? Can't see you being given drugs like Entocort if you weren't. I wouldn't listen to the doctor's doubts. It's conceivable the original diagnosis was wrong; but not likely. Chances are very high you still have Crohn's disease.
Posted 5/21/2012 9:06 AM (GMT -5)
Aloe vera simply would have been throwing your money away, so be glad you can't actually try it.

If you can't tolerate Ensure, is there any other nutritionally fortified drink you can try? Maybe a lactose-free one. You could also make your own drinks, although that runs the risk of leaving out certain vitamins or minerals. At least with commercial drinks you know that everything's that necessary has been pre-added.
Posted 5/21/2012 2:16 PM (GMT -5)
I agree with the above posters - Everyone gets a few days to feel sorry for themselves every now and then, and this disease can run you down emotionally and physically. But once you're done feeling down I would look into a different path for treatment. If your doctor saw inflammation and ulcers during your colonoscopy, then that sounds like Crohn's to me. It sounds like your current treatment is not working, and I would talk about other alternatives.

Your weight loss doesn't sound too extreme, but not eating due to pain and D is not acceptable. Talk to you doctor about different alternatives for D control and pain control (if only to get a meal or 2 in per day without pain). When I am in a flare, I tend to eat gluten-free liquid/soft foods like smoothies, GF soups, yogurt, and eggs. I also drink Orgain, which is an organic nutritional drink that is gluten free (it's pricey, but I think most nurtitional drinks are). Good luck to you!

Post Edited (Myrne) : 5/21/2012 5:55:41 PM (GMT-6)

Posted 5/21/2012 6:40 PM (GMT -5)
I agree with most of the other posters, however, I found that Ensure had way too much sugar and it made things worse for me. I used to drink Glucerna shakes. They tasted better and were lower in sugar although neither helped my crohns :(

I wouldalso like to add that it may be a good idea to get your vitamin D level checked. If you do have Crohn's or UC ther is a good chance you are vitamin D deficient and that can make you feel depressed. It has happened t me before and I am in a pretty nasty flare right now and am waiting for my D results as we speak.

Best of luck to you!
Posted 5/21/2012 6:51 PM (GMT -5)
well today was no better, I should have called in sick. I went to work and sorta faded out got kinda spacey. I forgot where I was and when my husband texted me I started to talk like I was on bluetooth, lol. Man Ist it stress the meds or . am I crazy. I told my hubby I think I need a counselor. He wants me to wait this is the second time in three months that happened. the spacey thing its scarey. I am going to try the drinks and I will call to check my d levels. They were down before to osteo level, so maybe thats the issue. I just want it to end soon. I was diagnosed chrons but now the dr isnt sure but like someone said the ulcers in my sball intestine and the imflammination are signs, I want to get better. May I need to go elsewhere, but this is the first dr that actually listened to me. Oh well hopefully tomarrow will be a better day. thanks everyone I feel better talking.
Posted 5/21/2012 8:13 PM (GMT -5)
I lost 50 pounds in 4 months so my pcp admitted me to get a feeding tube. I then lost 35 pounds more in the next 4 months. I lost 85 pounds in 8 months. I still haven't gained it back. My GI now just tells me as long as I promise to eat 1 meal a day & a snack, and stay hydrated, he won't admit me. He nags me occasionally about eating when I drop even more weight but I usually manage to chug down ensure a few days before my GI appoinments & gain a pound or 2 so I can get to the weight I was at at my previous appointment. It may not be "healthy" but it's better than a permanent tube down my nose.

I saw a nutritionist and she wants me to eat 1000 more calories a day than what I already am consuming, but I'm lucky if I get to 1200 calories. I've found weight lifting helps me maintain my weight. When I work out, I get tired quickly but I gain some muscle mass. Ensure has a lot of sugar but it doesn't bother my Crohn's symptoms & most of the time, my blood sugar is low anyways. Gatorade, smoothies and milkshakes help me fill in my calorie gaps!

Don't feel bad! It's okay. Ever since I went to the "Crohn's Support Group" meetings, I've had less pity parties because I now have other people to vent to who can empathize with me. If you need to see a therapist, theres nothing wrong with that! You have a dibilitating, chronic illness. Most people can't put up with what we go through :)
Posted 5/22/2012 5:09 AM (GMT -5)
how do I find a chrons support group?? this is nice but I think I either need counselor or support:)
Posted 5/22/2012 7:37 AM (GMT -5)
Is your doctor an IBD/Crohn's specialist? Maybe going to the university clinic isn't a bad idea if they have specialist in this field that has more experience? You can get help, and there is hope.

There is support, too. If you live in the US, there's the CCFA. At this link, you can look for local chapters...some of them have local support groups. That's probably the first place I would try.
http://ccfa.org/chapters/?LMI=8


Either your hospital or the nearby university you mentioned could also have support programs. You could start with Crohns/GI specific support groups and expand your search to chronic illness support groups.

I have never used this CCFA information resource center, but they have a phone number on their website and may be able to provide some advice as well:
http://ccfa.org/irc?LMI=2

 

Posted 5/22/2012 12:35 PM (GMT -5)
Yea he is a specialist, I called because I am so sick today on my stomach and I am so tired. They said its the steroids. That the dr would call me back. So now I wait. thankyou
Posted 5/22/2012 5:15 PM (GMT -5)
This darn disease will take it's toll on anybody---you are not alone in how you feel! Just know that there are other medication options out there....whatever you do, don't give up! There is always another option; just make sure you are going through the proper channels to find them!
Posted 5/22/2012 9:39 PM (GMT -5)
Dusty- it sounds like you may need a second opinion or a new round of imaging. Perhaps some new disease has developed that is not responding to treatment. Regarding the depression, I just came out of a two week terrible funk myself-- weeping, despair, malaise-- all while acting like everything was fine at my job and with my friends. I found my B12 shot really helped along with vitamin D and C supplements. Should my depression return in the next week, I am determined to see a therapist.

Ii do suggest you find a counselor, hopefully one who specializes in chronic illness. I am sending you peace and comfort.
Posted 5/23/2012 5:14 AM (GMT -5)
thankyou I called him he ordered bloodwok today my head is pounding and I have no balance and I am nauseaed I feel so bad. when will it stop??
Posted 5/23/2012 10:25 PM (GMT -5)
Hi dusty,
This is such a frustrating disease. I am sorry you feel so ill. I was in a bad flare from Sept. - March this past year and it felt endless and overwhelming. Please don't give up. Keep working with your doctor and be assertive with questions and honest with all of your symptoms. Sometimes it takes a long time to figure out what is wrong and what is going on, but there are many tests and medications to try. Hopefully your doc will stick with you and you will figure it out together. I hope you feel better soon!
Posted 5/24/2012 9:28 AM (GMT -5)
I FEEL ALOT BETTER TODAY, HAS ANY ONE EVER TRIED PENTESA, IS IT LONG TERM DRUG, IMM FINALLY OFF THE ENTOCORT, BUT STILL TAKING FLAGYL, YOU DONT KNOW HOW MUCH THIS SITE IS APPRECIATED BY ME THANKS SO MUCH!!!
Posted 5/24/2012 10:13 AM (GMT -5)
I'm glad you are feeling better today.

Yes, Pentasa is a aminosalicylate. There are several drugs in this class, including sulfasalizine, asacol, and pentasa. When I was first diagnosed in the late 1980's, the doctors tried me on sulfasalizine, but I was allergic to it (many are & develop a rash.) Since then, they've developed drugs in this class without the "sulfa" component.

I was on Pentasa for a long time (over a decade.) I could tell a difference when taking my medicine and I believe it made me feel better. In my case, it was used to maintain a remission not induce one. I always needed steriods to induce the remission.
Posted 5/24/2012 10:13 AM (GMT -5)
More details on this class of drugs at the CCFA website:

http://www.ccfa.org/info/treatment/aminosalicylates

 

✚ New Topic ✚ Reply