HealingWell
Search Close Search
☰

trade off one symptom for another

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/26/2016 4:37 PM (GMT 0)
HI

I am the newbie who needs help again. I recently started on Lialda 2 weeks ago (was already on Canasa nightly). I was diagnosed with very mild proctitis this past year. There were no ulcers seen and the doctor said that at a glance my rectum looked normal but under closer look and biopsies dx was consistent with mild proctitis. I had C diff last November supposedly brought on by the IBD starting and then finally dx with the proctitis this last summer. I recently started to bleed again- in my once a day soft BM so that combined with left sided pain resulted in trying 2 Canasa per day. I had a parathyroidectomy a few weeks ago and then the 2 Canasa didn't seem to be doing the job so doc ordered Lialda 4x a day and 1 Canasa. I was able to get away with 2 Lialda and 2 Canasa and the bleeding stopped in a few days. I am miserable on this Lialda with extreme fatigue and gas. I take it at night and sleep 9-10 hours straight and still feel groggy the next day. Last night I took 1 because I feel like I have traded one bad thing for another. I can't believe that people have said they didn't experience side effects. The gas is from the drug not the UC because its a different kind of pain. I have also been taking Turmeric/Curcumin - Dr Schwartz brand with bioperine and don't know if that is helping or hurting. Could the turmeric be causing the gas pains? I asked the doc about enemas but he wants to do another sig-scope first to determine what is going on. He wanted me to try the Lialda first. This is so depressing because when I started the Canasa this past year --I felt great and could really tell things were calm inside. Now while I have one formed -soft BM per day and no blood... I still feel miserable. I am currently trying 2 Canasa and 2 Lialda... any other suggestions??

T

diagnosed 2016 with very mild proctitis at age 53
2 Lialda-2 Canasa due to recent flare
Turmeric/Curcumin, Slippery Elm, Calcium/vitamin D, L-glutamine 5gms /day, digestive enzymes
Posted 11/26/2016 6:09 PM (GMT 0)
Yes....rowasa 4g. There's really no need for 4 Lialda for mild proctitis.
I would stop the turmeric for now.

Your fatigue could easily be from the surgery as well.....what exactly is the reason you had the parathyroid removal?

Have you had vitamin d checked? I'm assuming you had complete blood tests done before your surgery....are you to have them done after surgery as well?

Push for the rowasa 4g and ask for bentyl antispasmodic.

Let us know how the appt goes.

q
Posted 11/26/2016 7:00 PM (GMT 0)
Quincy

My labs are all fine as I have had many of them this past year due to the multiple issues going on. I am taking Calcium/vit D/multivits etc. I had a benign tumor on one of my parathyroid glands and was actually feeling more energetic post op/ prior to starting the Lialda. The drug puts me into a complete mental fog. I feel more awake today after only taking 1 last night. I do feel like my doc doesn't know what to do with me because he is used to dealing with much sicker patients. He is an IBD specialist at a well known teaching hospital, but I feel like his responses are not ever what I expect. I was using 2 Canasa per day post op and I started seeing blood again so I guess he felt that Lialda x4 was for a flare. I refused to take 4 and stopped bleeding with 2. I asked about the Rowasa and I'm guessing that he hasn't prescribed it to due only having rectal involvement? He told me that if the Lialda/Canasa didn't work then steroid suppository would be next step. I guess I will call him on Monday to discuss things. Can Lialda cause much bloating and gas? It certainly increased after starting it.

Thanks

T

diagnosed 2016 with very mild proctitis at age 53
2 Lialda-2 Canasa due to recent flare
Turmeric/Curcumin, Slippery Elm, Calcium/vitamin D, L-glutamine 5gms /day, digestive enzymes
Posted 11/27/2016 12:53 AM (GMT 0)
Flaring can cause the bloating, etc. Split the dosage of Lialda to twice daily...one in morning, one at night. See if that causes you a problem.
There are 2g dosages of rowasa.

Let us know how the scope goes. Hope you have a smooth recovery.

q
Posted 11/27/2016 2:27 PM (GMT 0)
I completely agree with Q about the Rowasa. I would try this first and foremost.

I personally can handle 2 Lialda but 4 gives me trouble. You can also consider asking your Dr. to switch to another oral med (maybe Apriso or something like that) and see if that would make a difference. Some people do better with a different oral.

Do let us know about your scope.
B
Posted 11/28/2016 10:13 PM (GMT 0)
I do not have a sig scope scheduled yet because the doc wanted to see if Lialda would help. I am taking 2 at night to help with the sleepy side effects. I was also using 2 canasa per day but I skipped it this morning to see if that was causing the increased gas. I have 1 bm per day and haven't seen blood in 10 days. I still do not feel great with digestion and have bloating and gas. I thought today was going to be better as I started out calmer but recently eating, the gas and discomfort begins. I took tylenol for some left side pain as well. I feel very confused as to what is a side effect and what is possible flare symptoms. I am thankful that I do no have diarrhea but I am feeling very depressed regardless. When I started the Canasa this past year, I could feel the overall relief in my GI system. This time although adding Lialda has stopped the bleeding, I still have gas and bloating. Should I just request the sig scope for objective data. My doc is not very good at prescribing based on symptoms alone. Should I be feeling much better on the lialda?? I know I should be thankful that there is no blood or diarrhea but I still don't feel good.

Thanks

T

diagnosed 2016 with very mild proctitis at age 53
2 Lialda-2 Canasa due to recent flare
Turmeric/Curcumin-on hold, Slippery Elm, Calcium/vitamin D, L-glutamine 5gms /day- on hold, digestive enzymes
Posted 11/28/2016 10:48 PM (GMT 0)
I don't believe gas, bloating, or sleepiness to be side effects of your lialda or canasa (they are not listed as side effects). However, increased gas is common from ulcerative colitis as we heal. Trapped gas can cause pain and discomfort. Could be a nocebo effect (the opposite of a placebo effect). Do you have any anxieties or fears of medications?

Are you lactose intolerant? That could increase gas...
Posted 11/29/2016 1:29 AM (GMT 0)
thanks for responding.. trust me I am not nocebo'ing the discomfort. I actually felt a bit better today and I have stopped all supplements for now including turmeric and L-glutamine to see if they could be the cause. My intestines make loud noises and I have some left side pain that tylenol did help with. I would love to believe that things are healing however is bloating a symptom as well? I have not eaten dairy in a year and have been on a low fiber diet. I had c diff Nov of 2015 and haven't been back to my normal old diet since. I don't think diet is a cause at all. I have googled the reviews of lialda to see if I am crazy and people have reports neurological symptoms, tiredness, increased gas etc. I am getting more used to the medication and do not fall asleep within an hour of taking it. I was hoping to take the pills in the am and suppository at night. I have a call out to my doctor and am going to discuss with him because I do not know what I am doing. I think my problem is that my digestion doesnt feel good and I live on fennel tea. I do no know what the symptoms of UC vs just med side effects are because I haven't had the disease long enough. When I first started the canasa, I felt so much better. I am not getting the same feeling from Lialda.
✚ New Topic ✚ Reply