Been awhile since I've been here...feeling defeated

[homeschoolmom]

:depressed: Hi everyone, I have been struggling with pains again in my lower right side and constant diarrhea. GI Doc thinks I may have scar tissue since 3 months of prednisone has not helped much. I had a resection in 1999, and he now wants to do a colonoscopy to see what's going on. I always get so wiped out for days after one of these, and the last one I had (2 years ago) he couldn't get very far into my small intestine so I left with no new info. I don't think putting myself through this test is going to show anything, so what do I do? I am so depressed and disgusted with this disease I can't even think straight anymore. I have had colitis since 1972 ( I was 12 at the time i was diagnosed) and was diagnosed with Crohn's in 1998 after 5 years of being told it was IBS. Right now GI doc is talking about surgery to remove the scar tissue, if that's what it is, the thought of another surgery depresses me even more. Sorry for the rant, but I am so discouraged right now I don't know what to do.

 

[Angrybird]

Oh hun, I know this sucks but I would agree that a colonoscopy is needed. If the doc struggled 2 yrs ago who knows what may be going on inside now. Have you had your vitamin B12 checked? If not get this done as if you are B12 deficient this would explain some of the tiredness and I think it was mentioned here somewhere that it can contribute to the depression. Sending lots of hugs and good thoughts your way :hug:

 

[akpatti]

It may be a odd question, but why a colonoscopy...is it because it is in the lower? My doctor does CTs to determine strictures.
I am sorry you are feeling so tired, hopefully they can give you some answers soon and be on the road to feeling more like you.

 

[Angrybird]

Colonoscopy is handy for looking at what is 'on' the lining of the bowel and for doing biopsies and sometimes even treatment. About 4/5 years ago when a colonscopy showed a slight narrowing of my bowel they were able to sort it then and there - this is most probably why I was able to get away with not havng an op until recently instead of back then.

 

[homeschoolmom]

Thanks everyone, I do B12 injections every 3 weeks. I sometimes think that the exhaustion comes from being on the toilet 10 -15 times a day. I know colonoscopies are useful, but if he couldn't get into my small intestine far enough to see anything 2 years ago would he be able to now? I was wondering about a CT too. I had my terminal ilium removed in 1999 plus another section a my small intestine (1 1/2 feet total). In April he switched me from immuran to bi-weekly injections of Humira. I also am now down to 2 days of prednisone (YEAH) and he added entocort 2 weeks ago.

I guess after 40 years of colitis/crohn's I'm feeling so tired of it. I take xanax as needed, maybe it's time for anti-depressants too. What I would give to not have to worry about leaving the house because I'm afraid of having an accident. I have lomotil that I take when I have to go out, but that just seems to make the pains worse....

Waving the White flag! I surrender, and I have never let this DD get me down like this before. Ughhh. I know I have to do something, but I don't want to waste the money on a test that will probably not be helpful...... ahhh what to do. Thanks for you help, just need to chat with people who "get it" sorry for the long rant.

 

[Angrybird]

Rant away, that's what we are here for I think your doc wants confirmation of what he already thinks needs to happen - surgery. After you had the op in '99 did things settle down? If so how long for? Even though it really sucks that this may have to happen again if it can get you back to a good place perhaps it is worth it.

 

[Spooky1]

hi there, i'm in exactly the same boat! i hate to say this but its great when another human on the planet is liviing life like mine. I so hate to hate myself for having this disease but it has literally thrown my life down into the loo. there was so much i wanted from my life but i too, end up so depressed and having complete exhaustion from many visits to the loo i cannot even get on and do things when at home.

the past number of days i have also not been able to sit on my bum cos its so sore i just don't know what to do with myself. i know none of you can actually help physically, but just being here for each and every one of us is a godsend.

naturally i don't have any real advice for you Mom, cos my own gastro bloke said probable surgery. i'm avoiding that like the plague! the pain meds i have to keep cutting out cos they're addictive and loperamide and questran give my intestine the giping pains from hell. but this website makes me feel far more human and acceptable as a person than anyone i know in life, not that i know many!!! i just don't get out.

but good luck with the crohns and hope all sorts itself out for you soon mom.

 

[Gutrot]

Thanks everyone, I do B12 injections every 3 weeks.

have you tried the under tongue drops or sprays? No needles required.

Often the area of the gut that absorbs b12 is damaged and can't absorb it, which is what leads to the defficiency in the forst place, so the tablets don't work, but it can be absorbed through the soft tissue in your mouth under your tongue.

 

[homeschoolmom]

I did feel better for awhile, but the surgery made the diarrhea worse and that has never gone away. I am so afraid that if I go through another resection I will never be able to get out of the house. I HATE this DD so much. I apologize, because I know so many of you are going through much more that I am right now.

I am a total mess, right now I'm not sure if I am more a physical mess or a mental mess. I have never let this get to me like it is this time around, what the heck??? I started Zoloft yesterday, we'll see how that goes. Maybe it will make me feel better mentally. Thanks for all your kind posts, sometimes I feel very alone in this.

 

[dette]

Hey homeschoolmum, have you had an elemental diet before?
only i had a resection of my terminal ilienm and i now have fiborous? strictures just before the original surgery site , it causes me really bad diareha? (and bad spelling apparently lol ) the doc put me on an elemental diet to rest my bowel for a bit and to let the flare up subside a bit.
Just a thought but it might be worth looking into.

Ive had years of pred, and entocort (budesonide)
also my doc describes me as having malnutrionally induced psychosis when im in a flare up, (my head goes all over the shop, i feel totally not myself , when normally im completely functioning and normal)
drinking plenty of water will also help nutrient osmolarity within your GI track.

Fingers crossed for you , and that you feel brighter soon

 

[homeschoolmom]

Gutrot, I haven't heard of the drops, but have tried sublinguial (sp??) tablets. I do B12 shots every three weeks, which doesn't seem like enough, but Doc says levels are normal....normal for who? I think those of us with Crohn's require a lot more. Do you also do injections along with the drops?

 

[Angrybird]

Hi, I think Dette has made a good point about malabsorbtion. Are they only checking your B12? What about vit D and other stuff, I think it has been mentioned before that if all your levels are out this can have a big impact on how you are feeling mentally about things. Having nutrional drinks instead of food could help with symptoms to a certain extent as you will not be aggrivating the bowel with anything. However if you are on pred and even this isn't helping with the inflammation this will not 'fix' you.

 

[homeschoolmom]

Dette and angrybird I sure malabsorption is playing a huge part in my mood. What is an elemental diet. Strictures at the surgery sites is what Doc is thinking. Everyone here has been so helpful. Detta, 'malnutritionaly induced psychosis' probably describes me perfectly. Thank you all for your ideas, now I have several things to discuss with my Doc.

 

[Angrybird]

An elemental diet is where you don't have any food at all and are given a liquid 'food' either via milkshakes or NG tube. This gives your bowel a chance to really settle down although as far as I am aware this will not heal the inflammation.

 

[homeschoolmom]

Angrybird, thanks. There is no way anyone is coming at me with yet another NG tube.....not if they want to survive. LOL those things are beyond horrible. YUCk

 

[dette]

hi homeschoolmom
this is the elemental028 http://www.shs-nutrition.com/images/uploads/Elemental_028_Extra_Liquid.pdf it is all the basic nutritional vits minerals and essential fatty acids your body needs to survive, you drink these for a few weeks to rest your GI track. its helpful because your body just absorbs almost all of it which cuts down the need to go to the loo. it also has an anti-inflammitory effect because you need to drink loads of water to reduce the osmolarity of them (they are very rich so the more water you frink the better the absorbtion of them)

hpe that helps! xx

 

[homeschoolmom]

thanks Dette, I will check it out.

 

[dette]

Improving electrolyte balance (sounds so simple) can help your mood especially if your going to the loo so regularly. i found dioralyte sachets were handy when head stared feeling a bit wappy from dehydration

Good luck with dr i hope they sort out some sort of relief for you
dette

 

[Gutrot]

Gutrot, I haven't heard of the drops, but have tried sublinguial (sp??) tablets. I do B12 shots every three weeks, which doesn't seem like enough, but Doc says levels are normal....normal for who? I think those of us with Crohn's require a lot more. Do you also do injections along with the drops?

The sublingual route, in which B12 is presumably or supposedly absorbed more directly under the tongue, has not proven to be necessary or helpful, though there are a number of lozenges, pills, and even a lollipop designed for sublingual absorption. A 2003 study found no significant difference in absorption for serum levels from oral vs. sublingual delivery of 0.5 mg of cobalamin.[62] Sublingual methods of replacement are effective only because of the typically high doses (0.5 mg), which are swallowed, not because of placement of the tablet. As noted below, such very high doses of oral B12 may be effective as treatments, even if gastro-intestinal tract absorption is impaired by gastric atrophy (pernicious anemia).

Injection and patches are sometimes used if digestive absorption is impaired, but there is evidence that this course of action may not be necessary with modern high potency oral supplements (such as 0.5 to 1 mg or more). Even pernicious anemia can be treated entirely by the oral route.[63][64][65] These supplements carry such large doses of the vitamin that 1% to 5% of high oral doses of free crystalline B12 is absorbed along the entire intestine by passive diffusion.

Low b12 can cause anemia, and irreversible neurological damage.

 

[toml99]

Many of us do need supplemental B12 but there is a question as to how to best take it. Here's a post that I put up last October:

"I have Crohn's and as soon as it was diagnosed my GI doctor tested my B12 level - it was very low (161), and undoubtedly contributed to the fatigue I experienced. I began B12 shots every week, and then monthly, and things got better as my B12 results climbed to 193.

Then my Dr. ran out of B12 serum for three weeks. That was a good thing, because it got me to do some research. I found the following medical article (only including an excerpt):

'The treatment with high oral doses of vitamin B12 thus constitutes a convenient and completely reliable maintenance therapy in pernicious anemia and other states of B12 deficiency, and is a fully acceptable alternative to the conventional method of vitamin B12 injections. This type of therapy (1000 μg B12 daily) was introduced into Sweden in 1964 and is now extensively used.'

Why not give it a try? I tried 1,000mg of sublingual B12 tablets, had some problems with the inactive ingredients, and switched to 1,000mg of regular oral B12 tablets once a day.

Two months later -- my B12 was at 492 (!), my energy level was high, and I never went back to injections. "